Unauthorised Entry to Football Matches Bill
Lord Moynihan (Con)
My Lords, I thank the noble Lord, Lord Brennan, for successfully steering this Private Member’s Bill through the House. As we have discussed, following Second Reading I did not table amendments in Committee since the Bill had the support of the Commons, is an important step in its own right in addressing the issue of fans entering football grounds without permission, and needed to make progress to finalise its passage through another place in this Session.
However, during the passage of the Bill I sought to encourage the Government to address the abuse and corruption of modern-day touts in the criminal secondary football ticketing market, the inadequate funding for the CMA to bring prosecutions and the growing evidence of corrupt stewards, usually working with someone outside the grounds or on social media, providing a facsimile of a digital ticket to a purchaser for payment. On match days, the purchaser is made aware of what turnstile to go to with the facsimile and which member of staff to speak to in order to allow them illegal entry into the stadium with a master access card or override button on the turnstile.
This is a growing problem and I hope both cases will be considered by the Home Office and addressed in legislation, not least that on secondary ticketing which will hopefully come before the House in the next Session. In the meantime, I wish the noble Lord well and thank him for all his work on this Bill, in the hope that, by avoiding any further protracted debates, the Bill may reach the statute book in this Session.
Lord Parkinson of Whitley Bay (Con)
My Lords, the noble Lord, Lord Brennan of Canton, should be very proud; I do not think there can be many people who have introduced the same Bill in consecutive Sessions, in two different Parliaments and two different Houses, with support from two different Governments. We thank him very much for his part in ushering these provisions on to the statute book.
The provisions flow from the review led by the noble Baroness, Lady Casey of Blackstock, commissioned by the Football Association, into the events at the Euros final at Wembley in 2021 and the sensible recommendations of the Culture, Media and Sport Committee, of which I think the noble Lord was a member in another place in the last Parliament. The previous Government supported these provisions before the general election and these Benches are happy to reiterate our support today. I am glad that extends to my noble friend Lord Moynihan, who was the author of the parent Act that the noble Lord’s Bill will amend.
As noble Lords who have followed our other debates on football know, this is an area of public policy that usually passes me by. I have only ever been to one football match in my life, authorised or otherwise, and I cannot remember who won it, but I am looking forward this evening to seeing a play, “Gerry & Sewell”, which follows the adventures of two likely lads from Gateshead trying to obtain season tickets to see Newcastle United. It began in an arts space above a fried chicken shop in Whitley Bay and is playing the West End for the next two weeks. So, football touches the hearts of us all. We are very grateful to the noble Lord for his Bill and wish it a speedy passage on to the statute book.
Lord in Waiting/Government Whip (Lord Lemos) (Lab)
My Lords, I thank all noble Lords for their contributions to this rather lovely debate. I am sorry that the noble Lord, Lord Parkinson, cannot remember who won—probably very diplomatically. I thank particularly the noble Lord, Lord Brennan of Canton, for championing this important measure through both Houses. As the noble Lord, Lord Parkinson, said, it is a really important achievement.
I also thank the noble Lord, Lord Moynihan, formerly Colin Moynihan, the MP for Lewisham East, where I was one of his constituents and where, despite my heroic campaigning efforts, he kept winning. Today we find ourselves more or less on the same side. I can confirm that the Government have noted his observations and will think seriously about them, and I am glad to have been working with my friend, the noble Lord, Lord Moynihan, from our younger days until now.
This Bill is about protecting fans and ensuring that football matches remain safe, welcoming events for all. Unauthorised entry, whether by tailgating or forced entry, puts genuine supporters at risk, strains security and undermines match day experience. With Euro 2028 matches to be played in England and Wales, we must address these issues now so that fans can enjoy world-class football in safety and confidence. This Bill will create a clear offence of unauthorised entry and empower courts to impose football banning orders. Banning orders are a proven deterrent; they prevent repeat offenders jeopardising safety and send a strong message that dangerous or dishonest behaviour will not be tolerated. I should make it clear that this is not about punishing honest mistakes; its safeguards ensure that only those who deliberately flout the rules will be caught.
This is a proportionate, targeted and necessary measure which reflects the unique public order challenges associated with football that are not seen to the same extent in other sports or events. The Bill is consistent with the broader framework of the Football (Offences) Act 1991. It has enjoyed cross-party support throughout its passage and has been welcomed by both the Football Association and the police as a timely and effective response to a growing problem. It is a fan-friendly measure that will protect the vast majority of decent supporters from the actions of a dangerous minority and will help ensure that football remains a safe, welcoming environment for everybody. I commend it to the House.
Lord Brennan of Canton (Lab)
My Lords, I thank everyone for their contributions this morning. This will be a very brief debate, I hope, which will soon come to a conclusion.
As has been said, this Bill emerged from the review of the noble Baroness, Lady Casey, of the events at the Euros final on 11 July 2021, as referred to by the noble Lord, Lord Parkinson. I previously introduced the Bill in the House of Commons. Unfortunately, although it had completed Committee, it fell when former Prime Minister Rishi Sunak took a walk in the rain; however, it was picked up subsequently by my colleague Linsey Farnsworth MP in the House of Commons. This slightly amended version of the Bill completed all its Commons stages. It is good to be here, having been there at the kick-off, for the final whistle very shortly.
The Bill’s intention is to create a deterrent to the sorts of scenes that were witnessed at the Euros final by making unauthorised entry into major football matches a specific offence subject to football banning orders. I thank my colleague, Linsey Farnsworth, who did an excellent job in steering the Bill through. I thank all the officials, both from government departments and the staff of this House, for their help and advice in giving this Bill its passage. I thank all the Members of your Lordships’ House who have attended and contributed to the debates on the Bill, in particular the noble Lord, Lord Moynihan. I understand from my noble friend Lord Spellar that he was formerly known, in his days as a Minister, as the “miniature for Sport” rather than the Minister for Sport, by Dennis Skinner. As somebody who is equally vertically challenged, I promise him that I will never use that term in public.
I also thank the noble Lord, Lord Parkinson, for his remarks, reminding the public through his football knowledge how in touch we in the House of Lords all are. Finally, I thank my noble friend Lord Lemos for his comments from the Front Bench, and for his support for the Bill. I think we can all agree that, when all is said and done, at the end of the day, football is the winner. I beg to move.
Rare Cancers Bill
(1 day, 8 hours ago)
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Baroness Elliott of Whitburn Bay
That the Bill be now read a second time.
Baroness Elliott of Whitburn Bay (Lab)
My Lords, it is a great honour to be opening the debate on the Rare Cancers Bill today. I thank Dr Scott Arthur, the Member of Parliament for Edinburgh South West, who, when he drew number six in the Private Members’ Bill ballot in autumn 2024, chose this crucially important subject for his Bill. I also thank him for the energy he has put in to getting the Bill to this point, with the support of his amazing team. When my dear friend, Dame Siobhain McDonagh MP, asked me if I would meet with Scott with a view to taking the Bill through the House of Lords, I of course agreed. That conversation led to me having the privilege of supporting the Bill here today.
I want to set out the background to why this Bill is necessary and, in my view, urgently needed. In this Bill, the term “rare cancers” means cancers that affect fewer than one in 2,000 people, according to the UK rare diseases framework. But in many ways, I feel that the term “rare cancers” is misleading, because they represent 47% of all UK cancer diagnoses, which is 180,000 people a year being diagnosed with one of these rare cancers. However, disproportionately, they represent 55% of cancer deaths in the UK every year. While we frequently hear of the many amazing breakthroughs in cancer treatment—and we welcome all of them—that save and extend the lives of many people now living with cancer, in ways that even a decade ago were not possible, those amazing breakthroughs do not apply people diagnosed with one of these rare cancers. In many cases, treatment and survival rates for such cancers have not improved for decades.
With so many people dying of these rare cancers every year, something has to be done to improve the situation. The measures in this Bill take the first steps to do that. I want to talk a little today about why I feel this is so important, and why I wanted to help and support taking this Bill through Parliament. I remember as if it were yesterday the day Siobhain told me what her sister Margaret had been diagnosed with, and the bleak prognosis she had been given. Many people in this Chamber will know someone who is affected by one of these rare cancers and will have had that same experience.
I want to talk about a couple of things that have crossed my life to do with rare cancers. Twenty years ago, my son went to a new school for sixth form. One of the teachers was the mother of his friend at that school. There were various fundraising events for the charity she had set up for inflammatory breast cancer, which my family supported. Two years later, my twins went to the same school for sixth form. One day, my 17 year-old daughter, Georgia, came to me and said, “I am going to do a skydive to raise money for Mrs. Cummings’ charity”. She needed my permission because she was under 18, but there was no way I could not give it. That was the energy Mrs. Cummings had among her pupils.
A few weeks later, I met the incredible woman who was that inspirational teacher: Laney Cummings. I spent two days sitting and chatting with her while waiting for the weather to clear so my daughter to jump out of a plane. I knew why my children and many others thought the world of Mrs. Cummings. I had never heard of inflammatory breast cancer, but after those two days, I knew the symptoms and have been very aware of it ever since. Sadly, only weeks later, Laney died, having been clear of the disease for about eight years.
Then, I came to the awful day I learned how gravely ill Siobhain’s dear sister Margaret was: one of those days you never forget. Baroness Margaret McDonagh was a distinguished Member of this House for many years, known to many here today and a friend to many. I had worked with Margaret in the 1990s at the Labour Party. She was a brilliant organiser in a class of her own, and we became friends. If you were lucky enough to have Margaret as your friend, you were very lucky. She was one of the most loyal, kind and sometimes very scary friends you would ever have.
A week or so after Margaret fell ill, I was with Siobhain on a parliamentary visit, on a day when Margaret was waiting to have her first surgery. I asked how she was and what could be done. To my horror, Siobhain said she had a glioblastoma tumour. She was having surgery that day, followed by other treatments, but the prognosis was bleak. I could not believe that a strong, driven woman such as Margaret, who only three months before had been at our wedding, dancing the night away, full of energy, had in effect been given a death sentence.
Over the next 18 months or so, I watched Margaret fight her cancer with the same determination and energy she always had. Sadly, she did not win this one, and left us two days before her 62nd birthday in June 2023.
The consultant she had found, who treated her with some of the things not available on the NHS, was Paul Mulholland, who gave Margaret many more months with us. He is a man many of us got to know in Margaret’s last campaign, being driven with that same grit and determined McDonagh energy by Siobhain, to find a cure for glioblastoma. While the campaign has raised large amount of money, and now his patients are in its first trial, why do we have to raise money to do this in this way? Why are the huge research programmes within our health ecosystem not doing this?
That is where the Bill comes in. It is a very short Bill, but it will make a significant difference to what we have now and be a first step in starting to tackle the issues for people facing a diagnosis of one of these rare cancers. Its aim is to improve survival rates and outcomes. Clause 1 on marketing authorisations review requires the Secretary of State to review the regulatory framework for orphan medicinal products relating to cancer. The review must consider international regulatory approaches, and a report must be published and laid before Parliament within three years of Royal Assent. It applies UK-wide.
Clause 2, duties of the Secretary of State, which amends Section 1A of the National Health Service Act 2006, explicitly requires promotion and facilitation of research into cancers affecting no more than one in 2,000 people in the UK. It requires arrangements to be in place to enable identification and contact of potential clinical trial participants and creates a statutory role of national specialty lead for rare cancers. That applies in England.
Clause 3, information disclosure for research, amends the Health and Social Care Act 2012 to allow NHS England to disclose information where necessary to facilitate clinical trials into rare cancers, explicitly subject to existing data protection legislation and safeguards. It applies in practice to England.
The Bill has had cross-party support, government support, and the support of many charities, including the Brain Tumour Charity, Blood Cancer UK, Pancreatic Cancer UK and the Less Survivable Cancers Taskforce, to name a few. It passed through the House of Commons unamended and is a Bill that can genuinely impact many lives in a positive way. I look forward to hearing the many contributions today from noble Lords in this Chamber. I beg to move.
Baroness Coffey (Con)
My Lords, it would be rare for any noble Lord in this House not toknow someone affected by cancer. In the UK, nearly 500 people die from cancer every day. Those figures are not abstract, they represent personal lives: families, friendships and futures cut short. I commend the noble Baroness, Lady Elliott of Whitburn Bay, for picking up the Bill and for so clearly setting out its impact. I know Dame Siobhain, but I did not know the late Baroness McDonagh, who was clearly beloved by many. The impact of the Bill will go a long way.
I speak as vice-chair of the APPG for Cancer, but also for a personal reason. The Bill is about giving hope to people such as my friend Dawn, my longest-standing friend from school. Just a couple of years ago, Dawn was diagnosed with a blood cancer with absolutely no prospect of a cure and a likely average lifetime of five years: it could be shorter or longer. Dawn introduced me to my favourite band, Muse, and we have attended concerts together for many years. The thought that there may be no more of that by the end of this Parliament is almost unbearable. This is what cancer takes: not just life, but shared moments and plans for the future.
It is increasingly common, and deeply troubling, that people are diagnosed either without clarity about the type of cancer they have, or without a clear understanding of treatment options because their cancer is so rare. As the noble Baroness set out, rare cancers may be individually uncommon, but collectively they are anything but rare, and around one in four diagnoses is for a rare or less common cancer. The consequence for tens of thousands of adults and children each year is that their experience of cancer is then markedly worse than that of patients with more common forms.
The outcomes of patients with rare cancer are consistently poorer. Diagnosis, if it can be done at all, takes longer; specialist expertise is harder to access; clinical trials are more difficult to find; and treatment options are limited. This is not because the science is beyond us—I hope—but because our system has not been designed with rare cancers in mind. The Bill seeks to address that gap.
I commend Dr Arthur MP for using his place in the Private Members’ ballot to stick to his guns and get a Bill addressing this issue. I must admit that, when I first saw the Bill, having been Secretary of State, I was a bit surprised that he felt that specific legislation was needed on identifying this research. But, having spoken to him about the Bill, I understand why he has done this. He was right to press Ministers and the department for change, and he explained to me some of the personal impact that this issue had had on him.
The Bill recognises a simple truth: pharmaceutical investment naturally gravitates towards issues affecting larger numbers of people and, without targeted intervention, rare cancers have fallen through the cracks. The Bill provides that intervention in a proportionate way, working within existing institutional frameworks.
The Bill tackles a major barrier to progress. It is good to see my noble friend Lord O’Shaughnessy here, who did a brilliant review on clinical trials—so I will avoid talking about that. However, it is important to recognise the history of things such as the Covid vaccine, when so many people coming forward to offer to be in trials was one of the reasons why it was able to be developed and allowed to be deployed as quickly as it was.
The Bill should also improve co-ordination. Rare cancers demand specialist knowledge, yet expertise is fragmented. Therefore, the creation of a national specialty lead for rare cancers will provide strategic oversight, promote best practice and, I hope, bring together research, data and clinical insight that are currently too often siloed. It would be great to understand whether the Government have yet identified who that special lead might be.
On the issues of regulating marketing authorisations, we need to make sure that the regulation is agile enough to support small patient populations, innovative trials and precision medicine. I have no concerns that safety standards will be weakened.
Delayed diagnoses, ineffective treatments and fragmented care are not cost-effective. We need to get to a point where it is not just economically sensible but absolutely vital to pursue this, to give hope to people.
I flagged in advance to the Minister that I wanted to ask a couple of questions. One is technical; it is simply to ask about the references to the NHS in this Bill. I am hoping she can assure me that the coming Bill to abolish NHS England will explicitly address this. The other is linked to Dame Siobhain McDonagh’s ongoing concerns about the NIHR and trials. Funding was provided, but not enough of that has been spent and not enough has been done. Can the Minister set out a plan for the work?
This Bill can and must give a new focus and impetus to exploring cures for rare cancer patients, that is why I commend it to the House.
Lord Patel (CB)
I thank the sponsors of this Bill, Dr Scott Arthur and the noble Baroness, Lady Elliott of Whitburn Bay, for bringing it to this House. Noble Lords must excuse me if I am a bit emotional after listening to the stories, because I too have experienced grief recently due to rare cancer.
I support this Bill strongly, and I hope we will give it swift passage through this House, unamended, so that it can be on the statute book. However, I have one or two concerns. First, I understand the need for the review relating to marketing authorisation, because we need drugs to be developed urgently and we therefore require regulation to change to allow for this. I look forward to listening to the noble Lord, Lord O’Shaughnessy, about the novel ways in which clinical trials can be conducted to speed up this process. I have concerns about the timelines. The Bill gives hope to people with rare cancers, from diagnosis of terminal illness to, we hope, treatment. That is what we hope the Bill will do, but a timeline of three years to carry out a review, with no plan for implementation of that review, seems rather long. Timelines for processes and progress are measured in years, while timelines for tumours to advance are measured in weeks. Patients with rare cancers cannot wait long, so I hope we will address the issue of timelines.
That applies also to the reports that are to be produced every three years, as indicated in the Bill. The idea that there will be a lead clinician for specialist rare cancers, with a duty to guide, co-ordinate and promote research for those cancers, is a good one. As we have heard, funding for rare cancers is abysmally low—about 1/10th of total government funding for research related to cancer goes to rare cancers. That must change, because 50% of deaths related to cancer are the result of rare cancers. Unless we change that, we will not make a bit of difference.
Research is important, but the bedrock of research is the requirement that all these rare tumours are genetically sequenced, so that drugs that already exist can be repurposed to treat other diseases. I will give the House an example: BRAF V600E, the gene associated with certain forms of melanoma, was found to be important in effectively treating certain kinds of brain cancer, and in successfully treating people with rare breast cancers. Charities such as Salivary Gland Cancer UK, which has given me a good brief, and Brain Cancer Justice have pleaded for genomic sequencing of tumours. We must do this for each and every case, to build up a registry—not just of patients who have suffered from rare cancers but patients who are on the register with a tumour.
As Brain Cancer Justice has asked for, we should make sure that tumours are frozen at the point that they are obtained. Without frozen tissues, we will not be able to carry out molecular studies in the future to determine whether there are genes that are affected, and therefore drugs that could be developed related to those genes. It is important that we create a registry, not just a database of patients. I hope this Bill gives much hope to patients, and I hope it will get on to the statute book.
Lord O'Shaughnessy (Con)
My Lords, before beginning my speech, I draw attention to my entry in the register of interests, particularly my involvement with Cambridge University Health Partners, Newmarket Strategy and Health Data Research UK, and in particular as a patron and adviser of the Tessa Jowell Brain Cancer Mission, of which more shortly. I congratulate the noble Baroness, Lady Elliott, on bringing this Bill to this House, and Scott Arthur on introducing it in the other place.
This House has an excellent and long-standing record of promoting innovation in care and research in cancer. The noble Baroness has already talked about and referenced the campaigning of our sadly departed friend Baroness McDonagh; we can think back even further to the Medical Innovation Bill, introduced by the noble Lord, Lord Saatchi, under not dissimilar circumstances.
Today, I pay tribute to, and encourage us to learn from, the example of another dear and sadly departed friend of this House: Baroness Jowell, or Tessa, as everyone knew her. Eight years ago this month, and only months before her own untimely death from glioblastoma—unfortunately, a not so rare cancer—Tessa inspired this House and this country to do more. She wanted us to give the word that both my noble friend Lady Coffey and the noble Lord, Lord Patel, have already mentioned, which is hope—hope to patients and hope to their families. When she finished, it was an extremely emotional event. Those who were there will remember it. The House rose and rightly applauded, in itself a highly unusual response, but one that was absolutely deserved.
It was my privilege to respond on behalf of the Government that day. We were able to make a number of commitments to move forward—of course, in a very typical way, Tessa was talking not just about her cancer but all cancers. Immediately afterwards, therefore, we brought together all the parties in the brain cancer space—charities, NHS England, the NIHR and others—and the Brain Cancer Mission was born, in her name and in tribute to her. Whether or not those are rare cancers—GBM is sadly quite common, while others, such as medulloblastoma, are incredibly rare—they all suffer from the same kinds of problems when it comes to treatment and research.
The aims of the Brain Cancer Mission are to improve the quality and equity of care, to strengthen workforces, and to accelerate research, development and innovation. I am delighted to say that, thanks to the leadership of so many people—the charities that have been involved, the team and others—it is doing, and has done, amazing things. It has supported 32 hospitals to improve the quality of care, 14 centres of excellence in neuro-oncology for adults and 11 for children, a fellows programme that is supporting hundreds of researchers, an academy that has trained over 1,500 neuro-oncology staff of all kinds, and the largest dataset for neuro-oncology ever established. In conjunction with the charity Brain Tumour Research, it has created a novel therapeutic accelerator.
Sadly, though, there is so much more to do. Brain cancer is the biggest cancer cause of death for children, and indeed for adults under 40. Take GBM, for example: late diagnosis, a 12 to 18-month prognosis, and only 5% of people surviving more than five years. Those statistics are repeated over and over for all brain tumours and for all rare cancers, and the standard treatments have been unchanged for decades. That is why this Bill is so important.
I want to speak quickly to the Bill’s three clauses. The first deals with marketing authorisations, which the noble Lord, Lord Patel, has already mentioned. The MHRA has made some progress through what it calls its international recognition procedure, but we need to go further and faster. I look forward to hearing from the Minister about what is happening to make sure we can accelerate those innovative treatments through to patients.
Clause 2 talks about a duty to support research. Eight years ago, at the government Dispatch Box, I made a promise that we would spend £40 million of NIHR money on brain tumour research, but we have not yet. The NIHR has been a willing partner, but we are not yet supporting that research to the degree we should. Again, I look forward to hearing from the Minister how that commitment will be met—and well beyond, and for other cancers, too.
Finally, Clause 3 deals with data. The noble Lord, Lord Freyberg, introduced a debate on this subject some years ago—in itself, it is a whole other subject that we could talk about. However, I strongly commend the clause, as it reflects the recommendations that were made in my own review of clinical trials. We need to go further—patients would be amazed to find out that their data is not being used to find trials for them. That is where the public is, and the law needs to catch up.
I end by again thanking the noble Baroness, Lady Elliott, for introducing the Bill, and reminding the House that Tessa invited us to approach the fight against cancer not with fear but with courage and compassion. That is what this Bill exemplifies.
Lord Blunkett (Lab)
My Lords, may I take one minute of the House’s time? I commend what was just said by the noble Lord, whom I was pleased to work with many years ago, when he was the Minister. I am very pleased that he recalled the last contribution that my long-standing friend, Baroness Tessa Jowell, made in this House. I had the privilege of being the speaker immediately after her, which was one of the most difficult occasions of my life—
Lord in Waiting/Government Whip (Lord Leong) (Lab)
I remind my noble friend that his name is not on the list to speak.
Baroness Finlay of Llandaff (CB)
My Lords, I am sure that, not only in this House but across the country, people are grateful to Scott Arthur MP and the noble Baroness, Lady Elliott of Whitburn Bay, for introducing this incredibly important Bill.
I declare that my working life has been in palliative care. I have looked after many children and adults with rare cancers, including some very close to me and some in my family. They often seem to have missed out on the research agendas at an early stage, yet they all are incredibly generous, saying that they know a study may not help them but it will help others.
In the 1970s I worked in a paediatric oncology unit as the early MRC trials were conducted for children with leukaemia. The prognosis was appalling but, because of the huge trials, the outcome is completely different today. This week I met a young man, Lewis, who described the intensive chemotherapy he endured— which is very novel and complex—as brutal, but he knew that without the research of previous years, he would not be alive and well today.
Ocular melanoma illustrates why the Bill is so urgently needed. These patients are very often young, and the primary treatment is to try to cure the malignancy, but that is not always successful. Once liver metastases occur, the standard NHS treatments available have remarkably poor outcomes and have an effect only in a small genetic subgroup, extending life expectancy by under six months. Some 60% of patients with metastatic uveal melanoma have no approved treatments available to them that are specific to their disease. They rely on other drugs developed for skin cancer, a completely different disease, which have limited if any benefit.
For 25 years, novel management of the cancer through percutaneous hepatic perfusion with melphalan chemotherapy, commonly known as chemosaturation, has been researched. It delivers high doses to the liver through a tiny catheter fed up through the groin, while filtering blood to protect the rest of the body. The liver deposits shrink, some dramatically, with an overall 84% clinical benefit rate with improved quality-of-life markers. Two UK centres, Southampton and Manchester, undertake this and are researching it. Survival improvement is, on average, over 20 months, which means that it is funded in the USA, Germany and several other European countries—but it is not funded here. Patients have to crowdfund to have this treatment that extends their lives significantly.
This is a very rare cancer. Generating the level of evidence required to submit to NICE has been difficult, and funding is not available. Research is essential. The national lead on rare cancers must be able to link across the UK for every person to have the opportunity to participate in research and benefit from advancements that develop through fast-track programmes. The national lead will need to address time-limited interim access pathways to clinically appropriate treatments for rare cancers—while longer-term commissioning decisions are under consideration—where published clinical evidence and specialist expertise already exist. Time is not on the patient’s side.
When will the clinical lead be appointed? Is the database already live across the whole of the UK? Will the lead be able to review individual funding requests for exceptionality where no alternative exists, so that patients with rare cancers are not left without access to life-extending treatments and, importantly, so that they and those who love them are not left without hope?
Lord Bourne of Aberystwyth (Con)
My Lords, it is a great pleasure to follow the noble Baroness, Lady Finlay, who always speaks with authority on these issues. I particularly agree with her and the noble Lord, Lord Patel, on the timescales; anything that can be done to compress them would be very welcome.
I associate myself with others who have congratulated the noble Baroness, Lady Elliott of Whitburn Bay, and thanked her for bringing forward this extremely important legislation. I also thank the honourable Member for Edinburgh South West, Dr Scott Arthur, for introducing the Bill in the other place. Although we spend a lot on cancer research funding, we do not spend nearly enough, and this legislation will help with that.
There are three key things about this legislation; they have been referred to, but I too will stress them. The first is about the role of the Secretary of State in relation to orphan drugs—treatments that pharmaceutical companies do not pursue because of a lack of commercial return. That is something that a review will highlight, and action needs to follow from that.
Secondly, the contact registry is vital. This legislation will facilitate that work and bring it forward. My noble friend Lord O’Shaughnessy has done a lot of work in that regard, and I am sure that his contribution to this legislation will be considerable.
Thirdly, the legislation also provides, as has been said, for a named individual responsible for overseeing the delivery of research into rare cancer treatments. Nothing could be more vital than having that champion against rare cancers, and I very much welcome that.
I will move from the schematic and general thrust of this legislation to the deeply personal. The fight against cancer—against any illness—should unite us all. Indeed, it does so irrespective of party, race, colour, gender, age or social background. The very words “rare cancers” lend to cancer an exoticism it does not deserve. To sufferers and to their families and friends, it is a cancer, plain and simple—a cancer that they want to combat and defeat.
One such sufferer, whom I know and who is in the Public Gallery today, is Dan Horrocks. He is a parliamentary assistant in the Commons. He is a father, a husband and a four-times cancer survivor. He has fought this dreadful disease—in his case, brain tumours—over the last 14 years. For Dan, and for millions of others of sufferers and their families and friends, this legislation is more than welcome, and it deserves our wholehearted support.
Baroness Morgan of Drefelin (Lab)
My Lords, I am absolutely delighted to take part in this Second Reading debate. Although we are only a third of the way through the speakers’ list, this has already been a very moving—as well as extremely well-informed, interesting and expert—debate. Perhaps it shows the House of Lords at its best. I congratulate my noble friend on bringing forward this Private Member’s Bill and on speaking so eloquently and personally about why she is doing this.
As we have already heard, rare cancers often have lower survival rates. When we look at the number of people being diagnosed with rare cancers, “rare” gives the wrong impression, because around 52% to 55% of all cancer deaths can be attributed to rare cancers. Acute myeloid leukaemia—AML—has a five-year survival rate of just 22%. Almost 80% of those who are diagnosed with AML today will not be alive in five years’ time—that is such a tough diagnosis—and only half will survive beyond six months.
I want to pay tribute in my short remarks to the work the charities do across the sector—charities that often have no staff and are peopled by those with direct experience of loss, of the cancer type itself and of dealing with real challenges in access to treatments. Those charities often come together in the organisation, Cancer52, which I am president of. They have long been calling for more investment in research into rare and less common cancers. They do this, as we have heard already, because research is absolutely key for transforming survival rates.
These cancers are diverse, complex and affect a large patient population, but, as we have already heard it so eloquently explained by the noble Lord, Lord Patel, research is difficult in rare cancers. Populations of uniquely sequenced types of cancer are very small, so it is extremely difficult. Ideas such as those that the noble Lord presented around sequencing and repurposing all progress through greater attention and more funding for research, which the Bill aims to deliver, and will further incentivise research and investment in treatment of rare cancer types.
I am particularly interested in the provision in the Bill to appoint a national lead for rare cancers to ensure that patients are offered participation, for example, in relevant clinical trials, for far too often patients diagnosed with a rare cancer are not offered the opportunity to take part in trials. Cancer52 recently did a survey of 1,400 patients and found that 82% were not offered the opportunity to participate in a clinical trial. A Leukaemia UK research survey echoed this sentiment, finding that half of all leukaemia patients were not given the opportunity to participate in a trial.
I support the measures in the Bill. I support the need to create a focus on rare cancers, on orphan medicines and so on. I look forward to hearing from the Minister an update for the House on the work being done by the Government, through the development of plans such as the cancer plan, to tackle the real challenges of access for patients with rare cancers.
Baroness Browning (Con)
My Lords, it is a great pleasure to follow the noble Baroness in her contribution this morning. This short but very important Bill was brought from the Commons in July last year. Many of us feel we have waited a very long time for it to appear on the Floor of this House, so I very much welcome it today.
I was first contacted about it by one of the many charities which are very involved in this, Pancreatic Cancer UK. Sometimes, when we hear of cancers, whether we are personally involved or not, we are quite surprised that this cancer is regarded as a rare cancer and to find that there are so many of them—well into three figures. As we have already heard from the noble Baroness, Lady Elliott, 47% of cancers diagnosed each year are for rare or less common cancers. They account for 55% of cancer deaths and include some of the lowest survival rates. In the past, I have been very interested and had communication with head and neck cancer charities and blood cancer charities. Even within one charity, there will be many cancers that are regarded as a rare cancer.
Of course, the Bill seeks to redress these poor survival rates with greater focus, particularly on research. The Less Survivable Cancers Taskforce supports the Bill. It says that the Bill would ensure that there is a named lead in government, as we have already heard, with a responsibility to support research and innovation for rare cancers. As it stands, these cancers often struggle to attract research funding and attention compared to other diseases. A named lead would ensure that there was a strategic focus on rare cancers in government for the first time. This would help to co-ordinate efforts, look at gaps comprehensively and ensure that these cancers become the main priority. I hope that when the Minister responds she might flesh out a little bit how she sees that role developing.
