Health and Care Bill

Lords Hansard - Part 1 & Committee stage
Wednesday 9th February 2022 Lords Chamber

Committee (9th Day)

16:11

Relevant documents: 15th, 16th and 19th Reports from the Delegated Powers Committee, 9th Report from the Constitution Committee

[The Parliamentary Under-Secretary of State, Department of Health and Social Care (Lord Kamall) (Con)]

My Lords, I should like to update the House on a matter that has generated significant concern. I have noted the strength of feeling in the House on the issue of, and draft guidance on, elected councillors being appointed to integrated care boards. I discussed this matter with NHS England and can confirm that it will revise its draft guidance to remove the proposed blanket exclusion of local authority members sitting on integrated care boards. I am informed that, although ICB members from local authorities are normally likely to be officials, local councillors will not be disqualified for selection and appointment to an integrated care board.

I welcome this development and hope that it demonstrates that the department and NHS England are actively listening and responding to scrutiny and debate in this House. I have also informed the noble Baroness, Lady Thornton, and asked for a meeting between the Labour Front Bench and NHS England on its preparations.

[Lord Kennedy of Southwark (Lab Co-op)]

I thank the noble Lord for that information. Before we continue with the Committee on the Bill, I wanted to raise my concerns on the Floor of the House as to the importance of always treating each other with respect and courtesy. It is not the fault of anyone in this House that despite a majority of 80 in the other place, the Government have taken longer than expected to present several Bills to this House for our consideration. Although backed by the other place—I fully accept that—the Bills are very controversial in nature and quite properly attract considerable attention.

On a few occasions when considering the Nationality and Borders Bill last night and into the early hours of the morning, our standards slipped. We have another long day ahead of us today and another tomorrow before we all have a well-deserved break in the Recess. I hope that Members on all sides of the House, no matter what position they hold, will respect and pay proper attention to the advice and guidance as set out in the Companion. Committee is a conversation, different from both Question Time and Report. Shouting “question, question, question” from a sedentary position is unacceptable in Committee. Chapter 4 on the conduct of the House and Chapter 8 on Public Bills in the Companion are helpful and informative. I respectfully suggest that all Members regard it as essential reading.

[Baroness Walmsley (LD)]

My Lords, I add the voice of these Benches to the protest by the Opposition Chief Whip in the strongest possible terms. I regret that the Government Chief Whip and the Leader of the House were not here to hear it. I hope that they will read Hansard, because I have some questions to put.

Do the Chief Whip and the Leader of the House accept that Members of this House have a right to be treated with courtesy and not bullied by members of the Government, that they are able to speak when they have a right to do so under Standing Orders, and that they have a right to have their health and welfare considered appropriately? None of that was respected last night when the House sat until 3.20 am.

I emphasise that my comments are not aimed at the noble Lord, Lord Kamall, who has always been most courteous. I ask the Leader and the Government Chief Whip: do they agree that this is a self-governing House; that the Government, like all Governments, are temporary and cannot override the rights of noble Lords appointed independently of this Government; and that opposition parties have no duty to help the Government get controversial legislation through this House? On the contrary, we have a duty to scrutinise it. This House has built its reputation on intelligent, careful and courteous consideration of issues laid before it. Long may that continue.

16:15

[Baroness Jones of Moulsecoomb (GP)]

My Lords, the Green group would like to throw its considerable weight behind the two noble Lords who have just spoken. What we saw last night was disgraceful, and I hope we never see it again.

[Earl Howe (Con)]

My Lords, in the absence of my noble friends the Leader of the House and the Chief Whip, I will respond very briefly to the noble Lords who have spoken by saying that I shall ensure that the comments and questions do reach the Leader, and are treated with appropriate seriousness. We have all heard propositions from both noble Lords on the Front Benches opposite with which there would be wide agreement in the House as to the way we should conduct ourselves. In a spirit of sympathy with many of the comments made, I hope noble Lords will agree that it is appropriate that we discuss this in the usual channels.

Amendment 284

Moved by

[Baroness Cumberlege]

284: After Clause 148, insert the following new Clause—
“Industry reporting
Companies involved in the production, buying or selling of pharmaceutical products or medical devices must publish any payments made to—(a) teaching hospitals,(b) research institutions, or(c) individual clinicians.”Member’s explanatory statement
This amendment requires companies involved in the production, buying or selling of pharmaceutical products or medical devices to publish any payments made to teaching hospitals, research institutions, or individual clinicians.

[Baroness Cumberlege (Con)]

My Lords, Amendment 284 would implement one of the major recommendations of the Independent Medicines and Medical Devices Safety Review. I will say from the start that I so welcome the government amendments. I thank the Minister and the civil servants for crafting them in such a thorough way.

There is one glitch, however, about which I have given the Minister forewarning. All the government amendments say that the Secretary of State “may”—and of course that is a very sneaky word. What we want to see is a more robust word: the Secretary of State “shall.”

However, I do not want to detract in any way from the burden of my amendment, which is that relationships between the pharmaceutical and the medical device industries on the one hand, and the hospitals, medical research institutes and individual clinicians on the other, can be a huge force for good. Industry collaborating with doctors, researchers and scientists working in the NHS, academia or elsewhere has led to great breakthroughs and great treatments that we have been able to introduce. No one should want to stop that happening—but we do have a right to see where the money goes. Despite all the undoubted good that collaboration between industry and the rest of healthcare brings, we know that there are long-standing concerns about undue influence.

We need transparency so that trust can be rebuilt where it has been undermined in the past. Voluntary arrangements are all well and good, but they have a drawback: they are voluntary; they are not a requirement; they carry no teeth. So I am encouraged to see that the ABPI, which represents many pharmaceutical companies in the UK, agrees. It is supportive of moving to mandatory disclosure.

Amendment 284 would make it a requirement for payment by the industry to teaching hospitals, research bodies and individual clinicians to be published by the companies themselves. Such legislation exists and works very effectively in the United States. It is called the Physician Payments Sunshine Act, and it has been in existence since 2010. All the information is held on a public website. Americans can see at a glance which pharmaceutical or device companies have made payments to physicians or others: when, why and how much. It is not just the US which benefits from this level of transparency; various European countries have similar legislation in place, and we should not be the poorer cousin.

I of course welcome the Government’s own amendments that are grouped with mine and very much look forward to what the Minister has to say about them. I hope we can all agree that transparency, trust and good, safe care go hand in hand. That is why the amendments are so important.

[The Deputy Chairman of Committees (Lord Brougham and Vaux) (Con)]

My Lords, I invite the noble Baroness, Lady Brinton, to speak remotely now.

[Baroness Brinton (LD) [V]]

My Lords, this amendment is a companion piece to the previous amendment on declarations of interest that we believe should be made by doctors and other regulated healthcare staff, and ensures that any companies involved in the production, buying or selling of pharmaceutical products or medical devices must publish any payments made to teaching hospitals, research institutions or individual clinicians. Whether someone wants to know about a doctor working with a pharma company, or the other way around, we need a system that provides a golden thread of transparency and accountability.

Reporting payments or benefits in kind by the relevant organisations and individuals receiving them ensures that the links between donors, recipients and their respective interests are always visible. Although it is, we hope, rare, this is more than just transparency. As in any walk of life, occasionally there is malpractice and fraud, which needs to be prevented. A register such as this helps to remind all those concerned of the rules.

I echo the comments made by the noble Baroness, Lady Cumberlege, that “may” is not strong enough: “shall” is important here. The noble Baroness also referred to the USA Sunshine register; and, as I said on the last group of amendments, we definitely need the disinfection of sunlight. Can the Minister say whether any such regulations on industry reporting might be published and brought into force?

[The Deputy Chairman of Committees (Lord Brougham and Vaux) (Con)]

My Lords, I invite the noble Lord, Lord Howarth of Newport, to speak remotely now.

[Lord Howarth of Newport (Lab) [V]]

My Lords, I thank the noble Baroness, Lady Cumberlege, for tabling Amendment 284. If we are to avoid the risk of corruption and maintain full public confidence, it is vital that there should be full disclosure of payments by commercial interests to hospitals—I would have thought to all hospitals, not just teaching hospitals—research institutions and clinicians. It is a good maxim to follow the money and to be able to do so.

In regard to research, there has long been public concern about business interests suborning researchers whose judgments and pronouncements influence public understanding, sometimes with important implications for public health. Corrupt scientists certified that DDT and pesticides used in agriculture were not harmful to public health. Exposure of that by Rachel Carson in her book Silent Spring did not end the mischief. Bogus research evidence was paid for for decades by the tobacco industry in a rearguard action to persuade Governments and the public that tobacco was not harmful to human health.

Today, firms in the food industry deploy spurious evidence and arguments about the damage certain foods do to human health. They have lobbied Government with considerable success to the terrible detriment of human health—it is good that the Bill limits the advertising of unhealthy foods. Scientists, paid by energy firms, have abetted those who deny that climate change is manmade.

Disclosure payments in regard to research will help, but more is needed. The noble Baroness might have considered—and may yet consider—tabling another amendment needed to underpin research ethics. The data on which research conclusions are based should be held independently. The Engineering and Physical Sciences Research Council rightly now requires researchers to deposit data connected to the research they have funded.

There is huge pressure, in a competitive environment, on scientists to publish research, and there have been notorious instances of fake science—scientific discoveries announced that were made up and whose results could not be replicated by other researchers. A paper entitled Fake Science and the Knowledge Crisis published by the Royal Society said,

“it is especially important that the scientific world as a whole upholds the highest standards of ethical behaviour, honesty and transparency, aiming to sustain the gold standards of research integrity and validated information.”

However, the authors go on:

“Sadly, a range of forces are working counter to this aspiration.”


It is good that the pharmaceutical industry in the United Kingdom supports the transparency that the amendment calls for. We should certainly match the best standards and practice in the USA and Europe.

The NHS holds huge budgets for drugs, medical equipment and hospital building; big commercial interests are at stake. There is scope for corruption if the system is weakly regulated. The scandal of PPE contracts has led to widespread anxieties about the integrity of procurement. The public want to believe that the NHS is free of corruption, and I am sure it mainly is, but reassurance is needed. As the noble Baroness, Lady Brinton, reminded us. in the old saying, sunlight is the best disinfectant. We need the transparency that the amendment would secure.

The government amendments are, certainly at first blush, welcome. But, as the noble Baroness, Lady Cumberlege, noted there is a conspicuous difference in language between her amendment, which says that companies “must” publish payments, and the Minister’s amendments, which say that the Secretary of State “may” require or regulate. That slide of language is liable to weaken public confidence. I hope the Minister will explain why he has used the word “may” and not “shall” or “must”.

The government amendments are as elaborate as the noble Baroness’s is simple, and they prompt some questions. In the Government’s Amendment 312B, subsection (6)(b) states:

“The regulations may … create exceptions from requirements to publish or provide information.”


What would those exceptions be? Subsection (8) states that the Secretary of State may,

“grant an exception … in a particular case.”

What sort of case? Earlier in Amendment 312B, subsection (1)(a) refers to “payments or other benefits”. I ask the Minister whether the disclosure requirements he envisages cover benefits in kind, including donations to political parties. whether made by big pharma or small local donors.

I do not want to be cynical. How can the Minister reassure those who are?

16:30

[Lord Patel (CB)]

My Lords, I shall try to be brief, otherwise we will be here until 3 am, and I am sure none of us want that. I join the noble Baroness, Lady Cumberlege, in the comments she has made, and I support her amendment and the government amendments. I also agree that the system should be mandatory— not “may” but “shall”— and aligned with the similar system in the United States which I was used to many years ago.

To try to explore this further with the industry, I have been in correspondence with the ABPI to test how committed it is to agreeing to this being mandatory and that they “shall report” in all aspects. I will read what it sent me:

“ABPI are supportive of the intention to move to a mandatory model of disclosure for payments made between industry and relevant individuals including Health Professionals, and”


all healthcare organisations and research institutions. It continues:

“We believe proposals to introduce a legislative mandate are an opportunity to further strengthen the pharmaceutical sector’s existing transparency mechanism for branded medicines”—


that was the point I made to it, that its system needs to be transparent, mandatory and easily accessible by patients and the public. It goes on:

“Our briefing outlines a number of considerations and learnings based on ABPI’s experience running Disclosure UK, which since 2016 has supported transparency around transfers of value made by the innovative pharmaceutical industry to relevant individuals including Health Professionals … and Healthcare Organisations”.