The Bill would also ensure that patients can get better access to and find relevant research and clinical trials. I think many of us have encountered people who, in diagnosis of a rare cancer, or very often just any cancer, are desperate to find trials that are going on. Where do you start to look? Who holds this information? This is a very important part of the Bill. Currently, many patients with rare cancers miss out on potentially life-extending clinical trials simply because they do not know about them. The current system makes it difficult to match eligible patients with appropriate trials, meaning that trials can struggle to recruit enough participants and, potentially, promising treatments cannot move forward. Again, I would like it if the Minister could tell us how the medical profession, starting at primary care, accesses this sort of information when a patient is in front of them.
The Bill places a duty on the Government to review and potentially strengthen orphan drug regulations. The orphan drug regulations aim to incentivise research into rare diseases, because the current incentives for pharmaceutical companies to develop treatments for rare cancers are not strong enough.
I congratulate the sponsors of the Bill in both Houses, Dr Scott Arthur MP and the noble Baroness, Lady Elliott of Whitburn Bay, who brought it to the Chamber this morning in such a lucid way. I hope I am not being optimistic in saying to the Government that Private Members’ Bills never succeed unless government supports them; we all know that. I hope the Minister is going to support this one.
Lord Kakkar (CB)
My Lords, it is a great pleasure to follow the noble Baroness, Lady Browning. In so doing, I congratulate the noble Baroness, Lady Elliott of Whitburn Bay, on the very thoughtful way in which she has introduced this important Bill. I must remind noble Lords of my own registered interests as chairman of King’s Health Partners, chairman of UK Biobank and chairman the Office for Strategic Coordination of Health Research.
We have heard that rare and less common cancers represent a substantial burden of disease—some 47% of diagnoses and some 55% of deaths. This is striking, because the poor clinical outcome has been attributed to a lack of research, a lack of co-ordination in care and a lack of application of resources to ensure that clinical outcomes can be improved. The Bill before your Lordships today addresses all these matters by ensuring that there is greater accountability, that regulation is improved and, most importantly, that we can drive forward a meaningful research effort for a series of cancers that represent, by themselves, small numbers of patients but collectively represent, as I have said, a substantial burden.
It is very important, and indeed we have heard it this morning, that the appointment of a national specialty lead for rare cancers is achieved quickly. We have seen in other areas and domains of clinical practice the impressive results achieved through the appointment of such leadership. For instance, the appointment of a national specialty lead for cardiovascular disease some 20 years ago was attended by a substantial reduction in cardiovascular mortality. We have also seen the impact that such individuals can have on the research agenda.
Regulation is vital in incentivising innovation. Numerous reviews and assessments have determined that, in many areas, our regulation is wanting. In this area, the regulation has the potential for a substantially negative impact on innovation, and it is innovative therapies that are going to improve clinical outcomes, so review of regulation is critical. I share the view of my noble friend Lord Patel that the three-year window for delivery of the review of the regulatory framework appears far too long and should be addressed by His Majesty’s Government.
The final part of the Bill is to enhance and promote the research effort. This is critical. The mandate that the National Institute for Health Research, as part of its Be Part of Research initiative, establishes special opportunities for registers for rare cancers is critically important.
However, beyond that, as we heard from my noble friend Lord Patel, it is important that we go beyond just knowing where the patients are and providing patients with the opportunity to participate in clinical research. The register should go beyond and provide the opportunity for appropriate genotyping and phenotyping of rare cancers as a resource to drive future research effort.
In that regard, the sharing of data within the NHS for research purposes is critical. We saw the benefits of that during Covid, when the Secretary of State issued a COPI notice that allowed the sharing of primary care data with UK Biobank and allowed researchers therefore to use that important resource to identify many treatment options and a better understanding of Covid-19.
The sharing of data that will be facilitated as part of this Bill is probably one of the most important elements that will drive forward the opportunity for improving clinical outcomes for those suffering from rare cancers.
Lord Blencathra (Con)
My Lords, it is a bit frightening for me, as a layman, to follow the noble Lord, Lord Kakkar, one of Britain’s top professors of surgery. I congratulate the noble Baroness, Lady Elliott of Whitburn Bay, on introducing this small but important Bill. I support it since I have had a couple of run-ins with cancer in the past—but, so far, I am outrunning it.
I had my first cancer at the age of 32, just two years after being elected to the House of Commons. That was a bit scary, but the excellent doctors at the then Westminster Hospital, just round the corner, fixed that. My Yorkshire Whip visited me and said, in that proper style I admire in Whips, “Eh, lad, you’d better not die on us—we can’t afford another by-election”. However, I am particularly grateful to the brilliant men and women of the Royal Marsden, who chopped out some nasty bits a six years ago. It was not a rare cancer, and in fact it was quite common, but it kills 18,000 people per annum in the UK.
Before looking at the Bill properly I had assumed that there would be a dozen or so rare cancers, but I am shocked to discover there are more than 230 different ones, affecting all ages and every part of the body. Diagnosis of rare cancers can be very difficult, leading to delays, and a lot of research information is often limited to common cancers.
In the time available, I will concentrate on Clause 2. Science is moving at breathtaking speed, and one of the fastest innovative cancer centres in the world is the Royal Marsden Hospital in Fulham. The Marsden and its partner, the Institute of Cancer Research, are translating precision diagnostics, early phase drug development, immunotherapeutics, advanced cellular and gene therapies and AI-driven imaging and data science into patient care—techniques that redefine what “radical” treatment for rare cancer means today.
The Royal Marsden NHS Foundation Trust, in partnership with the Institute of Cancer Research, is widely recognised as a leading expert, one of the top specialist cancer centres in the UK, and in the top four worldwide, for the diagnosis, treatment and research of rare cancers. When we get to Committee, I would like to amend Clause 2 to say that we do not want to appoint a person to be known as,
“the National Specialty Lead for Rare Cancers”,
since I do not think there is a single person capable of undertaking that task. However, the Royal Marsden’s record makes it uniquely qualified to lead this national effort.
It is astonishing what breakthroughs the Royal Marsden is making. There are active programmes at its National Institute for Health and Care Research centre—the Marsden has the only one in the country and has been nominated for it—which translates discoveries from the test bench to bedside care, right across eight translational themes.
The Royal Marsden is noted as Europe’s largest cancer centre, whose expertise is enhanced by more than 2,500 cancer specialists who collaborate in weekly multidisciplinary team meetings to develop personalised treatment plans. It was the first hospital in the UK to use the amazing Da Vinci robot with four arms that have microsurgical tools at the end that can get to the small cancer bits that surgeons’ big hands cannot. If your Lordships want to see something amazing, Google search “Da Vinci robot” and look at the demo. A grape is cut in half, and this robot stitches it together again without tearing the skin. That is why, when they gave me a choice, I said, “I’ll have the robot operating on me, please”, and it did it quite successfully. The Marsden’s Sarcoma Unit is one of the largest in Europe and a world leader in sarcoma research and treatment; as noble Lords present who are surgeons will say, that is one of the many rare cancers the Marsden specialises in.
In closing, the Bill’s measures—especially the careful review of orphan medicinal product authorisations in Clause 1—will protect the incentives that turn radical science into real cures. Putting it simply, if we want the Bill to work, appointing the Royal Marsden as the specialty lead will give the UK the leadership, infrastructure and reach required to make the aims of the Bill a reality.
Lord Mott (Con)
My Lords, I begin by thanking the honourable Member for Edinburgh South West for first introducing the Bill in the House of Commons, and the noble Baroness, Lady Elliott of Whitburn Bay, for bringing it to the House today.
Although I have campaigned extensively on prostate cancer, which is the most common cancer in England, it is important that all cancer patients get the treatment they need. Taken as a whole, rare and less common cancers account for nearly half of all cancer diagnoses in the UK today, as we have heard from a number of noble Lords already. Today I will focus on two key areas: regulation and research.
The MHRA is a highly respected regulator, with patient safety rightly at its core. However, rare cancers pose unique regulatory challenges that cannot always be addressed using the evidentiary standards designed for common conditions. Patient populations are small and often geographically dispersed. Randomised control trials may be impractical, and real-world evidence and international data become even more important. The review of marketing authorisations for orphan drugs is therefore welcome, and it is important that we examine how much flexibility exists within the system to support innovation, including greater use of adaptive licensing, conditional approvals or rolling evidence models, better aligning with other jurisdictions so that data from international trials can be used here, and ensuring a clear pathway for early dialogue between researchers, clinicians, regulators and patient groups so that trials are rigorous and feasible, so that, ultimately, life-saving and extending treatments can be approved as quickly as possible.
There are also challenges around research design. Traditional models of cancer research have delivered huge progress, but they are not always well suited to rare cancers, as we have heard today. By definition, rare cancers have smaller patient cohorts, meaning limited recruitment opportunities. Data may be less robust due to the smaller sample size, and the commercial market for treatments may be less attractive to investors. The Bill’s emphasis on facilitating research and improving patient identification for trials is therefore critical, but this must go hand in hand with regulatory improvement to see safe treatments quickly brought to market.
I will briefly highlight two examples. The first, which has already been mentioned, is glioblastoma, a rare and aggressive brain tumour. Survival rates have not improved in more than 50 years, and treatment options remain limited. Yet the nature of it means that research is complex, trials are difficult to design, and patient numbers are necessarily small, making innovation, improved trial access and regulatory flexibility essential if outcomes are ever to improve.
I briefly return to prostate cancer. Within it are rare and aggressive subtypes that behave very differently from early-stage prostate cancer. Rare subtypes of common cancers such as this can face challenges strikingly similar to those experienced by patients with rarer diagnoses. This is not about competing for resources but highlighting the complexity of these issues.
I support the Bill as one with potential to make a real difference for patients whose diseases have too often been overlooked. We need a research environment that can gather robust data, reach the right patients and be supported to develop new treatment and a regulatory framework that reflects the unique challenges that come with rare diseases to get safe and effective treatments approved as quickly as possible. If we get this right, we can not only improve outcomes for people with rare cancers today but reshape how we think about evidence, regulation and fairness in healthcare for years to come.
Baroness Grey-Thompson (CB)
My Lords, I thank the noble Baroness, Lady Elliott of Whitburn Bay, for bringing this Bill to the Chamber today and I pay tribute to two Members who are no longer with us, Baroness McDonagh and Baroness Jowell, who both had a huge impact on my career.
For about the last year, I have been working with Ceri and Frances Menai-Davis and their campaign to highlight the challenges that face families who have a terminally ill child. Their website, It’s Never You, clearly highlights many of the issues. Their son Hugh had rhabdomyosarcoma, a rare cancer affecting muscles attached to bone, which spread throughout his abdomen. He was diagnosed in late 2020 and passed away in September 2021 at the age of six, after undergoing intensive treatment including radiotherapy. His parents described receiving the diagnosis and the trauma they experienced as being thrown into an ice bath with a concrete weight tied around your feet. Through my work with them, I have an amendment to the Children’s Wellbeing and Schools Bill, which may be debated on Monday, asking for more research to find the true extent and impact that rare cancers have on families and seeking to require the Secretary of State to report to Parliament on the barriers preventing parents being at the bedside of critically ill children.
The Journal of Pediatric Psychology and the Lancet Psychiatry have said that 30% to 50% of parents with critically ill children meet the diagnostic threshold for PTSD. The BMJ Open has said that parents are more likely to experience anxiety, depression and suicidal thoughts, and mothers have a 50% increase in mortality. While there is no current target for research or funding allocation to be spent on paediatric cancer research, it appears that only 3% of current national spend is put into this area because it is rare, but we have heard in your Lordships’ Chamber today that these cancers are far from rare. We have to look beyond seeing it as a market to see how we can truly help people. I would like to see a minimum annual research target being set for rare childhood cancers, and progress being published.
I strongly support this Bill, especially the creation of a national speciality lead, and I hope we can do that at pace. The impact of the Bill will be felt by so many, not just those with a cancer diagnosis but their families as well. We have heard that a number of organisations support the Bill. Cancer Research UK and others have highlighted how many fewer treatment options there are for those with rare cancers. Also, brain cancer patients have been in touch with me to say that they need far more support. This week Ceri and Frances Menai-Davis hosted an event in Parliament, and they now campaign under the banner Parents Deserve Better. Yes, they do, and this Bill will help with that.
Lord Polak (Con)
My Lords, it is an honour to follow my friend, the noble Baroness, Lady Grey-Thompson. The noble Lord, Lord O’Shaughnessy, reminded us of that special day when Tessa Jowell spoke. I was sitting here and—I think this is what the noble Lord, Lord Blunkett, was trying to say—the noble Lord, Lord O’Shaughnessy, replied in that difficult moment with sympathy, empathy and dignity, and I will always remember that too.
I declare my interest as vice-chairman of the All-Party Group on Brain Tumours. I was diagnosed with a brain tumour back in 1988 and I am one of the lucky ones. Following the words of the noble Lord, Lord Patel, whose bravery and pain I understand, many patients are unaware that tumour tissue removed during surgery may be used for diagnostic refinement research and the development of future treatments, and that patients have choices about how that tissue is stored. This is acute in brain cancers and other rare cancers where diagnosis is devastating, treatment is urgent and patients and their families face complex decisions at moments of extreme distress. In the forthcoming cancer plan I believe there should be a commitment to improving public and patient awareness of consent, including for tissue use in research; a commitment to clear and consistent national messaging, developed with patients and carers, about how consent can work; and a commitment to find ways for the public to give advance informed digital consent, rather than at that moment of crisis. I pay tribute to Professor Kathreena Kurian, professor of neuropathology at the University of Bristol Medical School. She has advised me, she is a friend and, sadly, some months ago she lost her own husband to brain cancer.
Finally, earlier this week I had the privilege of meeting two courageous young men, Tom Riley and Dan Horrocks. My noble friend Lord Bourne has spoken beautifully about Dan. Both are suffering from brain cancer but, rather than just suffer, they have set up a grass-roots organisation called Brain Cancer Justice, a movement of patients and families living with the consequences of, as they describe, underresearch, fragmented trials and a lack of accountability. They agree that while the Bill in itself is modest, it is, however, essential. I congratulate Dr Scott Arthur MP and the noble Baroness, Lady Elliott, and thank them for their leadership. The Bill provides that leadership that will improve access to clinical trials and test whether the incentives for rare cancer medicines are indeed fit for purpose. I am honoured to support the Bill, but I urge the Minister to find a way to get it on the statute book as quickly as possible.
Lord Mendelsohn (Lab)
My Lords, I thank the noble Baroness, Lady Elliott of Whitburn Bay, and congratulate her on bringing this Bill to the House and enabling all of us in this Chamber to focus on these issues. We have heard from a number of colleagues about their own personal stories and people they know, and of course those we admire. I think today of my dear friend, the former Member for Oldham East, Phil Woolas, who is challenging and fighting for his life against one of these terrible cancers.
I declare my interest as trustee and director of the Follicular Lymphoma Foundation, the UK arm, the US arm and the Israel arm. It is an international charity established to try to find a cure for follicular lymphoma. Because my real declaration of interest is that my wife suffers from this cancer, an incurable but chronically treatable cancer. She, being the dynamic person she is, decided, having been convinced by some brilliant researchers here that we were on the cusp of the potential for curative options, to set up a foundation to do so, which we have done. She was diagnosed in 2016 and started treatment in 2018, curtailed during Covid. She is in remission, but it will come back at some point. I am very pleased to say that a huge amount of progress has been made, and whereas there was only one option for the next line of therapy, there are now a considerable number. The thing I am disappointed about is that most of those are available outside the UK and not in the UK, so if she is to be treated in the most effective way, it cannot currently be in the UK. I hope that will change by the time her condition comes back, because this is the point that I really want to get across about where we are.
The Bill raises the importance of research and focuses on rare cancers. We run by some traditional notions that these things have inherent difficulties and challenges that are not changing with time. They are. In the case of follicular lymphoma, advances that we can make in research and the pursuit of a cure will certainly be contributory factors to helping 32 other cancers that have very significant genetic sharing with the condition that we are focusing on. The use of data and the sort of stuff that used to make these things really difficult are now reasons why the opportunity in science is so large. That is why we can really look to the future as a wonderful moment of opportunity when we can cure some of these cancers, not in most cases by one silver bullet but by a variety of treatments and different modalities. This is why the Bill is so essential, and not just the Bill but the support and commitment from the Government.
We are a great country with great clinical practitioners and researchers: the noble Lords, Lord Kakkar and Lord Darzi, offer a perfect illustration. We have some of the finest. We have great institutions. We have a great history behind this. We have scale and we have opportunities not fully tapped with the NHS, but we are falling behind because of things that we are not doing in research, and actually in culture, because of the consequences of the lack of research money, from Brexit and other things, even with philanthropy and capital. It is hard for our charity to apply the money we could in the UK. We apply much more money in other places, including countries that have public policy supporting this, because it is easier to do so, especially in areas of rare cancers. It is so important to make progress on this. As someone who is committed to doing the best we can here, it pains me when we have rounds of funding where we are not giving to the UK what we are to other places, even countries with a smaller population, where data is so important. We use a place such as Israel, which is able to scale what it has in a way that we cannot. We are the country that should be in the lead on this.
Finally, I turn to the point that CAR T-cell therapy is a key therapy for us; it will be a transformational therapy for so many cancers. The problem that we have in this country is that we are reliant on trials and are not using it as a treatment. It is not just about the fact that Charlotte, a patient suffering from cancer whom I know, was told that this will be the next line of therapy but it is no longer available. Even King’s, one of our great institutions, cannot recruit people for it. The real challenge here is that we have to send these samples to another country to get them checked, whereas other countries have labs in the hospital that do these treatments.
If we focus only on doing the best we can do and supporting the research, but not getting it into treatment so that we have the right relationship with pharma and biotech, we will restrict ourselves. This Bill is a start, and we have to support it.
Lord Randall of Uxbridge (Con)
My Lords, I am humbled to follow the noble Lord, Lord Mendelsohn, and the previous contributions. I congratulate the noble Baroness, Lady Elliott of Whitburn Bay, and Dr Scott Arthur MP on the Bill.
I do not know much about all this, so noble Lords might wonder why I am speaking in this debate, which seemed to me to be something for people with knowledge, specialities or personal experience. It is because of two of my former constituents. One is Councillor Becky Haggar, a former Mayor of Hillingdon, whose husband sadly passed away from cancer; she set up the Hillingdon Brain Tumour & Injury Charity. The other is another Hillingdon resident who has been in constant communication with me—and in such a kind way considering, as far as I can see, her son is going through terrible treatment. I told her, “I’m going to speak in this debate because I want to give support. I’m not an expert; I just want people to know that they have my support”. I told her that I would have four minutes to speak and asked, “What’s the most important thing to say?” She said, “Appoint a national specialty lead”. Advocates, along with Brain Cancer Justice, want a national cancer lead as an essential element of this Bill.
Speaking of brain tumours—there are others, I know—and their complexity, she said, “It’s vital that the Government’s appointee fully understands brain cancer and other rare cancers to prevent them being overlooked, especially since brain cancer remains the leading cause of cancer-related deaths among children and people under 40”. An immediate nomination and appointment are urgently needed as patients cannot afford to wait. This should be a top priority integrated into the national cancer plan. Data shows that, although 20% of research funding goes to rare cancers, they account for around 40% of cancer deaths. So, given their complexity, brain cancers must not be overlooked when the UK Government launch initiatives such as the NHS’s national cancer vaccine launch pad.
We must also have awareness campaigns. The fact is that, very often, most of these people just present to A&E as an emergency; in fact, 40% to 60% of diagnoses are done after presentation to A&E. As we have heard from noble Lords previously—and as we will presumably hear from noble Lords after me—there are two things to say here. First, on the urgency of this, I urge noble Lords not to put down any amendments if that would make this process go on for longer than we would like. We know how it works, as we have seen before in Private Members’ Bills.
The other thing that comes through, plainly, is hope. No doubt there are people throughout the country who have just been given a devastating prognosis as we have been speaking. We do not know where—it could be among us here—but there will certainly be some such cases. This Bill may not be the answer, but it will give hope, so I offer it my full support.
Lord St John of Bletso (CB)
My Lords, I join noble Lords in thanking the noble Baroness, Lady Elliott of Whitburn Bay, for introducing this very worthwhile Bill, which has cross-party support. I declare a personal interest as I was diagnosed with early-stage lung cancer last year. The noble Lord, Lord Blencathra, may be interested to know that I was treated with the da Vinci robot; it was highly successful.
As noble Lords have mentioned, the statistics are alarming. Rare cancers account for up to 47% of all diagnoses and, sadly, 55% of all deaths. We often speak of the battle against cancer in monolithic terms, as if it were a single enemy to be defeated, but the reality is that it is a war fought on a thousand different fronts.
As we are all aware, pharmaceutical companies are profit-driven enterprises. When a cancer affects only a small number of patients, the potential revenue cannot justify the enormous cost of drug development. Sadly, this means that patients with rare cancers are often left behind—not because treatments are impossible but because they are not profitable.
The less survivable cancers include many rare cancers—the noble Lord, Lord O’Shaughnessy, aptly described the challenges of brain cancer—but also include pancreatic cancer and liver cancer. Those receive only 19% of research funding. When markets fail, it is the responsibility and duty of government to step in.
I was interested to see that the US’s Orphan Drug Act of 1983 was highly effective at dramatically increasing orphan drug approvals in America, but I am concerned that, although the UK ranked second in orphan drug availability way back in 2013, last year it ranked 11th. I welcome the fact that this Bill will provide accountability through a named responsible lead, as well as a review of orphan drug regulations to identify improvements; that review will be an opportunity to ask what we can do better.
This Bill will also improve our research infrastructure by ensuring that patient data from across the UK is shared and accessible for clinical trials. For diseases this rare, every patient counts. Connecting researchers with eligible patients is a fundamental barrier that this Bill will help dismantle.
It is encouraging that the Bill has the support of so many notable charities in the cancer space. In essence, it calls for a review rather than a prescriptive change. As my noble friend Lord Patel mentioned, we are seeing huge advances in genomics, creating more targeted treatments for rare conditions.
In conclusion, this Bill is not a panacea but a starting point. It does not in itself solve the complex, contentious issue of NICE appraisals or the affordability of these high-cost medicines; it creates the conditions for new treatments to be developed and provides the framework for that intervention. It is a modest, sensible and pragmatic proposal, and I wish it speedy progress.
Lord Moylan (Con)
My Lords, it is a privilege to speak after my old friend, the noble Lord, Lord St John of Bletso. I declare an interest as an officer of the APPG on Less Survivable Cancers; that term is more or less interchangeable with “rare cancers”, as used in relation to this Bill. I want to take this opportunity to thank the wonderful young people who work for the Less Survivable Cancers Taskforce, which stands behind the APPG and brings together so many of the charities—such as Pancreatic Cancer UK, which has been mentioned, as well as brain tumour charities, cancer charities and so on—that work to try to achieve something on this front.
Although we have waited, as my noble friend Lady Browning said, a long time for this Second Reading, the timing is quite apposite, because this is Less Survivable Cancers Awareness Week, and we are contributing to that as much as anything else.
I also want to declare that, like other noble Lords, I am a survivor until now of a less survivable cancer, having been diagnosed with a terminal oesophageal cancer two and a half years ago, which, remarkably, has been in complete metabolic remission for most of the last two years.
I want to congratulate, of course, Dr Scott Arthur and the noble Baroness, Lady Elliott of Whitburn Bay, on introducing the Bill. I want to make only two points. First, I want to depart slightly from the noble Lord, Lord St John of Bletso, in raising a tone of criticism, or a word of criticism, of what we might call big pharma. In my case, the immunotherapy drug that was probably crucial in achieving my recovery was developed for breast cancer. Breast cancer is, of course, a cancer which is profitable for pharmaceutical companies, so they have developed some wonderful drugs. My cancer is part of a group of cancers that have come under the heading of GNI cancers. GNI cancer oncologists have adapted this drug and used it to treat oesophageal cancer and other cancers of that sort. So we must be careful of shunning the big pharmaceutical companies. They are the source of much of the innovation, and we are seeing a staggering pace of innovation—that was mentioned by the noble Lord, Lord Mendelsohn. It is up to us to work with them and to get the best out of them as far as we can.
Secondly, it is easy to think that these cancers have suffered from a sort of casual neglect, that we just have not bothered with them or put enough money into them. In fact, they present acute difficulties of their own as far as research is concerned. One of them is conducting trials. The fact is that people diagnosed with one of the less survivable cancers tend to die very quickly. Many of them have very short survival periods, and conducting trials with patients who are dying very fast is very difficult. It is very difficult to construct a trial which gives you the results that you want. I have great hope in the national lead for rare cancers being appointed. The right person can make a real difference in pulling things together so that we can get some trials going for these cancers that could produce statistically valuable results.
The other thing we should be doing is ensuring that the transition from diagnosis to treatment is rapid. That does not require research; it is in our hands already, because it is, in essence, an organisational matter.
If you are presented suddenly with a cancer diagnosis, and it is usually a sudden event, and you are told you are facing death in a year or so—a short period ahead—you want to know that the Government and the state are on your side. This Bill is a good example of government showing that it is on the side of people facing very difficult circumstances.
Lord Freyberg (CB)
My Lords, this Bill touches a matter close to my heart, on which I have worked, on and off, for over a decade since my sister, Annabel, fell ill with mesothelioma in 2012 and her daughter, my niece, Blossom, died of neuroblastoma a few years earlier.
While survival in common cancers has improved over time, progress has been limited in less common cancers, as we have heard, and almost negligible in rare cancers, reflecting the limited research funding available for these awful diseases. As a result, this Bill has my full support, and I thank both sponsors for taking it through both Houses.
It being an enabling Bill, I thought it would be most useful to share lessons learnt over that time, including the risks that policymakers must navigate in its delivery, the possible role of new technology, and our return to Horizon Europe to accelerate the delivery of benefits to patients with rare cancer from any new funding.
First, these cancers and other neglected diseases such as chronic fatigue syndrome and long Covid face a structural Catch-22. With no historic research funding, they have limited research capability. When their few brave clinicians try to secure funding, they compete against academics in well-funded areas with resulting strong citation track records. As a result, they cannot compete and fail to get funding, perpetuating the cycle. UKRI is loath to create disease-dedicated funding streams in case scientific quality falls and “citations per R&D pound invested” drops. A solution to this Catch-22 must be found. Perhaps UKRI could bundle all these neglected diseases together, which would maintain competition and so scientific quality, but on a much fairer basis. I would urge Ministers to direct research funders to explore the merits of such a scheme.
Secondly, the fastest way to save lives is care quality improvement. As the noble Lords, Lord O’Shaughnessy, Lord Kakkar, Lord St John, and others, have rightly drawn attention to, while the UK has great data for such analysis, we fail to put its insights rapidly into the hands of clinicians who can use it. For instance, there are recurring delays in processing pathology reports for the national cancer surgery audits, driven by the need to manually process significant volumes of unstructured data. Norway has automated this process, and this seems mostly a matter of appropriate technology deployment. Perhaps the noble Baroness, Lady Blackwood, in her new role as chair of the Health Data Research Service, could help expedite such a change.
Finally, we all know that the UK’s cancer outcomes lag those of our European peers. I would like to commend to noble Lords the amazing anal cancer programme at Leeds Teaching Hospitals called atomCAT. Using privacy conservation technology, they have developed a way for an international consortium of hospitals to rapidly compare clinical practice. That provides direct exposure for UK clinicians to learnings in better-performing peer countries so accelerating UK cancer care improvement.
Careful design of the planned investments in health data can allow such safe digital comparison not only between our four great nations but with our European peers, which is essential, scientifically, in these cancers given their rarity. Now that we are back in Horizon, such investment would also position our digital researchers to compete for and secure European funding. I wish this Bill a speedy passage.
Lord Blunkett (Lab)
I apologise to the House for my premature and ill-timed intervention earlier. After 10 years in the House, I need to go back and sharply revise my understanding of procedure. I am grateful to the House for the opportunity of being able to intervene.
I am emotionally moved today by two things: first, by two of my most long-standing and closest friends, a married couple, both of whom were diagnosed with different cancers in the autumn and are now supporting and caring for themselves, and, secondly, by the timely intervention from the noble Lord, Lord O’Shaughnessy, and reminder of the very powerful final speech of my long-standing friend, Baroness Tessa Jowell, in this House. I thank the noble Lord for his part in carrying that legacy forward and the important concentration on research.
I only wanted to do two things. The first was to congratulate my noble friend Lady Elliott on taking this forward and to hope that, in the next three months, we can get Royal Assent. The second was to add that rare cancers sometimes morph into being much less rare. The more we can do to examine those so-called rare cancers, the more likely we are to be able to intervene early and prevent developments which would otherwise lead to death. If we can do that, early understanding of their development and the ability to save people in the future will be much more likely.
I am very grateful for the mention of oesophageal cancer this morning. In the past oesophageal cancer was a rare cancer. People were sometimes wrongly diagnosed with stomach cancer, but it was relatively rare. Sadly, it is no longer. I recall my very good friend, Lord Bob Kerslake, who was from and remained in Sheffield. He died from oesophageal cancer not so long ago.
Today, we have the opportunity to turn the spotlight on those rare cancers that affect a very large number of people and, in some cases, will affect greater numbers in years to come as environmental, societal and dietary changes have their impact. I thank your Lordships for the opportunity to intervene.
Lord Palmer of Childs Hill (LD)
My Lords, I must thank the sponsors of this Bill and congratulate the noble Baroness, Lady Elliott, who spoke of breakthroughs, which are very important. As we might have expected, we have heard heart-rending stories and stories from personal survivors. When we discuss the Bill, we must remember our dear friends and relatives, as many noble Lords have said.
Rare cancers make up about 24% of cancers diagnosed in the UK and the EU per year. This includes cancers of children and young people. My reason for speaking is the delays that children and young people with cancer are experiencing when applying for the disability benefits—DLA and PIP—to which they are entitled. My plea to the Minister is to add to the Bill about rare cancers a removal of the qualifying period to reduce the delays these people experience.
Is it acceptable for young people with cancer—some of the cancers are rare; some are not—to wait seven months or more to receive their disability benefits? Every year, about 4,200 children and young people under 25 are diagnosed with cancer, some instances of which are rare cancers. Beyond the medical impact of cancer, children, young people and families face a hidden and often devastating financial burden from living with cancer. It is about £700 in additional costs every month for items including travel to hospital, food, energy bills, childcare, parking, accommodation and more. Due to the immediacy, intensity and impact of cancer and its treatment, most young people and families experience the burden of these additional costs immediately after diagnosis. More than three in five—64%—face extra expenses within the first month. Within three months, this increases to four in five—79%. While the impacts of cancer persist beyond treatment, and benefits are still needed after treatment, the most significant costs for many occur during treatment, particularly during the crucial first few months following diagnosis.
These sudden and unexpected costs are often coupled with significant drops in income of, on average, £6,000 a year. For one in three, this could reach £10,000. However, the disability benefits system, designed to support people with this financial impact, is not meeting those needs due especially to delays. We have heard many noble Peers talk about delays—in receiving benefits as well as in receiving treatment.
To address these delays, children and young people with cancer and their families should be entitled to access welfare benefits immediately following diagnosis and should not be subject to a full qualifying period. The application process for welfare benefits should be simple, efficient and streamlined; it should utilise medical evidence to quickly determine eligibility for payments.
We are dealing here with rare cancers, but we must also talk about the stresses that people have when they are diagnosed with cancers and how they deal with them. I hope that, in replying, the Minister will address these delays, but these Benches support the Bill.
Lord Kamall (Con)
My Lords, I begin by thanking the noble Baroness, Lady Elliott of Whitburn Bay, for introducing this Bill in such a clear and moving manner. I thank all noble Lords who have spoken in this debate and echo the sentiments that they expressed. It is pretty clear that many of your Lordships from all Benches, if not all who spoke, welcome this Bill—as did Members in the other place.
I also thank Dr Scott Arthur, who introduced the Bill in the other place. If noble Lords have not already done so, I strongly encourage them to read Hansard on the Second Reading debate in the other place from 14 March last year. Just like the debate today, it contained many powerful and personal contributions sharing the devastating impact on patients and their loved ones. I particularly thank those noble Lords who have shared their own experiences, however difficult and emotional it may have been. I could sense a few tears being shed around the House.
I also have a personal story. I lost my mother-in-law and, despite growing up in an era of Les Dawson jokes about mothers-in-law, I loved her very dearly. Sadly, she died from a cancerous brain tumour a few years ago.
The noble Baroness, Lady Elliott, has clearly and persuasively set out the purpose and content of the Bill, but it is important to look at its three important tasks. The first is to place a legal duty on the Secretary of State for Health and Social Care to promote research into rare cancers, driven by a national cancer specialty lead for rare cancers. As was mentioned by two of the experts in this House, the noble Lords, Lord Kakkar and Lord Patel, and by my noble friend Lord Randall, a role—a specialist lead—to drive this forward is really important. An example was given of the effectiveness of specialist leads in other areas.
The second task concerns the importance of improving access to clinical trials, particularly through the use and better sharing of data. From some of the stories that we have heard today, people cannot believe that we are still not sharing some of that data, which should be available.
The third task is the requirement for the Government to conduct a UK-wide review of the regulatory framework for orphan medicine and products used to diagnose, prevent or treat cancers.
These three objectives are sensible and laudable, but how do we deliver them? How do we move from aspiration to implementation? As the excellent briefing from the Library makes clear, we are dealing with a stark reality because rare cancers, despite the name, account for almost half of all cancer diagnoses in the UK each year. My noble friend Lord Blencathra made the point that there are over 200 rare cancers and he referred to how many people they affect, yet they are often harder to diagnose and treat than the most common cancers. There are many reasons for this, a few of which were explained today.
Patient populations are smaller and more dispersed, which makes recruiting sufficient numbers for clinical trials very difficult. That point was made by my noble friend Lord Moylan and the noble Lord, Lord Mendelsohn, and it was addressed in the review by my noble friend Lord O’Shaughnessy. Another reason is that there are fewer commercial incentives to develop new treatments compared to medicines that may be used more widely.
I apologise for not declaring my interests at the beginning: I am a professor of politics and international relations at St Mary’s University in Twickenham, and I am helping to open a new medical school there. I am also teaching a module to MBA students on healthcare policy and strategy. I also have an academic link to the University of Buckingham, although not to the medical school there, but I just want to make sure that I have covered all bases.
As an academic, I was looking at some of the papers around this. A 2024 paper by Danielson, Prime and Larter found that the cancers that are most common in teenagers and young adults are different from the cancers that are common in children and older adults. Their survival rates for the same cancers can differ. This shows how incredibly difficult it is to tackle this issue. Crucially, the Teenage Cancer Trust reports that cancer treatments can be less effective for young people, as there is less research and fewer clinical trials for this age group.
The range of rare cancers—my noble friend Lord Blencathra said that there are more than 200—is vast. There are blood cancers, cancers of the female reproductive organs, head and neck cancers, pancreatic cancers, brain cancers and many more besides. That shows what a complex and challenging problem this is, but it should not be an excuse for inaction. As all noble Lords have said, the call for action is now.
By introducing this Bill, the noble Baroness, Lady Elliott, is shining a light on an issue that too often receives insufficient attention. She is proposing a measured, thoughtful and practical set of steps to make medical progress. Quite often, at the Dispatch Box, whether in government or opposition, we hear about government aspirations rather than firm steps, but this is a very practical proposal to the Government.
In discussing progress, we should acknowledge the extraordinary work of all those campaigners and charities who play their role in different ways, with some funding research, some advocating, and some supporting families and loved ones, as the noble Baroness, Lady Morgan, acknowledged. I thank them for their engagement with the Bill but, more importantly, for their tireless efforts on behalf of those living with cancers.
Although we are supportive of the Bill, it would be helpful to understand the view both of the Government and of the noble Baroness, Lady Elliott, on a few issues. The first issue, raised by a number of noble Lords, is funding. Although the Bill places an important duty on the Secretary of State to promote research into rare cancers, it does not seek to ring-fence or guarantee specific funding. Could the Minister say a little about how the Government envisage this duty being reflected in future funding decisions, and how we ensure that rare cancers do not continue to lose out when resource is allocated? I should declare that we understand the challenge of trying to fund all this research. Of course, it would also be interesting to learn of the view of the noble Baroness, Lady Elliott.
Secondly, on clinical trials, one of the challenges that patients and clinicians frequently raise is simple. As my noble friend Lady Browning said, not all clinicians are aware of all relevant trials, particularly where those trials are highly specialised or geographically distant. Could the Minister share the current thinking of the department on what steps could be taken to improve awareness and signpost rare cancer trials, especially for clinicians and patients in rural or remote areas? Related to that, even where new treatments or trials are available, access is often concentrated in a small number of specialist centres. Could the Minister comment on the thinking in the department on ways to address these disparities in access, so that patients are not disadvantaged simply because of where they live?
Turning to the proposed review of the regulatory framework, could the timeframe be cut to less than three years, and what are the implications of doing that? Looking at the issue of medicinal products, on the three-year timeframe, do the Government or even the noble Baroness, Lady Elliott, have any views on whether the period of three years could be shortened, given the urgency that many noble Lord have raised? Also, would the proposed review include consideration of NICE’s pricing and appraising processes, and will it consider wider societal impact, as we debated last week? Many stakeholders have highlighted the difficulty of balancing affordability with price points while supporting innovation in rare cancers. It would be really helpful to understand those points.
Finally, although the Bill rightly focuses on rare cancers, many of the issues it seeks to address, such as delayed diagnosis, limited research, small patient populations and a need for specialist care, also affect people living with other rare conditions. Could the Minister say a little about how the Government are thinking more broadly about rare diseases, and whether the lessons learned from this Bill might inform wider policy in this area? We also heard about a few other issues thrown in by noble Lords. One is timelines; another is the abolition of NHS England. I know this point was raised in the other place. What is the Government’s thinking on that issue?
The Bill is thoughtful and important, commands broad support across the House, and addresses an area of clear and long-standing need, but it does so in a careful and proportionate way. It reflects the voices and experiences of patients and families who too often feel overlooked, particularly those affected by rarer and less well understood cancers, which we should remember, despite the name, account for 47% of all cancers. This alone is an important and welcome development, and I commend the Bill’s sponsors for that. The questions I pose are not intended to delay; they are intended to be constructive, to understand how the Bill would operate in practice, how ambitions could be turned into reality, and how principles might inform and provoke wider thinking across government. I hope that my questions will be seen as constructive. Once again, I thank the noble Baroness, Lady Elliott, for her leadership on this Bill, and I look forward to working with her and supporting its progress through the remaining stages.
The Parliamentary Under-Secretary of State, Department of Health and Social Care (Baroness Merron) (Lab)
My Lords, I am delighted to pledge the Government’s full support for this Bill. It is very much aligned with our commitments, it strengthens the research ecosystem and, most importantly—I agree with many comments today—it gives hope to patients and families affected by rare cancers. I am glad that the Bill has the support of the noble Lords, Lord Kamall and Lord Palmer, on behalf of their Benches.
I am most grateful to noble Lords for their points and proposals today. I will be reflecting on them after this debate with the Minister in this area, Ashley Dalton MP, and also Zubir Ahmed MP. I was very touched that so many Peers shared their personal experiences, whether their own or those of their loved ones. I feel that the Bill stands in tribute to the memory of so many, including the late Baronesses, Lady McDonagh and Lady Jowell. It also stands in tribute to the memory of so many who I believe have been brought into the Chamber today by the very touching words and reflections of so many noble Lords. I realise how difficult that is.
I congratulate my noble friend Lady Elliott on her tenacity and clarity in bringing forward this important Bill before the House. I associate myself with the thanks to the many campaigners and charities who have worked on this for so many years, and I know they will continue to do so. My noble friend Lady Morgan made that point particularly clearly. I say to the House, and particularly to the noble Lord, Lord Kamall, that the Government are quite clear that no patient should be left behind simply because their cancer is less common.
The national cancer plan is soon to be published— I heard what the noble Lord, Lord Polak, hopes will be in there, and he will not have to wait too long for it—and it will build on the progress of this Bill. They work very well together, because they both seek to improve outcomes for cancer patients across the country, including those with rare cancers. It is by fighting cancer on all fronts—prevention, diagnosis, treatment and research—that we will make that change.
Much has been said today, and rightly so, about a number of cancers, but I want to say a particular word on how little is currently known about the prevention, diagnosis and management of brain tumours. They remain one of the hardest cancers to treat, and we also know how crucial early diagnosis is for improving survival rates for all cancers, including brain tumours. That is why we have committed to an additional £6 billion capital investment on new diagnostic, elective and urgent care capacity. The noble Lord, Lord Patel, called for genome sequencing for brain tumours. I can say to him that the national cancer plan will include detail on how we ensure that patients have access to the latest treatments and technology, including genetic treatments.
Important points were raised by the noble Baroness, Lady Grey-Thompson, and the noble Lord, Lord O’Shaughnessy, among others, about how the £40 million commitment to NIHR funding for brain tumour research will be met. That commitment absolutely remains in place, but there is no upper limit to our funding of high-quality brain tumour research and we are committed to exceeding the £40 million target. I should also add that there is no limit to our funding of high-quality childhood cancer research.
Clinical research, rightly, is at the core of this Bill. It is one of the most powerful tools that we have. I believe that the Bill will complement the ambitions in our 10-year health plan and the forthcoming national cancer plan to embed that research across the NHS and give patients greater control. It will make it much easier for researchers to connect with patients with rare cancers and streamline the recruitment for clinical trials and will ensure our regulatory framework delivers for those who need it most.
The noble Lord, Lord O’Shaughnessy, and the noble Baronesses, Lady Finlay and Lady Browning, raised the database. The database is live across the UK; it is a UK-wide registry. I urge everyone to sign up to be part of research in order to connect with trials. The noble Baroness, Lady Browning, also asked about strengthening the orphan drug regulations. We must ensure that there is a detailed review before any decisions are made on the regulations.
I say to the noble Lord, Lord Polak, that we will ensure that we do all we can to improve how we use data for research and raise public awareness of consent. I certainly fully support the digitisation of advance consent, which he referred to.
It is key that we incentivise research and continue to support and develop cutting-edge research for rare cancers and other rare diseases through the NIHR. For example, in December, we launched a pioneering new brain tumour research consortium to accelerate research into new treatments through the NIHR, which is investing an initial £13.7 million, with significant further funding expected to be announced shortly. We are also ensuring the effective co-ordination of research from other funders and charities through the Office for Strategic Coordination of Health Research, which is chaired by the noble Lord, Lord Kakkar.
We published Transforming the UK clinical research system: August 2025 update outlining how we fully delivered against all the recommendations in the review conducted by the noble Lord, Lord O’Shaughnessy, who I thank for his work on commercial clinical trials. We will go still further to deliver on our 10-year health plan and cut clinical trial set-up times to under 150 days by March—a target driven by the Prime Minister. We are taking forward the most significant reform of clinical trials regulations in more than 20 years. We need a more efficient and adaptable regulatory framework, and that is what we will deliver.
Concerns were raised about timings of implementation and market authorisation of clinical trials. The timeframe in the Bill is a legal boundary, and we certainly expect to publish the report rather sooner. The noble Lord, Lord Mott, asked about the UK’s ranking for approving orphan drugs. The lessons learned from the review of the regulations will inform how we best approach the regulation of UK orphan medicines.
On the abolition of NHSE, work is under way on primary legislation. That will enable its functions, powers and responsibilities to transfer formally to the department. That will include responsibility for this Bill. I heard loud and clear from a number of noble Lords the wish to see a speciality lead for rare cancers in post and getting to work as soon as possible. I certainly agree on their importance. I heard what the noble Lord, Lord Blencathra, said, but this is the way we will go forward. We will ensure that that appointment is made as soon as possible.
As I said at the outset, many useful points have been made. They will be part of our consideration, but the main thing I want to say is how glad we are to fully support this Bill and how we will do all we can to help progress it. It reflects ambition and our support for the goal for the UK to be the global leader in clinical research, which noble Lords called for. This is about patients, particularly those facing rare cancers. They deserve and need greater choice, speed and opportunity to participate in vital studies. Every breakthrough is key because it means that we can maximise people’s access to the benefits. I thank my noble friend for bringing the Bill forward, all noble Lords who have contributed and all those who continue to champion its cause.
Lord Winston (Lab)
I apologise for keeping the House waiting a moment longer, but I want to ask the noble Baroness something very important. This has been a fantastic debate of a high standard, in the best interests of the House of Lords. There was a great focus on focused research on rare cancers, but does she agree that continued basic research on cell biology, embryology and a whole range of things about cell development, which has contributed so much to cancer research and to rare cancer research, is also important?
Baroness Merron (Lab)
As my noble friend said, this has been an extremely valuable, well-informed and moving debate. At present, we are focusing on rare cancers because of the nature of the Bill, but I absolutely take his point about the importance of work outside rare cancers and the overlap with that. I thank him for it.
Baroness Elliott of Whitburn Bay (Lab)
My Lords, I thank everyone who has taken part in this debate. It truly has shown this House at its best, with a combination of personal stories and incredible expertise on the subject—way beyond my level of knowledge. Everybody has played an important part in highlighting just how important this is. I particularly thank Members who have given personal stories, which are often very difficult and emotional to talk about. It not easy to do. I say that in particular to the noble Lord, Lord Patel, who has so recently been bereaved.
I also highlight the contribution from the noble Lord, Lord O’Shaughnessy, because when Lady Jowell made that most moving and, in the circumstances, uplifting of speeches, standing not far from where he is sitting now, I was one of the Members of the House of Commons who came and stood at the Bar for the entirety of her contribution. It was one of the few times I came to the Bar to listen to things in this Chamber, but it is one that I shall never forget. That positivity is in this Bill because it is about hope to change things for the better.
I also mention the contribution from the noble Lord, Lord Mendelsohn, who mentioned our friend Phil Woolas. I had the privilege of serving with him in the House of Commons for a short time, but I knew him long before that. We wish him, his wife Tracey, their entire family and his close friends well, as he battles the terrible situation he is in.
The key message coming out of this Bill is the hope that it will give to people who are diagnosed with rare cancers and to their families and friends. At the moment, there is little hope for those people. I thank Dr Scott Arthur again, his staff and the charities that have got us to this point. We should leave here today with the hope that the Bill can really change things for the better.
Arrangement of Business
Captain of the Honourable Corps of Gentlemen-at-Arms and Chief Whip (Lord Kennedy of Southwark) (Lab Co-op)
My Lords, before we start further consideration in Committee of the Terminally Ill Adults (End of Life) Bill, I wish to make a short statement. I emailed all Peers on Wednesday afternoon to set out my position in light of the agreement to the Motion from the noble and learned Lord, Lord Falconer, which was agreed last Thursday in this House. I will briefly set out the headlines again to assist the House.
Noble Lords clearly accepted the proposition last week that more time was needed to scrutinise the Bill. I have taken time to consider all the options and discuss them with the noble and learned Lord, other noble Lords, the usual channels and the House administration. In coming to my recommended position, careful consideration has been given to the impact that additional time would have on the House staff, Members and government legislation.
We have always been clear that the Government are neutral, and that will not change. I also confirmed last week that additional time for the Bill will not be provided in time used for government legislation or other important House matters. Fridays therefore remain the only opportunity to scrutinise the Bill, which is a Private Member’s Bill.
Rather than seeking to adjourn the House at 3 pm today, as I have in previous weeks, in light of the Motion I will seek to adjourn the House at around 5.30 pm today and at 6 pm on subsequent Fridays that have already been allocated. I understand that some noble Lords are very disappointed by this fact, but the House spoke clearly last week and this is the only option I can see to fulfil the will of the House.
Ultimately, though, when we rise remains in the hands of noble Lords here. I remind noble Lords that, should they wish to rise earlier, any noble Lord can seek to adjourn the House at any point before 5.30 pm by moving the Motion that the House be now resumed. If that Motion is moved and carried, I will then adjourn the House.
We have previously discussed the particular concerns of different faith groups and accessibility considerations regarding the consequences of rising beyond 3 pm, and I remain very sympathetic to those points. That is why, as discussed in the usual channels, I will provide flexibility on the requirement to stay to the end of the debate, so that if colleagues need or want to leave early, without waiting to hear the contributions from the Front Benches in the debate that they have spoken to, they can. All I ask is that they let their Whip, the Government Whips’ Office or the convenor know that they are leaving.
I will not go over previous statements or emails about the usual courtesy in debates, in order to save time and to allow us to move on to the substance of the Bill, but I trust that noble Lords will move forward in line with the guidance on how the Committee should proceed in the spirit of good self-governance and self-regulation, with respect to all colleagues.
Lord Empey (UUP)
My Lords, the Chief Whip will know that I and others have contacted him about this proposal. I accept that the House made its declaration last Thursday—one has to take that seriously and into account. However, the proposal before us now ensures that those of us who cannot go outside the front door, get into our car and drive home will be effectively excluded from a large part of this debate. It is not good enough, if I may say so, to say that we can be excused from the normal courtesies of staying to the end. The purpose of tabling amendments is to hear the response from the proposer of the Bill and the Minister. I know that we can get up at any point and move an adjournment or the resumption of the House, but I do not think we want to get into a situation where we are bouncing around and looking around to see whether we can win a vote for an adjournment.
We need an agreed situation, and certainly I, with others, will be giving consideration to that over the weekend and perhaps returning to the noble Lord at the beginning of the week with some suggestions that accept and acknowledge the will of the House expressed last Thursday but, at the same time, do not mean that those of us who have to travel a distance are effectively faced with the situation of having to stay over for the weekend, or at least until Saturday. If we are leaving here at or around 6 pm, it is impossible for us to get home, and therefore we would have to stay over.
Lord Kennedy of Southwark (Lab Co-op)
I have huge respect for the noble Lord and other colleagues who serve in this House from all parts of our United Kingdom, including Northern Ireland and Scotland. I accept his points about the inconvenience caused to colleagues. My door remains open, and I will happily meet the noble Lord next week to discuss what we do in future.
I do not come here to annoy and aggravate Members of the House, but I feel that at the moment I am doing just that. That is not my intention. I love the House and I want it to work well. I remain open to any ideas and suggestions that noble Lords might have. People want to use government time but, while I am the Government’s business manager and we have to get the Government’s business through, I am also conscious of party debates and Select Committee reports. I know how important Thursdays are to colleagues, so it is very difficult. But my door is always open to any colleague to come and discuss any further ideas about how we can move this forward. I am very sorry for the inconvenience to noble Lords today.
Lord Blencathra (Con)
My Lords, I seek clarity from the Chief Whip on when we should adjourn discussion of a group and carry it forward to the next designated day after we have reached the official knocking-off time, shall we say? He will know that on Tuesday last, when we were due to finish at 11 pm, at 10.58 pm the Whip on duty suggested that we should adjourn the debate and continue the next day, even though there was only one Peer left to speak. We resolved that matter with the Chief Whip’s help, continued the discussion and finished at 11.08 pm. Contrast that with last Friday when, at 2.30 pm, with four Peers waiting to speak, the Whip on duty decided that we needed to hear from the Front Bench because the whole group had to be concluded by 3 pm. I do not think that is in accordance with our procedures. I would like some clarity from the Chief Whip on whether we should be able to carry forward the remaining discussion on a group if we have not completed it by the official stopping time.
Lord Kennedy of Southwark (Lab Co-op)
I agree with the noble Lord, Lord Blencathra, who is obviously an experienced Member of this House. Ideally, when we are discussing any legislation, it is better to conclude a group of amendments on the day than not doing so—that is just better for the management of the House’s business—but sometimes that is not possible and, when that is the case, I fully accept that we should adjourn mid-group and then come back to it the next day. If that happens today at any point, I will ensure that happens.
Baroness O'Loan (CB)
My Lords, I endorse what the noble Lord, Lord Empey, said. I know that many of our Scottish and north of England colleagues are very much affected by this.
I want to draw the Chief Whip’s attention to one thing. The House normally rises around 7 pm on Thursday evenings. That is reflected by the fact that, for example, there is no dinner in the Peers’ Dining Room on Thursday evenings. Would it not be possible for the Lords instead to sit until 10 pm, say, and then release us at 3 pm on Fridays so that we do not incur extra expense, which the House has to pay, because of this change of business?
Lord Kennedy of Southwark (Lab Co-op)
I am very happy to discuss that further with the noble Baroness next week and with the usual channels, but up to now, of course, PMBs have been dealt with on Fridays. I think all my colleagues in the usual channels want to keep to that—I certainly do—but I am very happy to have that discussion next week to find another way forward to do what the House wants, which is to find more time for this Bill. We will see if we can do that, but I am very happy to have that discussion next week.
Lord Deben (Con)
My Lords, I want to raise the concern of Jewish Members of the House, who are in a particular difficulty on Fridays. Perhaps it is better for somebody who is not Jewish to put that forward and ask if the noble Lord can look at that very carefully.
Lord Kennedy of Southwark (Lab Co-op)
I thank the noble Lord for his point. I genuinely understand that; I am very conscious of that. I do not wish to cause any Member who is Jewish, or of any other faith, distress, inconvenience or problems in their faith by sitting beyond 3 pm. It is why I suggested that people could leave without hearing the debates, but that may not be acceptable to some colleagues. I am aware of that. I will discuss what else we can do, but I apologise. It is not my intention to cause noble Lords who are Jewish distress or problems with their faith.
Baroness Falkner of Margravine (CB)
My Lords, I would like a point of clarification from the noble Lord. Before I express that, I think I speak for the whole House when I say that we understand what a difficult position the noble Lord finds himself in, and how fair he is trying to be to all sides in attempting to resolve this. I am certainly extremely grateful to him for the consistent fairness he has displayed to the House.
My point is about the procedures of the House. When we had that unusual Motion last week, the noble Baroness, Lady Stowell of Beeston, a former Leader of the House, raised an important point at the end: does this affect precedent and future procedure on Private Members’ Bills? I do not think she got an adequate response.
While I appreciate the noble Lord’s flexibility in allowing noble Lords to leave before the end of the debate on a particular amendment—I completely endorse all the comments made by colleagues who live further away from the House about the troubles they would encounter—when we change the procedures of the House and more or less drive a coach and horses through the Companion, are we not expected to have a debate and make it clear that we are not setting precedent? Should we not be having a vote on that?
Lord Kennedy of Southwark (Lab Co-op)
I thank the noble Baroness for her very kind comments, which are much appreciated. We are a self-regulating House. We have a Companion; we do not have fixed rules, but we have conventions, and we all try to work around those. That enables the House to work in the unique way it does. In some ways it is not like the House of Commons. I know colleagues who come from the House of Commons say how strange they find it when they first arrive here, but it does work.
Although the Companion advises us to rise at around 3 pm on Fridays, I checked and since 2021 we have sat beyond 3 pm on PMBs 24 times. We have already sat beyond 3 pm on the two days of Second Reading for this Bill. Although it is advisory and it is the convention, it is not a hard and fast rule. We do not have those sorts of hard and fast rules.
On the points made by the noble Baroness, Lady Stowell of Beeston, because we are self-regulating, I do not think it sets a precedent. At the end of the day, this House can decide what it wants. As I said earlier, if noble Lords want to adjourn at 3 pm and carry a Motion on it, then we will adjourn at 3 pm. However, I accept that this is a very important Bill and there are strongly held views on both sides. People want to give it scrutiny and we have to have the flexibility to ensure that is what happens.
Lord Wolfson of Tredegar (Con)
My Lords, for the obvious reason, I want to place on record my personal thanks to the Government Chief Whip, because I know he takes these matters extremely seriously. He is placed in an invidious position because our procedures, it seems to me, are just not designed for large, controversial, notionally Private Members’ Bills of this nature. The Government Chief Whip, for whom I have the highest personal regard, is really caught in the middle in a very difficult position. I wanted to put my thanks on record.
I should tell the House the way we are going to deal with it today. My noble friend Lord Kamall is attending Friday prayers, so I am here. Then from 3 pm, when I will be observing Shabbat, he will be here. I hope that is an example of the ecumenical way these Benches deal with these matters.
Lord Kennedy of Southwark (Lab Co-op)
I thank the noble Lord for those very kind comments. Again, I say that, although this is difficult, I have only ever had courtesy and warm discussions from colleagues around the House with different views. It is challenging at the moment, but I love being the Government Chief Whip and the Captain of the Honourable Corps of Gentlemen-at-Arms. It is an absolute honour and privilege. I want to work to serve the House to get this right; thank you very much.
Terminally Ill Adults (End of Life) Bill
(1 day, 8 hours ago)
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“(e) has made independent contact with their local voluntary assisted death service for information,”Member's explanatory statement
An independent voluntary assisted death service ensures that the person accesses independent information relating to assisted dying support.
Baroness Finlay of Llandaff (CB)
My Lords, Amendment 27 would ensure that the person in question has made independent contact for information from their local assisted death service provider and has not been subtly coerced or pressured by someone who thought they ought to consider an assisted death. Getting information to inform decision-making is crucial to supporting autonomy. Patients must be able to access all the details they need about an assisted death from a place that is not their primary source of care, their doctor. Having alternative independent sources of information for an assisted death gives greater latitude for patients to understand their choice, and at the pace they need.
This Bill, as the sponsors have made very clear, is about autonomy. People’s autonomy in decision-making depends on having the information they need, and in any format that they require, as they drive their information-gathering process themselves, outside of the intricacies of the relationship with clinicians. The power imbalance between the doctor or senior nurse and the patient can be a distorting influence. This amendment is designed to give the patient agency in how they learn about an assisted death.
Amendment 42 would require that the person in question is fully informed. Having an assisted death is a hugely consequential choice for someone to make. Their understanding of the drugs they will take, how the process works and the consequences for self and others is crucial. I am concerned the Bill does not include enough details about the process through which this can happen. The Bill discusses but provides very few details about how this service is to be provided and funded. It feels like a black hole in the Bill.
The Delegated Powers and Regulatory Reform Committee noted:
“One might expect the integration of the assisted dying system with the NHS to involve a substantial degree of new regulation but the powers contain next to no indication of the shape or substance of the regulatory regime that is intended for VAD services. Instead, they give Ministers almost unlimited powers to legislate in that area by statutory instrument”.
It goes on to say in the report—I should declare that I am a member of that committee—that Clauses 41 and 42
“are skeleton provision because they are ‘so insubstantial that the real operation of the Act … would be entirely by the regulations or orders made under it’”.
The committee recommended that the delegated powers in Clauses 41 and 42 be removed from the Bill, and, if alternative delegated powers in relation to the services are introduced, that
“they are appropriately justified, include sufficient detail and statement of principle to understand the intended regulatory system, are limited to what is necessary to meet their objectives, and are subject to the affirmative procedure”.
In a similar way, there are glaring gaps in the Bill. Clause 5, on
“Preliminary discussions with registered medical practitioners”,
specifies in subsection (6) that a doctor
“who is unwilling or unable to conduct the preliminary discussion … must ensure that the person is directed to where they can obtain information and have the preliminary discussion”.
Nothing more is said, though, about who may provide that information, what their qualifications are and whether there is any government or regulatory oversight of those providing such information; nor does the Bill address the need for a trusted and neutral source of information.
Whether it is a register, an agency or a local assisted dying service, all get to the heart of legislating in this way. None of the detail seems to have been worked through. If this is to be a private service, the regulation envisaged in the Bill is entirely inadequate. If this is to be an NHS service, is it to be fully integrated or a separate service? How we do this on the NHS does not seem clear at all.
Baroness O'Loan (CB)
My Lords, I will speak to Amendment 38 in my name. I have put my name to five other amendments in this group, all of which seek to ensure clarity on what in the Bill involves identifying vulnerability and providing protection for those who may be subject to coercion or who may be unaware of their rights.
I support Amendment 27 from the noble Baroness, Lady Finlay. The importance of this derives from the current structure of the Bill and the massive deficiency in the Bill’s provisions. As the DPRRC said, the Bill does not say how assisted death services are to be provided. This is a huge black hole in the middle of the Bill. It does not tell us where, when, by whom and how services are to be delivered, and is indicative of how unfit the Bill is.
As the noble Baroness, Lady Finlay, said, Clause 41 confers significant Henry VIII powers on the Secretary of State, requiring him to make provision to secure arrangements. Clause 42 permits Welsh Ministers to make provision, but there is no provision in the Bill that came from the Commons. The noble and learned Lord, Lord Falconer, has not introduced any amendments to address this lacuna. Does the noble and learned Lord intend to do so?
Those who were meant to deliver this service have not been consulted. As the BMA said,
“our view is that assisted dying should not be part of the standard role of doctors or integrated into existing care pathways – it is not something that a doctor can just add to their usual role”.
In 2024, 45% of BMA members said that they were not prepared to actively participate in the process, while 19% were undecided. Where does the patient get neutral, unbiased information? Dr Mulholland, from the Royal College of General Practitioners, said:
“The shape of the service is not set out in the Bill … GPs need to have a space where they can step away from it: that is the key point that we want to get across. For those who want to take part, it may be that they decide to do it, but it would have to sit outside the core general medical services that we provide at the moment”.—[Official Report, Commons, Terminally Ill Adults (End of Life) Bill Committee, 30/1/25; col. 277.]
Chris Whitty said in oral evidence that Parliament should resolve this. How does the noble and learned Lord, Lord Falconer, intend to resolve it?