I asked for a similar comment from industries that market medical devices, and I understand that a similar commitment is made by those companies too.

I therefore support the noble Baroness, Lady Cumberlege, and support the Government’s amendment. However, I hope that the Minister can confirm that the loose word “may” is not intentional and they intend to make this mandatory.

[Baroness Bennett of Manor Castle (GP)]

My Lords, I rise very briefly, rather enjoying this reunion from our debates during the passage of the Medicines and Medical Devices Bill of a group of people who taught me a great deal about dealing with legislation. We also looked at an amendment that was very like this. There is a phrase I use often: “Campaigning works”. I should make that “Campaigning by the noble Baroness, Lady Cumberlege, works particularly well”. We are seeing real progress here, although, as many noble Lords have already said, we need to make sure that this is mandatory and not some kind of voluntary extra.

When I was working on the then Medicines and Medical Devices Bill, I spoke to a number of people from the industry. They were very much concerned about the fact that they wanted tight rules that apply to everybody, otherwise those who cut corners and push the envelope have a competitive advantage against people who doing the right thing, being absolutely open and not flinging money around. Many parts of the sector are keen on tight rules.

It is interesting that it has taken us so long to get to this point when the noble Baroness, Lady Cumberlege, presented ways of doing this back in the Medicines and Medical Devices Bill. We have not heard the Government using their favourite phrasing “world-leading” or “world-beating” very often in this area. As the noble Baroness, Lady Brinton, said, we are very much trailing behind other countries in our transparency here.

I will make one final comment. We have a huge problem with public trust—we see this on the street outside your Lordships’ House quite often. Absolute transparency and openness is crucial and, as we heard in Oral Questions earlier, the fact that some companies have been able to profiteer hugely from the pandemic causes more damage to public trust. We need to tackle that with as much of the sunlight of transparency and openness as possible.

[Lord Stevens of Birmingham (CB)]

Briefly, I also support these amendments, including the Government’s comprehensive amendment, but I was spurred into action by the noble Baroness, Lady Bennett. It is worth saying that when it comes to public trust, a survey of 28 countries conducted at the end of last year found that British doctors were more trusted by people in this country than doctors in any of the other 27, so we start from a well-founded position of high trust. However, trust in a profession is of course founded on the basis that people will act in a way that puts the interests of the person they are looking after first, and these amendments help to deliver that.

I want to use the opportunity to try to draw the Minister out slightly on a couple of questions supplementary to those which my noble friend Lord Patel raised. Sunlight may indeed be the best disinfectant. but we have two types of shade going on at the moment. The first is that, through the voluntary register which the ABPI established in 2017, we have just under a third of eligible doctors who are not reporting. Therefore, obviously to the extent that the Government commence these amendments on a mandatory basis, that will deal with that aspect of shade; the 68% will become 100%, which will be most welcome.

The second type of shade relates to the scope of the payments that have to be declared. Here, I think the Government’s amendment is potentially very suitably broad. However, it would be wonderful to hear the Minister confirm that it will cover payments to all NHS bodies, not just to trusts or indeed teaching hospitals; that primary care will be in scope; that it will cover the independent sector as well as the NHS; that it will cover payments made to patients’ organisations; and whether, in time, the Government will consider extending it to payments made to health professionals other than doctors. I conclude by simply reporting that when you ask people in this country which profession they most trust, the answer is actually not doctors; it is nurses.

[Baroness Finlay of Llandaff (CB)]

My Lords, I have my name on this amendment. I will not repeat all the points made by other people so far, but I point out that using the words “shall” or “must” avoids any argument over threshold. The problem with having a word that is not definitive is that there would be arguments over what would and would not have to be declared.

To put a slightly positive note on the whole situation, I say from clinical experience that patients want to go into trials and to contribute to the level of knowledge. Very often, people who are seriously ill will say, “I know that I won’t benefit from it, but I hope that other people will by me going into this trial”. But they want to know that the trial is properly conducted, that everything is open, that nobody is profiteering from their generosity and that they are genuinely contributing to the body of knowledge across the country. When people who I know socially contact me because they have been given a potentially devastating diagnosis and have been referred to somebody, the question is always, “Are they the best in the field?”, which is often followed up with, “Are they doing research in the field?” and “Are they completely up to date?” So often, when people realise that they are deteriorating, they will ask whether there is a trial that they can be entered into.

This goes much further than just being sunlight. This amendment would support future endeavours and innovation in the country and would encourage people to enter into studies.

[Baroness Wheeler (Lab)]

My Lords, very briefly, we welcome the Government’s proposals on mandatory disclosure of payments, a companion piece to the previous debate that we had, as has been pointed out.

As noble Lords have always stressed, greater transparency is highly desirable and a very good thing. I am grateful to the Minister for listening to the voices of stakeholders and parliamentarians on this. Indeed, nine out of 10 medical professional bodies think that patients have a right to know if their doctor has financial or other links with pharmaceutical or medical device companies and they support stronger reporting arrangements, as contained in the amendments. I am grateful for the briefing I have received from the ABPI, which, as we have heard, also supports mandatory disclosure.

I also note that Amendment 312D refers specifically to the consultation with the devolved Administrations in Scotland, Wales and Northern Ireland and to obtaining the

“consent of the Scottish Ministers, the Welsh Ministers or the Department of Health in Northern Ireland … before making provision within devolved legislative competence in regulations relating to information about payments etc to persons in the health care sector.”

We would welcome the Minister reassuring us that full consultation is under way and setting out the timescales involved.

On Amendment 284, the non-government amendment leading this group, the intention of the amendment and the arguments put forward by noble Lords are extremely persuasive. The requirement for companies involved in the production, buying or selling of pharmaceutical products or medical devices to publish any payments made to teaching hospitals, research institutions or individual clinicians is a sensible measure that would complement the Government’s package, and I await the Minister’s thoughts on it, including on the one glitch underlined by the noble Baroness, Lady Cumberlege, on moving from “may” to “shall”.

[Lord Kamall (Con)]

My Lords, I thank all noble Lords who took part in this debate, especially my noble friend Lady Cumberlege for her work on the independent review of medicines and medical devices, and other noble Lords who were involved in that. I know that she worked tirelessly to make sure that patients and their families have been heard and I pay tribute to her and her team. I also thank her for her lobbying—or reminding—me of the pledge that I made when I first became a Minister on championing the patient.

I welcome my noble friend’s amendment to increase transparency and promote public confidence in the healthcare system. The Government fully support the intention behind the amendment. That is why I will be moving Amendments 312B, 312C, 312D, 313B, 313C and 314ZB in my name. Before I do so, let me answer some of the questions.

All these amendments relate to the transparency of payments made to the healthcare sector. The Independent Medicines and Medical Devices Safety Review led by my noble friend Lady Cumberlege listened to the brave testimony of over 700 people to understand where improvements needed to be made to make the healthcare system safer for all patients, especially women. The Government have given the review deep consideration and accepted the majority of its nine strategic recommendations and 50 actions for improvement.

To improve transparency, the review recommended that

“there should be mandatory reporting for pharmaceutical and medical device industries of payments made to teaching hospitals, research institutions and individual clinicians”.

The amendments deliver on this recommendation by enabling the Secretary of State to make regulations requiring companies to publish or report information about their payments to the healthcare sector. The clause covers any person performing healthcare as part of their duties, benefiting patients and building on initiatives by regulators and industry. I hope that partly answers the questions raised by the noble Lord, Lord Stevens.

The amendment also allows for the Secretary of State to make regulations requiring that the information be made public and make further provision about when and how the information must be published. This could include requiring self-publication or publication in a central database. That ensures that we can adapt the system to improve reporting as necessary. To ensure that companies fulfil the obligation, requirements introduced by the regulations can be enforced using civil penalties.

There are benefits to this duty applying UK-wide, aligning with the approach taken by the pharmaceutical industry with its Disclosure UK system. As the noble Baroness, Lady Wheeler, referred to, the clause contains a statutory consent requirement, so we will work closely with the devolved Governments to develop regulations following the passage of the Bill. We will also work with patients, industry and healthcare providers to create a system that enhances patient confidence while maintaining a collaborative, world-leading UK life sciences sector.

A question was raised about the issue of “shall” versus “may”. The Government have not tabled these amendments in bad faith; we would not have tabled these amendments if we did not intend to work with them. It is the intention of my right honourable friend the Secretary of State to bring forward regulations under the clause to make sure that there is transparency. If that is not reassuring enough, perhaps between this stage and Report there can be some conversations to make sure that noble Lords are assured. It is for these reasons that I ask your Lordships’ Committee to support these amendments.

[Lord Patel (CB)]

Can the Minister confirm what he just said: that it is the intention to bring regulations? How strong is that intention? The “may” creates a problem.

[Baroness Bennett of Manor Castle (GP)]

My Lords, can I add a question about timeframes to that? When can we expect the regulations?

[Lord Kamall (Con)]

I have two points to make to the noble Lord. First, I have been advised that this is standard wording. Secondly, I have made the assurance at the Dispatch Box. It is here; it is on public record that the Government intend to bring forward regulations. On the timeframe, I will either write to noble Lords or arrange a follow-up meeting. I will make sure that there is some communication to bridge that gap.

[Baroness Cumberlege (Con)]

My Lords, I thank everybody who has taken part in this debate, particularly my noble friend the Minister for the work he and his officials have done to bring this into the Government’s remit. That is so important, because I learned through the passage of the Medicines and Medical Devices Act that we could incorporate the patient safety commissioner and some of the other things we wanted to achieve only through government amendments. My heart leaped when I saw these amendments and I thank the Minister.

I still think these amendments could be improved and it is important that we get the word “shall” in, or “might” or whatever others have said, rather than “may”. I was looking at the Oxford English Dictionary. My father-in-law was the publisher to the Oxford University Press, so the dictionary is very close to my heart. The dictionary says that the verb “shall” relates to the right or sensible thing to do, whereas the verb “may” is defined as a possibility.

16:45

I have absolutely no doubt that the Minister will do all he can to ensure that the Secretary of State brings this into effect, but he will know, as all of us in this Chamber know, that Secretaries of State come and go. You are always starting from base again with a new Secretary of State, so there is an urgency about this.

Before I bring this to a close, I want to thank the noble Baroness, Lady Brinton. She is always so much on the ball and so concise and straight. The noble Lord, Lord Howarth, is so right that it is other, huge organisations that influence what is happening. There is the tobacco industry, which he mentioned, the food industry, and we saw the devices industry, which so influenced what is happening. I thank the other Members who took part, including the noble Lord, Lord Patel, with his second intervention, and the ABPI for its work.

I say to the noble Lord, Lord Stevens of Birmingham that of course he is right; we need to reach much more widely. But I have found throughout the Bill and previous Bills, where we have enacted them, that you have to start somewhere, and we felt that this was a credible way to start, and something to build on at least. But he is right; it should go wider.

I thank the noble Baroness, Lady Finlay, so much for supporting this amendment. She is absolutely right in what she has been saying. Research is so important, and that is all part of this. We are not trying to cut down research. We just want to see where the money is going, and we want patients to know how things are being influenced regarding the finances being poured into certain organisations. I mentioned the big hospitals, the teaching hospitals and so on. We have a right to know, us taxpayers and us patients, where the money is coming from. That is all I wish to say. I withdraw the amendment.

Amendment 284 withdrawn.

Amendments 285 not moved.

Amendment 286 had been withdrawn from the Marshalled List.

Amendment 287

Moved by

[Baroness Finlay of Llandaff]

287: After Clause 148, insert the following new Clause—
“Dispute resolution in children’s palliative care
(1) This section applies where there is a difference of opinion between a parent of a child with a life-limiting illness and a doctor responsible for the child’s treatment about—(a) the nature (or extent) of specialist palliative care that should be made available for the child, or(b) the extent to which palliative care provided to the child should be accompanied by one or more disease- modifying treatments.(2) Where the authorities responsible for a health service hospital become aware of the difference of opinion they must take all reasonable steps—(a) to ensure that the views of the parent, and of anyone else concerned with the welfare of the child, are listened to and taken into account;(b) to make available to the parent any medical data relating to the child reasonably required to obtain evidence in support of the parent’s proposals for the child’s treatment (including obtaining an additional medical opinion); and(c) where the authorities consider that the difference of opinion is unlikely to be resolved entirely informally, to provide for a mediation process, acceptable to both parties, between the parent and the doctor.(3) In the application of subsection (2) the hospital authorities—(a) must involve the child’s specialist palliative care team so far as possible; and(b) may refuse to make medical data available if the High Court grants an application to that effect on the grounds that disclosure might put the child’s safety at risk having regard to special circumstances.(4) Where the difference of opinion between the parent and the doctor arises in proceedings before a court—(a) the child’s parents are entitled to legal aid, within the meaning of section 1 of the Legal Aid, Sentencing and Punishment of Offenders Act 2012 (Lord Chancellor’s functions) in respect of the proceedings; and the Lord Chancellor must make any necessary regulations under that Act to give effect to this paragraph; and(b) the court may not make any order that would prevent or obstruct the parent from pursuing proposals for obtaining disease-modifying treatment for the child (whether in the UK or elsewhere) unless the court is satisfied that the proposals—(i) involve a medical institution that is not generally regarded within the medical community as a responsible and reliable institution, or(ii) pose a disproportionate risk of significant harm to the child.(5) Nothing in subsection (4) requires, or may be relied upon so as to require, the provision of any specific treatment by a doctor or institution; in particular, nothing in subsection (4) —(a) requires the provision of resources for any particular course of treatment; or(b) requires a doctor to provide treatment that the doctor considers likely to be futile or harmful, or otherwise not in the best interests of the child.(6) In this section—“child” means an individual under the age of 18; “health service hospital” has the meaning given by section 275 of the National Health Service Act 2006 (interpretation);“parent” means a person with parental responsibility for a child within the meaning of the Children Act 1989.(7) Nothing in this section affects the law about the appropriate clinical practice to be followed as to—(a) having regard to the child’s own views, where they can be expressed; and(b) having regard to the views of anyone interested in the welfare of the child, whether or not a person concerned within the welfare of the child within the meaning of this section.”

[Baroness Finlay of Llandaff (CB)]

My Lords, this amendment has been several years in gestation. It dates back to the case of Charlie Gard in 2017. There have also been other cases that suggested we must do better than rush to the courts, with all the anguish that causes to parents and clinicians alike, let alone the expense to the NHS and others. That is why I am proposing that there should be independent mediation where there is a serious disagreement between loving parents and the clinical team caring for a child who is not Gillick-competent.

Difficulties arise when the child’s prognosis seems hopeless to clinicians but the parents do not share that view and want to know that they have tried everything. The clinicians may feel that the best interests of the child would be for the child to be allowed to die, but the parents can perceive this as life being ended, even though the child would have already died without all the care and interventions that had been put in place. In other words, when death occurs, the child dies of their underlying condition. The clinicians have not euthanised the child. However, pressures in the media towards doctors administering lethal drugs and euthanasia have portrayed death as a solution, and there is a perception that our overwhelmed NHS is desperate to clear beds, save money and, sadly, even cover up shortcomings.

However, no one has interests when they are dead; they are a corpse. By contrast, the parents feel that any improvement is worth having, and that it is in the best interests of the child to continue to experience their love and affection and to try a novel therapy that seems, on balance, possibly to do more good than harm—that is, it does not cause significant harm to the child—and, if there is no improvement, it is easier for them to accept the natural death of their child.

In Charlie’s case, a novel treatment seemed to offer hope, a nucleoside powder to be added to feeds of mitochondrial depletion syndrome. This did not involve invasive procedures and was estimated by New York-Presbyterian Hospital and Columbia University Irving Medical Center’s Dr Hirano to have a 56% chance of success. That is important because it is over 50%. In 13 out of 18 children with TK2 mitochondrial depletion it had appeared to be beneficial but it had not been tried in RRM2B, the variant that Charlie had. This was not a distressing invasive treatment from a dubious medical centre, and the parents would gladly have had Charlie as part of an N of 1 trial, accepting failure but knowing that they had done everything.

The total cost of a three-month trial of nucleoside powder would have been about £3,000. Contrast that with the costs of over £250,000, made up of £205,225 costs to Great Ormond Street Hospital, almost £35,000 that his parents had to fundraise for, and £32,500 spent by Cafcass. That seems to be the norm. Cafcass also reported that in 2016 it was involved in 18 parent-doctor disputes that ended up in court. If these costs are indicative, that suggests around £4.5 million from the NHS each year.

No one should underestimate the intense emotional anguish of these parents in such cases, nor the stress and difficulty for the clinical team. The requirement that the parents can seek a second opinion means that they can do so swiftly, with full access to their child’s clinical record. This recognises the speed with which children can deteriorate when very ill.

Currently a second opinion may be sought only by a clinician. This part of the amendment would put the parents on an equal footing to ensure that they could seek one too. If there is a dispute between those with parental responsibility then, as now, the court would have to be involved. It is for the courts to veto inappropriate demands, and no clinician would ever be forced to administer a treatment that they did not view as being in the best interests of the child.

Rather than clinicians and parents being pitted against each other, with press interest and the risk of campaigning groups further polarising views, the amendment proposes that independent mediation must be offered. It needs to be independent to remove the suspicion that the mediator is entering the discussion biased towards the clinical establishment and away from the parents. Mediation is different from arbitration; it must be voluntarily entered into, using mediation processes designed to avoid legal disputes. It may help the parents to realise that the clinicians’ decisions are right after all and in the best interests of the child. Indeed, such realisation is evident in some of the very sensitive judgments given by the court.

The amendment would focus on the balance of probabilities. There is no absolute line because each case is different. If the dispute remained intractable, the case would proceed to the court, where the court would have to take into account all the evidence and consider whether the risk was significant. “Significant” is not a precise medical term; it would leave it to the court to decide whether the risk of harm involved in the parents’ proposal was sufficiently significant to interject across their parental responsibility and prohibit the proposed treatment. It would create the legal test of “disproportionate risk of significant harm” to assess the balance of factors, replicating the legal test already used by social services under the Children Act 1989 to consider whether to remove the child from their parents’ care. This legal test would sit before, rather than replace, the current “best interests” test, which is very broad and can be subject to different interpretations.

Contrary to the misleading briefing that some Peers may have received, the legal test in the amendment would not allow a person with parental responsibility to force any intervention. The court must always be, and would remain, free to objectively judge the issues. In the rare cases where disputes still reach litigation, access to legal aid would ensure families can access justice without being forced to rely on outside interest groups to fund the case.

The aim of this amendment is to solve some major problems for the Government. It would ensure resolution of some distressing prolonged disputes between loving parents and clinicians, disputes that benefit no one, and would reduce the likelihood of cases escalating to the courts and the millions of pounds in litigation costs. I beg to move.

[The Deputy Chairman of Committees (Lord Geddes) (Con)]

I advise the Committee that the noble Baronesses, Lady Brinton and Lady Masham of Ilton, have indicated that they wish to take part remotely. I call the noble Baroness, Lady Brinton. I am sorry, I thought it was in alphabetical order. I shall therefore call first the noble Baroness, Lady Masham.

[Baroness Masham of Ilton (CB) [V]]

My Lords, in supporting Amendment 287 I cannot think of a better person to have moved it than my noble friend Lady Finlay of Llandaff, professor of palliative care. If there is a dispute, a difference of opinion, between a parent and a child with a life-limiting illness and a doctor responsible for the child’s treatment, it can be heartbreaking. The stress and anxiety the parents can be put under can be unbearable if the doctor in charge is invincible. It is important to ensure that the views of the parents and anyone else concerned with the welfare of the child are listened to and considered.

The amendment would put mechanisms in place and highlight benefits that Charlie’s law can provide for both parents and doctors when a major difference of opinion arises. Most parents will do anything for their children in a critical situation if there is a slight hope that the treatment might work and benefit their child. Sometimes the treatment is abroad and not available in the UK. This happened to Ashya King, a young boy who had extensive surgery for an aggressive brain tumour. His parents wanted to take him to the Proton Therapy Center in Prague for treatment, but there was a dispute with Southampton hospital. At that time, there was no proton treatment in the UK. His parents took him from the hospital to Spain via France, landing up in prison in Spain and making a court appearance. This traumatic struggle hit the headlines and, in the end, young Ashya did go to the Czech Republic for treatment. How much better it would have been if there had been an agreement to save a humiliating situation for everyone.

A great deal of work and care has gone into this amendment. I thank my noble friend for all she has done, and I hope the Government will accept the amendment.

17:00

[Baroness Brinton (LD) [V]]

My Lords, I will be very brief, as the noble Baroness, Lady Finlay, has comprehensively explained why her amendment, Amendment 287, which seeks to create a dispute resolution mechanism in children’s palliative care, is important. There is no doubt of the challenges experienced by parents who are facing the dreadful news of their child’s deteriorating health and likely end of life, and who are trapped in a process that makes them feel as if their requests for new, different or more treatment are being refused by the hospital, not least if they feel that the hospital is acting as prosecutor, jury and judge against their wishes.

However, as the noble Baroness, Lady Finlay, has outlined, one must also sympathise with doctors and other healthcare professionals who believe that they are doing the best for the child in these distressing circumstances. For these cases to end up going through the courts is not a good dispute resolution process. The noble Baroness, Lady Finlay, has also outlined the extreme costs to the NHS and to the parents of the child. We now need a system, even if rarely used, which parents can feel is independent but medically expert to help to resolve and mediate the dispute when the relationship between them and the hospital has broken down.

[Baroness Hollins (CB)]

My Lords, I added my name to Amendment 287, and I thank my noble friend for tabling Charlie’s law. Charlie Gard’s case was painful for all involved, including his parents and the doctors at the hospital where he was receiving treatment. Protracted disagreements can have far-reaching effects, particularly when they are played out in public, as has happened in a small number of cases. For the child, it can mean a delay in a decision about their care and treatment. For the parents and family of the child, there can be enormous distress, feelings of loss of control, and financial strain. Healthcare staff can also experience stress and anxiety, and they might be subjected to intimidation.

The parents of Charlie Gard, Alta Fixler, Alfie Evans, Tafida Raqeeb, and many others, wanted to do what any parent would do to try to improve their child’s condition and alleviate their child’s suffering. However, it is evident that the parents in such cases do not feel adequately heard and listen to when discussing options about their child’s treatment. This results in the devastating conflicts that lead to litigation. With this amendment, parents would be given the chance to discuss their views openly with the clinicians and hear the views of those clinicians, too.

Too often in my career, I have heard distressed parents described as “difficult” and “impossible to work with—nobody can work with them”. These are grieving parents who are looking for someone they can trust to help them. Mediation can sometimes help parents, and professionals to acknowledge that the consequence of conflict has been to shift focus away from the needs and welfare of the child. An independent mediation process can help to facilitate less confrontational conversation while supporting both parties. Thus, it provides support for both. Mediation across England is inconsistent. It needs to be available in every NHS hospital where conflict emerges, and at an early stage, so that the lives of very sick children such as Charlie are less likely to escalate to court.

In the rare event that a child’s case escalates to court, the amendment seeks to provide access to legal aid to ensure that families are not burdened with the financial strain of legal representation. Currently, families in this position are effectively punished, both financially and emotionally, through litigation for simply doing what they strongly believe is in their child’s best interest. Although this amendment makes provision for legal aid, the main purpose is to keep cases such as Charlie’s out of court, rather than arming everyone to be prepared to enter into long-winded and expensive legal disputes. Parents would not automatically win the right for their children to be given novel treatment, but the amendment would rebalance the dialogue towards resolution, rather than towards costly and distressing legal battles that do nothing to help the parents’ grief.