As a consequence, a person, particularly one who—for a variety of possible reasons—has no family or friends who can support them, when advised by a doctor that voluntary assisted death could be provided to them because of their condition, is intensely vulnerable. This could happen even when they have made no request for such provision. It may come as a significant shock to them, on top of their existing vulnerability as a consequence of the diagnosis and prognosis that they have received. In such a situation, the patient—isolated, vulnerable and accustomed to believing that a doctor will always seek to help their recovery and do no harm, and possibly even thinking that assisted death means palliative care rather than death—will need some independent person to talk to, if only to try to ensure that they understand what they are committing to. As far as I can see, there is no such provision in the Bill.
The Bill does not even say that the person who makes the request to die, provided for in Clause 1, line 13, must be the person referred to in Clause 1. Relatives, friends, a professional adviser or indeed anyone else could initiate the process. Hence I have put my name to Amendment 31, which would add the words “their own” to the phrase “on request”. Further, since the Bill does not exclude Sections 9 and 11 of the Mental Capacity Act, someone with a lasting power of attorney under that Act could request assistance on behalf of the individual concerned. Once that request is made, the provisions follow. Amendment 68A, in the name of the noble Baroness, Lady Coffey, is vital, because it ensures that someone with an LPA cannot assist the process. Does the noble and learned Lord, Lord Falconer, accept that this is a very real gap that this amendment must fill? If he does not accept the amendment, can he tell the Committee how he intends to ensure a person’s voluntary wish to end their life in these circumstances?
Amendment 38 in my name excludes from eligibility those with serious mental health conditions. It concerns whether they wish to die as a symptom of a specific illness and applies to those with conditions
“known to cause episodic or chronic suicidal ideation, including but not limited to bipolar disorder, borderline personality disorder, major depressive disorder, or schizoaffective disorder”.
It seeks to distinguish between those who might seek an assisted death as an autonomous choice and those who are seeking suicide because of a serious history of mental health or disorder. Some mental health conditions have suicidality as a feature of the disorder. These people are, by very definition, at high risk of suicidality and self-harm. The intention of the Bill should not be to view these people as the same as those who have made a voluntary choice to end their own lives. Serious mental health conditions impair decision-making and affect a person’s ability to make the irreversible decision to die. The amendment is limited and mental health issues such as depression or anxiety would not be within its scope. Dr Annabel Price noted that around 20% of terminally ill patients have diagnostic depression and that
“around 10% will have a wish to hasten death”.—[Official Report, Commons, Terminally Ill Adults (End of Life) Bill Committee, 30/1/25; col. 270.]
This is strongly linked to feeling suicidal. Professor Owen gave evidence that even sub-clinical mood problems or anxiety can affect judgment.
As the Royal College of Psychiatrists said in evidence, as the voice of psychiatry and an organisation that has campaigned for decades to prevent people dying by suicide, it is important that we directly acknowledge that the passing of this legislation would result in amendments to the Suicide Act. What then would this mean for suicide prevention efforts among the terminally ill population in England and Wales? A duty of care is imposed on clinicians to protect the safety and well-being of their patients, including those who are at risk of self-harm or suicide by the Mental Health Act, the Mental Capacity Act and the Human Rights Act.
In 2011, the commission of the noble and learned Lord, Lord Falconer, resolved that doctors must be satisfied that there is no treatable mental condition contributing to the suicidal wish. Is the noble and learned Lord now satisfied that these serious mental conditions are irrelevant to doctor and panel approval? I hope he will indicate that he will accept this amendment, but, if not, what amendments could he offer to establish protections for these individuals?
I also support the noble Baroness, Lady Finlay, on Amendment 28, which seeks to ensure that fast-track benefits are made to those who qualify, so that they do not end their lives for financial reasons. In so many cases, the availability of financial support that may be critical is not known about. When my brother died of cancer a couple of years ago, we had no knowledge that such support should have been made available to him. There are many others in similar circumstances who may opt for assisted death because their situation cannot be improved as it could be if the financial help that should be made available were to be made available.
I also support Amendment 39, which deals with the situation in which a person in care may be suffering from undiagnosed dementia and all that goes with that. It is important that there is a dementia assessment in the three months preceding an application for assisted death, given the Government’s figures on undiagnosed dementia, which range from 29% to 71% of cases in primary care. Many of us, sadly, have seen people we know and love in care homes, and our experience has told us that they are suffering from undiagnosed dementia. It can take time for a diagnosis to be reached, especially where an individual with dementia still understands the questions they may be asked and how to answer them, although they cannot remember whether they had a visitor to that day and do not even understand why they have to see a doctor.
People can be very convincing, even when suffering from fairly advanced dementia. A visiting doctor, one of two independent doctors, will not necessarily identify undiagnosed dementia in a single visit. Amendment 39, which would require a specific clinical assessment for dementia in care homes, is a very necessary safeguard. The question for the noble and learned Lord, Lord Falconer, must be: would it be satisfactory for a patient with undiagnosed dementia, deemed compliant by an overworked care home staff member, to be signed off by a doctor who has met them once—always remembering that the second doctor does not have to meet them at all?
Amendment 68 makes a categorical statement that nobody can take a decision on behalf of anyone else. Such clarity is very necessary, as I am sure the noble and learned Lord, Lord Falconer, will accept. If he does not accept this amendment, can he provide details of any amendments that he will table to ensure that nobody, other than as provided for in the Bill, can take a decision that someone else should be helped to die?
Baroness Berger (Lab)
My Lords, I will speak to Amendment 31 in the name of my noble friend Lady Ritchie. It would clarify that the request for assistance to end one’s life must come from the terminally ill person, leaving no room for doubt over whether someone else is able to make the request for them. This may seem like a statement of the obvious, given that eligibility under the Bill depends on both a clear, settled and informed wish to die and an absence of coercion. But there are situations where it is possible to imagine the request being initiated by another person who claims to be speaking on the ill person’s behalf, and an assessing doctor being persuaded to go along with it.
The Bill contains a number of provisions that are designed to allow another person a substantive role in the process, from the independent advocate who helps a terminally ill person to engage with their options, to the proxy who can sign a first or second declaration on their behalf. It is not difficult to envision such a person taking it on themselves to tell a doctor that the ill person is interested in having a preliminary discussion under Clause 5, or being the one to make an appointment that they explicitly say is for the purposes of a first declaration under Clause 8. Neither scenario is explicitly ruled out by the Bill. Of course, there are no limits specified to the role of independent advocates in particular. This is just one example of the many things that are not in the Bill and are left to be decided through regulations later on. We might even imagine a partner, relative or friend purporting to speak on behalf of an ill person telling the doctor that he or she is shy, exhausted or overwhelmed, when in reality they are acting in their own interests.
Baroness Coffey (Con)
My Lords, I have Amendment 68A. I am conscious that I asked the noble and learned Lord, Lord Falconer of Thoroton, whether lasting power of attorney can be used. I am pleased to say that, in the debate, he said no. However, I am concerned that we may start to see quite a lot of case law emerge with this Bill if it becomes an Act. It is therefore really important that we start to put the level of protections into the Bill, as has just also been suggested by the noble Baroness, Lady Berger.
The reason I am particularly keen on the lasting power of attorney issue to be put into the Bill is in recognition that this could become something that people—I recognise that these are people who are getting towards the end of their life and may have less than six months to live—would expect, if they had already transferred their decisions to a person acting with an LPA, in order to start making these decisions. However, I think the sentiment of the Committee, and certainly that expressed by the noble and learned Lord as the sponsor of the Bill, is that that should not be the case. That is why I particularly want to see this in the Bill.
I appreciate that I do not have a Bill team of civil servants to say whether this is precisely how it should be addressed, but I hope that it is been sufficiently comprehensive, also considering Sections 9 and 11 of the other Act, to make sure that, if somebody is to make this decision, it has to be wholly and exclusively their own. It cannot be done within fluctuating conditions where people interchange on who is making the decision; it must be just the one person whose life it is who considers whether to take their own life.
Baroness Cash (Con)
My Lords, I support this group of amendments for a specific reason. I tried to ask the Minister this question during their closing speech last week, but there was not time. The Equality and Human Rights Commission gave evidence at the Select Committee—I declare an interest that at the time I was a commissioner, but am no longer—in writing and orally, expressing grave concern about the adequacy of the equality impact assessment. The points coming up in support of this group raise real questions around this.
I ask the noble and learned Lord, Lord Falconer, to say when we will see addressed the gaps identified in that evidence given by Alasdair Henderson, a commissioner at the EHRC, and in a follow-up letter written to the noble and learned Lord, Lord Hope, identifying specifically where the EHRC was concerned. When will we see a follow-up to that? It seems to me that many of the points in this and subsequent groups are about the vulnerabilities of individuals because of certain protected characteristics and the lack of protection for them. The EHRC has expressed no position on this Bill but is very concerned about it. I think the same applies to many Members of this House. We need answers to these questions to inform this debate fully.
Baroness Lawlor (Con)
My Lords, I will speak to my Amendments 40 and 59. The changes I propose may seem puzzling or pedantic, but, when dealing with legislation about life and death, every word matters. My amendments aim to bring the same care for language to subsections (2) and (3) as is used in subsection (1), which sets out that only if the conditions in paragraphs (a), (b) and (c) are met then assistance to end a person’s life, in accordance with Clauses 8 to 30, may be provided. If any of these conditions is not met then the action is subject to the existing criminal provisions of the Suicide Act 1961.
As they now stand, subsections (2) and (3) do not set out conditions in this way. Rather, they describe other parts of the Bill. Clause 1(2) is framed as an observation about Clauses 8 to 30, and Clause 1(3) apparently sets out a geographical marker for the certain steps provided for elsewhere in the Bill that “must be taken”. Subsection (2) therefore seems entirely redundant, since it purports merely to note what is said elsewhere. Subsection (3) is puzzling. Is the “must” a mistake or should it be “may only”?
Perhaps more important than such redundancy, inelegance and imprecision in drafting is that, in their present form, subsections (2) and (3) do not deprive those who act in contravention of the paragraphs they contain of the protection of the law from assisting suicide. They fail to make it explicit that this remains prohibited and punishable unless it meets subsections (2)(a), (2)(b), (3)(a) and (3)(b). My amendments would remove this perhaps unintentional looseness—the sponsor may wish to comment on the intentionality or otherwise—by making it explicit that assistance to end a person’s life may not be provided unless subsections (2)(a), (2)(b), (3)(a) and (3)(b) are all met.
Baroness Berridge (Con)
My Lords, I support Amendment 38, which raises for the first time in your Lordships’ House the complex issue of those who may be physically terminally ill but also have long-standing mental illnesses. While the legislation cannot be used only for mental illness, under Clause 2(4), cases where there is physical and mental illness can be very complex and particular safeguards will be needed. My main questions around those safeguards are for those who may be detained under the Mental Health Act, and are matters more for the Minister than the sponsor.
I served on your Lordships’ Select Committee on the Mental Health Bill. A person detained under the Mental Health Act may yet still have capacity to make some or most of their own decisions. If someone has gone through the process in this Bill with a six-month prognosis but is outliving it, they can also have regular periods of being detained under the Mental Health Act. It is important that we are clear about the position legislatively for the patient, clinicians and their family. What is the position? Which of these statutes will make clear which piece of legislation takes priority, if it is the case, as I understand it, that there are scenarios where both pieces of legislation could apply to a particular patient? You can be terminally physically ill and detained under the Mental Health Act but still have capacity, so you would be under the TIA as well as the Mental Health Act.
For clinicians, this relates to the strident evidence given to the Select Committee of your Lordships’ House on this Bill by Professor Alex Ruck Keene KC. This was partly outlined by my noble friend Lord Goodman previously in Committee when he was speaking about teaching clinicians on capacity and the criminal law. He said:
“I need to be able to say, with crystal clarity, ‘You’re no longer in that zone”—
meaning the suicide prevention zone—
“you’re now in the zone of the Terminally Ill Adults (End of Life) Bill’”.—[Official Report, 14/11/25; col. 522.]
Obviously, the suicide prevention zone he was referring to is a general duty for clinicians to all patients, but it is highly relevant when there is detention under the Mental Health Act. When you are thinking of a patient under the Mental Health Act, it focuses that issue down.
It is important to know which regime takes precedence for the family. This Bill is about individual autonomy, so the family are irrelevant. The new Mental Health Act, however, has extensive powers for nominated persons—and that is often family members—to exercise certain powers and even to discharge the patient. It is also key for the patient who has capacity but is under the Mental Health Act and has a six-month prognosis. Under the Mental Health Act, they can be made to take treatment—treatment that may well then mean they do not want to take the action in their existing declaration under the TIA. Has the Minister considered how the new Mental Health Act relates to this situation?
This issue exemplifies that the Committee of this House is actually trying to provide a White Paper or consultation function. The problem I have outlined, and that Mr Ruck Keene outlined, stems from the different philosophy of each of these pieces of legislation. The terminally ill adults Bill is all about personal autonomy, but the Mental Health Act is about treatment of illness, prevention of harm and preservation of life. This Bill is the state enabling and enhancing autonomy to take your own life, but the Mental Health Act is the state taking away some of your autonomy to preserve your life and prevent you taking it. One of the guiding principles in the new Mental Health Act is enhancing choice and autonomy, precisely because the Act’s powers take away some of an individual’s autonomy, even when they still have capacity. Given that we have different philosophical bases for two pieces of legislation, no wonder there is not the crystal clarity needed, as Mr Ruck Keene outlined, by him and other clinicians.
In practice, there is a human face to this. Take, for instance, a young adult who lives at home. They have been out of secure care for decades, they have always been treated well, their suicidal ideations have been managed, and they are well known to the local services, but they now have a terminal physical diagnosis and a six-month prognosis. They have gone through the procedure in the Bill but are now outliving that prognosis. Under the powers of admission for mental illness, they are treated, and, having been treated on a number of occasions, no longer want to exercise their declaration. But their family carers go on an extended holiday, so they go to stay with other family in a different part of the country. They become mentally ill and they are admitted, and they have capacity under the Mental Health Act. Can their declaration under the TIA Bill be used in this situation, or do they have to be treated? Do the nominated persons have to be told? If you are exercising a TIA declaration, you are no longer under the Mental Health Act.
Could it be that the TIA Bill is actually used without the family being told, which we know is the scenario given by evidence from medical examiners? They come home and their relative has died, and no one knew they had just been accepted on a clinical trial at the local hospital.
Lord Deben (Con)
It seems to me that this an opportunity for the noble and learned Lord to help the Committee and speed the Bill. Here are a whole series of amendments designed to deal with the genuine concerns of the experts who are going to have to actually carry this law into effect if we are to pass it. Some of us may have strong views about the principle, but we have a duty to do our best to make the Bill work.
One of the problems people have is that the noble and learned Lord has so far not been willing to tell the Committee that he will meet concerns by proposing amendments himself. In this particular group of amendments—which is why I tried to wait until the end of it, because it is not only on an individual amendment that I speak—there are a whole series of reflections of the concerns of those who will have to deal with the Bill when it is passed.
This is an occasion in which we can overcome a lot of the concerns—I might even say suspicions—that there is no intention of changing anything, and that it will just be pushed through, however long it takes, in order that there should not be a concern at the other end of the Corridor. I am sure that the noble and learned Lord does not really think that, but he needs to reassure the Committee. We will get much further, much faster if he can look at these amendments and say he is going to bring forward amendments that reflect the concerns here, which themselves reflect the concerns of the various medical bodies in particular, in order that the Bill will be a more effective Act.
If the noble and learned Lord does not do that, there is a very serious criticism of the Bill, that we are not reflecting in this House the concerns of those who, next to the people who make this choice, matter most: the people who have to implement it. All the medical bodies have reservations. Some few are opposed to it in principle. I am perhaps more interested in those who are not opposed to it in principle but who are concerned about it in practice. If we are not prepared to make the changes that make them happy—though perhaps “happy” is the wrong word—and able in good conscience to support the Bill and follow it through, then we will not have done our job as this reforming House. I say this because I have become rather weary with the fact that what appears to be true is that there are those for whom this is so important a doctrinal position that they are not prepared to consider that this particular formulation needs alteration.
Therefore, I ask the noble and learned Lord, when he comes to answer, to consider very seriously a willingness to say, “I will go through these amendments, talk to the people outside if necessary and bring forward the kinds of amendments that will meet the real concerns of those people upon whom I am going to depend for the efficacy of this legislation if it is passed”. If the noble and learned Lord is unable to do that, more and more of us will begin to wonder whether this is really a debate in which we are trying to improve the Bill and make it the best legislation possible, or merely one that will be prolonged for as long as possible in order to put through the exact same Bill to the House of Commons. Frankly, if it is that, all of us who have doubts about it should redouble our doubts. If it is not that, we have a duty to help the noble and learned Lord to get the best Bill possible. It is in his hands, and this may well be the moment for him to show his hand.
Baroness Jay of Paddington (Lab)
I wonder whether the noble Lord would accept the actual evidence of one member of the medical profession who gave evidence to the Select Committee. She reflected many of the concerns that people who support the Bill agree with. She said that, when the healthcare professions
“get it wrong … it is usually because we are being paternalistic”.
A great many of the amendments in this group are very well intentioned and meaning in their concern for patients, but we must allow for the fact that they rely on an assumption that the medical professions, in their doubts, may act paternalistically.
I have been married for a very long time to a doctor. He would certainly say that the practice of medicine has changed hugely in his lifetime, and that when he first qualified as a young doctor, the field was paternalistic. However, now there is a much greater assumption that the words, intentions and wishes of the patient should be the ones that carry force. That is obviously the philosophy behind so many of these amendments, which, in a sense, seek to reintroduce the paternalistic attitude of the medical profession. In contrast, those of us who support the Bill are much more concerned to support its underlying principle of the autonomy of the individual patient.
Lord Deben (Con)
I hope that it was an intervention, because, if so, I am able to comment on it. If we start talking about paternalism, we will go backwards in time. We are not really talking about that at all; we are talking about the legislation of this House and the House of Commons. We are talking about how we produce legislation that works. What worries me is that there are a lot of words being used, such as “paternalism”, “kindness” and others, that are making us less precise. Law has to be precise enough for it to be properly implemented.
Frankly, the intervention of the noble Baroness sums up something else. There is a paternalism among some in this Committee who feel that they are so right about the Bill and that they can therefore ignore the comments of people who are trying very hard to overcome their own prejudices—if that is the right word—to get the Bill right. I find it a bit discomfiting to be lectured to, from time to time, as if I should not be making any of these comments because I do not seem to understand the higher views that are being presented. After being a Member of Parliament for 40 years and knowing what goes on in families in terrible circumstances, all I am trying to do is protect people. That is my job; it has been my job all my life. In response to the noble Baroness shaking her head, I say: that is not paternalism; that is the role of leadership in any circumstances. It is what decent people do, and, above all, it is what kindness demands.
Lord Harper (Con)
My Lords, I will speak to two blocks of amendments in this group. Before I turn to that, I just want to pick up on the points that my noble friend Lord Deben made. I strongly agree with the thrust of his speech, and I look forward to the response of the noble and learned Lord, Lord Falconer of Thoroton, to this group, not just to the specific amendments. Perhaps it will give us a sign of how he intends to respond.
I agree that if the noble and learned Lord listens to the concerns of the Committee and sets out clearly on the Floor of the House on the public record what he intends to do about some of them, that is the best way, from his point of view, to make progress. It is important that those commitments are made on the Floor of the House in public, rather than in private meetings. That is how Ministers generally conduct themselves when they discuss concerns with Back-Benchers. They might have meetings to discuss those concern, but, certainly when I was a Minister, I was always expected to set out at the Dispatch Box what I was committing to do on behalf of the Government so that people were confident that we all had an agreement and that it could not be walked back. Given that we are in a slightly different situation here, because it is a Private Member’s Bill and the noble and learned Lord is the sponsor, I would expect him to behave in the same way as a Minister piloting a Bill to give that level of public transparency, and I hope he will be able to do so.
I will pick up on what my noble friend Lord Deben said in response to the noble Baroness, Lady Jay of Paddington. I agree with her that we should not be paternalistic, but I do not agree that that is what we are in danger of doing. This group of amendments is about making sure that other people are not making decisions on behalf of the individual who is going to end up losing their life. This is about making sure it is actually their decision, that they are not being pressured into it and that someone is not making it on their behalf. Allowing somebody else to allow someone to be killed is the paternalistic thing—to turn a blind eye to it and do nothing about it. To make sure that it is genuinely that individual’s settled will is the opposite of paternalism. That is what we are trying to do in this group of amendments.
The first amendment I want briefly to refer to is Amendment 28 in the name of the noble Baroness, Lady Finlay of Llandaff. It is about setting out in the eligibility criteria that someone is entitled to benefits under the special rules, for example, personal independence payment on the grounds of terminal illness. I accept that the noble and learned Lord, Lord Falconer, may quibble with the wording, but the point is to make sure that the person has gone through that process to apply for that benefit to make sure that one of the reasons they are seeking assisted suicide is not because of financial pressure. There may be other ways of achieving that, but that is the purpose of the amendment, and that is very important.
The Committee will be aware that under our rules for personal independence payment, if you have a terminal illness diagnosis, there is a fast-track procedure, rightly, so that you can get financial support much quicker than under the normal process. That is very important to ensure that someone facing a terminal diagnosis does not have financial pressures added to all the other things they are dealing with. The amendment is a sensible way of ensuring that someone has got that financial support and to make sure that is not the reason they are seeking assisted suicide.
Secondly, I support Amendment 31 and Amendments 68 and 68A, to which I have attached my name. They would make sure that it is genuinely somebody’s own request. The reason why that is important is—we will hear from the noble and learned Lord in a minute about whether he thinks the drafting of the Bill already deals with this—that I am very mindful of the issue that we hear about pretty much every week, and I suspect we will hear it again today from the Minister, who usually has an extensive piece in her briefing that counsels us on concerns about the European Convention on Human Rights and the extent to which decisions that this Committee takes might end up being challenged under that legislation and that we should bear that in mind.
I always listen to the Minister with care, and I am effectively doing what she is asking us to do, which is to be concerned about that issue. Even if the noble and learned Lord, Lord Falconer of Thoroton, is able to assure us that, in his view, the Bill as drafted does not present that risk, I still want him to look seriously at these amendments because of my concern—which we have seen in other jurisdictions—about judicial oversight and judicial moving of the goalposts. This legislation will inevitably be challenged, and I want to make sure that we do not find judges starting to move the goalposts when there are challenges and allowing things to happen that we would not have wanted to happen.
Baroness Butler-Sloss (CB)
My Lords, I very strongly support what the noble Lord, Lord Deben, said. I would just like to correct something that the noble and learned Lord, Lord Falconer of Thoroton, said in his email yesterday, I think. I am extremely anxious to get this Bill through to Third Reading, but I profoundly dislike it, and I never said that I wanted to get it right the way through to the House of Commons. I just wanted to put that right.
I doubt the point made by the noble Lord, Lord Harper, that judges would be moving the goalposts. I think he is in a different world from me. Having been a judge, I do not remember ever moving the goalposts; it is only when the law is uncertain that judges, from time to time, have to come to decisions.
Lord Harper (Con)
I am very grateful to the noble and learned Baroness and, of course, I defer to her knowledge of the law. The point I am making, which I think is the same point, is that we should make sure that the legislation is absolutely clear, so that there is no risk of that. The other issue, of course, is that so much of this legislation is not in statute but left to regulations, which are much easier for judges to challenge than primary legislation.
Baroness Butler-Sloss (CB)
I am not at all sure that they are. If Parliament has passed regulations or primary legislation, judges apply it; they certainly do not try to move the goalposts. That is the only point I am making.
The last point I want to make is that as the recipient of a lasting power of attorney, which is in the hands of my children, I certainly do not want them to decide when I die.
Lord Moore of Etchingham (Non-Afl)
My Lords, I support the point about lasting power of attorney that the noble Baroness, Lady Coffey, has made and the noble Lord, Lord Harper, has reinforced, but I also want to look at it another way round. The fear—which is a very justified fear—is that the power could be abused in the case of assisted suicide, but I also think it is important to look at it from the point of view of the person who has given the lasting power of attorney.
Many noble Lords will have lasting power of attorney—I declare that I do myself—and it carries certain responsibilities. One thing that surprised me when I first got lasting power of attorney was that I might be asked to take a view about whether a “do not resuscitate” order should be given. Of course, that was an intimidating responsibility and something that I needed to establish with the person concerned. I understand why it had to happen, but it was pretty difficult and anxiety-inducing. Imagine if we who possess lasting power of attorney had some responsibility to take a view about whether the person over whom we have those powers should have an assisted suicide. It would seem a very unpleasant responsibility, and therefore it is important that both sides—the person who transfers the powers and the person who receives those transferred powers—should be quite excluded from this.
Lord Markham (Con)
Every point that has been raised is valid, and I am sure that, when the noble and learned Lord, Lord Falconer, gets up to respond, he will acknowledge those points as well. However, I think the question in each case is whether we want it to be a black or white assessment of whether that should apply.
Financial support is a very good example of where in some cases that may be very relevant and in others it may not. I remember that my mother, unfortunately, was given a matter of weeks to live and was helped on her way when there was a matter of days left. The financial circumstances just did not even come into it at that point, so having a black and white assessment saying, “Oh, she didn’t seek financial support or didn’t have it”, was not even a relevant criterion. On the question about mental health and whether someone has had any disorders, that is very relevant if it was a recent episode but I think we would probably say it was not very relevant at all if it was 50 or 60 years ago.
Therefore, in all these circumstances, are we not seeing cases where it depends on the circumstances? To me, it is a question of whether we trust the panel, and whether we trust the doctors assessing the case, who are looking into all the criteria and will have the opportunity to call for any evidence they need on it, to be able to do that.
Lord Deben (Con)
Does my noble friend accept that one of the problems is that the organisations of these very people whom we are trusting have said that they want clarification on these things. The issue, therefore, is that we should be giving them that clarification that they want, and then we can trust them. They say they do not want to be trusted unless they have that clarification. That is the only point we are trying to make.
Lord Markham (Con)
Again, it is about whether you put that financial support clarification in black and white and say, “This must be something that someone’s done”, where it might not even be relevant to the circumstances, or where the—
Lord Scriven (LD)
The fact that somebody has a terminal diagnosis of six months automatically triggers SR1, so that part of the amendment is superfluous. There are things in amendments that automatically happen but which they would put in the Bill, but they do not need to be put in the Bill by the amendments because they already happen.
Lord Markham (Con)
This whole debate shows that these are not black and white matters. Although they are all relevant criteria, which absolutely should be in the assessment—my understanding from the Bill is that they are in the assessment—it should not be put down as some sort of tick-box exercise that says you are either eligible or not, according to them.
Lord Harper (Con)
May I just check: is the noble Lord, Lord Markham, really saying that he wants it to be open so that a lasting power of attorney could be used by somebody else to seek the death of the person on behalf of whom they have that power? Does he want that to be available? I do not think he does, and it appeared that the noble and learned Lord, Lord Falconer, did not either. If we do not think it should be, we should rule it out.
Lord Markham (Con)
What I am trying to come back to—a point that my noble friend Lord Deben was making—is that there are some valid criteria here. I am trying to build some flexibility into this system. Lots of eligibility criteria are being set out here, in all these different amendments.
Baroness Berridge (Con)
I believe that the noble Lord answered that intervention, so this is separate.
The noble Lord served on the Select Committee with other noble Lords. We heard clear evidence from Alex Ruck Keene and others that this is not about flexibility: you need to know which piece of legislation you, as a clinician, are applying. Are you acting under your general duty on suicide prevention or, as in the example I gave, are you acting under either the Mental Health Act or TIA? There is no flexibility. Clinicians are asking for clarity on this; with all due respect, that needs to be in the Bill.
Lord Markham (Con)
It is about whether we are trying to build everything in; I will try to make my point now that I have taken a few interventions.
The point I am trying to make in all this is that these groups of amendments set out lots of different eligibility criteria. Some are about nursing homes and whether you are a resident. Some are about whether you have ever had a mental health assessment. Some are about financial support. Everyone in every circumstance says that, in some people’s circumstances, these criteria are very relevant and should be the criteria set down for doctors. It should be very clear that, under those criteria, the doctors and the panel should be taking these things into account. The criteria might be totally irrelevant for other cases, too.
We are trying to give the doctors and panels the opportunity to make these decisions without being tied up in knots over black and white exercises around whether the law is applicable to someone according to this or that, so that we can have a workable set of rules that takes into account all noble Lords’ concerns to make it as safe as possible—quite rightly—and creates a process whereby, ultimately, it is the experts, doctors and social workers on panels who are best placed to make a decision.
Lord Winston (Lab)
My Lords, I wonder whether I could briefly come back to something that the noble Lord, Lord Deben, said. I have a great deal of respect for him, and I agree with a great deal of what he said in his speech just now, but I suggest that, when it comes to medical practitioners and the medical and caring profession, the word “concerns” does not mean that they are against the Bill. It is very important to understand that.
As a member or fellow of a number of these different organisations, what surprises me is how little of the correspondence from them is actually against the Bill. Sometimes there is some concern—of course, this needs reasonable regulation and proper agreement— but, overall, we must be very careful about how we understand their words. I have certainly not heard from my colleagues in many conversations over these past months that the Bill should be stopped. On the contrary; they are interested to see how it goes. I certainly think that many of them would say that they feel that this is a good Bill to look at.
Lord Deben (Con)
May I interrupt? I did not for one moment suggest that I was concerned about this because people were opposed to the Bill. What I said—indeed, I said this specifically—was that I was not thinking of those who were in principle opposed to the Bill. What I wanted to say was that specific concerns had been expressed, and that some of these amendments seek to meet the concerns of the very people who are going to carry this Bill through. I was not proposing this to stop the Bill; I was saying that even those of us who do not like the Bill want to do our job, which is to produce a Bill that will be at least, in the proper terms, workable. That is the only point I made.
Lord Winston (Lab)
I thank the noble Lord for this conversation. I am glad to hear him say that but, unfortunately, the word “concerns” is often bandied about by people who just say, “Well, of course, the doctors are against this Bill”. That is not a fair assumption; it is certainly clear from the Select Committee evidence we heard that there are various opinions.
Lord Blencathra (Con)
I want to speak briefly in firm support of this suite of amendments, because they do not obstruct compassion but restore clarity and protect the vulnerable. As many noble Lords have said, the Bill leaves crucial decisions to discretion and delegated guidance. As my noble friend Lord Deben said, it is not precise.
Where I slightly disagree with my noble friend Lord Harper is that I am worried not about the judges moving the goalposts on the main Act of Parliament but because I believe that there will be more than 40 regulations, of which we have seen neither hide nor hare. We will not even see a draft before the Bill becomes law, and every single one of those regulations will be wide open to judicial review. That is where the judges will not have to move goalposts but have to fill in gaps on issues that neither House of Parliament has considered. They will have to decide whether the goalposts are for rugby or football, which neither House will have determined. I am deeply concerned that the Bill is not precise enough on the details that noble Lords have specified.
That imprecision leaves a big legal vacuum, where the most sensitive judgments about life and death can be initiated or driven by others, where serious mental illness can be overlooked and where people in care homes or in poverty can be pushed towards an irrevocable choice without robust, statutory safeguards. The amendments in this group are practical, proportionate and targeted fixes to those gaps.
First, the amendments make it clear that only the person themselves may initiate a request and that lasting powers of attorney cannot be used to start the process. That is essential, and I believe the noble and learned Lord, Lord Falconer of Thoroton, agrees. If he does, let us put it in the Bill. The law must not be ambiguous about agency of any sort. Where the law is silent, pressure and expediency will fill the silence. We have seen in other jurisdictions how a third party can accelerate a fatal outcome; the Bill must not replicate that risk.
Secondly, the amendments addressing severe mental health are not an attack on autonomy; they are recognition of clinical reality. A person can meet the narrow legal test of capacity while still having a treatable or episodic mental disorder that drives suicidal ideation. Excluding those with a history or pattern of suicidality from eligibility, or at least requiring a specialist psychiatric assessment, protects people whose wish to die is a symptom rather than a settled, autonomous decision.
Thirdly, the Bill must provide an independent, neutral route for information. Many doctors will rightly decline to participate. Patients must not be left to navigate a black box where the only signpost is a clinician who may be unwilling or conflicted. An independent local service or register would ensure that information was unbiased and accessible, and that the pathway into assessment was not covertly steered by those with other motives.
Fourthly, care home residents deserve heightened safeguards. Undiagnosed dementia and fluctuating capacity are common in residential settings. A single visiting doctor cannot reliably detect these risks in one brief encounter. Requiring a specialist assessment for care home residents is a modest, necessary step to prevent tragic mistakes.
These amendments would not create delay for those who are clearly eligible. They would create clear, statutory thresholds and processes so that clinicians, patients and families knew where they stood. They would reduce litigation risk, prevent inconsistent local practice, and ensure that the law aligned with the seriousness of the act that it permitted. If this House is to legislate for assisted dying, we must do so with precision. These amendments are not obstructionist; they are the scaffolding of a safe, humane system. I urge noble Lords to support them so that the Bill protects autonomy while safeguarding those most at risk of being failed by ambiguity, poverty or untreated mental illness.
I conclude in a more inadequate way than my noble friend Lord Deben did, on the point that he also made to the noble and learned Lord, Lord Falconer. If he cannot produce an assurance of amendments on the Bill that will implement some of the concerns of the royal colleges and of the three Select Committees of this House, some will be left with the impression that his strategy is not to accept amendments but to beg for more time and drive through the Bill, line by line unamended. That would be unacceptable. I hope that that is not the noble and learned Lord’s intention, but he could reassure us all by coming forward with revisions to the Bill and amendments that seek to implement the safeguards for which many organisations outside the House have been calling.
Baroness Grey-Thompson (CB)
My Lords, I shall speak to three amendments in this group—Amendment 38, in the name of my noble friend Lady O’Loan, to which my name is attached, and Amendments 39 and 68. Amendment 38 seeks to address the challenges of those who have bipolar disorder, borderline personality disorder or other conditions associated with episodic suicide ideation, who face a higher baseline risk of self-harm and suicide. Research indicates that suicidal thoughts and behaviours are significantly more prevalent among people with these diagnoses, even without terminal illness, as reported by NICE in 2022 and Public Health England in 2021. Critically, evidence also shows that suicidal ideation tends to increase following a terminal diagnosis, so without the safeguard of this amendment, the Bill risks enabling assisted dying decisions to be influenced by pre-existing mental health vulnerabilities exacerbated by the receipt of a terminal diagnosis.
I support calls in the Chamber today to look at the benefits system. It is a really complicated process, whether you have a terminal diagnosis or not. It is important to learn from other jurisdictions. The 2024 Oregon official report cited that 9% of those who requested to end their lives did so for financial reasons and 42% requested it because they were felt a burden. I think it has already been quoted that in 2011, the noble and learned Lord, Lord Falconer, with the Demos report, said that no remedial mental health condition should be eligible for assisted suicide. I do not expect an answer in the Chamber on this question this afternoon because it might take a long time—I am very happy to meet outside—but I am interested to understand what has changed from his view in 2011 to thinking that this would work in the Bill now.
Many of the amendments talk about a settled wish. I could almost see how somebody could try to justify that, for someone with a terminal condition and suicide ideation, requesting assisted dying might be a form of suicide prevention. I feel like I am tying myself in knots with this argument, but I think when we hear the argument that people are already dying, we need protection for those groups of individuals. The noble Baroness, Lady Jay, who I do not think is in her place—I am sorry, I do not have my glasses on—raised evidence given in the Select Committee and talked about paternalism. My personal experience is that I do not see much paternalism in the health service. What I do see is an awful lot of ableism, and I think that if we are talking about paternalism, we should be talking about ableism as well. From a disabled person’s perspective, this recognises the intersection between disability, chronic illness and mental health vulnerability.
The panel has already been raised in the Chamber this afternoon. The panel is a really important part of the eligibility determination and deciding whether somebody can go forward. I think that one of the only things that the noble Lord, Lord Winston, and I could agree on today is that words are important. This relates to the place of the panel. I draw your Lordships’ attention to the clarification statement that was issued by the Association for Palliative Medicine this week. Because words are important, I am going to read it. It states:
“In Friday’s … debate (9/1/26), Lord Falconer cited, and misrepresented, expert evidence presented to the Terminals Ill Adults committee last year by the Association for Palliative Medicine … Crucially, panel members would not be required to meet the patient. They would, therefore, have no individual clinical perspective to bring to bear on the person applying for an assisted death. This renders the panel a mere administrative review, stripping it of the very nuance and human understanding that defines robust, compassionate decision-making at the end of life”.
This is why these amendments are even more important in terms of what we are trying to do.
I have previously discussed suicide among unpaid carers and the pressure on them. In Canada, there is a case of a man who had carer burnout and arranged for an urgent assessment for his wife. She died that day. That is listed in the Ontario coroner’s report. There is also written evidence to show that two men who had caring responsibilities for their partners ended up doing a mercy killing, which is often, strangely, very sympathetically portrayed in the media.
Amendment 39, in my name, is about recognising where an assisted death could take place and who will be most directly affected. The settings that could be affected include care homes or nursing homes—communities that care for those living with dementia, frailty, disability or advanced illness, where dependency is a condition of daily life rather than an exception.
It is important to recognise that a significant proportion of people living with dementia or cognitive impairment remain undiagnosed until the later stages of the disease. On average, people with dementia live with symptoms for three and a half years before receiving a diagnosis. Current NHS England and Alzheimer’s Society data show that only about two-thirds of those with dementia receive a formal diagnosis. The diagnosis rate in Wales is even lower. This further underscores the need for a specialist clinical assessment before any conclusion about capacity is reached. If one in three people with dementia are never diagnosed, one in three potential applicants under the Bill may have an unrecognised impairment in capacity. This is not a margin of error that any legislator can reasonably accept.
A recent report by the whistleblower charity Compassion in Care further illustrates the heightened vulnerability of care home residents. Based on evidence submitted by over 1,000 care workers who called the charity’s helpline to express their concerns about the Terminally Ill Adults (End of Life) Bill, the most predominant issue raised in 97% of cases was that of fluctuating capacity, which is common among those residing in care homes. The British Geriatrics Society, which gave evidence during the Select Committee, estimates the prevalence of delirium among care and nursing home residents to be as high as 60%.
Amendment 68 is about protecting autonomy. It would ensure that the right to request assistance to end one’s life remains solely with the individual who is terminally ill. It would prevent any surrogate, family member or medical professional making that decision on their behalf. By explicitly prohibiting third-party decisions, we safeguard vulnerable individuals from coercion or misinterpretation of their wishes.
Finally, I would like to ask the noble and learned Lord a few questions. How will he specifically seek to protect those who are in care homes or who may be vulnerable? How will the Bill protect those individuals who have had previous suicide ideation? Where does the Bill seek to understand the intersection of those with suicide ideation who then receive a terminal diagnosis and whether this is a genuine, settled wish? How, through the Bill, will we be able to offer protection to those who have a previous history of self-harm?
Lord Empey (UUP)
My Lords, following on from the proposal in Amendment 39, from the noble Baroness, Lady Grey-Thompson, one of the issues that perhaps is not fully appreciated or understood—it is only if you have actually witnessed it that you get the full implications—is delirium brought about by a combination of medications that are applied. One particular medication can clash with another and can produce a situation which appears almost like dementia, but the patient is not suffering from dementia but delirium. The noble Baroness, Lady Grey-Thompson, expressed that very well.
The noble Baroness, Lady Berger, spoke to Amendment 31. Again, it seems an elementary thing but, whether a person is sufficiently capable at the relevant point in time and is not suffering from delirium and/or dementia is best judged by the clinician who knows and works with the patient, rather than somebody with a white coat who is dashing in and out of a ward room and trying to assess the person on the hoof.
Like the noble Lord, Lord Deben, and others who spoke earlier, I do not like this Bill. However, as I said at Second Reading, like everybody else in this room I am a legislator. We have a role above and beyond our personal prejudices and beliefs.
I must say to the noble and learned Lord, Lord Falconer of Thoroton, that, as the noble Lord, Lord Deben, mentioned, a lot of issues have come up in the past few weeks. Last week, we had the series of amendments that were ably put forward by the noble Lord, Lord Carlile, which dealt with a very serious issue. The week before, we had five separate issues dealing with prisoners, pregnant women, et cetera, and we have had other issues. I know we are only part way through Committee, but if the noble and learned Lord wants the House to compress the process, rather than have to reiterate all this on Report, then I think it would make a difference to how people approach the rest of this legislation if he brought forward coherent amendments that address the issues that have been raised.
I do not mean to be unkind, but there is no point in him getting up every Friday like Stonewall Jackson and saying, basically, “I’m right and you’re wrong”. There is a difference of opinion—a chasm, in many respects—over a lot of these issues. To be brutal about it, we need to see the colour of his money. I hope that would allow us to go forward, but unless we deal with these fundamental, basic issues then we will have a very long slog indeed.
Lord Wolfson of Tredegar (Con)
My Lords, the amendments in this group relate to two fundamental question: first, who should have the legal right to assistance under this Bill and, secondly, who should not. They are both important questions. We have heard concerns about eligibility throughout the discussion in Committee. In particular, the question of whether the person must be in pain to access assistance has been a point of contention. I think that will come up in the next group, on motivation.
I hope all noble Lords across the Committee will agree that the Bill needs sufficient safeguards to ensure that those asking for an assisted death meet three conditions: first, that they have sufficient reason to do so; secondly, that they have the mental capacity to do so; and, thirdly, that they are fully aware of what they are asking for. If any one of those conditions is not met then someone should not be able to ask for an assisted death on their part. That is because the Bill is generally—intentionally, as I understand it from the noble and learned Lord, Lord Falconer of Thoroton—a tightly drawn proposal. Therefore, it would not be right for the Bill to become law without its provisions tightly defining assistance in line with Parliament’s intentions. I know that reports of incidents in other countries where people have used assisted dying services to end their lives for reasons other than terminal illness are concerning. Therefore, I understand the reasons why the various noble Lords have put forward the amendments in this group.
I will pick up a couple of the amendments. Amendment 28, from the noble Baroness, Lady Finlay, seeks to ensure that people who seek assistance are not doing so out of financial difficulties. As I understand the course of the debates, that does not run contrary to the underlying principle set out by the noble and learned Lord, so I hope he will be able to explain how protections for those in financial difficulty would function under the Bill. Can we strengthen its provisions to ensure that those in financial difficulty who are also terminally ill are not choosing to end their life mainly because of their financial circumstances?
I also highlight Amendment 39, from the noble Baroness, Lady Grey-Thompson, which would require a heightened evidential standard for those living in care homes and nursing homes. We know from events not only but perhaps in particular during the pandemic that those living in care homes and nursing homes are particularly vulnerable. They can be taken advantage of, so I understand the noble Baroness’s motivation in probing the noble and learned Lord on whether there are sufficient protections for vulnerable residents of care homes. Amendment 38, in the name of the noble Baroness, Lady O’Loan, focuses on another particularly vulnerable group: those with certain mental health conditions.
The impetus of this legislation is concern for those who seek an assisted death because they are considered to be in distress or in pain and vulnerable. But in legislating for that vulnerable group, it is important that we do not unintentionally endanger other vulnerable people and groups. I therefore look forward not only to the contribution from the Minister, but to the reply from the noble and learned Lord, Lord Falconer of Thoroton, particularly on whether, going forward, we will receive amendments from him on a rolling basis. That would help not only those on the Committee but on the Front Bench to plan our work.
The Parliamentary Under-Secretary of State, Department of Health and Social Care (Baroness Merron) (Lab)
I thank all noble Lords for their contributions to the debate. As I have said previously, I will limit any detailed comments to amendments about which the Government have major legal, technical or operational workability concerns. To that point, I would like to clarify for the noble Baroness, Lady Berridge, that that does include interaction with other legislation, on account of the Government’s clear duty to the statute book. I heard the noble Baroness make a request for government engagement. Should Parliament choose to pass the Bill, we will work with stakeholders to design a robust and effective service, but in the meantime, engagement is a matter for the sponsor.
Baroness Berridge (Con)
The specific issue I raised relates to a different piece of legislation for which the Minister has responsibility. Once the legislation is passed, if it is not compatible, it is too late. May I make this request? I am not requesting a meeting under the TIA Bill; I am requesting a meeting for the Royal College of Psychiatrists and Professor Sir Alex Ruck Keene under the Mental Health Act. I do not understand why the Minister cannot grant that meeting.
Baroness Merron (Lab)
For the reasons I have already outlined. That is why I clarified that, when I say I am only speaking about where there are particular concerns, if I do not refer to them, there are no concerns to raise for the attention of your Lordships’ House, which I would always be very clear in doing.
The noble Baroness, Lady Finlay, asked about Peers’ access to technical drafting support. To reiterate, as we all know, it is the sponsor who leads on engagement with Peers on policy content. To meet our responsibilities as a Government, we have been working with the sponsor of the Bill on amendments to ensure operational workability, were the Bill to pass. It might be helpful for the noble Baroness if I say that, where amendments were passed in the other place, there was support for the sponsor to ensure that the amendments met the test of being fully workable, effective and enforceable. In those cases, it was for the sponsor to table amendments to address any workability concerns.
Lord Carlile of Berriew (CB)
I apologise for interrupting the Minister, who is being extremely helpful, but one point needs to be clarified as a result of what she just said. I understood the Government to say that, if an amendment is passed on Report, assistance will then be available of the same kind that was available to the sponsor, so that the amendment can become workable in the context of the Bill and other law by the time the Bill is passed. That was a very clear understanding given to me in various quarters. Are we hearing now that that facility will not be given if an amendment is passed on Report? If so, why?
Baroness Merron (Lab)
I am not sure that there is that difference, but I will review the Hansard of this debate and ensure that I come back to the noble Lord and place a copy of my response in the Library. I am not entirely clear about the point the noble Lord is making. I realise that that is disappointing for him.
Lord Carlile of Berriew (CB)
I will intervene only once more. It seems to be fundamentally necessary that, if an amendment is passed on Report that changes something put in the Bill by the sponsor, who has had the advantage of the consultation process we have discussed at length in these proceedings, the same attention should be given to it—and I am sure that is exactly what the noble and learned Lord expects. Otherwise, we run the risk of asking people like the noble and learned Baroness, Lady Butler-Sloss—if there is anyone like her—to move the goalposts, rather than do what she really does, which is be extremely nimble between the goalposts.
Baroness Merron (Lab)
I am grateful for the clarification on goalposts moving. What the noble Lord is saying is correct, and there is not going to be any change to what has been said previously. I hope that he and your Lordships’ House will forgive me if I have not put it as clearly as certainly the noble Lord would have liked. I will still make a review of the words and ensure that everything is clear. I hope that will be helpful.
Baroness Finlay of Llandaff (CB)
I listened really carefully to the Minister. Am I to understand, in my simplistic, non-legal and non-ministerial way, that the drafting of an amendment will be down to us and the Public Bill Office? If that wording, however inadequate, is then voted into the Bill at that stage, advice on workability would be given, and therefore a further correction to vote would be at Third Reading. Is that correct?
Baroness Merron (Lab)
That is the normal way of doing things. I hope that too is helpful.
Amendment 27, tabled by the noble Baroness, Lady Finlay, would require a terminally ill person to have
“made independent contact with their local voluntary assisted death service for information”
in order to be eligible to request assistance under the Bill. However, the fact is that a local voluntary assisted death service is not defined, and the concept does not feature anywhere else in the Bill. Furthermore, no mechanism is provided for assessing whether this eligibility requirement has been met. That would render the Bill unworkable as drafted, and would require further amendments to ensure its workability.
Amendment 28, also tabled by the noble Baroness, Lady Finlay, would add two eligibility requirements for a person seeking an assisted death under the Bill: first, that the person was eligible for benefits from the Department for Work and Pensions via the Special Rules for end of life, the SERL process; and, secondly, that the person had received a home visit from their GP in the six months preceding their request for an assisted death. Not all terminally ill people opt to apply for, or are eligible for, certain benefits at the end of their life. Those people who do not claim would therefore become ineligible under the provision as drafted.
The Bill and the SERL system also have different definitions for end of life. The Bill defines “terminally ill” as six months to live while the SERL process uses 12 months. That would be operationally confusing. Equally, not all terminally ill people will necessarily have had a recent home visit by a GP. That again poses operational challenges for GP resources.
Amendment 28 refers to SR1, the medical evidence form that clinicians issue to evidence that a person is at the end of their life. It is unusual for forms of this nature to be put into primary legislation, and the form by itself does not establish eligibility for benefits. Furthermore, referring to the form in primary legislation could result in delivery challenges should the DWP amend that form at any point in future.
Amendment 38, tabled by the noble Baroness, Lady O’Loan, would introduce several qualifications to the eligibility criteria in Clause 1. This amendment could cause operational challenges for assessing doctors and panels. As drafted, the amendments contain undefined and unclear terminology and it is not evident how these new criteria should be assessed. Noble Lords may also note the risk that the amendments could give rise to challenge on ECHR grounds as they would lead to a difference in treatment for those who have a history of mental health conditions, suicidal ideation or self-harm. Any differential treatment would need to be objectively and reasonably justified to comply with ECHR obligations.
Lord Falconer of Thoroton (Lab)
I am grateful to all noble Lords who have contributed to this important debate. I will deal first with what the noble Lord, Lord Deben, said. Of course I have to listen and make changes; I am not Stonewall Jackson—a tactical genius who died at 39. I am a man trying to do his best aged 74, so I am in a completely different situation. However, the noble Lord makes an important point. I have to convince the House that I am listening and, if sensible proposals are put, I must deal with them. I believe that has been my attitude throughout.
I cite by way of example the very sensible proposals made in relation to involving the multidisciplinary team looking after somebody and incorporating that into the Bill. I am working to try to achieve that. Proposals were made that people between 18 and 25 might be especially vulnerable and need extra protection; I have sought to develop proposals on that. Another example is where somebody has made an application that a person’s liberty be taken away because they are seriously mentally ill or lack capacity, or a person has actually been deprived of their liberty. Again, special provision should perhaps be made for them. I mention these points only to indicate that, far from being Stonewall Jackson, I am the House of Lords trying to do its best to make sure that we improve the workability of the Bill.
In that spirit, I turn to these amendments. My noble friend Lady Merron has gone through the technical problems with Amendment 27. For example, it refers to somebody being referred to an independent voluntary assisted dying service, which might or might not be sensible. I suspect that the later proposals from the noble Lord, Lord Birt, might relate to that. The noble Baroness, Lady Finlay, was making the wider point, which she expressed very clearly, that you should not be making a decision about whether you want an assisted death until you have been fully informed about all the consequences and the processes. She referred to a number of issues, including diagnosis, prognosis and the effect of an assisted death in terms of the substance.
In my respectful submission, the Bill reflects exactly the points that she is making, namely that there needs to be proper information made available to the patient by statute. I draw noble Lords’ attention to Clause 5(5), on the preliminary discussion that has to be recorded. It says:
“If a registered medical practitioner conducts such a preliminary discussion with a person, the practitioner must explain to and discuss with that person—(a) the person’s diagnosis and prognosis; (b) any treatment available and the likely effect of it; (c) all appropriate palliative, hospice or other care, including symptom management and psychological support, and offer to refer them to a registered medical practitioner who specialises in such care for the purpose of further discussion”.
All of that has to be available at the preliminary discussion.
Then, noble Lords will remember that there are two doctors who have to look at it: the co-ordinating doctor and then the independent doctor. Both doctors must, pursuant to Clause 12(2)(c) of the Bill,
“explain to and discuss with the person being assessed—(i) the person’s diagnosis and prognosis; (ii) any treatment available and the likely effect of it; (iii) any available palliative, hospice or other care, including symptom management and psychological support; (iv) the nature of the substance that is to be provided to assist the person to end their own life (including how it will bring about death and how it will be administered)”.
The panel has to be satisfied that all these processes have been gone through. I completely agree with the underlying proposition of Amendment 27, which is that a person should be fully informed—though it is Amendment 42 that puts it in those terms. However, I believe that the Bill has both made provision for that and has the means of enforcing it through the panel.
Baroness O'Loan (CB)
I am grateful to the noble and learned Lord for giving way. Could he clarify what is meant by Clause 12(2)(c)(iii) when it refers to
“any available palliative, hospice or other care”?
We know that palliative and hospice care is available if you can travel to it or if you live in a particular area, but it is not available in a very significant number of areas. So what is meant by “available” in that context?
Lord Falconer of Thoroton (Lab)
“Available” in that context obviously means available in a practical sense for that particular patient. If you live in the western part of England and there is palliative care of a particular sort available in a place you cannot access, that would not be “available”.
My noble friend Lady Merron indicated what the effect of Amendment 28 is, which was again proposed by the noble Baroness, Lady Finlay. The effect is that there are two additional requirements before you are eligible for an assisted death: first, that you are eligible for certain specific benefits available at end of life; and, secondly, that there has been a home visit by a GP to consider it.
Neither of those is appropriate for eligibility requirements for an assisted death. As my noble friend Lady Merron said, you might well not be eligible for particular benefits because, for example, they are means tested and you are above the means. It would be wholly wrong for that to prevent you getting an assisted death if you are otherwise entitled to it. Again, I do not think that the purpose of the noble Baroness, Lady Finlay, advancing that provision was to say, “You’ve got to satisfy these specific requirements”, with all the problems my noble friend Lady Merron indicated.
What I think she was getting at is that you have to be sure that financial circumstance—being short of money—is not a relevant reason for an assisted death. I put forward the Bill on the basis that choice is the key thing. Your financial position might be an element in what makes you reach a decision. From the way that the safeguards are put in the Bill, they are trying to ensure it is your decision, freely made.
Lord Harper (Con)
I am slightly incredulous about this, so I am just going to make sure I understand the noble and learned Lord correctly. As we also heard earlier from the noble Baroness, Lady Jay, he is talking about someone’s autonomy. If you are in a financial position where you feel you are unable to live properly because you have no money, and as a result of that you decide you want to end your life, that is not a freely reached decision; that is being done because of your circumstances. Is he really saying that he is okay with poor people ending their lives, with the assistance of others, because they are poor? That is what it sounds like. All we are talking about with these amendments is putting in provisions to make sure that is not the case. That is not paternalistic; it is protecting people. Exactly as my noble friend Lord Deben said, that is what we should be doing in this House.
Lord Falconer of Thoroton (Lab)
I am saying that what the Bill does is allow you to make your own decision. I am strongly against saying poor people should not have that choice, which appears to be what the noble Lord, Lord Harper, is saying. The evidence from abroad is that it is people from perhaps more financially secure circumstances who make this sort of choice.
Lord Harper (Con)
I am going to come back once more, because the noble and learned Lord suggested why I was saying what I was saying, which is absolutely not the case. What I am saying is that if someone is making the decision because they feel pressured because of their financial circumstances, that is not a free choice; that is a choice that is being forced upon someone by their circumstances. They are not in an equal position to someone with resources. That would be very wrong, and I think people would be horrified that he is suggesting that someone, because of their financial circumstances, should be more likely to end their life than someone else.
Lord Falconer of Thoroton (Lab)
I am saying it is their choice.
I will go on to Amendment 31 in the name of the noble Baroness, Lady Ritchie of Downpatrick, referred to by the noble Baroness, Lady Berger, in relation to the issue. The noble Baroness, Lady Berger, is saying on behalf of the noble Baroness, Lady Ritchie of Downpatrick, that it must be their own request for an assisted death. The whole Bill is posited on the proposition that the person making the request has to be doing it as their own free choice. I draw attention in that respect to Clause 1(1)(a),
“has the capacity to make a decision to end their own life”,
then Clause 1(2),
“has a clear, settled and informed wish to end their own life, and … has made the decision that they wish to end their own life voluntarily and has not been coerced”.
Then, if one goes over the page to the conditions, there is Clause 8(1):
“A person who wishes to be provided with assistance … must make a declaration to that effect”.
The only concession made is in Clause 21 on the declaration. Clause 21(1) states:
“This section applies where a person intending to make a first declaration or a second declaration … declares to a proxy that they are unable to sign their own name”.
It allows a proxy to sign their name. The noble Baroness, Lady Berger, and I are both saying that it has to be you who does it, the person who wants it, the patient. My own view, having consulted on this, is that that is absolutely clear under the Bill and that the terms of the amendment would make absolutely no difference to it legally. I make clear that the policy intent that the noble Baroness, Lady Berger, wishes to achieve is exactly the policy intent that has been achieved.
Baroness Lawlor (Con)
I thank the noble and learned Lord the sponsor for his response, and I agree with him on Clause 1(1), as I said. However, my amendment seeks to bring the same precise language to subsections (2) and (3), because the conditions are not set out in the same way as they are in subsection (1); they are more descriptive. I tabled the amendments for that reason.
Lord Falconer of Thoroton (Lab)
They are more descriptive, but the provisions say “must” each time. Clause 32 says that someone can escape the consequences of the Suicide Act only if they have complied with all the provisions. I in no way disagree with the point that the noble Baroness is making but, as a drafting legal matter, I think it is covered.
Baroness Lawlor (Con)
I find the “must” in Clause 1(3) a bit puzzling. The noble and learned Lord can see that it reads:
“The steps to be taken under sections 8, 10, 11 and 19 must be taken … when the terminally ill person is in England or Wales, and … in the case of the steps under sections 10 and 11, by persons in England or Wales”.
My question of clarification is whether the steps in Sections 8, 10, 11 and 19 must be taken; is it not that they only may be taken?
Lord Falconer of Thoroton (Lab)
It is. The reason the two are different is that Clause 1(2) describes what is coming later in Clauses 8 to 30; Clause 1(3) is a mandatory requirement that the steps that come later have to take place when the person is in England or Wales. So they do different things. Subsection (2) is descriptive, and subsection (3) is a legal requirement. I am very happy to say that the shadow Attorney-General is nodding, which is very strengthening on this.
The one point that I have not dealt with properly, or at all, is that which the noble Baroness, Lady Berridge, made about the interaction between the Mental Health Act and the Bill. I was not sure which specific amendment she was referring to; it may have been Amendment 38, but I do not know. However, as far as I can see, there is no legal difficulty in this Bill sitting with the Mental Health Act because, as long as these conditions are satisfied, the patient is entitled to have an assisted death. There is nothing in the Mental Health Act that would prevent that. I am more than happy to have a more detailed conversation with the noble Baroness and Professor Ruck Keene, if she wishes to bring him along and he is willing to come.
I hope that I have dealt with every amendment put forward.
Lord Deben (Con)
Just one point, as a matter of personal explanation, I did not call the noble and learned Lord Stonewall; it was the noble Lord, Lord Empey, who did so and I do not want to take his excellent comment away from him.
Lord Falconer of Thoroton (Lab)
I apologise. I do not know whether the noble Lord feels that he is withdrawing a compliment or withdrawing an insult, but I get what he is doing.
To the noble Baroness, Lady Cash, before she gets to her feet, I say that she is right. In relation to the ECHR points that were raised by, I think, Mr Stevenson, who was the commissioner—I have the name wrong.
Baroness Cash (Con)
It was Alasdair Henderson, who gave evidence to the Select Committee and raised a lot of the concerns that have been reiterated by the noble Baroness, Lady Berger, and others today. Indeed, the point that the noble and learned Lord makes about being poor and having a choice is something that is really of concern to the EHRC, which raised that in evidence orally and in writing and, subsequently, in the letter to the noble and learned Lord, Lord Hope. Indirect discrimination, because of circumstances, is one of the problems with this Bill that troubles us most greatly. That has not been addressed, which is why the EHRC, without taking a position on the principle, has asked for that clarification. I would like to know whether it needs to write formally to request that, or is its evidence before the Select Committee and its subsequent letter adequate? Can the noble and learned Lord please clarify?
Lord Falconer of Thoroton (Lab)
The commissioner for the EHRC raised a number of points in relation to the risk of discrimination under the convention. The Government have done an equality impact assessment and, broadly, they adopt the approach that it is unlikely that the courts will interfere in a deliberate choice made by the Government, or the legislature in this case, as to what the limits would be of an assisted dying Bill. I agree strongly with that. It is the approach that the English courts have reflected in relation to assisted dying, and it is the approach that the European Court of Human Rights has taken as well. I therefore do not think that the views expressed by the commissioner to the Select Committee are right, but I am more than happy if the noble Baroness, Lady Cash, would like to raise specific ones—or all of them—she can do so with me, and I can raise them with the Government as well.
Baroness Berger (Lab)
On this particular point, there is something fundamental that would equip all of us in this Committee, irrespective of our views on the principle of the Bill before us, which is the equality impact assessment—it is lacking. The equality impact assessment came forward from the Government only at the end of Committee in the House of Commons. The response from the Equality and Human Rights Commission is that that assessment is wholly inadequate and is in no way commensurate to the length and detail that we would expect on a government Bill.
We have obviously already heard from the Minister in response to the current set of amendments, but I would urge that, in future responses, we hear from the Government about whether they might be forthcoming with an updated equality impact assessment in order to inform our discussions, debates and deliberations on what we might be considering going forward. So far, what we have heard from the Equality and Human Rights Commission is that we do not have the information before us. As the commission responsible for this legislation, it has some serious concerns, particularly in terms of the societal impact of this Bill that has in no way been addressed or deliberated by the Government in the way that it would have been otherwise.