I also strongly support the introduction of the significant harm test. This legal test would focus on whether an alternative credible medical treatment could cause a child “disproportionate risk of significant harm” when deciding whether a parent can seek that treatment for their child. A key point here is that no medical professional would ever be required to give care or treatment that they did not view as in the best interests of the child. The legal test is already widely used under the Children Act 1989 and should be applied to cases such as Charlie’s in the future. I am strongly in support of this amendment and commend it. It is a just and necessary package to support parents and doctors, and I hope the Minister will be in a position to welcome it.

[Lord Moylan (Con)]

My Lords, I have also put my name to this amendment. I congratulate the noble Baroness, Lady Finlay of Llandaff, on bringing it forward.

We need a broad debate on the balance of responsibility for children as between parents and the various arms of the state. Sadly, these have come to include the medical profession. Today is not the day for that debate, but this amendment does something to give a voice to parents who find themselves in dispute with doctors, often unaided, unsupported and dependent on voluntary contributions, so that they have at least a voice and a status in decisions about their sick child. I very much hope that the Government will be able to support this.

[Baroness Stowell of Beeston (Con)]

My Lords, I do not very often become involved in health matters, so I hope that your Lordships will indulge me on this occasion.

Five years ago, when Charlie Gard’s parents were doing everything they could to fight for his life, I, like everyone else, was moved by their determination. Even so, my instincts were to accept what the Great Ormond Street hospital doctors were advising and what the judge decided was in Charlie’s best interests. I fall into the camp which believes that, in such an unimaginable, heartbreaking situation, the objective and dispassionate professionals are best placed to make a decision that no parent would ever want to have to make for themselves. When Charlie sadly died, I was moved by his parents’ dignity in coping with their heartbreak in the midst of a legal battle and in the full glare of publicity. Probably like many others who felt so sorry for their loss, I soon moved on and thought little more about this tragic case.

Then, just over a year ago, during the Christmas lockdown, when I was out on my daily walk, I heard an interview that Charlie’s mother, Connie Yates, gave to Andy Coulson on his podcast, “Crisis What Crisis?” For well over an hour, I listened to Connie tell her story. She spoke clearly, intelligently and reasonably about their experience as a family during the year in which Charlie lived, and about all that she and her partner, Chris, went through in their fight to be heard and taken seriously by doctors and lawyers. From listening to Connie, I learned that their expectations were well-informed and reasonable but that as the dispute continued, the situation became increasingly fraught and distressing —to the point where their efforts to be heard as parents made them feel that others believed they were guilty of not wanting the best for their baby. Even so, she was at pains to praise all the medical staff who had cared for Charlie at Great Ormond Street.

Towards the end of the interview, Connie told Andy Coulson that a Private Member’s Bill was being sponsored by the noble Baroness, Lady Finlay, that would bring to life what she called “Charlie’s law”. The noble Baroness has described this law. When Connie talked about it, I was struck by how modest and reasonable it is to create a legal framework to allow for resolution, without the added stress and trauma that they had faced during the time when they were fighting for Charlie. It also struck me very powerfully that, in developing this framework, Connie had taken the time to contact and listen to the doctors who had opposed her, so that she could better understand them and their position. That is worth emphasising again: this young woman is so reasonable that she wanted to create a law that would work for the benefit of the medical profession, not just parents.

As I finished listening to Connie, I vowed that I would support that Bill whenever it appeared. But as we know, Amendment 287 is here in lieu of that Private Member’s Bill, and arguably is a better way to introduce this measure, rather than having to battle with the usual procedural risks that are associated with private Members’ legislation. I am delighted to lend my support to this amendment. I am sure there are technical matters within the amendment which might require discussion between the noble Baroness and the Minister, but I urge my noble friend to take this seriously.

Given the ordeal that Charlie’s family faced a few years ago, when no one in authority listened to them, I am sure it would bring them a huge amount of comfort to know that they are being heard now. That is my main point and motivation today. Of all the things we must do if we are to level up this country, listening and taking seriously people who feel ignored or misunderstood is the most important aspect of that agenda, and in this context it costs us nothing.

I also say to Connie Yates, should she be listening today or read the record subsequently, that she is one impressive woman. When I heard her speak, and listened to what she had to say, she changed my mind and made me realise I had been wrong not to listen more carefully a few years ago.

[Lord Balfe (Con)]

My Lords, I welcome the amendment put forward by the noble Baroness, Lady Finlay, and will make what have been described as technical points. While I think this is a very good base, there are some things that I think need looking at.

I trained as a commercial mediator some years ago, and practiced for a couple of years, before I was signed up by David Cameron to do a different job. The first point I make is that there is a difference between commercial and family mediation. It is important to realise that. I notice that the amendment says

“where the authorities consider that the difference of opinion is unlikely to be resolved entirely informally”.

I suggest that it cannot be the authorities that decide; it has to be offered equally to both sides. That is why it will not be appropriate for the authorities to provide the mediation service. There are a couple of good, independent mediation services, including the Centre for Effective Dispute Resolution and the Alternative Dispute Resolution Services, but if it is to be a system which has the confidence of both sides, it must be independent of the authorities.

The next point I would like to make is this. There is a big difference between family and commercial mediation, and the difference is fundamental. Commercial mediation produces a legal, enforceable result; family mediation produces an agreement which has no legal force. One of the points which must be addressed if this is to be brought to fruition is what is to be the status of the mediation agreement. That is fundamental.

I was a commercial meditator and in East Anglia, where I was, we had a practice of commercial mediators going out also with family mediators to get an experience of the full area. One of the most distressing points about family mediation was the way in which families would bicker, eventually reach some sort of compromise, and, before you were through the door, decide they were not going through with it. If mediation is to work, it will have to have some sort of resolution at the end where the medical profession and the family can say, “This is settled”—not where one side can say, “Well, I don’t really like the outcome”. This could be the case, particularly in a complex medical situation, where you have a number of doctors involved and maybe two or three of them are part of the mediation but there is then someone further up the line who says, “No, I just don’t accept this”. There has to be a dispute resolution which has a legality about it.

17:15

The next point I want to make is that the NHS, as we have heard in other debates on this Bill, is a terribly litigious place, and I am afraid that we need to take care that we are not opening up yet more cases for the Medical Defence Union and medical defence solicitors. I speak from very limited experience here, as I have a sister-in-law who is a retired medical negligence solicitor. As we all know, around the country there are companies of medical negligence solicitors. Their money is funded from the National Health Service through encouraging people to take legal action whenever possible. No general practitioner ever proceeds without his MDU cover, because it is just not safe to do so.

So we also need to look at the way in which the legal profession will get involved, and that, I am afraid—noble Lords will probably expect this from a Conservative—means that we have to look at the way in which the legal aid fund is able to be used. It cannot be an open fund; it will have to have some limitations on it. It is not for me to suggest what they are, but it is for me to suggest that they will be needed at some point.

The next point we have to consider is that when I was doing mediation it was much cooler, because commercial mediation is really about financial disputes between you and your builder. If you are doing this sort of mediation, you have to recognise that some people will go into it determined not to settle, and a mediator cannot force them to settle. There are not many such cases but, even in the area I worked in, in something like 15% of the cases you could tell within the first five minutes that they were there for an outing, not a settlement, often—this was the crucial thing—because emotional considerations had taken hold of the day. They were there because they did not like something or they wanted to get their own back, et cetera, and the mediation was never going to work.

So we need to look at the way in which people are referred to mediation, because it will not work if it is forced. If you say to a couple, “You’ve got to go to mediation”, they may well say behind your back, “Oh well, I suppose we’d better go through with it, but we don’t have to make it binding”—and they do not, of course, because the whole essence of mediation is agreement between two conflicting sides. We have to recognise that you cannot force people to mediation and that, just as the authorities can decide that it might be appropriate, it will not be appropriate unless both sides agree with it.

I say these things not to pour cold water on the amendment, because I think it is very worth while. This path could aid a lot of families, but my view of this clause is that it still needs quite a lot of work. I hope the Minister will be able to say, “We think this is probably a good way forward, but we need to look closely and further at it and discuss with the noble Baroness how we can make this system actually work”. A number of technical problems will have to be looked at, and overcome, if it is to be anything other than a clause in a Bill that never gets off the ground.

[Baroness Walmsley (LD)]

My Lords, there is considerable merit in an independent dispute resolution service. I will be very brief, because I believe that at the heart of this is the following: for over two decades, this country has been a signatory to the UN Convention on the Rights of the Child, which recognises that a child has its own rights, independent of its parents. So I was very pleased to hear the noble Baroness, Lady Finlay, refer to the best interests of the child, which will be based on their rights under the convention.

[Baroness Wheeler (Lab)]

My Lords, I thank the noble Baroness, Lady Finlay, for this amendment and other noble Lords who have contributed to this highly emotional and compelling debate about the welfare, care and medical treatment of critically ill children. I also thank Emma Hardy MP for ensuring that this key issue was debated in the course of the Bill’s passage through the Commons and the work that she, other MPs and noble Lords have undertaken with parents and medical staff to help build and develop the framework that is set out in the amendment where care and treatment are disputed: Charlie’s law, in memory of Charlie Gard.

The amendment seeks to mitigate conflicts at the earliest stages, provide advice and support, and improve early access to independent mediation services to prevent the traumatic and bitter legal disputes that we have all seen all too often. Noble Lords have highlighted these, as well as the benefits that the step-by-step processes set out in the amendment would provide for parents and doctors, which are of course central to the consideration of the child’s welfare and best interests. In particular, providing families with access to legal aid if court action takes place would, as the noble Baroness, Lady Finlay, pointed out, ensure that they do not have to rely on raising funds themselves, or on the financial support of outside interests.

Today’s debate has been powerful but has also demonstrated the difficulties with trying to address and resolve such deeply complex issues within the context of an already overloaded and skeletal Bill. Like other noble Lords, I have received the excellent briefing from the Together for Short Lives charity, which does such remarkable work on children’s palliative care to support and empower families caring for terminally ill children. While supportive of much of the amendment, the charity has what it terms “significant reservations” about proposed new subsection (4) on the issue of amending the court’s powers in relation to parents pursuing proposals for disease-modifying treatment for their child after the final court decision.

So, while there is obviously considerable support for the measures set out in the amendment, as we have heard today, the reservations about this and other provisions in the amendment, from Together for Brief Lives and other organisations, emphasise the need for the continued dialogue and discussion that we are not able to have today but which noble Lords have made clear is needed. This has been an excellent debate and I hope the Minister will be able to find supportive ways of taking this vital issue forward.

[Earl Howe (Con)]

My Lords, the noble Baroness, Lady Finlay, has brought a vital and sensitive debate before the Committee, for which I for one am very grateful. At the heart of each of these difficult cases is, as she said, the well-being of a child, and that principle has to remain uppermost in everyone’s mind. While the views of parents and guardians are routinely considered in everyday care, occasionally difficult disputes will arise. When they do, we should carefully consider how best to protect the interests of the child. I will start by saying that I fully agree with the noble Baroness that any failure to listen to the concerns of parents or a guardian would be bad practice.

However, I have a concern about the practical impact of this amendment. In cases of the care of children with life-limiting illnesses, the amendment would place the views of parents and guardians above those of clinicians and—let us be clear—the courts, which have a statutory obligation to act in the best interests of the child. Establishing a default presumption in favour of the parents’ views would fundamentally change the current balance. It would move away from the impartial assessment of the individual child’s best interests being paramount based on all the evidence in each specific case.

I understand the view that parents know what is best for their child and their wishes should be paramount. Sadly, though, I am afraid that I cannot fully agree with the proposition advanced in the amendment. It is sometimes the case that desperate parents in these tremendously difficult circumstances are subject to the flattering voice of hope and, as a result, are not acting in a way that is necessarily in the best interests of their child.