Lord Falconer of Thoroton (Lab)
First, I do not agree with the proposition that it was a bad equality impact assessment. Secondly, the noble Baroness, Lady Cash, legitimately raised the question of differing economic circumstances and whether that could that lead to discrimination. If differing economic circumstances could lead to discrimination—the point that she quite properly raised—then almost every single piece of assisted dying law throughout Europe would be contrary to the European Convention on Human Rights. One has to provide some degree of realism about what the limits of the law are. What the courts here and in Europe are saying is that this is a sensitive and delicate area where they will defer to legislatures.
Baroness Cash (Con)
I am grateful for the chance to clarify my point. It is not about litigating any of those complex issues. The EHRC is the regulator for this type of law in this country. The EHRC evidence, given before the Select Committee and written subsequently in answer to the committee’s questions, is that the equality impact assessment is inadequate, and it requests that those inadequacies be clarified. I do not have the text to hand, but it specifies in its letter to the noble and learned Lord, Lord Hope, the protected characteristic categories that it is particularly concerned about. That inadequacy, which was just now highlighted by noble Baroness, Lady Berger, is what is leaving us with our hands tied behind our backs and unable to give an answer in this debate.
Lord Falconer of Thoroton (Lab)
The noble Baroness’s hands are not tied behind her back. Ultimately, whatever the EHRC says and whatever the equality assessment said, we have to decide here whether we believe that, because of problems surrounding the convention, we should make amendments. I am very happy to discuss any of them. It is clear—Stonewall Jackson is back—that I am not that persuaded that we need changes, but I am more than happy to discuss them. I would welcome a discussion with the noble Baroness, and anybody else who wants to come along, about amendments that she is particularly worried about. I am starting from the proposition, which is reflected in the equality assessment, that the courts are very unlikely to make much change here. I am fortified in believing that by what the noble and learned Baroness, Lady Butler-Sloss, said. I am happy to take any other questions.
Baroness Finlay of Llandaff (CB)
My Lords, this has in many ways been a fascinating debate, which has clearly illustrated the problems of this being a Private Member’s Bill and the difficulties that we are having in trying to raise issues and draft amendments to improve it. There have been a lot of suggestions about how the Bill could be made safer because of the concerns about coercion and protection for people. I will not take time commenting on every comment made, but I am grateful for all of them.
On the lasting power of attorney, I caution against dismissing this going into the Bill, given the number of complaints that go to the Court of Protection, where lasting powers of attorney have been abused by people who hold them. That needs to be looked at carefully.
I appreciate the fact that the noble and learned Lord, Lord Falconer, has begun to look at enhanced assessment for people who may be particularly vulnerable. It would be helpful to know when those amendments will be before us for us to consider them and whether that will be before we get into further rounds of amendments, which we will then be told are poorly drafted or not workable.
I am very grateful to the noble Lord, Lord Wolfson of Tredegar, for re-emphasising the criteria about having a fully informed decision, including the capacity to make that decision voluntarily. If I heard the noble and learned Lord, Lord Falconer, correctly, it sounded to me as though he is willing to accept my Amendment 42, which seeks to insert the word “fully” ahead of the word “informed”, to ensure that a fully informed decision is being taken.
I will make some comments on poverty. Unfortunately—
Lord Falconer of Thoroton (Lab)
Sorry, I do not want to create false hope. I do not believe that the word “fully” is necessary. The noble Baroness is right to say that I never made that clear. I do not believe that it is necessary because I went through all the provisions that required the information to be given anyway.
Baroness Finlay of Llandaff (CB)
That is disappointing, because the Committee, I think, would greatly welcome recognition from the noble and learned Lord that some of the things that we are trying to put down are seeking to improve the Bill. Perhaps we could work further on them.
On poverty, unfortunately, the SR1 does not happen automatically; there is no automatic trigger. The point of that amendment was that one wants to make sure that a person who may be in real financial straits and who has never known that there may be benefits for which they are eligible has someone ask them, “Are you finding things particularly difficult? Do you know that there are some benefits that might help improve your quality of life?”, irrespective of whether they do or do not wish to proceed. It is not to stop them; it is to make sure that they can access what they need.
The Ontario coroner’s review reports that there are people who, because of financial stringencies, have sought an assisted death—and been approved for one—but then dropped that request when there has been fundraising and donors have come forward to bail them out of their difficult circumstances. Saying that there are no such cases is really difficult. As I understand it, it is our duty to society to try to narrow the gaps on poverty and not just accept that, if you are in poverty, you may want to take this decision. There were some expressions of slight horror, I think, at the way in which the noble and learned Lord expressed his dismissal of poverty.
There is one final thing that I want to clarify; I feel, professionally, that I must. The noble Lord, Lord Markham, has referred on a few occasions to his mother being “helped on her way”. I am sure that the doctor was not giving the noble Lord’s mother a massive and lethal overdose of drugs, which is what would happen under this Bill. They may well have been giving her a little more analgesia or some other medication in order for her to be comfortable. That is routine clinical practice when people are dying. At that point, we as clinicians will say to the family, “Look, they don’t seem comfortable and they really are near the end”, and we will give a bit more analgesia—possibly an anxiolytic as well—which will allow the person to gently let go of life and die.
We know that pain is a potent driver of respiration and that people cannot let go of life until they are comfortable and out of pain. Sometimes it is a small dose; sometimes it is a larger dose. That is not what we are talking about in this Bill. It is important that the people out there who are listening to this debate do not think that we are going around shortening life by giving people the dose of analgesia or the anxiolytic that they need at the end of their life.
I am not going to go through all the other comments that have been made because of time—this has been a long and very informed debate—except to request that the equality impact assessment be looked at again. Although it may not be the opinion of the noble and learned Lord that it is inadequate, we have heard substantially from people who know equality impact assessments well that they are unhappy with it. I do not see the harm in it being revisited and retabled for us so that we can have an up-to-date version. Perhaps the same should go for the impact assessment, since there are concerns that the numbers in it may be inappropriately low. With that, I beg leave to withdraw my amendment.
Lord Weir of Ballyholme
“(e) is not substantially motivated by—(i) not wanting to be a burden on others or on public services,(ii) a mental disorder (including depression),(iii) a disability (other than the terminal illness),(iv) financial considerations, including a lack of adequate housing,(v) lack of access, or delayed access, to treatment or other service which a public authority is required (or can reasonably be expected) to provide, or(vi) suicidal ideation,”
Lord Weir of Ballyholme (DUP)
My Lords, I have notified the Lord Speaker’s office and the Whips that I shall be moving Amendment 30, which stands in my name and those of the noble Baronesses, Lady Foster—who is unable to be with us today—and Lady Fox, and the noble Lord, Lord Empey. This group of amendments deals with the issue of motivation, and there is a level of link with the previous group, which dealt with eligibility. In the interests of time, I will allow the proposers of the other amendments to speak to those and will concentrate entirely on Amendment 30.
The purpose of Amendment 30 is largely to ensure that the Bill remains true to what I think is one of its key underlying principles: that when dealing with the substantial motivation of anyone applying for the assisted dying service, there is a critical, causal and direct link between that desire to have an assisted death and the terminal illness, and the application for an assisted death does not arise from a range of other motivations. Also linked to this is an attempt, at least, to ease the gap between two tensions that will lie within public policy should the Bill become law. Should it become law, the state will play a role in assisting the death of members of the public, while at the same time there is a public policy commitment and priority to try to prevent suicide. In many ways, those two objectives are pulling in opposite directions. Amendment 30 at least tries to create a little bit of clear blue water between the two; it cannot square that circle, but it goes some way towards dealing with the issue.
Sticking to the original principles of the Bill is all the more important because one of the most fundamental motivations behind it had to be abandoned from the face of the Bill. We know that the proposer of the Bill in another place, Kim Leadbeater, has said on numerous occasions—both before the Bill was proposed and during the debate on it—that it is principally about pain and suffering. Indeed, on one occasion, she made the comment to the then Archbishop of Canterbury:
“My proposed legislation is less about ending life, but very much about easing suffering and shortening death”.
I am sure that the noble and learned Lord, Lord Falconer, will give us very good reasons as to why this is the case, but nowhere do pain and suffering appear as part of the Bill. That issue will be probed particularly by the amendments in this group tabled by the noble Baroness, Lady Coffey.
To ensure that there is that strong, critical, causal link between the termination of life being the motivator and the assisted death, Amendment 30 seeks to exclude six other areas that could be considered as substantial motivation for an assisted death. The first is a lack of access, or delayed access, to alternative medical treatments. I do not wish to reiterate the earlier debates we have had—for instance, on palliative care, or the question marks that are sometimes there about a certain level of postcode lottery in the NHS. Those issues have been debated already, but if we are to fulfil what I think is one of the key arguments for the Bill—that of bodily autonomy—and if there is to be autonomy, autonomy has to be real choice. If there is no reasonable opportunity for access to any alternative medications, it is not really a choice, and that should not be the motivation for an application.
Secondly—again, this was touched on during the debate on the last group—the substantial motivation should not be lack of resources. I agree on one thing with the noble and learned Lord, Lord Falconer: this should not discriminate against people on the basis of socioeconomic background. Therefore, lack of resources should not become a driver for the poor to go down this route because they do not have any other opportunity. This is not simply a hypothetical concern; we have seen it happen time and again, particularly in the Canadian example, in which people—particularly those with mounting debts, which are quite commonplace among those who are debilitated by illnesses—feel under massive financial pressure, and that the only route through is to have an assisted death. That should not be the principal motivator.
Thirdly, it should not be because someone feels themselves to be a burden. We have mentioned before that we will want to put in all the provisions that we can on the issue of coercion. However, what might be described as “soft coercion” is a feeling among those who are terminally ill that they are a burden on their family and loved ones, and perhaps on society as a whole, which acts as a driver towards assisted dying. Again, there is plenty of evidence that this is a major factor in other jurisdictions. For example, among those persons who applied for assisted dying in Oregon in 1997, around 13% indicated that feeling a burden was a substantial part of their motivation. That figure has now risen to 42% of those applying, and in other jurisdictions it can be even higher. We want to safeguard against that.
The Deputy Chairman of Committees (Baroness Kennedy of Cradley) (Lab)
My Lords, as Amendment 30ZA is an amendment to Amendment 30, I call the noble Baroness, Lady Lawlor.
Amendment 30ZA (to Amendment 30)
Baroness Lawlor
“(ai) not wanting to cause distress or be a burden on their families,”
Baroness Lawlor (Con)
My Lords, I support all six sub-paragraphs in the amendment in the name of the noble Baroness, Lady Foster of Aghadrumsee, which was moved by the noble Lord, Lord Weir of Ballyholme, and is supported by the noble Baroness, Lady Fox, and the noble Lord, Lord Empey. However, I urge that there should be an additional sub-paragraph. As they stand, the sub-paragraphs in Amendment 30 provide a checklist to help those deciding whether to allow an assisted suicide to go ahead to determine whether the person has been led to the decision by an improper type of motivation.
Some of the types of motivation listed here are improper because, if permitted, they would risk leading to a situation where people, under some circumstances, are pressed or influenced into suicide as a way of solving social problems. We have heard quite a bit about that today.
My extra subclause mentions families explicitly and would add to the idea of not being a burden on the family that of not causing distress. It is all too easy to imagine families pressing, influencing, perhaps coercing, an ill person into a suicide they do not genuinely desire by appealing to altruistic feelings that they do not want to be a burden or to cause distress, especially to those they most love. Even worse, it is all too easy to imagine how, in the dismal future of a world where the Bill becomes law—
Lord Falconer of Thoroton (Lab)
Just so that I can properly respond to this, which amendment in the group is this addressed to?
Baroness Lawlor (Con)
It is addressed to Amendment 30ZA amending Amendment 30. It is on page 2 of Today’s Lists.
It is all too easy imagine such appeals by a family to altruistic feelings. They do not want to cause distress or be a burden, especially to those they most love. In the dismal world where the Bill has become law, such ways of thinking will have become a social norm. That is very easy to imagine.
My amendment is designed to make that future a little less dismal, by putting in an obstacle to this insidious form of coercion by those the person in question may love most.
The Deputy Chairman of Committees (Baroness Kennedy of Cradley) (Lab)
My Lords, the noble Lord, Lord Shinkwin, is taking part remotely. I invite the noble Lord to speak.
Lord Shinkwin (Con) [V]
My Lords, I will speak to Amendment 30 in the name of the noble Baroness, Lady Foster of Aghadrumsee, and the noble Lord, Lord Weir of Ballyholme. I also support the other amendments in this group.
I first put on record that while I like and respect the Government Chief Whip, as I know do so many Members of your Lordships’ House, I am deeply disappointed that without consultation and despite my having written to the Prime Minister, it has effectively been decided that, as a severely disabled Member who has to leave the House by 3 pm on a Friday in order catch my flight home, I should not be enabled to contribute on an equal and non-discriminatory basis to scrutiny of a Bill that would have a devastating impact on disabled people if it became law. Instead, I have had to fly home at very short notice so that I can contribute, but unequally, without the ability to intervene in this debate remotely. The Prime Minister never replied to my letter, so I assume this decision is his response. It does not reflect well on him or his great party in my respect. His great party deserves better than being saddled with what everyone knows is ultimately the Prime Minister’s Bill.
Returning to Amendment 30, I hope we can assume that all noble Lords accept the motivations listed in the noble Baroness’s amendment and that they apply. On the basis that the noble and learned Lord is not contesting that fact, I do not understand why anyone would not want a doctor to rule these surely vital motivations out at the start and for the Bill to make it absolutely clear that they must do so. I would be very grateful if, in his closing remarks, the noble and learned Lord could make it absolutely clear that he accepts not only the existence of these motivations but that the Bill should ensure they are addressed, as set out in Amendment 30.
I completely understand why it is difficult for us, as an overwhelmingly non-disabled group of people, and thus a privileged and hugely unrepresentative body, to appreciate the extent to which these motivations go with the territory of being disabled in the UK in 2026. Let us consider the motivation in this amendment of feeling like a burden. Personal experience has taught me that society continues to view disabled people such as me as a burden, rather than as a contributor with equal rights. Such a perspective colours societal attitudes, which in turn inform our continued exclusion by default from employment—just look at the 30% disability employment gap—access to goods and services, such as shops, pubs, bars and restaurants, which any non-disabled person assumes and takes for granted, and, of course, from the policy-making process here in Parliament.
In case anyone would query that, I invite noble Lords in the Chamber to cast their eyes around the Chamber and count how many Members of your Lordships’ House with lifelong lived experience of disability are present today. Even if every Member with such lived experience were present, it would still be the case that no more than 1% of the House of Lords could speak on the basis of such experience. Yet, as a shamefully disproportionately non-disabled lawmaking body, we presume through this Bill that we have a right, effectively, to pronounce on the fate of disabled people, who, the evidence from other jurisdictions shows, will be disproportionately affected by it.
I thank the noble Baroness for tabling Amendment 30 because it gives us an opportunity, following Rebecca Paul’s blocked attempt to introduce a similar amendment on Report in the other place, at least to ensure that disability and other motivations are taken into account. I completely agree with those who argue that the reputation of your Lordships’ House is at stake. It is, but not for the reasons some would have us believe. I believe that our reputation will be irretrievably damaged if we are seen to put completing the process of scrutiny of this life and death Bill ahead of our overriding duty to ensure it is scrutinised forensically. The two are quite distinct.
Let us not be deceived that the time spent blocking amendment after amendment—including Rebecca Paul’s, which I have just mentioned, which mirrored this amendment in the other place—somehow amounts to evidence that the Bill was subject to effective scrutiny before it came to us. It does not. The very fact that the noble Baroness, Lady Foster, has had to table this amendment is proof that the Bill is only now receiving proper scrutiny for the very first time, here in your Lordships’ House.
Baroness Monckton of Dallington Forest (Con)
My Lords, all these amendments address motivation, one of the areas that the noble and learned Lord, Lord Falconer, identified as a key area in his email sent to some noble Lords on Wednesday. This therefore feels an appropriate moment to make some short observations on general matters arising from that email. My amendments focus on risks to people with learning disabilities and autism, and there is also an amendment to exclude hospices that provide palliative care, which is, I believe, true assisted dying.
As I understand it, the email’s proposal has two parts: first, that we move away from this House’s established line-by-line scrutiny and condense 74 groups into 13 areas; and, secondly, that any concessions will be limited to those areas. My question is straightforward and has been asked in various ways by my noble friends Lord Harper, Lord Deben and Lord Blencathra. When will we see the detail? What amendments will the noble and learned Lord make to address each of the areas of concern he has identified as key in the Bill? What are the terms of the noble and learned Lord’s proposals to address the concerns raised by the Delegated Powers and Constitution Committees?
We are told that amendments will be brought forward on Report to address a limited number of these concerns: advertising, independent advocates and some regulation-making powers, but we have not been told which ones. There are now 42 such powers and a further seven Henry VIII powers, but no detail has been provided. Commitments to respond to these reports were made months ago. We need to know.
The email identifies only three further changes: on the position of those aged 18 to 25, those deprived of their liberty through the Court of Protection, and the role of multidisciplinary teams. These are important but they do not go very far. Nor is there any reference to excluding hospices, as suggested in the email from the noble and learned Baroness, Lady Butler-Sloss. Finally, there is no mention at all of the serious concerns raised by five major royal colleges. They were flagged as long ago as May.
To conclude, we need answers long before Report so that all Members of this House can properly consider what is proposed.
Baroness Fox of Buckley (Non-Afl)
My Lords, I thank the noble Baroness, Lady Monckton of Dallington Forest, for that excellently clear way of expressing some of the discomfort and what we would like to see. I would be much happier and feel that I did not have to speak too much if I was getting reassurance and seeing on paper what exactly will address our concerns. At the moment, we are not getting that. We wish the noble Lord, Lord Shinkwin, were here. The fact that he is not is a real shame for the quality of this debate.
Inside and outside this House, I know plenty of people who support assisted dying and this Bill, inasmuch as they know the broad sense of what it is about. I try to avoid living in echo chambers. Whenever we discuss why they support the Bill, and potentially have a bit of an argument, they invariably say, in a very humane and compassionate way, that they think it will help people who are suffering, and that anyone who says they are suffering should have access to assisted dying. It is assumed, therefore, that the motivation of illness-induced suffering is at the heart of the Bill. That is what most people think. It has come up a lot in this Chamber but, ironically, suffering is not mentioned in the Bill, and neither is there any reference to motivations in the way that one would imagine. That bothers me, because the Bill checks on capacity, prognosis and residence, but it does not enforce a check on motivation. It seems to me that we should ask somebody who says that they want assisted dying, “Why?” It is a crucial absence in the Bill, and I hope that the noble and learned Lord, Lord Falconer, might rectify that or explain exactly why the Bill does not think that doctors should ask, “Why do you want assisted dying?” I think it would throw up a whole range of red flags in relation to coercion.
I have added my name to two amendments in this group, Amendment 30 in the name of the noble Baroness, Lady Foster, so ably moved by the noble Lord, Lord Weir of Ballyholme, and Amendment 56 in the name of the noble Baroness, Lady Coffey. To save time,I will concentrate on Amendment 30, which seeks to ensure that those who seek assisted dying are not substantially motivated by a number of factors. I will focus on two of those—not wanting to be a burden on others or public services, and not being motivated by mental disorder, including depression.
This week was the 29th anniversary of the death of my father, John Fox. He was only 66. He was diagnosed with cancer and given three months to live, although he actually made it for four and a half months. When he was told, the whole family was devastated, as anyone would be. The one thing that really shocked me to the core, and stays with me, was that when I had that initial, very emotional father to eldest daughter conversation, my father kept apologising. Believe me, that was not usual. In our relationship, he did not say, “Sorry, Claire” lots of times. He was so distraught. He was convinced that he would be a burden on us, and that his daughters and my mother, in looking after him, would all have to miss work and all the rest of it. He kept saying, “I’m really, really sorry”. He was worried about how we would cope. He did not want to distress others—a point that the noble Baroness, Lady Lawlor, was making on her amendment to this amendment.
I also noticed that he kept saying sorry to the nurses and the doctors. To everybody, he kept saying, “I’m really sorry for taking up your time. I’m really sorry that you’re having to give me so much attention”. There were stories in the media at the time about bed blocking. He was a vociferous reader of newspapers, and I was hiding the newspapers because I thought he would say sorry even more, convinced that he was taking up NHS resources. It took some time and determination for the family to reassure him, but I kept thinking afterwards how sad it would have been if he had been on his own or in a care home or whatever. To be honest, if a GP had suggested that assisted death was a medical option, in today’s circumstances, I think my father would have said yes—not because he wanted it but because he felt he was a burden on the family. It would not be the GP’s fault, as it is an internal feeling of being a burden. That is not the same as choice.
I was struck by a letter from Lord Sumption in the Times that is worth reflecting on. He says:
“The current bill contains a number of provisions designed to ensure that patients are not ‘pressured by any other person’ into taking their own lives”—
that was in relation to something else. He continues:
“The real problem, however, is not the pressure applied by ‘other persons’. It is assumptions which many old and ill people spontaneously make about the attitudes of the society around them. They are afraid of being an emotional or financial burden”.
That is very important.
By the way, I had better say that, in the four and a half months following his diagnosis that my father lived, we had some of the most meaningful time of our lives with him. It was through a veil of tears, but there was love, joy and reconciliation, there were conversations that would never have otherwise happened, and so on and so forth. It was a time that was important to him and to us as a family in a way that I cannot really describe.
Another motivation that I feel strongly we need to explore is on the part of those with a mental disorder. As many noble Lords have noted, a number of mental health conditions have suicidality as a feature. Again, I am sorry to do the personal stuff, but the first time I encountered that was as a young mental health community worker. I met a young man who was bipolar. I and others—psychiatric medics and social workers—worked hard not just to prevent his suicide but, using all our skills in pharmacological and psychological interventions, to alleviate the terrible “black dog” of depression and the horror of the obsessive suicide ideation that that young man had. I have to ask, then, whether the Bill would allow such a suicidal person’s depression-induced desire for death, and whether all those who had worked with him would suddenly be expected not just to welcome it if this young man made the choice of an assisted suicide but to say, “Oh, look, a perfect exemplar of autonomy and choice”.
I was therefore a little taken aback that the noble and learned Lord, in his summation of the last group on eligibility, said in relation to those with a mental disorder that it is their choice, and that if they want it and they have capacity then that is all right. I point out that, for anyone who wants to commit suicide, it is their choice and they want it, but some of us spend a lot of time asking them please not to do it, not saying, “Yippee!” I cannot think that, in that situation, if that young man had said, “I’ve got a terrible story. I’ve got a terminal illness in addition to my bipolar depression, and I want your support and help in assisted dying”, I would say that it is all perfectly fine and he should get on with it, and be delighted for him being able to show that he is a free, autonomous individual. I would say, “Please don’t”. The four and a half months that we had with my father was the kind of quality time that I would want to ensure that young man had, every day of his life, even if he was terminally ill and dying. I would want to make sure that he was not depressed or suicidal during the time he lived.
Lord Empey (UUP)
My Lords, I am associated with some of these amendments. I do not think we want to get completely hung up on the minutiae of each particular line, because there are variations that one could make. I guess that when one is drafting a Bill there are choices to be made and language can be better if one gets professional assistance.
The fundamental point, as has been outlined by the noble Lord, Lord Weir, and the noble Baroness, Lady Fox, is that anyone here who has represented an inner-city, working-class constituency will know that the approach that a lot of people have towards doctors and the medical profession is perhaps different from the approach that we have. If we want medical assistance, I guess most people in this room can pay for it if they so wish. That is not an option that other people have.
Baroness Whitaker (Lab)
My Lords, in connection with Amendment 30, I will just say, in a point of distinction to some of the speeches, that if I were interested in having an assisted death, part of the reason would most definitely be that I would not want to be a burden on my family. I have told my children this. They perfectly understand and I trust them to carry out my wishes. If I do not have any more pleasure in living, I most particularly do not want to add to the burden on my family. It seems to me that that is one of the perfectly good reasons to have an assisted death.
Lord Harper (Con)
My Lords, I will touch on Amendments 30, 56 and 57, the latter two to which I have attached my name. Before I launch into my arguments, it is, if I may say so, a delight for me to see the noble Baroness, Lady Campbell of Surbiton, in her place after an unavoidable absence. She and I worked very closely when I was shadow Minister for Disabled People. I found her insight and lived experience, and her willingness to spend time with me on improving my knowledge of disability, extraordinarily helpful. I was grateful to her for the time that she was willing to spend. I am pleased to see her here in this important debate.
The latter contribution I thought was helpful. It goes to the heart of two issues: what the Bill is about and whether the promoters of the Bill are being entirely straightforward about what it is about. The Bill is called the Terminally Ill Adults (End of Life) Bill, and the primary requirement is that you have a terminal diagnosis. The arguments made for it are almost entirely around preventing people suffering or having physical pain. However, as has been pointed out, that is currently not anywhere a requirement in the legislation.
Sometimes supporters of the Bill do not make that argument. Instead, they focus on autonomy, as the noble Baroness, Lady Jay of Paddington, did this morning, or on choice, as the noble and learned Lord, Lord Falconer, did in response to my challenging him on someone’s financial circumstances. We should be very straightforward. If the promoters of this Bill are arguing that it is entirely about somebody’s choice, they should be very straightforward about it. They should not argue that people have to be suffering and that this is about relieving it—which, as my noble friend Lady Fox said, is what compassionate and kind people think is the motivation for this legislation. If they think it should be open to anybody regardless of motivation, they should say so. It is very helpful when some of them are prepared to say that, because it makes what this is about more straightforward.
This goes to the heart of why many of us have concerns. We know this will get challenged in the courts and be expanded, because that has happened everywhere else. As I said earlier, the Minister keeps telling us about the human rights provisions. They will absolutely be used, if not to change what is in the Bill, to widen and challenge the regulations made under it. That is why so many of us want more safeguards on the face of it and not left to statutory instruments, which we know judges are very happy to change and strike down.
It will get expanded, so the proposed new clauses we have put down about the motivations are important. If it is about choice, it has to be a real choice. For people to have genuine choices, they cannot be forced by circumstance into making them. I was exercised with the noble and learned Lord, Lord Falconer, earlier because somebody might have enormous pressures on them—financial, housing, feeling like a burden or, as others have said, wishing financial resources to go their families. Some think those are perfectly fine reasons for somebody to have an assisted suicide. I do not, and I think most members of the public do not think those are reasons for somebody to kill themselves or seek to have others help kill them. We should just be honest about it. If noble Lords think that is fine, they should say so and we will see whether that argument carries water.
People are not making that argument; it is about whether you are suffering. If noble Lords think that is the critical matter, they should put it in the Bill and make it so that you can get assistance with your suicide only if you are suffering and in pain, and that is the reason for your seeking this course of action. If it is one of the other things, we should rule it out. If you are not prepared to rule it out, it becomes clearer what this is really about.
That goes to the point made by my noble friend Lord Shinkwin and why so many of us have concerns. The remarks I made at Second Reading are absolutely highlighted by these amendments. Not a single organisation of or for disabled people supports this legislation, because they are concerned about two things. As my noble friend said, they are concerned that, because so many disabled people are made to feel that they are a burden or, because of the costs of their disability, have financial or housing pressures that others do not have, they will feel forced into seeking an assisted suicide when that is not really what they want. Secondly, they are concerned that, if society decides that it is okay for you to get help in ending your life because you feel you are a burden or do not want to cause problems for other people, that fundamentally changes how society treats and looks after disabled people. Instead of wanting them to live well and have great lives, and being prepared to find the resources for them to do so, we would rather they were not here. That is the message they are getting.
These groups of amendments make it very clear that this legislation is about alleviating suffering and pain; it is not about the other things. That is why I strongly support these amendments and I hope that, in his response, the noble and learned Lord, Lord Falconer, will recognise that those are the reasons why so many people take a different view from him, If he limited the provisions of the Bill to people who are in pain or suffering, it would reassure the many disabled people in this country who are terrified that the passage of this legislation will fundamentally alter their lives for the worse.
Baroness Grey-Thompson (CB)
My Lords, it is a great pleasure to follow the noble Lord, Lord Harper; when he was a Minister, we had many interesting discussions, although they were possibly not as collaborative as those with my noble friend Lady Campbell. This group talks about motivation and I am sure we are going to be told that these people have terminal conditions and they are dying anyway. We have to understand, however, that there may be a number of other motivations that are part of this.
The noble Lord, Lord Harper, as a non-disabled person—I assume—highlighted many of the reasons why disabled people are very worried about this Bill. We look at what happens in other jurisdictions around the world, including Oregon, Washington, Belgium and Holland. Australia is one of the newer jurisdictions, having recently changed the law, and it has surprisingly high figures on the number of people who request assisted dying because they feel they are a burden. In western Australia in 2022-23, 35.3% of people who requested an assisted death did so because they felt they were a burden. In 2023-24, that figure was 32.2%.
We have to understand that, unfortunately, in the UK currently, the health and social care system is broken for many people. The fact that a person might not be able to get good social care, a job or access to work could add layer on layer to a reason why someone might request an assisted death.
I am told that it is not for disabled people, and I am not suggesting we draw up a list of every single condition of people who would qualify or not. I have spoken many times in the Chamber about how people assumed I would want to change the law because someone with my condition would probably rather be dead than alive. My condition is spina bifida. I assume that I would not be eligible for an assisted death because of that, but, if I got a pressure sore, I would very easily and quickly fit it into that six-month diagnosis.
I have lost many friends through pressure sores, one of whom I was in school with. She also had spina bifida and had a pressure sore on the base of her spine, and one problem with it developing so rapidly was that she did not feel it: she was paralysed and did not realise she had it. It was discovered by the smell. As soon as it was discovered, a number of people around suddenly started talking very differently about that young woman’s life: about how, basically, she would be better off dead, because it was never going to heal.
This is why disabled people are so fearful. If the law changes, it does not matter whether there is one doctor or two in the assessment process—which I do not believe is anywhere near strong enough currently. There will always be ableist doctors out there who would very quickly think and agree that we would be better off not being around.
Let us look at other jurisdictions and the number of people there who choose to end their lives. When I talk to people outside, they assume we are talking about cancer and leukaemia, not lots of other conditions. But in Belgium, for example, the official figures from last year show that 54% of people who requested an assisted death had cancer; 26.8%, however, had polypathology. Now, I am not a medic, so that sounds like an interesting combination of conditions. Actually, though, what is included in those figures is being tired of life.
This comes back to the debate we had in the previous group about the equality impact assessment. That is based on the first 10 years of Oregon, where the numbers were very low because there was no social media and people did not know about it. This provides more evidence of why the Government need to reconsider looking at the impact assessment to actually understand the numbers that might be involved. The noble Lord, Lord Harper, is absolutely right: we need to be honest about what we are doing here, not wrapping it up in euphemisms and easy soundbites. I have said consistently that, when you do an interview about the Bill, it is not easy to lay down every single reason in four minutes as to why a number of people have many concerns with the Bill.
Baroness Campbell of Surbiton (CB)
My Lords, I hope the noble and learned Lord, Lord Falconer, will forgive me for intervening at this stage. I know we are all in a hurry, and I have not got my name on any of the amendments—yet. Noble Lords will know that I have been away for over six months because of an accident on the high seas, when I found myself hurled across the room by a wave. I broke my leg, I dislocated my shoulder, and I had all sorts of internal injuries. I spent the next six weeks in St Thomas’ Hospital, instead of here talking about the Bill. I do not know quite where I would have rather been, but I am here now. I hope noble Lords will forgive my late interventions having not been at Second Reading, but I am jolly pleased to be back, and thank noble Lords for their welcome, which has been very nice.
I want to say something very briefly about burden and motivation. We all know that burden is one of the primary reasons for people to seek an assisted death. That is not only in the conversations I have had here, but we know it is the primary reason throughout the world. Burden is real. It is why, in another life, I set up the organisation the National Centre for Independent Living, because I realised there were hundreds of disabled people living in institutions or in their mum and dad’s back room, basically just surviving, not living.
I also campaigned for a law called the direct payments Act, with which the noble Lord, Lord Harper, will be very familiar. That allowed severely disabled people to employ their own personal assistants, so that they would no longer be a burden on their families. No one wants to rely on their families or their spouses. I certainly do not want to have to rely on my husband to get me up in the morning or to put me to bed at night. I am his wife: he is not my carer; he is my husband. And that is a good relationship.
There is an answer to burden, and it is good social care support. Good infrastructure or technology allows you to be independent and not to be a burden on others, but to begin to plot your life as you want it to be. I know this because I have helped hundreds of disabled people to do it. Some of them had progressive conditions and would not live for long, but the lives they had for those years were good lives—good months and good weeks.
I am not saying that it is always the answer, but we surely must find out from anybody who is asking for their life to be ended, “What are your reasons? Is it because you do not have adequate social care? Is it because you cannot get out of your house, because nobody from the local authority has come to build you a ramp?” For disabled people, people with terminal illnesses and people with progressive conditions, these small things can make the difference between them wanting to die and them not wanting to die.
I know this, because they have told me. Many disabled people come up to me and say, “Jane, you know, I love my independent living and I love my direct payments. If that was taken away and I was forced to go into an institution against my will, I do not know what I would do. I would probably ask for an assisted death”. They were not joking. It is the truth. We should all think about motivation and that is why I support this suite of amendments. We have not really grasped that nettle.
Baroness Royall of Blaisdon (Lab)
My Lords, I too warmly welcome the return of my noble friend Lady Campbell—the most extraordinary person and advocate for disabled people and so many more in our societies. I just remind the Committee that, in all these discussions about burdens and people who have had a stroke— I am terribly sorry that the husband of the noble Baroness, Lady Grey-Thompson, had a stroke—we are talking about six months for somebody who has been diagnosed with a terminal illness. We should reflect on and remember that in all our deliberations on the Bill.
Lord Markham (Con)
I may just build on that, because the noble Baroness is quite right that it is six months. This is absolutely about choice, and behind that choice is the person’s motivation. Of course pain is a very valid reason, but it is not the only reason as, again, research has shown. For lots of people it is about the loss of dignity. For others, it is about the loss of control of bodily functions or about losing autonomy. It is about being less able to engage in enjoyable activities.
Yes, sometimes it is about feeling a burden, inadequate pain controls or financial concerns as well, but that shows that it is a complex area. On average, people gave three or four different reasons or motivations. It is not for us to assess what a valid or invalid motivation is. We should be considering whether there is any coercion in those decisions but, beyond that, it is absolutely about choice. Recognising choice is about people having their own motivations behind this. It is not for us to decide whether they are valid or not.
The Lord Bishop of Chester
My Lords, this is an important and moving debate. It is an honour to speak in it and to follow some of the previous contributions. These amendments highlight the fact that eligibility is not the same as motivation. I agree with almost everything that has been said before me; I will not delay the Committee by repeating those points.
There are two things that I want to bring to your Lordships’ attention. First, I remind noble Lords of points made by my right reverend friend the Bishop of Gloucester. The Bill, if passed, will apply to those in our prison system, for whom there will be very particular motivations, which we need to make sure can be fairly applied to them.
Secondly, if the Bill is passed, we have a duty of care to those who survive the deceased. Some of us have had the privilege of sitting with many bereaved families. In my experience, there is almost not a death which does not leave a huge wake of pain behind it. Indeed, the one or two in which that has not been the case have been some of the most distressing pastoral situations I have ever dealt with. Where there has been an element of choice to that dying, the “what ifs”, the “if onlys” and the longings are deeply profound scars, which live with people for a long time. In passing the Bill—if we do pass it—we have a responsibility of care, not just to those considering their own death but to those left behind, those who are caring and those who long to do everything they can to be with those they love deeply, and to support and enable them to carry on living and to do so well.
Baroness Smith of Newnham (LD)
My Lords, I will briefly speak to these amendments, in particular to Amendment 30. I know from listening to previous groups that the Minister will feel the need to explain that Amendment 30, as drafted, is not fit for purpose and will not help the Bill. However, in Committee, the important thing is to flag the key issues and to see whether we can put forward proposals—I realise that this is a very tall order—for wording suggestions and ideas that might be acceptable to the sponsor of the Bill. There is a set of issues in Amendment 30 that warrants careful listening and attention.
It is not sufficient to say that the Bill is about providing choice. As the noble Lord, Lord Empey, said, most Members of your Lordships’ House have many advantages that would allow us to get specialist treatment, the opportunities of second opinions, and possibly social care that we might need. Other people do not have that. Therefore, it might be appropriate to say at the end of life, “I do not want to be a burden. I want not to be a burden to my family; I should have an assisted death”. That is fine if the choice is that of an individual who has all their faculties and all the resources available to them saying, “This is my choice, and I want to do that”. But what about the person who says, “Actually I think I need an assisted death because there is nobody to care for me, social care in my area is not adequate, the state cannot afford to fund it and the palliative care is not available”?
The answers to the group the end of last week about palliative care started off a series of quite chilling responses. It was said that palliative care is not equal across the country, but we cannot wait until we get something like equality before this legislation should come in. I think that is what I heard the noble and learned Lord say at the end of last week. But why should some people be put in that invidious position of maybe not really wanting an assisted death, but feeling that there is no or inadequate palliative or social care available to them, when other people would not be making those choices?
It is incredibly important that, as this Chamber in Westminster, we do our duty not just to pass legislation because we think that, in principle, it is what society wants and that, in principle, people might want a Bill that allows for assisted dying; we have to ensure that any piece of legislation passed does not leave certain people more vulnerable. At the moment, this legislation does not do that.
Baroness O’Loan (CB)
My Lords, it is a privilege to follow the noble Baronesses, Lady Grey-Thompson and Lady Campbell, who articulated for us the suddenness with which those with a disability can move into the category of those for whom death is imminent. It can happen very suddenly, without warning. Their contributions were enormously important to us as we contemplate this.
There is in the Bill nothing that, at present, would make doctors determine that they are able to identify real coercive threats, particularly where the ill person is being subjected to pressure that may be concealed on all occasions where medical and social care staff are available, but the person is afraid to speak because of those pressures. Making a person feel like a burden is abusive, but it is very hard to detect. There is no provision requiring doctors to inquire about those internal pressures. We have heard a lot about them: feeling a burden, financial pressure and lack of adequate NHS resources. Those are pressures that can lead to an inability to conceive of solutions that may exist or to access them. If the Bill is to provide for them, it must state what motivations are acceptable for the state to help someone to end their own life.
I wish to echo the words of the noble Baroness, Lady Smith, because I asked the noble and learned Lord, Lord Falconer, what was meant by saying that a doctor must discuss with someone seeking assisted death the availability of palliative care. I understood him to say that if it is not available, it cannot be discussed and it is not a matter. But why? Why does somebody in that situation, for whom palliative care would provide an answer, not have access to palliative care simply because of where they are? I have to ask the Committee whether it is happy, or even content, that that is a standard which we should accept.
In debating his own Bill on this topic in 2014 and looking at the issue of burden, the noble and learned Lord, Lord Falconer, said that he opposed someone choosing assisted death for feeling like a burden. I therefore ask him today: does he oppose making explicit what he has agreed is implicit in this type of Bill? If not, will he accept these amendments?
Baroness Cass (CB)
My Lords, I agree with everyone who has said that we must ask the question: what is the motivation for that individual? I submit that, unless a doctor can ask that question, they are not able to discharge their duties in two ways. First, they cannot assess the capacity of the individual to make that decision unless they hear the decision articulated in the individual’s own words. Secondly, if the doctor is going to offer them all the options that may help to address their fears or the issues, they cannot do that unless they know what the motivation is.
In this House and in broader society, there will be a spectrum of what anyone feels is acceptable in an assisted death. For some people, there is the absolute clarity that an assisted death is never acceptable under any circumstances. For those of us who feel that an assisted death is acceptable, we will have different cut-offs: for some it will be because they do not want their children to be financially disadvantaged by their illness; for others it will be that intolerable suffering is the only acceptable rationale.
I would guess that, across most of society, the main line that they have been given for this is that it should be related to suffering. On that spectrum—we could all line ourselves up along it—is there any practical way of determining where that cut-off should be? If we go back to the long discussions we had about coercion on the first day in Committee, it became clear, as it has during the course of this debate, that it is impossible to determine coercion driven internally—namely, the feeling of being a burden—from coercion driven externally in subtle or less subtle ways. It is very hard to determine that if you live with the family and know them well, let alone if you have one or two contacts.
It is easier to make an objective assessment of whether what the patient describes to you as their personal distress makes sense in the context of the illness that they are discussing. That may be being incontinent, losing independence or unmanageable pain. If we are asking the doctors involved in this to assess for coercion, we are giving them an impossible task. If we are asking them to determine whether the person has a source of distress that will only get better and cannot get worse because of the terminal illness, that is a much more tangible form of assessment. Therefore, I suggest that that suffering related to the illness itself, however the sufferer describes it, is the only way to distinguish objectively those who are being coerced from those who have an internally driven reason for seeking an assisted death.
Baroness Finlay of Llandaff (CB)
My Lords, I am grateful to my noble friend Lady Cass for having clarified that so well. I welcome my noble friend Lady Campbell back to the Chamber and thank her for her contribution, with all her in-depth experience, which complements and builds on that of my noble friend Lady Grey-Thompson.
This debate has gone right to the heart of an area that is not clear in the Bill, which is whether this is or is not a medical treatment in terms of providing an assisted death. There seems to be lack of a clarity on that. When the Bill was in the other place, the Bill Committee, in an exchange, highlighted the ongoing confusion around the point and the profound consequences of it. One member of the Committee asked the sponsor whether doctors would have to suggest assisted dying to every potentially eligible patient as they are required to do with all medical treatments—you must inform the patient of everything that is an option for them. The sponsor replied positively that doctors are required to set out all the available options. The sponsor was then asked again by a different member of the committee about doctors having a duty to raise it with every patient, to which she replied they did not and that it should be down to professional judgment. There is a fundamental conflict there for the routine doctor looking after a patient.
Earlier today, we heard about the concern over ableist attitudes. I have to say that one does see them. It is not uncommon to hear people say, “Oh, it must be awful to be like that” in relation to somebody who has a disability of some sort. Of course, nobody wants to be disabled. I have never come across a patient who has said, “I want to have spinal cord compression now”. Of course they do not. Nobody wants it, but in the event, you have to try to not get into a very negative view with the patient and make sure that you make options available that are likely to improve their quality of life, irrespective of whether they extend their life.
It would be important for the noble and learned Lord to confirm whether he considers assisted dying to be a form of medical treatment, and if it is, to say whether doctors have a duty to raise it with every potentially eligible patient. There has been concern that some patients might be hinting that they want to talk about having an assisted death, but they cannot quite verbalise it. As anyone who has taught communication skills knows, when you are in doubt, you answer a question with a question and you keep on exploring so that people will tell you what they really want to know and think about, and you use their own words, because people have different words for different things. That is quite common. The Bill needs to make it absolutely clear what it is because requiring an assessment will be quite different if it is being suggested by a doctor versus if it is, as we debated earlier on today, instigated by the person themselves.
The medical royal colleges and equivalent bodies are clear: they do not regard assisted dying as a medical treatment and would prefer it to be delivered outside medical settings. My professional group, the Association for Palliative Medicine, has expressed the view that assisted dying services should be implemented outside usual medical practice. The BMA does not believe that assisted dying should be integrated into existing care pathways. Fraser Rickatson from Care England pointed out that in its survey,
“some expressed very clearly that this goes against their ethos as a care service”.
Michael Mulholland from the Royal College of General Practitioners told our Select Committee:
“The whole question of making decisions for assisted dying is against everything that I have been trained in and I have practised for 30-plus years. The outcome at the end of life has been that we will support and care for you and provide palliative care, as best we can in the circumstances”.
He went on to say:
“As a college, we would hope that this goes on to the face of the Bill that we would have a separate service”.
We have had discussions about people’s internal feelings, possible external pressures and coercion that may be felt by a person, the difficulties of assessing those and all the grey areas that my noble friend Lady Cass has referred to in this spectrum that we deal with every day in clinical practice. There are fundamental issues that this debate has raised that need to be clarified as a way of going forward.
Lord Sandhurst (Con)
My Lords, I will be very brief. We have heard the most powerful support for these amendments from the distinguished most severely disabled Members of this House—people who really know what their conditions mean and who all support these amendments. We know also that all the major organisations representing disabled people have spoken against, or cannot support, the Bill.
How can we ignore that without being patronising and paternalistic? What possible good reason is there for us or the noble and learned Lord to know better? What possible good reason can there be, therefore, for us not to accept these amendments and say that, subject to any minor drafting details, they are accepted in principle now?
Baroness Coffey (Con)
My Lords, I tabled Amendments 56 and 57. Amendment 57 is to do with
“acting for the primary purpose of avoiding physical pain”,
while Amendment 56 is about someone
“acting for their own sake rather than for the benefit of others”.
The two amendments are distinct, although they are linked somewhat because, to some extent, the issue of physical pain—or avoiding it—is a clear-cut way of limiting the scope. I accept that my noble friend Lord Markham does not think that the scope should be limited in this way; indeed, many others may well think the same. I also bear in mind what the noble Baroness, Lady Royall, said about the fact that people are dying anyway. However, this is about a new way of accelerating death rather than the situation that we have at the moment, including, for example, “Do not resuscitate”; as I say, I am relieved that we no longer have the Liverpool care pathway.
Without revisiting the entire palliative care debate, one thing I was struck by in the words of noble Lord, Lord Stevens of Birmingham, is that element of choice—that is, whether this is a real choice and can be considered objectively, in terms of the primary purpose being avoidance of pain. If palliative care were widely available—I know that there are people who feel that palliative care may still not be enough—Amendment 57 would still allow for that.
Where the second element comes in—I appreciate that noble Lords may feel, “We’re back here again talking about coercion”—is in relation to motivation. I was struck somewhat by what the noble Baroness, Lady Whitaker, said, which was almost, “I don’t want to be a burden—my children know this—so let’s just get on with it”. However, this issue keeps coming back, I am afraid.
I thank the noble Lords who signed my amendments; one of them, the noble and right reverend Lord, Lord Harries of Pentregarth, has left because we have gone past 3 pm. I was motivated to table them by the debate in the name of the noble and learned Lord, Lord Falconer of Thoroton, in this Chamber on 7 November 2014, with the same Peer, going back to this understanding of what “voluntary” is. Back then, the noble and learned Lord referred to the aspect of people not wanting to be a burden. I intend to quote him, if that is okay; I appreciate that he may not have the Hansard to hand. Another Peer asked the noble and learned Lord, “How do you know?” The key thing is that, although that Bill was admittedly about a judge-led process, it was also about conducting
“in-depth discussions with the patient and the other doctors”
where the voluntary bit had to be voluntary, with
“he or she … not being forced into it either by coercion or by the sort of guilt that we referred to earlier”.—[Official Report, 7/11/14; cols. 1955-56.]
The “earlier” was that feeling of being a burden. So, my question for the noble and learned Lord, I guess, is: has something changed? Is it just that society has moved on and that autonomy is now more important than our concerns, which are still there, around why people want to accelerate the end of their life even though they know that it may come quite soon?
I am still concerned with making this issue clearer. Most of the stories that have led to the debates and Bills that we have had have been about pain and suffering; that is why, to be candid, I prefer Amendment 57, to avoid the issue highlighted in Amendment 56.
Lord Kamall (Con)
My Lords, this has been another rather long but interesting debate. It is important that noble Lords who wanted to speak had their voices heard. It touches on something we touched on very early. Noble Lords will remember when we debated another version of motivation and talked about coercion. A number of noble Lords put forward amendments to talk about encouragement. In that debate, we saw how difficult it was to distinguish between encouragement and coercion, to say whether encouragement is a form of coercion, and to legally define something such as encouragement.
Now we have the very same issue with motivation. In some ways, as the noble Baroness, Lady Cass, said, motivation is the internal version: it is self-encouragement or self-coercion, not wanting to feel a burden. We have debated what it means to feel like a burden. It is important that we understand the motivation. As the noble Baroness said, professionally, doctors need to do that to understand what help or assistance that patient could be given. It could be, if this Bill passes, that they are allowed or helped to progress to assisted dying, but it could be that they are offered something else that they feel very comfortable with that gives them a bit longer to live and to have that quality time that the noble Baroness, Lady Fox, talked about having with her family. When I was a Health Minister, one of the things that I learned about palliative care from the noble Baroness, Lady Finlay, when I first spoke to her was that people who live longer, even though they may have wanted their life to end “now”, appreciated that extra time with their family, once they entered palliative care, to close those unclosed things, to make up with friends and family they may have fallen out with, and to bring closure to their life before they went. It is important that we recognise that. I do not want to go back into the whole debate about palliative care, but it is important that it is seen as an option to give that closure to people, even if they do not want it and they decide, “I’ve made my mind up”. That is probably a more informed choice.
We need to be very careful about trying to define exactly what the one word that sums up the debate is. If it is about choice and only choice, pretty soon after the Bill reaches the statute book, people will say, “I only have 12 months to live. Why can’t I have the same choice as people who have six months?” Surely it is about not just choice or suffering but a combination of factors. That makes it incredibly difficult for the lawyers, but also for the medical people, to determine. We need to unpick some of that.
Noble Lords who have spoken on this group have picked up a number of issues: people feeling like a burden, mental health disorders, disabilities, and remembering that not all disabilities are visible. On that point, I welcome back the noble Baroness, Lady Campbell of Surbiton—I should know her title because she lives down the road from me; next time she sees me on the high street, she will probably prod me on that. There are also financial considerations, self-motivation and avoiding physical pain. The Bill does not require a specific motive as part of the eligibility criteria. Obviously, the whole Bill is about eligibility—the first few words are about who is eligible to seek assisted death services or terminally ill adult services—but it would be helpful if the noble and learned Lord, Lord Falconer of Thoroton, could expand on the thought process behind his very tight definition of “eligibility”.
I must say to noble Lords who have teased the noble and learned Lord a little bit about things that he may have said in the past that we are all entitled to change our mind when we learn new facts or hear a different view. I do not see it as a weakness in an argument if someone changes their mind when they have heard new facts. I find myself defending the noble and learned Lord, but I do not think we should be too harsh. I should remind people that I am personally very torn on this Bill, and I have not made up my mind. I am waiting to see the outcome of this debate before I make up my own mind about how I vote on this.
We also heard about dignity. I teach at a Catholic university, and dignity is a very important concept in Catholic social teaching. But what is dignity? It can be subjective. One person could be told that they have to wear incontinence pads for the rest of their life, and someone else could be told, “I’m sorry, you can’t walk for the rest of your life”, but other people have quite a full life even if they face those challenges or find themselves disabled. It is really difficult to define dignity; in many ways, it is subjective.
I have read many of the papal encyclicals about all this. By the way, I am a Muslim teaching at a Catholic University; in many ways I am the diversity, if you like. It is important that we consider what we really mean by dignity. We all think we know what it means, but we all have a different perspective on what it is.
A point that has come up many times in the debate is that we hear the words “pain” and “suffering”, but they are not in the Bill. We have to ask the noble and learned Lord, the sponsor of the Bill, about the thought process behind why he decided not to put “pain” and “suffering” in the Bill so that we can all understand, given that many noble Lords have asked that question about pain and suffering, why they are not explicitly there.
I ask the Minister this very carefully. A number of times during Committee, we have put questions to the Government but they have constrained themselves as to what they answer. It is important that the Government tell us what the implications would be if the Bill were to pass into law and what that would mean for resources in the department and for decisions that the Department of Health may have to make, as well as what it might mean for other departments of government. That is important. We cannot just say, “I’m going to confine myself to these few clauses”, because this will have implications. Some will say that it may have implications for wider society—a society that allows people to take their lives earlier or encourages death. It changes the sort of society we live in. Many people will welcome that and will say it is a society of choice, while others will say, “No, we don’t want to live in that sort of society”. We have to remember the implications of this Bill.
I ask the Minister to set out the Government’s considered view. I know that the Minister will say that some of these amendments as drafted are not legally sound—we understand all that—but these are probing amendments. This is a Committee stage and the amendments are not meant to be completely technically sound. We need to know, if they were to pass and were to be tidied up by the government lawyers or the officials, what that would mean for the workability of the wider health and care system and not just in respect of these issues that we are debating or the individual clauses in the Bill. We need to have a clear view of how this will change things and of the challenges that any Government will face when a new Bill comes in. That would be helpful.
I will stop there. I have asked a few questions to the noble and learned Lord, Lord Falconer of Thoroton, about the motivations for some of the decisions that he made in drafting the Bill, but also to the Minister speaking on behalf of the Government to answer the very real implications for resources, et cetera, not only in the Department of Health and Social Care but more widely across government.
Baroness Merron (Lab)
My Lords, I, too, welcome back to the Chamber and to this House the noble Baroness, Lady Campbell. It is a pleasure to see her back with us and I thank her and other noble Lords for their contributions in this group of amendments.
I once again make it clear that I will keep any detailed comments limited to amendments on which the Government have major legal, technical or operational workability concerns. It is important to remind your Lordships’ House of that. I say to the noble Lord, Lord Kamall, that the Government are doing only what any Government would do, which is to be scrupulously neutral, as your Lordships would expect us to be, and to handle it in that way. If Parliament passes the Bill into law, of course we will ensure its safe and effective implementation, but until that point I am afraid that I will be sticking scrupulously to what the role of any Government would be. I am sure that the noble Lord understands.
Amendment 30, tabled by the noble Baroness, Lady Foster, was spoken to by the noble Lord, Lord Weir, and Amendment 30ZA, in the name of the noble Baroness, Lady Lawlor, seek to prevent a terminally ill person in England or Wales from being eligible for an assisted death if they are motivated by certain specified factors. These amendments would introduce uncertainty around definitions and concepts, such as what constitutes “adequate housing”. They would also create an internal inconsistency in the Bill, as they are not reflected in later provisions that set out the assessment process. Drafting difficulties and internal inconsistencies are likely to result in confusion on eligibility, and significant further consequential amendments and policy development would be needed to produce predictable legal effects.
The Government also have some further practical operational concerns, which I will note for the Committee’s consideration. The amendment’s exclusion of those
“substantially motivated by… a disability”,
while excluding terminal illness from “disability”, would be potentially complex to operationalise. It may also be that somebody has multiple motivations. It is unclear how these could be separated or who would be able to make a final judgement.
Lord Falconer of Thoroton (Lab)
I am grateful to noble Lords who have contributed to this debate. I will make four quick preliminary points.
First, I join everybody in welcoming back the noble Baroness, Lady Campbell of Surbiton. The noble Baroness, Lady Campbell of Surbiton, and I have been debating this for at least 20 years, or maybe longer. It is very good that she is still with us and doing it in the same way.
Secondly, I mean no disrespect to the noble Baroness, Lady Monckton of Dallington Forest, but I will not deal with the points that she made because in a sense—and I quite understand why—they have nothing to do with these particular amendments, which she acknowledged. However, I am more than happy to talk to her about the process issues and I would welcome a conversation with her.
Thirdly, the noble Baroness, Lady Finlay of Llandaff, asked whether it is a medical procedure and whether it is part of the range of treatments that have to be offered or discussed with the patient. In relation to whether it is a medical procedure, the noble Baroness will know that the Bill provides that the actual provision of assistance has to be given by a doctor. I do not know what the consequences are in relation to either the medical or the legal world, but that is the medical connection.
In relation to whether it has to be raised if it is a possible medical procedure, the answer is unequivocally not, because the Bill specifically provides in Clause 5(1) that:
“No registered medical practitioner is under any duty to raise the subject of the provision of assistance in accordance with this Act with a person”.
So the matter is put completely beyond doubt in the Bill.
I turn to the substance of the amendments, which fall into three categories. The first is the amendment ably moved by the noble Lord, Lord Weir, to the effect that certain motivations, if they exist, should ban or prohibit an assisted death. Secondly, an amendment says that the only circumstances in which you can have an assisted death are when you are acting for your own sake rather than for the benefit of others. The third category is where you are acting for the primary purpose of avoiding physical pain. All the amendments in this group are designed to try to limit it to certain permitted motivations only.
I want to adopt completely the speech of the noble Lord, Lord Markham, who described what the Bill is seeking to do: to give people who are diagnosed as having six months or less to live the choice about how their life ends in those six months. The choice they make may be motivated by a whole range of factors. The pain may be too much. They may not be able to bear the thought of being reliant on their children, not because they see themselves as a burden but because the whole change in the relationship is just unbearable. They may not want to go through that period while they await death and there is nothing else. They may find the whole sense that they are incurring expenditure for somebody else so awful for them that it makes them feel bad and they do not want to go through it.
I go through all those possibilities simply to indicate that the reasons why you may want an assisted death vary from person to person. From my own experience, it is very often what we would regard as pain and suffering that causes it, but what causes distress or unbearability to people is not always, and may not often be, the pain or the suffering; it is the whole circumstances in which they find themselves during that last six months.
There is an incredibly good article by somebody on what their mother, who had all the access to palliative care, said was awful about their circumstances. All the pain relief was there and everybody had come to say goodbye, but then weeks went by when there was nothing but staring at the wall in a period of not quite being able to engage with other people and wanting it to end. Would they qualify if, for example, pain and suffering was the requirement? No pain would be identified. The suffering would come from the unbearability of it.
The Bill is constructed on the basis that the person who has six months or less to live should have the choice. There are ideas to bring in these particular things. Do they feel they are a burden to somebody? Do financial considerations apply? They might well apply because there is only a limited amount of money to go around, so they might contribute. Is the panel or the doctor supposed to parse the precise part that every one of these motivations plays? In my view, that would be a very bad way of constructing the Bill. I am very happy to explain how I got there. I think it is a choice, and pain and suffering will often be the choice. If you are serious about putting the patient first, you have to give them the choice and not be in a position where you are trying to look into a whole range of multiple motivations.
Lord Harper (Con)
I am grateful to the noble and learned Lord for once again giving way. Can I just press him on this choice point? Although I do not agree with the Bill, there is an argument to be made for giving people a completely free choice, but does he accept that many people in society have many constraints on their ability to make choices? These amendments are trying to make sure they are making a free choice, not one that has been constrained by their other circumstances. Does the noble and learned Lord accept that it is a problem if someone has all these constraints on them and is not really making a free and unconstrained choice, which many people in this Committee would be able to make? Does he even accept that it is a problem that, although it may be difficult, potentially needs fixing?
Lord Falconer of Thoroton (Lab)
It is very difficult and would be inappropriate to try to examine exactly why people make particular choices. Look at the first Amendment 30 proposal:
“not wanting to be a burden on others or on public services”.
Why does the thought that they are going to be a burden on their children become an unbearable thing for some people to go through? They might make that choice because of what has gone on in their lives, but it is totally inappropriate, impossible and wrong in a Bill such as this to say that we have to ask why they are in that position.
The next proposal refers to a mental disorder—
Baroness Fox of Buckley (Non-Afl)
If the doctor was required to ask what someone’s motivation was, and the patient said, “I just really don’t want to be a burden on my family; it’s too intolerable”, but they have been told they are terminally ill relatively recently, is it not possible that there could be an intervention that would say, “Maybe you won’t be a burden” and to go and talk to their family? One of the problems is that it is assumed the endpoint is there already, whereas if you ask the question, there is a possibility that you could offer an alternative. If somebody says, “I can’t face the pain”, you can tell them there is pain relief available. This is not trying to undermine the Bill totally, but it is possible that if the doctor responds with some options, the patient would be on their way. Why not ask for the motivation? That would surely be positive.
Lord Falconer of Thoroton (Lab)
That is a very important question. There is a difference between excluding certain motivations, which is what Amendment 30 would do, and asking why, which the noble Baroness, Lady Smith of Newnham, raised. I see force in the proposition that somewhere in the Bill, somebody has to ask why—for two reasons. First, as was raised previously, if you ask why, it might throw some light on circumstances that suggest classic coercion. Secondly, and separately, it might deal with exactly what the noble Baroness, Lady Fox, is referring to.
Take an utterly absurd example: someone says, “I want an assisted death because I cannot deal with the noise that’s going on in my head”. The doctor could then reply, “Well, actually, that’s a building site that will stop tomorrow”. If it is something like that, one should know.
I am attracted by the idea of something in the Bill that says why. That has to be asked somewhere down the line. This also connects with our previous discussions about the multidisciplinary team engaged in looking after the person, which might well have a much better view about why.
Lord Deben (Con)
Can I encourage the noble and learned Lord in what he has just said? I was going to intervene earlier, but decided I would wait for this moment. I am afraid the noble Baroness, Lady Whitaker, almost drove me to get up; she can say that she does not want to be a burden because she will not be one and I am quite sure her family would not let her be one. The truth of the matter is that we are concerned about making sure that people are given every opportunity to put themselves in the best position in the last six months of their lives. If the noble and learned Lord can find a way of having these questions asked without the disadvantage—I understand the point he makes—it would give us a great deal of support. I would like him to do that.
Lord Falconer of Thoroton (Lab)
I hope I have been clear about not liking the amendments as they are and that I am keen to see whether what the noble Baronesses, Lady Smith of Newnham and Lady Fox, said can be incorporated somewhere in the Bill. It may well connect with things we have said already. I hope I have made my position clear.
Baroness Grey-Thompson (CB)
My Lords, I feel a sense of disquiet listening to the noble and learned Lord’s response, especially when he talked about privilege. I have a huge amount of privilege in my life. If I need a new wheelchair, I can buy one. I can put a lift in my house. I can buy a car and pay for the hand controls. When I need a van with a tail lift, I can pay for that. Is he really saying that lack of privilege plays no part in somebody choosing to end their life?