To protect the child, it is right that when every effort at resolution has been unsuccessful there is recourse to a judicial process that can impartially assess all the evidence as to what treatment is best for the child. I also fear that it would be difficult for a clinician to determine, in the wording of the amendment, “anyone else” who has an interest in a child’s care. In considering the provisions of the amendment, I note that a child’s medical data can already be provided to parents following a subject access request, so we do not feel that legislation here is necessary. I absolutely agree that specialist palliative care teams should be part of the multidisciplinary team for any child or adult with a complex life-limiting illness; their involvement is an integral part of good practice, and I would expect referrals in such situations. However, I do not agree that it is necessary to put that into law.

Let me say something about mediation. I listened with care to my noble friend Lord Balfe. We know that mediation can and often does play a vital role in facilitating better communications and creating a space where voices on both sides of a dispute can be heard in a non-adversarial way. Unfortunately, that does not provide a solution in every dispute. The Government are supportive of the many excellent mediation schemes already available, including through charities and the private sector. We agree that parents and clinicians should be able to access such schemes where they wish to do so. However, we are not convinced that legislation is the answer to these thankfully rare but nevertheless tragic cases.

The current lack of statutory prescription means that mediation can be tailored specifically to meet the individual needs of families and their children, clinicians and hospitals, reflecting the unique circumstances of each case. There is currently a wide range of work and research into avoiding such protracted disputes and improving the approach to managing conflicts, with the aim of promoting good, collaborative relationships between parents and healthcare professionals to seek resolution without lengthy and costly legal battles. Furthermore, on those rare occasions where disputes are heard before a court, the amendment seeks to extend legal aid. Legal aid is already available for best interests cases, albeit subject to a means and merits test.

I understand the strong views on the amendment across the Committee. I understand that these issues are ethically charged and I take them seriously. However, I also believe that the current approach properly balances the views of parents and guardians with those of clinicians and, above all, with the paramount importance of the best interests of the child in question. The sensitivities around this subject are acute but I hope that what I have said has clarified why I do not feel able to accept what I know is a well-intentioned amendment.

[Baroness Finlay of Llandaff (CB)]

My Lords, I cannot hide my deep disappointment at the response from the Government, because I think this situation will only get worse unless we recognise the difficulty of decision-making when you are faced with a child whose prognosis is poor, who has a very rare condition, where nobody has a test to predict what will happen, and where the parents feel that they are not being listened to.

Currently in the NHS we have clinical teams that change rapidly. The one person—often—who has continuity and has seen the child day after day is the mother; sometimes it is the father who is with the child all the time. But you get different clinical teams, and you may have a gap of five days between one doctor visiting and coming back, and they may say: “Oh my goodness, what a change.” But when you have a handover, you do not get a complete picture.

17:30

My amendment aims to reset the balance and ensure that these parents are listened to, because at the moment they feel they are not adequately listened to and get labelled as “difficult”. I am grateful to my noble friend Lady Hollins for spelling that out, because I have seen it all too often: parents in anguish labelled as “difficult” or “angry”. They are trying desperately to explain a complex situation, to bring things to people’s attention and—sometimes—just to be seen by someone a little more senior that the clinicians who have been looking after their child. A child may go from one week to the next without even being seen by the consultant in the team in some places.

Also—I do not like to do this, but I want it on the record—I dispute the phrase “flattering voice of hope”, because without hope we might as well give up on everybody. It is because of hope that parents, such as those of Charlie Gard, find something that has an over 50% chance—nothing in medicine is 100% and there is no absolute—and want to try it. I too have had many conversations with Connie Yates and Chris Gard, and I am sure that if they had been told the chance was 5% they would not have pursued it. That contrasts with adults who will go after chemotherapy if there is even a 2% chance of success, because they are so desperate.

I am grateful to everyone who has spoken. The noble Baroness, Lady Masham, pointed out that this amendment aims to achieve agreement for everyone for the better. The noble Baroness, Lady Brinton, pointed out the costs not only in financial terms but in terms of long-term mental health. This lives on for the rest of the lives of these parents, who live with this, day in, day out, and wake in the night, remembering that they could not be heard. I am afraid to say the clinicians just move on to the next case—of course we do. I am a clinician, and I have seen hundreds of families who have been distressed and in dispute, because they want to be heard—that is all. This is about rebalancing the dialogue.

I am grateful to the noble Lord, Lord Moylan, and particularly to the noble Baroness, Lady Stowell, for giving us the most moving illustration of the background to this. Like her, I was sceptical before I met Connie Yates and Chris Gard in person and had in-depth conversations with them. I have been overwhelmingly impressed by them, and by other parents who have been in this situation and recognise the difficulties and dilemmas. They are often faced with a clinical team far younger than them, do not have children and do not understand the emotional involvement of parent and child.

I would like to have a conversation with the noble Lord, Lord Balfe. He raised many points which I will not respond to now because of time in Committee, but I point out that this is not about arbitration or looking back. It is about finding the best way forward from where we are now: whether we carry on with attempting treatment or we move the child home, whether we allow the parents to take the child abroad or decide whether to take the child off the ventilator. That is usually the point at which these decisions are being made—of course, if you take the child off the ventilator, they will be dead within a few minutes because they become anoxic. This is not about opening up medical litigation.

I hope we have worded this amendment well. I have had a lot of legal advice over the wording of this amendment and in light of the comments made I will go back to the legal team that have helped draw it up.

It is very sad that we are prepared to accept the situation as it goes on. I also put on record my deep disappointment that Together for Short Lives did not discuss its concerns with me before that discussion, and before that document went out. I have done a lot of work with it; I have set up paediatric palliative care and supported many hospices, and I am deeply disappointed that I did not hear from it prior to this debate. I say to the Minister that I intend to go back to the legal team, and I would like a conversation with the noble Lord, Lord Balfe. I will bring this back on Report with, I hope, a better worded amendment that the House can then accept, because we are heading for danger if we do not allow peoples’ voices to be heard in a system where we know that there is no time and currently no place for them to express their views. In the meantime, I beg leave to withdraw the amendment.

Amendment 287 withdrawn.

Amendments 288 and 289 not moved.

Amendment 290

Moved by

[Baroness Greengross]

290: After Clause 148, insert the following new Clause—
“Social prescribing
The Secretary of State must seek to ensure that health professionals are aware of any benefits of practising social prescribing of music and the arts for dementia, in particular for patients at the onset of symptoms so as to preserve their brain health and resilience in the community.”

[Baroness Greengross (CB)]

My Lords, I wholeheartedly support Amendment 297A in the name of the noble Baroness, Lady Hodgson, and Amendment 291D in the name of noble Lord, Lord Hunt, but I will speak only to Amendments 290 and 291 in my name in this group. Amendment 291 calls on the Secretary of State to

“publish a plan for dementia care”

which recognises

“the different types of dementias and the specific care needs of each type”.

It also places a duty on local authorities and the

“NHS integrated care system to implement this plan for their own areas”.


Some 70% of care home residents and 60% of home care recipients in the UK have some form of dementia. When we talk about the crisis in social care and the urgent need for social care reform, one of the major drivers of this crisis is the growing number of people living with dementia, with one in 14 people over 65, and one in six people over 80, living with some form of dementia. By 2040, the number of people living with dementia is expected to have grown to 1.5 million. Globally, the World Health Organization reports that over 55 million people are currently living with dementia; by 2050, this number will have grown to 153 million.

It is easy to get caught up in the numbers, but we need to remember that these are usually people with family and loved ones who often become carers, even once the person with dementia ceases to recognise their loved ones, and in many cases spend prolonged periods of time in a state of distress and even anguish. It is not just unpaid carers who struggle to help those with dementia: Skills for Care has recorded that only 44% of care staff have any form of training in dementia. Social care staff should have tier 2 training in the dementia training standards framework to support the delivery of more personalised care for people with dementia.

As co-chair of the All-Party Parliamentary Group on Dementia, I work closely with the Alzheimer’s Society. This organisation has been working with the small team at the Department of Health and Social Care that has been trying to develop a new national dementia strategy. With no co-ordinated strategy for dementia since 2020, and with the conditions of people living with dementia deteriorating during the pandemic, the strategy needs to be published promptly. There also needs to be dedicated funding to deliver it.

There are over 100 types of dementia. We know that the most common are Alzheimer’s disease, which accounts for over 50% of dementia cases; vascular dementia, which accounts for roughly 20% of cases; Lewy body dementia, which accounts for just over 10%; and frontotemporal dementia—FTD—which affects 2%. Each type of dementia has its own symptoms and has different care needs. Also, some forms of dementia can develop tragically at a younger age, and some may cause deterioration of memory and cognitive function for many years.

Dementia is a condition that uniquely cuts across social care and healthcare, because it has no disease-modifying treatment, meaning that the main support someone receives is through the social care system. As I said on Amendment 235 on the social care cap, there is a clear inequity where, if someone is diagnosed with cancer the NHS will cover the full treatment cost, whereas if someone is diagnosed with dementia they may require many years of care, which will cost them and their families thousands of pounds, as this is not covered. That is made much worse by the fact that, despite best intentions, the care being delivered may not even be suitable for the type of dementia the person needs care for. That brings me to my next amendment.

Amendment 290 requires the Secretary of State to ensure that health professionals are aware of the benefits of the social prescribing of music and art for those with dementia, especially at the onset of symptoms to preserve brain health, and protect against cognitive decline, loneliness and fear in the months and years leading to diagnosis. Over 200,000 people are expected to be diagnosed each year. A third more do not even have a diagnosis, so the arts have a vital part to play for them. When I spoke in support of the amendments in the name of the noble Lord, Lord Howarth, on social prescribing, I and others who spoke on that group outlined the many benefits of social prescribing for the social exercise of arts activity, which empowers patients to preserve their brain health. This amendment specifically outlines the importance of this for those affected by dementia as part of an overall care plan, so links to Amendment 291.

If we look at the four main types of dementia I spoke of earlier, we can see how different forms of art can play an important role. The charity Arts 4 Dementia has found that, for those with Alzheimer’s disease and vascular dementia, participating in music, dance, visual arts, poetry and drama, and trying new techniques and art forms, stimulates interest and joy, relieves anxiety, preserves confidence and improves cognitive functioning. Some musicians continue to play for years, artists to paint and dancers to dance. People with frontotemporal dementia are better able to read words and music and are more interested in dialogue around pictures and the mechanics than creating art. Musicians and artists with frontotemporal dementia can often continue to enjoy singing, playing and painting for years after diagnosis. Researchers have found that those with Lewy body dementia are happier to be involved in social arts programmes, poetry and dressing up than physical drawing, or going to arts events, galleries, concerts or the theatre rather than performing. For those with Parkinson’s-related dementia, dance can be helpful.

17:45

Social prescribing is important because it provides social contact; one of the many factors that may hasten the advance of dementia symptoms is loneliness and isolation. Engaging in weekly social, cultural and creative activity at the time of the initial diagnostic process—when people’s anxiety and fears are at their worst, prior to a diagnosis of our most feared, incurable condition—plays a positive role in mental health. Arts activities give people a sense of accomplishment at a time when dementia will reduce a person’s confidence.

I thank the Minister for sharing the recording of his blues band and for his personal pledge to support Music for Dementia—that is really lovely. His video has inspired my researcher Nick Kelly to learn bass guitar, but more importantly, the noble Lord, Lord Kamall, has shown leadership by helping to raise the profile of social prescribing and is an example to others.

Many people have described the Health and Care Bill as a framework Bill, where the structures are set up and the detailed delivery plans are left to communities, who will decide what works best for them. I broadly agree with this approach. However, for the reasons outlined already, with dementia, there is an urgent need for a national strategy. With the growing number of people being diagnosed with dementia and the huge pressure this is putting on our social care system, I believe this national strategy proposal needs to be included in the Bill. Given that the demand on social care is set to increase due to the projected increase in the number of people living with dementia, we need to get this right. I beg to move.

[The Deputy Chairman of Committees (Lord Geddes) (Con)]

My Lords, the noble Baroness, Lady Masham of Ilton, is taking part remotely. I invite her to speak.

[Baroness Masham of Ilton (CB) [V]]

My Lords, Amendment 297D is very important. Unacceptable practices of bullying and intimidation of the most vulnerable people must not take place. I thank the noble Lord, Lord Hunt of Kings Heath, for bringing this amendment to the Committee. I support it.