Lord Falconer of Thoroton (Lab)
I am saying that everybody should have the choice. The way that one makes the choice is inevitably determined by how one got to the point where one had to make it. It is an impossible question. Why do we all make choices? They are all affected. Some people make them because they are richer or poorer than others, but I am not in favour of drawing financial distinctions. I hope that, in the light of my remarks, the noble Baroness— I cannot remember who started this—will withdraw her amendment.
Baroness Fox of Buckley (Non-Afl)
I blame myself for this, but the noble and learned Lord was about to say something about the mental health issue when I made a point, and we have not gone back to it. That is a very distinct question, so will he reflect on it?
Lord Falconer of Thoroton (Lab)
This is not a technical point, but the way the amendment is drafted is very confusing. If your mental illness makes you come to this conclusion, that may well go to capacity. I am not clear what is being got at in relation to the mental health issue. However, if the position is that you may have a mental health condition but are perfectly capable of making a decision, you should be allowed to make it.
Baroness Lawlor (Con)
My Lords, I thank all noble Lords who have contributed to this group. I am very grateful for the attention focused on the problems that people face in their lives, particularly those who have exceptional difficulties in exercising freedoms that we, as has been pointed out, all take for granted.
This suite of amendments sought to try to restrict the possibility of others pressurising people, particularly people in this very difficult position, to take a decision to seek assisted suicide under the Bill which they might not otherwise have taken had they had the support and had they not had the disabilities which have been mentioned in these amendments. They also seek to restrict the Bill to those who wanted to relieve pain only.
I am afraid I have been a bit disappointed, if I may say, with the noble and learned Lord the sponsor. In stressing autonomy and choice by one person, he is, I fear—perhaps inadvertently—neglecting the autonomy and choice of those who may want to live with their disability, with whatever ailment they have been born with or developed over their life but are facing terminal illness. We are concentrating on the autonomy of the person, but we are not giving enough attention in the Bill, I fear, to those who feel pressure, who feel they are a burden and who wish to avoid causing distress to those they love.
In doing so, we are doing a great disservice to the men and women of this country who do not want to be a burden to those they love. That burden is increased by virtue of the cost of living and the difficulties they have in making choices. We are putting the choice of those who want it and who have firm, clear intent, over those who may not wish to do it but feel pressured for the reasons of their life and their circumstances into doing so. I shall withdraw my amendment for now, but I hope to bring it back, if the noble Baroness, Lady Foster, wishes to bring hers back, and support the other amendments in this group.
Lord Frost
Member’s explanatory statement
This is part of a long series of identical or near-identical amendments which Lord Frost would seek to table at Report Stage should this amendment find favour. The intention is to provide clarity on the nature of the services provided by this Bill and to avoid euphemism. This is the first occasion in the Bill text at which the phrase “assistance to end their own life” occurs.
Lord Frost (Non-Afl)
My Lords, I have four amendments which constitute the entirety of this group: Amendments 34, 121, 138 and 153. I am very grateful to the noble Baronesses, Lady Fox of Buckley and Lady Lawlor, and the noble Lord, Lord Harper, for putting their name to these amendments.
I will begin by making a purely process point. Were the underlying change I propose to find favour, as the explanatory statement on the Marshalled List makes clear, a large number of textual amendments would in fact be needed to ensure internal coherence within the Bill. For the convenience of the House, I have not tabled all those amendments now. In this sense, my amendments are exploratory and probing. The four specific amendments I have chosen, which are on the Marshalled List, have been chosen because they represent the first occasion on which a particular type of change would be required.
To summarise, Amendment 34 represents the first occasion in the Bill in which the phrase
“assistance to end their own life”
occurs; Amendment 121 is similarly the first occasion in which the phrase “voluntary assisted dying commissioner” occurs; Amendment 138 is the first occasion in which the phrase “assisted dying review panel” occurs; and Amendment 153 is the first occasion in which the simple word “assistance” occurs: a word that is not in fact defined in isolation but is taken to be short for the phrase “provision of assistance to a person to end their own life”.
Let me now turn to the substance of these amendments. I put them forward for two major underlying reasons. First, it is bad for us as legislators to attempt to legislate in such ambiguous language. Secondly, such language substantively carries real risks for at least some of those who may wish to avail themselves of the provisions of this Bill or have it put to them that they should.
All these amendments have one thing in common. They would replace phrases including the word “assisted” or “assistance” with something much clearer—an explicit reference to what is actually provided for in the Bill, the provision of
“medical help to commit suicide by provision of lethal drugs”.
I was aware when I tabled these amendments—some noble Lords have subsequently mentioned this to me—that the phrase “commit suicide” raises particular wider issues. I understand that and I will come back to it, but let me first proceed with the text as tabled.
First, it is a well-understood principle in drafting legislation—the noble Lord, Lord Deben, made this point earlier today—that it should be unambiguously clear. In this Bill, we have a phrase which covers a wide range of possible meanings. The core phrase,
“assistance to end their own life”,
could be read in a wide variety of ways. It could be read as meaning making somebody comfortable in their last hours. It could be read as withdrawing food and drink in a medical setting. It could even be read as an actual act of killing by another party at the request of the individual concerned. It could be read as many other things too, including of course the thing that is actually provided for by this Bill.
The polling about this Bill and the discussion around it shows there are many misunderstandings about what it does and what it allows. Surveys and experimental research show that public responses to questions about legality and support are very sensitive to the wording chosen. That is why it is important to be clear. My amendment would do that by providing clear language. It is possibly language that would be regarded by some as forceful, but nevertheless it is clear.
Lord Falconer of Thoroton (Lab)
I apologise for intervening, but this is quite important to the debate. Is the noble Lord saying that his amendments—I take it they are simply exemplar ones—would change the meaning of the Bill, or are they just for the purposes of, as it were, better public understanding?
Lord Frost (Non-Afl)
Yes, they are intended to clarify what the Bill actually provides for. I will explain further. The provision of medical help to commit suicide by the provision of lethal drugs is what the Bill does. That is what it does and that is what it should say that it does. I would say in passing that it is particularly important, since the Bill leaves so much to delegated powers, that we should be unambiguous about the particular power that is provided for.
Secondly, this House and this Parliament should always be clear to ourselves what we are doing when we are legislating. We should try and avoid euphemism. Where we deal with difficult topics, I think it is good to avoid distancing ourselves from uncomfortable realities in legislation by using abstractions. I refer to the 2024 guidance to parliamentary draftsmen which says:
“Write in modern, standard English using vocabulary which reflects ordinary general usage”.
It goes on to say you should
“use precise and concrete words rather than vague and abstract words”.
It is noticeable the most common term in this Bill for the activity for which it provides is the single word “assistance”. The common meaning of that word, I think it is fair to say, does not include providing for the death of an individual. In this Bill, that word has become a euphemistic term of art. Indeed, it is easy to imagine it becoming a jargon word in which a practitioner says to a patient, “Have you thought of asking for assistance?”, as a comfortable way to suggest to vulnerable people that taking their own life might not be something to be too concerned about, or even in the worst case, almost hide from them in the initial discussion what is actually being discussed.
We can see the distancing function of this word, the Latinate “assistance”, if we replace it, as my amendment would, with the Anglo-Saxon “help”. If the Bill used “help”, the jarring nature of the contrast between that word and the action that is provided for by the Bill would, I think, be too great to bear. I will not go into detail for reasons of time, but exactly the same concern arises from the Bill’s use of the phrase, “approved substance” when what is meant is a lethal drug.
Lord Winston (Lab)
Forgive me for interrupting; I do not want to take up time. The noble Lord is now giving us a lesson in Anglo-Saxon, Celtic, Latin and indeed Old German, as well as Middle English. We are missing the point. We need to move on, surely. He has been over 12 minutes on this speech, and it is beyond what we would accept at this stage of the day.
Lord Frost (Non-Afl)
I think I am allowed 15 minutes, actually. I do not think I mentioned Celtic either, just on a point of detail.
That aside, I was reaching—in fact, had already delivered—my peroration. I hope, as I said, the proponents might be open to some reflection on this point. Meanwhile, I beg to move.
Viscount Stansgate (Lab)
I point out to the Committee that if Amendment 34 were to be accepted, it would pre-empt Amendment 35, which leads the next group.
The noble Lord, Lord Shinkwin, is taking part remotely, and I now invite the noble Lord to address us.
Lord Shinkwin (Con) [V]
My Lords, I begin by quickly welcoming back the noble Baroness, Lady Campbell of Surbiton, and thank her for reminding us so eloquently why we have missed her contributions.
I rise to speak to Amendment 34, and I thank my noble friend Lord Frost for tabling it and for his excellent speech. I also thank the noble and learned Lord, Lord Falconer of Thoroton, for his past commitment to ensuring the law is communicated as clearly as possible by removing the Latin names of the prerogative writs through the Civil Procedure (Modification of Supreme Court Act 1981) Order 2004. Can he explain in his closing remarks why, 22 years later, he appears to have changed his mind on the guiding principle, which I assume informed his earlier decision, that the law should be accessible and unambiguous? Perhaps, and maybe he could clarify this in his closing remarks, he now believes it should be accessible only to some, and that for others it is fine for it to be clouded—or shrouded might be more appropriate, given the fatal consequences of an ill-informed decision on assisted death—in euphemism, nuance and even deceit.
After all, those with a learning disability or Down’s syndrome, for example, are only disabled people, are they not? What does it matter if their disability means they cannot quite grasp the enormity, finality and irreversibility of the decision to seek, as my noble friend’s amendment states,
“help to commit suicide by provision of lethal drugs”?
We know that language matters, but do we know how much it matters to those whose disabilities make them understand less or make comprehension challenging, and, in the case of Down’s syndrome, those whose innate desire to please makes them more prone to agreeing with the question, especially when its implications are not fully grasped?
I hope the noble and learned Lord will accept this amendment and thereby protect not only those whose disabilities make full comprehension difficult but the reputation of your Lordships’ House. Let it never be thought that we do not care if those whose disability-related need for the clarity provided in my noble friend’s amendment are somehow misled to death because of nuance. I hope the noble and learned Lord will show, by accepting this amendment, that those whose disabilities make them particularly vulnerable to ambiguity must not be treated as unfortunate collateral damage.
Baroness Fox of Buckley (Non-Afl)
My Lords, I signed the amendments from the noble Lord, Lord Frost, which seek to probe the ways that we can make this Bill more transparent to the public. That is my main driver—I believe in plain speaking. The public deserve to know what this Bill involves.
As it happens, I think the noble Lord’s wording would add clarity. His proposal is to replace
“assistance to end their own life”
with
“medical help to commit suicide by provision of lethal drugs”.
That wording is factually accurate, even if it makes you gulp. The reason it makes one gulp is because it is factually accurate, and we do not often recognise what is being advocated here. There is a danger that the Bill’s terminology creates ambiguity rather than clarity, and it is important that we are frank and open.
Why use the word “suicide”? As has already been explained, the Bill needs to amend the Suicide Act precisely to carve out the legal space to allow this type of assisted suicide, as mentioned in the Bill, to be within the law. That is accurate. But I am wary of having a culture war over the word “suicide”—I use the term “assisted dying” all the time, so I do not want to be called out for hypocrisy here—because I am aware of the fact that suicide as an issue is far too serious and tragic to be glib about or to have verbal ping-pong over.
On the other hand, I am worried that avoiding the word “suicide” in this debate, and making it verboten, might desensitise public debate. Let us be honest, language choice can influence opinion. “Assisted dying” sounds softer, palatable and more sympathetic. It is interesting that evidence shows that support for assisted dying changes if you call it “assisted suicide”; it drops significantly when the terms are plainly defined.
Some may flinch at the proposed words used by the noble Lord, Lord Frost—
“medical help to commit suicide by … lethal drugs”.
As I have said, it is hard to accept that. It makes you think. Is there going to be a complete change in the way medicine is operated, so that medics could hand you poison and lethal drugs? The answer is yes. When people hear that phrase, it might hit them what a fundamental shift this will be for medical professionals and so on. That is exactly why a number of us are not prepared to nod this Bill through. It is perfectly reasonable to completely disagree with what I have just said, but I want everyone to know what the Bill is about and why it is a very big change in our society, causing all sorts of ethical discussions. The public deserve to know that, and therefore we should be as clear as possible.
I recall that, on the first day in Committee—and subsequently, but particularly on the first day—there was a lot of tut-tutting and reprimands, with a lot of people being shouted at when Peers used the term “assisted suicide”. A lot of people stood up, saying, “You can’t say that. You’re just being emotional, manipulative and so on”. But clear language promotes public and patient understanding. In a way, I advocate a patient-centric approach rather than a euphemistic approach, which could, arguably, be seen as an act of misinformation in some instances.
Captain of the Honourable Corps of Gentlemen-at-Arms and Chief Whip (Lord Kennedy of Southwark) (Lab Co-op)
My Lords, to help the Committee, I will interject to say that it has just gone 5 pm. Basically, we have two options. Both involve us finishing at 5.30 pm. We can either carry on this debate, which is absolutely fine. We have recorded the number of Lords who are present, so I can move to adjourn the House at a convenient point around 5.30 pm. Alternatively, if the debate is coming to an end, we can hear the Front-Bench speeches and then adjourn at 5.30 pm. I do not mind what we do, but we are going to adjourn at 5.30 pm. It is in the hands of the Committee.
Baroness Lawlor (Con)
My Lords, I have added my name to these amendments from the noble Lord, Lord Frost. I agree with what has been said. I agree with the need to avoid euphemism. The noble Lord, Lord Frost, raised the point, and the noble Baroness, Lady Fox of Buckley, came back to it, that some will object to the phrase “commit suicide”, but I will make a stronger case on that point.
With regard to many cases of suicide, these reservations would be justified. “Commit” implies clear intention by the person concerned to take his own or her own life, but, as we have heard throughout this debate on the Bill so far, suicide can be the result not so much of firm, clear intent, but of the perpetrator sliding inexorably into hopelessness about the circumstances of their life or being confronted by a lack of help. If the inability to cope with such misfortune leads to depression and then suicide, I agree that it is misleading to talk of committing suicide, but the cases envisioned in this Bill are quite different. As the Bill makes clear, the person must have a clear, settled and informed wish to commit suicide. Here, then, “commit suicide” is indeed the appropriate phrase.
Moreover, the phrasing in the Bill, in terms of assistance to end one’s own life, carries, as has been said, a risk of confusion between what the Bill proposes—the deliberate action to bring life to an end—and the normal practice of doctors, as the noble Baroness, Lady Finlay, mentioned earlier, which is to ease suffering and sometimes to use palliative measures that might, although this is not their aim, shorten life. The advocates of the Bill have often spoken in a way that blurs this distinction. It is important that the phrasing of the Bill guards against such confusion.
Baroness Royall of Blaisdon (Lab)
My Lords, I recognise that the noble Baroness, Lady Fox, will have heard this before, as will have many others, but the fact of the matter is that the Bill talks about assisted dying. “Dying” tells you what it is all about, so I do not think that we need to have the word “suicide”. I say this because I have spoken with the families and loved ones of people who wish to have an assisted death; those who wished that their loved ones had had an assisted death, because they could see the suffering endured by the person who died and the people who were caring for them; and those who are left behind. I have had many conversations and those people all feel strongly that those who want to have an assisted death are not committing suicide; they want to regain some control and want to live for the last few months of their life with some comfort. Just because they ask for an assisted death does not mean that they are actually going to fulfil that, but it gives them and their families comfort. So, please, can we not talk about suicide? We are talking about dying and that is absolutely fine. I do not wish for the people who are already suffering or the people who are caring for them to have more distress in their lives.
Lord Moore of Etchingham (Non-Afl)
My Lords, I find it strange that the noble Baroness, Lady Royall, should be making the argument that the word “dying” tells us all that we need to know. If that were so, we would not need the Bill. The Bill is about a very specific thing, which is choosing to end your own life and getting help with it. The importance of clarity and frankness in language in the making of law is very great. It must be distinguished from perfectly legitimate what I shall call political language.
Take, for example, the right to life, which is one side of the argument in another matter, and the right to choice. Those are both perfectly good phrases about the subject of abortion, but they were not suitable phrases for law. When you talk about law, the word that should be used is “abortion”. That is what is actually happening. I am not saying that there is any dishonesty here, but it is inappropriate for the making of law.
I strongly support what the noble Lord, Lord Frost, said about possible ambiguities and misunderstandings. I give an example, which is nothing whatever to do with assisted dying, but it just illustrates the point. As we ran up to the 1983 general election, Labour had a policy of unilateral disarmament. The Tories were against unilateral nuclear disarmament and attacked it. Somebody wrote a letter to the Daily Telegraph saying, “I do not think people know what the word ‘unilateral’ means, and if you call it ‘one-sided disarmament’, people will understand what this is about”. The Tories seized that, suddenly changed all their propaganda to talk about one-sided disarmament and the polls shifted very dramatically against one-sided disarmament. The importance of normal English is very significant. Again and again, we can see public confusion, which must be avoided, about what is actually proposed in the Bill.
Finally, there is a contradiction in the arguments made by supporters of the Bill—I think that the noble Baroness, Lady Royall, was in this situation. Since the greatest thing that is being argued for by supporters of the Bill is autonomy, it is important to have a word or phrase that embodies that autonomy and shows who is making this decision and whose agency it is. The phrase “committing suicide” exactly establishes the agency and exactly shows the autonomy. It is contradictory to advocate for autonomy and then to take refuge in euphemism.
Lord Winston (Lab)
Many years ago, the noble and learned Lord, Lord Falconer of Thoroton, introduced a similar Bill. I, very misguidedly, introduced an amendment to the title of the Bill; I suggested that the word “euthanasia” should be in the Bill. I did this without believing either that the Bill should pass or that it should fail—I was genuinely uncertain—but, earlier that week, I had talked to a 16 year-old schoolgirl in a school. In the short conversation we had, she asked, “Do you think we always feel that we have to go for and strive for perfection?” I found that very difficult to answer, so I pondered on it.
One of the issues here is exactly what the noble Lord, Lord Frost, has just shown. He tried to demonstrate that there are no absolute meanings of words. In that case, I used Greek, but this is something that we need to go beyond now. These words will mean different things to different people. We waste a lot of time doing this sort of meddling with language when it is unnecessary and when there is no issue with the legal quality of the Bill, which, of course, must be paramount. It is clear that the language we have at the moment is undoubtedly intelligible and largely workable.
Lord Harper (Con)
My Lords, let my start by picking up the point that was just made by the noble Lord, Lord Winston. We should be plain and simple in saying what is going on. In effect, the Bill’s central purposes are to amend the Suicide Act and to legalise somebody’s ability to assist someone else in killing themselves. We should be frank about that; that is what we are doing. If people find us being clear and speaking plainly about what we are doing either uncomfortable or distressing, that should make us pause and ask ourselves whether what we are doing is the right thing. We should not change the language to make the thing that we are doing more palatable. We should speak plainly about it then judge accordingly.
There are some real consequences. One of them was set out by my noble friend Lord Shinkwin when he referred to people with learning disabilities. The noble and learned Lord, Lord Falconer, will correct me if I have got this wrong, but I think that, when he gave evidence to the committee, he was clear that he wanted someone with a learning disability to have the same ability to access assisted suicide as anybody else, assuming that they meet the other eligibility criteria. My noble friend Lord Shinkwin put it very well when he said that people with learning disabilities need to have things explained in clear and straightforward language. That is really important.
In an earlier debate, my noble friend Lord Markham talked about relying on the experts, but we cannot do that because we know that they do not always make the right decision. We know that, during the Covid pandemic, many people with learning disabilities were given “Do not resuscitate” notices because some people had made the decision that their lives were not as worthwhile as others. People made decisions about them that they would not have made about somebody who did not have a learning disability. It is important that we make sure that the language we use about this decision, which could not be more important, is understandable and that the consequences are understandable for everybody who will be impacted by such a decision. My noble friend Lord Shinkwin made that point well.
My noble friend Lord Frost has already made the point about the use of the phrase “committing suicide”; I reflected on it before I signed his amendment. Personally, I do not like using that phrase—the “commit” piece, not the “suicide” piece—so I paused before I signed his amendment. However, I thought that having a debate and pressing on clarity was important. Obviously, we are in Committee. If my noble friend were to bring forward these amendments on Report, I would want to work with him on the language. I think that removing “commit” would be better because, as my noble friend correctly said, the Suicide Act has removed that vocabulary.
But using the word “suicide” is accurate. Just because somebody has a terminal illness, that does not mean that in taking their own life they are not committing suicide. It is important because it gets through to people the consequence of what we are doing here and the fundamental reshaping we are doing to the way in which society looks at this. That is why so many of us are concerned about it.
Baroness Butler-Sloss (CB)
Might I respectfully suggest to the Committee that we now hear from the Front-Bench spokesman so that we can finish this line of amendments by 5.30 pm?
Lord Goodman of Wycombe (Con)
It may be helpful for the Committee if I simply read, very briefly, for the assistance of considering this amendment, what the former Chief Coroner of England and Wales, Justice Teague, said about the background to the decriminalisation of suicide when giving evidence to the Select Committee. I think the Committee would want to consider it. He said that
“the reason the change was made was not a change in the public policy towards suicide; it was a change in the criminal law to decriminalise it, because the situation had developed where you could not effectively prosecute the person who successfully committed suicide. What the law was doing was prosecuting people who failed. It was manifestly improper and unjust that people should, in effect, be punished for failing to achieve suicide, but it was always made clear at the time of the debate in Parliament that it would remain an offence to assist a suicide, and that it would be the policy of the law that suicide was not something to be approved of”.
In that context, the Committee may wish to consider whether, given that the act being considered here is the assistance of a suicide, it should be plainly named as such, as the noble Lord, Lord Frost, proposes in his amendment.
Lord Gove (Con)
My Lords, I will take just a minute or two. Words matter. In America, in legislation similar to that which we are entertaining, it is known as “medically assisted suicide”. Similar terminology is used in Switzerland. Those are both jurisdictions that have informed this debate. Recently, in the British Medical Journal, a physician who works in Scotland made this compelling point:
“The phrase ‘assisted dying’ creates confusion and is poorly understood … just 43% of respondents”
in opinion polling
“thought ‘assisted dying’ involved the provision of lethal drugs to end somebody’s life”.
Fewer than half of the public understood what was meant by this legislation. He went on:
“The majority believed the term meant withdrawing life-prolonging treatment or providing hospice-type care”.
If so many of the public have the wrong view of this legislation, how can it possibly not be of assistance for us to use plain language on a matter of such moment?
Lord Kamall (Con)
My Lords, I have been very clear throughout this debate that any noble Lord who wants to speak and participate should be allowed to do so.
Lord Kennedy of Southwark (Lab Co-op)
As I said earlier, it is absolutely fine to break mid-group on these amendments.
Baroness Grey-Thompson (CB)
My Lords, thank you. If there is one place where language matters, it is in the Bill before us. As a young disabled person, I used to interchangeably use “person with a disability” and “disabled person” and did not understand the importance of that. In later amendments, I will argue that “disabled person” is much better phraseology to use.
Language is the dress of thought. We are all spending many hours working on this Bill, but, if the outside world does not understand what is meant by “assisted dying”, we could be in a situation where somebody with learning disabilities or who uses British Sign Language, who has not spent as much time as we have interrogating the Bill in every single session, might not understand what they are signing up to. Personally, I would prefer something around “died by suicide”—that is something else that can be finessed as we go through the Bill.
The BMJ published an article that showed how poorly understood the phrase “assisted dying” was. This highlights the problem that we are facing: the phrase is poorly understood and creates confusion. Just 43% of respondents thought that “assisted dying” involved
“the provision of lethal drugs to end somebody’s life. The majority believed the term meant withdrawing life-prolonging treatment or providing hospice-type care”.
That is something we must consider. The noble Lord, Lord Winston, talked about how the Bill should be largely workable. It should be workable, but it should also be safe. Part of that safety is about the public understanding what they might be signing up to.
In other groups, we have talked about doctors and medics, and I have many in my family. There is nothing more medic-like than using very long words and things that the public do not necessarily understand. Not everybody is an expert patient. We must be clear about what we mean in the Bill. We should stop hiding behind phrases that people may choose to use. To be clear, I have used the term “assisted dying”, because I try to be very thoughtful of the people who do not like “assisted suicide”. However, I have used “assisted suicide” today, and I will from now on, because that is what the Bill is going to do to the people who sign up to it.
Baroness Hayter of Kentish Town (Lab)
My Lords, I will speak, given that we are going to continue until 5.30 pm and the noble Baroness, Lady Fox, has mentioned me. The problem with removing the word “dying” is that it does not give to the public the absolutely key bit of information, which is that these people are dying anyway. We are talking only about people who are dying. That is what the Bill is about: people who have less than six months to live. They are dying. We may have a theological belief that we are all dying, and that each day we get nearer to that, but let us put that to one side.
The removal of the word “dying” would be the worst way to tell people what this Bill is about. The Bill is not about assisted suicide for someone who just decides that they want to commit suicide or have a suicide death—I do not like the word “commit”. It is not about people who suddenly say that they want to commit suicide because of this, that or the other. We are talking only about a cohort of people who are dying; remove that from the Bill and it is less likely to be understood.
Lord Hamilton of Epsom (Con)
Does the noble Baroness not share my concerns about the misdiagnosis of six months, when you think of all the people who live for much longer afterwards?
Baroness Hayter of Kentish Town (Lab)
While that is absolutely a legitimate thing to discuss, and I would always defer to doctors on that, it makes no difference to this part of the argument of whether we call it dying. The noble Lord may well want to raise the question of whether we can ever be sure that someone is dying, although I have to say that I cannot be the only one who has been with someone where it is jolly clear that they are not going to live till the end of the week. There are times when you absolutely know that someone is going to die. While he may well be right that there are other cases, that is not the issue of this word. This word in the Bill is to give to the public the understanding that we are talking about whether there is a way of helping either the final timing or the way of those final days. We are not talking about someone who just decides to commit suicide for some other reason; we are talking about people who are dying from some sort of terminal illness.
Lord Kamall (Con)
My Lords, I remind the Committee that I am one of those who are still balancing the arguments on the overall Bill, and where I get put off some arguments is when people heckle those who are trying to make a point. I do not think it helps their cause. On the other side of the argument—I am trying not to sound as if I spend my life sitting on the fence—those who speak much longer than they need to in making a point also make it difficult to support some of the points that are being made. On future Committee days, I would like to see a bit more mutual respect between the different sides of the debate, with shorter points made but also less heckling of those who want to make a point. It is important, if we are going to say that we are doing our job in scrutinising the Bill, that everyone who wants to make a valid point, relevant to the amendments, is allowed to make it.
I thank my noble friend Lord Frost for tabling the amendments in this group. I recall that at Second Reading my noble friend Lord Moylan spoke about the importance of language. Language is important, especially clarity of language, so I understand my noble friend’s intentions in tabling these amendments. One could argue that there is a distinction to be made between the terms “assisted dying” and “assisted suicide”. “Assisted dying” on its own, before you even consider the Bill, does not necessarily mean consent on the part of the person whose life is being ended. The Bill introduces that element of consent, but “assisted dying” on its own does not mean consent, whereas it could be argued that the term “assisted suicide” conveys some form of intent—that it is a person seeking to end their own life, they want to do so and are not being assisted to die, regardless of whether or not they want to die. That may seem to be a philosophical point, but it is important that there is a distinction between assisted dying and assisted suicide. As the Official Opposition, we have no collective view, but it is a legitimate challenge by my noble friend to the language of the Bill, seeking clarity or, as the noble Baroness, Lady Fox, said, transparency.
Noble Lords have argued that people in this country should be able to access the services that people can access from Dignitas in Switzerland. However, Dignitas is described as offering physician-assisted suicide. Looking at the Dignitas website—not because I have lost the will to live after trying to get through a day of debates, but to look at the language—I see that it uses the phrase:
“Legal assistance for suicide with DIGNITAS”.
So we have to ask ourselves: if we are trying to be consistent with Dignitas, why is it okay for Dignitas to use the language of “suicide” but, when people want that same service in this country, we cannot use that language?
Baroness Hayter of Kentish Town (Lab)
That is exactly because it will take people who are not dying. This is not what this Bill does.
Lord Kamall (Con)
That is a fair point to be made. It is why the question was asked, and I thank the noble Baroness for answering it.
I thank my noble friend Lord Frost for provoking this debate, because there are still other arguments for using the phrase “assisted suicide”, particularly in terms of clarity. I look forward to the consideration of the arguments made by my noble friend Lord Frost from the noble and learned Lord, Lord Falconer, and the Minister.
Baroness Merron (Lab)
My Lords, I will be very brief. The amendments tabled by the noble Lord, Lord Frost, do not present significant workability concerns. As noble Lords will be aware, the amendments have not had technical drafting support from officials. Therefore, further revision and corresponding amendments would be needed to provide consistent and coherent terminology throughout the Bill.
Lord Falconer of Thoroton (Lab)
The purpose of making the amendments advanced by the noble Lord, Lord Frost, is clarity. We have to look at this not as some pamphlet but as a piece of legislation. The key thing is that it conveys what it means. The relevant words in the Bill at the moment are:
“A terminally ill person in England or Wales … may, on request, be provided in England or Wales with assistance to end their own life in accordance with sections 8 to 30”.
In my view, that could not be clearer. It is saying that the Bill is about providing assistance to end their own life in accordance with Sections 8 to 30.
The noble Lord, Lord Frost, wishes to change the words
“assistance to end their own life”
to
“medical help to commit suicide by provision of lethal drugs”.
The language of the noble Lord, Lord Frost, is both more technical and much looser. Simply as a matter of legal drafting, the draft as it is at the moment is much clearer and accurately describes what would happen. It is not my drafting or that of the sponsor in the other place; it is the drafting of a professional draftsman and I strongly urge the Committee to stick with the non-emotional, accurate, clear drafting that is there already.
Lord Frost (Non-Afl)
My Lords, I thank all those who have supported and engaged with the substance of my amendments. I think we have had a good debate. I also thank the Minister for acknowledging that these amendments would not cause significant or major workability issues—I think her words were something like that—at least on a first viewing. That is important.
I am grateful to the noble and learned Lord, Lord Falconer of Thoroton, the sponsor of the Bill, but I think we will have to disagree on what language is clear and what is not. I continue to believe that the form of words in my amendments is much clearer and sharper, whereas the language in the Bill covers a multitude of possible actions.
To conclude, I continue to believe that there is an important and dangerous ambiguity at the heart of the Bill, which we can clear up by focusing on the language. Therefore, we will probably have to return to this—if we ever get that far. I beg leave to withdraw the amendment.