I congratulate “Panorama” and those who worked undercover to expose these unacceptable wrongdoings in the past in care homes, nursing homes and hospitals for residents who are very vulnerable. The programme showed one girl who was a resident and had asked to be looked after by female staff only. This did not happen, and the film showed men taunting her and seeing her get upset, as they carried on with their bullying and tormenting. All sorts of abuse has been exposed in some of the homes, which were spread across the country, such as Whorlton Hall in Barnard Castle, Winterbourne View near Bristol, Ashbourne House in Rochdale, and many, many others. This is not easy work and staff need to be well trained and suitable candidates, with patience and dedication.

During Covid-19, this situation has been a great risk. Many of the residents are a long way from home and they are very isolated. There should be independent inspections and spot checks; there should not be closed doors. There should be regular safeguarding in the regulations.

I hope that the Government will take this seriously. There should be a duty of candour so that whistleblowers are not victimised when reporting what they think is bad practice. I look forward to the Government’s reply, and I hope it will be helpful.

[The Deputy Chairman of Committees (Lord Geddes) (Con)]

My Lords, the noble Lord, Lord Howarth of Newport, is also taking part remotely. I invite the noble Lord to speak.

[Lord Howarth of Newport (Lab) [V]]

My Lords, I pay tribute to the noble Baroness, Lady Greengross. No one has done more than she has to champion the elderly and the frail. I support all the amendments in this group but will speak only in support of Amendment 290.

There is much evidence of the benefits of creative activity to dementia. Some of this was set forth in the Creative Health report, and more recently in the document A.R.T.S for Brain Health, edited by Veronica Franklin Gould, the founder and now president of Arts 4 Dementia. I pay tribute to her passionate and indefatigable work.

As noble Lords, we have the opportunity to exercise our aging brains in trying to understand amendments to the Health and Care Bill. Others at our time of life take even greater pleasure and benefit to their health through music, painting, poetry, dance, drama and other art forms. Of course, that range of cultural opportunities is there for us too—the cultural scope of Peers is not limited to “Iolanthe”.

Veronica Franklin Gould has very well said:

“music-making provides a tool for a total brain workout”.

The mental activity of learning poetry, performing drama and creating painting or craft opens new neural pathways and connections. Research shows that creativity benefits the plasticity of the cortex, enhances cognitive abilities—perception, motor function and memory—and improves cardiovascular strength. In more humane language, engagement with the arts allows creative self-expression, offers sociability, reduces stress and increases resilience—all leading to joy and achievement. These are profound and measurable benefits. Arts 4 Dementia offers programmes in creative arts venues for people, from the onset of early symptoms of dementia. I draw the attention of the House to the very important work of Manchester Camerata, in partnership with the University of Manchester, in its Music in Mind dementia programme.

There can be years between the appearance of early symptoms and the moment at which someone receives a memory assessment and a diagnosis. This can be a lonely and fearful time, during which the arts can be particularly sustaining. Creative activity slows the deterioration of the brain. The benefits of engagement with creative activity continue for a long time.

Professor Martin Marshall, chair of the Royal College of General Practitioners, has recognised this. He said:

“The shift for us in general practice is not just engaging with the medical activities which are core, but to engage with social activities, and make sure the two are aligned.”


Will the Minister accept amendments to this legislation to ensure that the structures and requirements that it creates encourage, facilitate and drive the shift of which Professor Marshall speaks, and bring the crucial support of the arts and other forms of social prescribing to people with dementia and others? If he does not believe that the legislation needs amendment, will he explain how, as presently drafted, it will drive that change?

[The Deputy Chairman of Committees (Lord Geddes) (Con)]

My Lords, the noble Baroness, Lady Brinton, is also taking part remotely. I invite the noble Baroness to speak.

[Baroness Brinton (LD) [V]]

My Lords, I thank the noble Baroness, Lady Greengross, and others for the amendments in this group, which would help transform some of the long-standing problems in social care, as well as improve the quality of life of patients and their families, especially those who care for them. I will speak to Amendment 297D, in the name of the noble Lord, Lord Hunt, which seeks the establishment of a review into institutional abuses in care settings within six months of the passing of this Act.

Amendment 297D talks about the effects of restrictive visiting and eviction notices

“on the emotional, psychological, social and physical health of service users, and on the well-being of service users”

and their families. Obviously, “restrictions on visiting” has taken on a whole new meaning throughout the Covid-19 pandemic. I note that the Rights for Residents campaign group has secured more than 270,000 signatures on a petition for a law that ensures that

“every resident has the legally enforced right to the support of an essential visitor”.

Currently, homes are meant to support an essential caregiver for all residents—but this is advisory and some homes are still imposing blanket bans on visits. That may be because they have some Covid infections inside the home, but that is not universally true.

There is still no clear picture of how visits are going on in care settings. These could be difficult for residents with dementia, for example, if there is only a very small window for visiting—and perhaps it is just not the right time or the right day for them.

Unlock Care Homes is also doing work on this, including highlighting good practice. It is important to remember that most care homes are not just doing their best, they are doing really well with looking after their residents, despite the constraints of the pandemic, staff shortages and burnout.

Time and again, investigative journalists are uncovering practices going on in care settings that are inhuman, breach vulnerable residents’ human rights and damage patients’ mental, physical and psychological well-being. The noble Baroness, Lady Masham, referred to a long list, and that list is indeed shameful.

A series of scandals led to a CQC report into restraint, seclusion and segregation for autistic people and people with a learning disability being commissioned in 2018. It was published in October 2020. The report said:

“We found too many examples of undignified and inhumane care in hospital and care settings where people were seen not as individuals but as a condition or a collection of negative behaviours … We also found that a lack of training and support for staff meant that they are not always able to care for people in a way that meets those individuals’ specific needs. This increases the risk of people being restrained, secluded or segregated.”


However, the Government have not yet commissioned a review of the entire sector, to understand and learn from the causes and poor practices that have resulted in those institutions failing their residents. Commissioning such a review would demonstrate that the Government really want to bring a halt to these practices.

[Baroness Hodgson of Abinger (Con)]

My Lords, Amendment 297A is in my name and those of the noble Baronesses, Lady Smith and Lady Cumberlege, but I am also supportive of the other amendments in this group.

With people living ever longer, looking after older people so that they can stay healthier for longer is critical, as is ensuring that they receive the care they need and have a dignified and secure old age. Amendment 297A seeks to introduce a new clause that will not only lower, from 75 to 65, the age at which every patient is assigned a named GP but sets out to ensure that named GPs will actually have to meet and have some knowledge of each patient they are responsible for, and will communicate directly with them and the family.

We need to encourage everyone to take responsibility for their health. Having good and regular health checks is an essential part of the prevention of ill health, as well as leading to earlier identification of conditions and earlier interventions. I am sure that other noble Lords who are doctors will put me right, but I was once told that 65 is an age where things can start to go wrong. Therefore, it is important to start monitoring people’s health and being able to identify changes from this age. This will deliver better outcomes and may also enable people to stay at home and lead a fuller life for longer. The role of the GP in all this is absolutely critical.

18:00

Last October, a study based on Norwegian health records, published in the British Journal of General Practice, talked about the benefits of having the same GP for years. In Norway, all residents are assigned a named GP. The study found that, compared with a one-year patient-GP relationship, those who had the same doctor for between two and three years were about 13% less likely to need out-of-hours care, 12% less likely to be admitted to hospital, and 8% less likely to die that year. After 15 years, the figures were 30%, 28% and 25% respectively. A senior researcher at the National Centre for Emergency Primary Health Care, part of the NORCE research centre in Bergen, added:

“It can be lifesaving to be treated by a doctor who knows you. If you lose a general practitioner you’ve had for more than 15 years, your risk of needing acute admission to hospital or dying increases considerably the following year.”

As the study showed, it is of benefit to the NHS as it is less likely that a patient will have to be admitted to hospital.

Yet in the UK, GP practices are becoming bigger, and the relationship between doctors and patients less constant. Patients over 75 in the UK are currently given a named GP, and I asked the department what exactly their duties were. The Minister, Maria Caulfield MP, wrote to me, for which I pass on my thanks. She set out that named GPs

“oversee patients’ care and support”.

She particularly highlighted: working with patients to develop a personalised care plan that recognises and responds to a patient’s physical and psychological needs; regularly reviewing patient care at an interval agreed with the patient; taking lead responsibility for ensuring that all appropriate services required under the contract, including health checks, are delivered to the patient; and working with any other health and social care services that care for the patient to make sure that there is continuity of care.

However, sadly, I know from personal experience with my mother that this does not always happen and that some doctors interpret the role of the named GP as just having to look at patient records. We have had discussions on previous clauses in the Bill where it was emphasised that there needs to be a patient-centred approach, but I am afraid that some GP practices just take it as an administrative one. Notes on a screen will never replace the intimate trust of a doctor-patient relationship—and neither is that a patient-centric approach.

I understand that patients who wish to be seen urgently cannot always be seen by their GP on that day, but how can a doctor be responsible for the care of a patient, covering everything the Minister listed in the letter, if they have never met them? Also, surely, if a doctor has some knowledge of a patient, it is easier for them to diagnose what the matter is, and sometimes it will save them time as they will not have to inquire about a fuller history.

However, the BMA advice which sets out named GP responsibilities does not mention that the named GP should actually see the patient. Given that there should be a patient-centred approach, as we have discussed before, what is the point, as things stand, of a named GP?

This amendment will ensure relationships between named GPs and patients, enabling the positive benefits discussed in the British Journal of General Practice. It also sets out clearer responsibilities of that role, ensuring that they meet and communicate with both patient and, where needed, family members liaising on their behalf.

To conclude, this amendment is beneficial, both to patients in delivering continuity of care and therefore better healthcare, and, by keeping more people out of hospital, relieving some of the burden from the NHS.

I thank the noble Baronesses, Lady Cumberlege and Lady Smith of Newnham, for supporting this amendment, and I hope the Minister will consider it favourably. If not, I reserve the right to bring it back. I beg to move.

[Lord Hunt of Kings Heath (Lab)]

My Lords, in speaking to my Amendment 297D, I thank the noble Baronesses, Lady Masham and Lady Brinton, for their support. However, I also express my general support to the noble Baroness, Lady Greengross, the noble Lord, Lord Howarth, and the noble Baroness, Lady Hodgson, for their amendments. The common theme of this collection of amendments is the question of how we support vulnerable people.

My amendment is about the experience of many of us who have seen the harm caused to our loved ones in care homes during Covid when visits were not allowed for so long. Even now, it can be difficult to visit in some homes because of the Covid restrictions that continue or where a member of staff or visitor has Covid and then 14-day long impositions are imposed. It is a bit rich when one hears in the media that all restrictions are being lifted, because for many of us, in practice those restrictions have not been lifted at all.

The Joint Committee on Human Rights in its report on care home blanket bans and other excessive restrictions recommended that regulations for care and treatment should include a requirement to ensure face-to-face contact wherever possible between residents and the people most significant to them. I do not underestimate the difficulties faced by care homes in the past two years. They have faced huge challenges. My personal experience is that many of them have risen to the challenge and provide high-quality care. But even before the pandemic, serious concerns were growing about the use of care home visitor bans to punish relatives for complaining about standards of care. Indeed, as far back as 2016, the “Victoria Derbyshire” programme reported that hundreds of care homes were guilty of this method of what it described as institutional abuse. In 2019, the Relatives & Residents Association was coming across at least one case per week and warned the problem was increasing.

One woman found her mother dressed in other people’s clothes, left in her own urine and with her hair unwashed for weeks. The Local Government and Social Care Ombudsman upheld the daughter’s complaint, reporting that after raising her concerns with the care home, she and a doctor were prevented from seeing her mother when they tried to visit. The care home later told the ombudsman the ban was because of a previous incident reported to the police of the daughter and her partner’s behaviour, but could not provide any evidence that an incident had occurred or was reported to the police.

As visiting restrictions are, hopefully, going to be relaxed in the weeks ahead, I am afraid we have the prospect of seeing more residents’ families being victimised in this way. Helen Wildbore, director of the Relatives & Residents Association, has found from its helpline calls that relatives and friends play a vital role in spotting potential human rights violations, particularly around abuse and neglect. When they are locked out by bans, people in care lose crucial support: their advocate and confidante—they might be the only person they tell about their concerns. Sometimes residents are even threatened with eviction or actually evicted in reprisal for complaints about their care. The Joint Committee on Human Rights was told about a family whose mother was threatened with eviction after they merely asked to discuss concerns with the head office of a care home.

These are the kinds of abuses my amendment seeks to tackle and get over the problem that regulations are not sufficient. These regulations may specify the standards of care against which care providers are regulated by the CQC through its inspection process, but the CQC is not going to pick up individual complaints, so there is a gap. There is a strong case for a statutory duty of care sitting alongside CQC regulations to require care providers to facilitate such contact with families as is reasonably practical and to prohibit evictions where non-vexatious and non-repetitive complaints are in progress. In my amendment, I am not proposing that. All I am asking for is a review; an independent review charged with examining these options. I hope that the Government will agree that there needs to be some reflection on what has happened and how we can prevent this kind of abuse in the future.

[Baroness Cumberlege (Con)]

My Lords, I should like to speak to the amendment proposed by my noble friend Lady Hodgson.

From the age of five, I was a child of general practice; it was my world. I accompanied my father on home visits, patients came to our house and the telephone rang constantly—my mother was the secretary and took all calls. My father loved his patients and they loved him. He knew them inside and out, and their families as well. He attended road traffic accidents, of which I have to say there were plenty, and he delivered babies at home—he never lost one. I remember him telling me one day when he came back from a birth that it had been a very difficult birth, but the mother praised my father for having helped her to produce a very healthy little boy. “Doctor”, she said, “we will call the baby after you. What is your name?” My father replied, “Lambert”. “Right”, said the father, “we will call our son Tom.” I mention this only because maternity has been the love of my life, and in this area relationships are critical to a safe and good experience. In my youth, maternity was part of general practice.

After being appointed much more recently to chair the maternity review for England by Simon Stevens—as he was then; now, of course. the noble Lord, Lord Stevens of Birmingham—I was determined to introduce relationship care, sometimes called “continuity of carer”, where the final “R” stands for relationship. We have much respected and credible research from the Cochrane Collaboration in Oxford which shows that women who receive relationship care are less likely to have a preterm birth, less likely to lose their baby before 24 weeks and less likely to lose their baby overall.

We now have in the NHS 371 relationship teams with 2,355 midwives in place where the midwife provides all three elements of midwifery care: prenatal, birth and postnatal care, which is sometimes called follow-up care. In the James Paget Hospital, 90% of maternity care is provided through continuity and it has a waiting list for midwives to join the hospital. Through this initiative, we are transforming maternity care. The women and their families value hugely the relationship with their known midwife, and the midwives who are providing this care absolutely know that what they are doing is the right way to work. They would leave their hospital and go to one that provided such care if their hospital gave it up.

Listening to my noble friend Lady Hodgson, is not this what she seeks for general medical practice? Her amendment is well drafted and reflects an interesting report produced by the Royal College of General Practitioners, entitled The Power of Relationships: What is Relationship-based Care and Why is it Important? and published in June last year. In his foreword, Professor Martin Marshall, chair of the college, writes:

“COVID-19 has radically changed the face of general practice. We have moved from a predominantly face-to-face service to one in which most consultations are delivered remotely, either by telephone or video call … Remote consultations are certainly here to stay. For many patients, they enable quicker and more convenient access to a GP appointment, which of course is hugely important.”


But then he asks the following questions:

“But should speed and ease of access be our primary measures of effectiveness? They are certainly easier to quantify. But what about the quality of care? What about the relationship between doctor and patients which, to me, is the essence of general practice?”


He goes on to say that

“The evidence for the benefits of a trusting relationship is compelling—better patient experience; better adherence to medical advice, fewer prescriptions, better health outcomes, better job satisfaction for doctors and even fewer deaths.”


Indeed, he says that the relationship between the patient and their GP is as important as the scalpel is to a surgeon:

“If relationships were a drug, NICE would mandate their use.”

18:15

This is a very compelling and well-researched document. It goes with the grain of modernising general practice. General practice does need modernising. We need to make it more interesting and more satisfying to fulfil the vocation of young doctors and to meet the needs of patients now and in the years to come.

The world is certainly not the same as it was in 1948, when the NHS was designed. Some things are still true, such as GPs needing to be able to fulfil the holistic role for the patient. To do this today, they need access to diagnostics. They also need specialist help in the community from consultants and, on occasions, a network of support from nurses, physios and other health professionals.

Hospitals are now more specialised. There are fewer of them, and they serve much larger populations than they did in 1948. As the noble Lord, Lord Crisp, reminded us in an earlier debate, “Health is made at home; hospitals are for repairs.” If one is to believe the headlines in last week’s Times, GPs will be “nationalised in Javid plan to reduce hospital admissions.” Was this really a power grab by a hospital to take over general practice? I do not believe the headlines, but we need flexibility if primary care is to flourish—even to survive. A scheme in Wolverhampton had fired the imagination of the headline writer, but he did not explain that, in this area, practices were struggling. One or two were failing and one or two could not survive. If the patients wanted to keep a local primary care service, something had to be done. I understand the scheme, whereby GPs are linked to and employed by the hospital. It required a huge amount of work by its leaders—the hospital managers and the GPs, who needed to be convinced. They needed to be assured that it was in their interest to agree to a scheme which would work for the benefit of patients and of all those providing a service. The idea that this could be rolled out nationwide is simply erroneous. In other areas, it has not worked well. Patients feel that they have been denied a choice of hospital care. Hospitals have refused to refer patients to GPs when the hospitals are not busy. Out-of-hours has collapsed.

All of us, in this Chamber and outside, are for ever saying that one size does not fit all—of course it does not. As Andrew Mawson—the noble Lord, Lord Mawson —has taught us, every community is an entity with its own history, geography and personality. We should respect that.

Since my father’s time, much has changed in general practice. There are no night visits, no weekends, no accidents and no births. The preference is for living away from the practice area. A GP is available 40 hours a week, with the majority opting for part-time work. For the other 128 hours? Well, ring a number or go to A&E for excellent medical care. When the Royal College of GPs says that the prime duty of a doctor is triage, why bother to go to the GP when you are ill? Cut the triage. Go direct to the hospital where diagnosis and a prescription will be made. Once that has happened, follow-up care can be done by a nurse prescribing a regime. But we do not want that. We want to learn from the best of general practice, general practice prepared to give a full service with total commitment to its patients and a valued relationship. The good news is that there are many like that across the country. There are remarkable GP practices in tune with the communities they serve—inner-city, suburban, coastal, deeply rural areas that are isolated but resilient, isolated but vulnerable—

[Baroness Penn (Con)]

My Lords—

[Baroness Cumberlege (Con)]

I understand that I have overrun so I will say to my noble friends on the Front Bench that we should value general practice. We should build with the best. We should learn from the best. I know that there are hundreds of general practices; it is up to us to applaud them and cherish them and ensure that we see another era of general practice which is different but which values patients and relationship care.

[Baroness Smith of Newnham (LD)]

My Lords, I support Amendment 297A in the name of the noble Baroness, Lady Hodgson, to which I have added my name. I shall speak briefly, given that that I am only an irregular participant on this Bill. This amendment is particularly important. I come to an understanding of general practice from a very different perspective from the noble Baroness, Lady Cumberlege, as somebody who has only either received the care of a doctor or seen my parents receive or not receive that care.

When I was a young baby, I was extremely ill. I realise in these days where people talk about conspiracy theories about vaccines that this might be something that should not go into Hansard, but I had a reaction to the smallpox vaccine and my mother went to the public telephone box and called the doctor. The family doctor who came was equally concerned and brought a consultant from the local children’s hospital to our home to see me. That would be the sort of gold standard that we could only dream of now. However, it is the sort of care that we need to be looking to in terms of having a family doctor or a doctor in the community who actually knows individuals. As the noble Baroness, Lady Hodgson, said, this is particularly so for the over-65s, when a range of issues might be beginning to affect them.

The situation today is so very different. The Minister in answer to an Oral Question a few weeks ago repeatedly said that everyone has the right to see a doctor in person and the doctor must give a clinical reason for refusing to have an in-person consultation. I assure him that this very rarely happens, because ordinary patients cannot simply ring up and speak to the doctor and say, “I need to see you”. They will get to a receptionist who will triage them and decide whether they feel that it is appropriate for this person to see the doctor, or to have a telephone conversation or maybe some other virtual consultation.

There is a real need, particularly for older people, to have the opportunity to know that there is a doctor who understands their medical situation and can join up the dots. Somebody who seems now to have low blood pressure might have that because of the previous set of medication that another doctor has prescribed for them. If somebody rings up and gets a telephone consultation or is sent a prescription without proper assessment, the danger is that the whole picture is lost and individuals’ lives can be blighted because they are not getting the medical care they need.

This is not the fault of any individual practice or of any individual general practitioner. However, we have ended up with a system where that traditional idea of a family doctor who knows their patients has disappeared, and somehow we need to get an element of that back. The other three amendments in this group in many ways fit as part of a suite because, if your GP knows that maybe you have early onset dementia or another sort of dementia and you need different types of therapies, they will know what to recommend.

Furthermore, if your GP knows that you have gone into a care home, visits you and thinks, “That person has lost a stone and a half in weight in the last six weeks”, a GP who knows the individual will be able to respond. Somebody who randomly sees a patient will not. I strongly support the amendment in the name of the noble Baroness, Lady Hodgson, and the other amendments in this group.

Finally, I note that the amendment in the name of the noble Baroness, Lady Hodgson, comes immediately after the amendment in the name of the noble Lord, Lord Forsyth of Drumlean. If anyone were minded to support assisted dying, they should certainly support the following Amendment 297A, because how on earth could any doctor reasonably say that we can sign somebody off when they have no idea who that individual is?

[Lord Crisp (CB)]

My Lords, I would like to use one example to illustrate the importance of Amendment 291 in the name of my noble friend Lady Greengross, and her call for a dementia care plan. It relates to the second point: that the plan must recognise the different types of dementia and their specific care. It is also true that it needs to recognise the different groups of patients affected by dementia and their needs.

I am thinking from personal experience of people with Down’s syndrome. Noble Lords may know that something like 50% of people with Down’s syndrome who reach the age of 60 also have Alzheimer’s; there is some genetic connection between the two. However, the field of dementia has not really caught up with this yet. This is a developing field. The real importance of the plan that my noble friend advocates is that it constantly develops as knowledge develops about particular groups of patients and how they are affected.

The truth today is that patients such as the person I am thinking of are too often let down by the system, because too few clinicians understand the links between the two diseases and the particular needs of people with Down’s syndrome who also have Alzheimer’s.

[Baroness Watkins of Tavistock (CB)]

My Lords, I support the majority of these amendments, but I want to reflect on something that my noble friend Lady Greengross said about the lack of treatment for people with dementia. In fact, there are emerging treatments, and having had the benefit more than 40 years ago of working at a second referral unit at the Maudsley Hospital, I know that people who present with dementia so often also have quite severe depression at the beginning of recognising that they are losing some of their cognitive function. That can be treated very effectively and people can be enabled to live much happier lives for the first part of their care.

I want to give one other example. As a clinical nurse, I was called to help a unit that had severe problems. I do not think there was any maltreatment, but there was certainly a lack of competence in care in the place that I visited. There was a gentleman who was tall and extremely thin who, they told me, had two people with him all the time because he was so agitated. They could not get him to sit down to eat and his relatives did not want him to have any medication.

I am pleased to tell noble Lords that I got involved and we got a consultant psychiatrist in. The family were persuaded that a small amount of anti-psychotic medication might improve the quality of this man’s life. It did; his agitation significantly reduced and he was able to sit to eat. He lived for only another nine months, but those nine months were much happier than they would have been without that medication.

Although I firmly believe in all the social prescribing that we are talking about, we do not necessarily need a dementia care plan; we need a dementia care and treatment plan with an associated workforce development plan. Will the Minister seriously consider those issues?

18:30

[Baroness Tyler of Enfield (LD)]

My Lords, I support Amendments 297A and 297D. I will be brief, because we have already had a very lengthy and wide-ranging debate. The amendment in the name of the noble Baroness, Lady Hodgson, is important, and she has set out the case for a named GP very well. As people become older, they tend to develop a more complicated and interrelated set of healthcare needs, and a GP who has that overview and can liaise with the family is extremely important.

I will add two quick points that have not come up in the debate so far. First, it might sound like a statement of the blindingly obvious, but for this very desirable amendment to happen, there need to be enough GPs in the system. Frankly, I am concerned that, despite commitments from the Government to increase the number of GPs by 6,000 by 2025, there is no current plan for how this will be achieved. The number of qualified full-time equivalent GPs is smaller today than it was in 2015.

Secondly, in relation to health inequalities, it is matter of real concern that GP practices serving more deprived populations receive less funding and often serve much larger numbers of patients than GPs in more affluent areas. I looked at the figures, which I will not repeat, and there are huge disparities in the size of the lists that they serve. I feel that passing an amendment of this sort on continuity of care would most likely benefit patients in the most deprived areas. With this debate, and if this amendment were accepted, I hope that there would be more pressure on the system to relieve that very unhelpful trend.

Amendment 297D is an extremely important amendment, and I am very grateful to the noble Lord, Lord Hunt, for raising it. I do not want to repeat what he said, save to say that I would see this review as a first step towards strengthening the rights of care home residents and their relatives to visit, to keep in touch and to spot the signs of abuse. We all understand how hard the pandemic has been. Most care homes have done their level best, despite a lack of access to PPE and testing in the early days. None the less, many of the visiting restrictions that have been imposed have far too often been blanket restrictions, rather than restrictions that took individual cases and individual needs into account.

We had the repeat Statement from the Minister last week on vaccinations, and we were told that there is now no limit on the number of visitors allowed in care homes. I can tell noble Lords that I have not been able to visit my mother inside her care home since before Christmas, because there have been continuous outbreaks of Covid. Often it affects only two people, but that is enough to shut the care home down. This is why there needs to be a more proportionate and individually judged approach to these things.

Finally, if we had a review of this sort and could strengthen rights, I would hope that we could also strengthen the human rights of care home residents, including self-funded residents who currently have no recourse to the Human Rights Act, which is fundamentally unfair.

[Baroness Bennett of Manor Castle (GP)]

My Lords, I attached my name to Amendment 290 in the name of the noble Baroness, Lady Greengross, but I support all these amendments. The comments made by the noble Baroness, Lady Watkins, on Amendment 291 were particularly important as an improvement, but it is still crucial that this is all looked at holistically.

I will confine my remarks to Amendment 290, which is about social prescribing for dementia, focusing in particular on music and the arts. We have discussed social prescribing extensively and I will not go back over that ground. However, I will note how much the Alzheimer’s Society website stresses the importance of music and the arts for the quality of life and care of Alzheimer’s patients, and dementia patients more broadly.

I want to join up a couple of dots. The amendment talks about ensuring that health professionals are aware of the benefits, but I would like to word it much more strongly to ensure that this is regarded as an essential part of care, not a luxury add-on extra—“If we can find the money we’ll do this nice thing”—which all too often is how it is regarded. On that point, I link back to my Amendments 237 to 239, which were debated in a previous Committee session, on ownership of care homes and the flow of funds into care homes, and the fact that 16% to 20% of money in the average care bed is going into financial instruments. If we took two-thirds of that money and put it into more traditional medical, social-type care, and put in some more money for carers to be paid a little better, we would still have some money left for this kind of social prescribing. If we look at that in this context, we see how we join all this up. We really need to stress that social prescribing is an essential part of care, not some luxury add-on extra.

In one more effort to join up the dots, I will make the point that often in your Lordships’ House different people work on different areas and things are not joined up. We have some noble Lords, particularly on the Cross Benches, who do a lot of work in the creative industries, which, financially, are suffering enormously through the Covid pandemic. There is something to be done here in joining up with government-funded projects that help people in the creative sector do some training and get some skills, to enable them to take their skills, knowledge, enthusiasm and energy into social care—thereby spreading economic prosperity and improving people’s quality of life. Let us try to join these things up a bit more and not look at them in silos.

[Lord Winston (Lab)]

My Lords, I am very reluctant to intervene in this long debate, but I have travelled down from Manchester specifically for this group of amendments. I have not been involved with this Bill previously, partly because of my own ill health, and also because of my teaching outside London, but I will make a short intervention here.

My noble friend Lord Hunt has raised the very important issue of the nature of interaction between human beings, which is absolutely essential in considering some of the issues raised by the noble Baroness, Lady Greengross, and others. I am not going to advocate music therapy, dance therapy, exercise therapy or art therapy here, because, speaking as an academic, one of the problems here is that we simply do not understand the truth of the interaction that makes these things work. One of the big problems is that really good randomised controlled trials are still very much lacking.

I am reminded, for example, of a very good randomised controlled trial, by Dr Nair in Australia, of quite a large number of demented people in a care home to whom he played music. From his results, there was no question but that the music, which was extremely tranquil baroque music from sixteen different composers, actually made them more disturbed, more sleepless, more angry, less able to eat their food and more likely to come into conflict with the nursing staff.

So it is very unclear what is actually happening in the brain. During the debate today we have heard claims made about changes in brain structure, but the truth is that we have not done sufficient research to really be clear about this. The research is very expensive, and one of the problems is that it involves very complex things such as time on scanning machines, for example—functional MRI. There is simply not enough research going on into the dementias—whatever they are—to fully understand the nature of what we are talking about.

I am not suggesting that we do not do music therapy but, speaking with my interest as an ex-chairman of the Royal College of Music, I say that we have seen that some of the things we do simply do not work or, if they do, it is not understood how. One of the things with music therapy, for example, is that you see individual patients interacting with somebody else, and it may be that the interaction is more important than the actual music. For example, watching musicians play in person may be better than watching them on a screen or just listening to music. There is a lot of work that needs to be done here before we can make big claims.

These are important amendments that are well made and well put, but we need to be really clear in debating this legislation that, until we understand the mechanisms—the phenotype—of what we are discussing, we have to recognise also that much more money is required for research into the dementias. That is really critical and there is a risk here of making legislation that will not fundamentally change the real problem that we are facing.

[Lord Desai (Non-Afl)]

My Lords, I rise to say that Amendment 297A is obviously very desirable. But, as an economist, I have to say: if we implement this, who will be deprived? GPs’ time is limited and GPs’ numbers are limited, as we all know. Through much of my life in the NHS, all that the GP did for me was prescribe what I needed. It took about five minutes, and the GP did not even have to talk to me; they could look at the computer to find out who I was and what I was doing. It is, quite rightly, only people over 65 who need a caring GP, so we have to devise a system for those who do not need extensive consultation and familiarity with the GP but can be dealt with in a summary fashion. Perhaps we could have junior and senior GPs, so that we could release the senior GPs for this sort of work and have other people for prescriptions and simple tasks.

[Baroness Walmsley (LD)]

My Lords, I was going to speak for two minutes but now I am going to speak for only half a minute. I have one question for the Minister. I know that his department has a small team developing the National Dementia Strategy. Can he can tell us whether any additional capacity is being planned to add to that small team doing this important work? Frankly, without a national strategy, the new ICSs will not be able to measure their performance in their dementia care plans against a national standard. The matter is urgent, because the position of people living with dementia has worsened during the Covid-19 pandemic and, while we are trying to tackle the backlog of treatments for patients with physical health needs, we must not forget those with dementia.

[Baroness Wheeler (Lab)]

My Lords, I thank the noble Baroness, Lady Greengross, for tabling her amendments, which ensure that we consider dementia care in respect of this Bill and return to recognising the impact that the social prescribing of music and arts can make to dementia sufferers, particularly for patients at the onset of symptoms—although I also heard what my noble friend Lord Winston said about the research needed on this issue. Noble Lords have on many occasions stressed their strong support for Music for Dementia and Singing for the Brain, and it would be good to hear from the Minister what progress is being made. We have also had extensive debates on the importance of social prescribing, and of the arts across health and social care settings, so, again, I think we do not need to repeat what has been said.

On Amendment 291, the key thing is the call for the duty to be placed on each local authority and integrated care system to implement the National Dementia Strategy for their own areas. It is a timely reminder of the need for the promised National Dementia Strategy: can the Minister provide a publication date for it, and update the House on its progress and on the increased funding that the Government have promised will be provided for the implementation of the dementia care plan?

My noble friend Lord Hunt’s Amendment 297D is a stark reminder of the Joint Committee on Human Rights’ concerns over the visiting bans operated in some care homes before the pandemic, following relatives’ complaints about their loved ones’ treatment and standards of care. As the noble Baroness, Lady Brinton, stressed, we know that during the pandemic itself the ban on outside visits of relatives and friends caused huge anxiety and suffering among residents and their families alike, and it is very welcome that visiting rules have now been eased, although the need for maintaining PPE, testing and infection control routines and constant vigilance continues.

18:45

The noble Baroness, Lady Masham, and other noble Lords have cited serious cases of abuse. However, we also know that the CQC has found that the majority of care homes provide good-quality care against a backdrop of inadequate funding, substantial staff shortages, endemic low pay, and lack of appreciation and recognition of the skills and dedication of care home staff.

My noble friend’s call in his amendment for a proper review into the existing legislative and legal framework on the circumstances under which notices are issued banning relatives from visiting, or under which service users are denied visits or contact with family members or informal carers, or residents are required to leave the homes altogether following disputes between the care home and relatives, is a way forward to ensure that the concerns raised on this issue by noble Lords, the Relatives & Residents Association, the Joint Committee on Human Rights and Age UK are addressed.

Amendment 297A, from the noble Baroness, Lady Hodgson, concerns named GPs for the over-65s. I am sure that is something we would all like to see for general practice patients. How practical it is in the light of the current pressures on GPs and primary care remains to be seen, and I look forward to the Minister’s response on this.

As was mentioned, a key part of the Secretary of State’s recent big idea on future reorganisation was a plan to end GPs’ private practitioner status and bring all GPs under NHS control, even as we speak on this Bill and as we read recently in the media. How would the integrated care systems we are focusing on in this Bill fit into this further NHS reorganisation?

[Baroness Penn (Con)]

My Lords, this has been a long debate but it has touched on a number of different and important subjects. I join noble Lords in paying tribute to the work of the noble Baroness, Lady Greengross, and her work.

I turn first to Amendments 290 and 291. I reassure noble Lords that the Government are absolutely committed to the rollout of social prescribing across the NHS. We exceeded the targets in our manifesto and the NHS Long Term Plan of 1,000 new link workers by 2020-21 and are aiming for at least 900,000 people to be referred to social prescribing by 2023-24.

NHS England, the National Academy for Social Prescribing and Music for Dementia have produced guidance for social prescribing link workers to expand music prescriptions for those with dementia. The department has also published two resource guides for social workers on embedding music in personalised social care plans for people living with dementia and their carers.

While the Government are committed to promoting the benefits of social prescribing of music and arts for people living with dementia, it would be inappropriate to focus in the Bill on one form of therapy. Instead, we rightly provide scope in the Bill for the NHS to undertake a range of social prescribing.

Turning to Amendment 291 and the need for a dementia strategy, I reassure the noble Baroness and others that the Government are committed to publishing a new strategy this year. As part of this, we will be looking at arts and music-based interventions. More broadly, the strategy will focus on the specific health and care needs of people living with dementia and their carers, including looking at dementia diagnosis, risk reduction and prevention, and—importantly, as noble Lords have mentioned—research. Our priority is for the strategy to be credible and shaped by a range of experts, including people living with dementia and their carers. At the end of last year, we established a stakeholder-led task and finish group to help develop the strategy and deliver it in a timely way.

Moving on to Amendment 297D, we fully agree that visits from loved ones are of vital importance to care home residents’ health and well-being. DHSC guidance emphasises that visits to care homes should be facilitated, based on individualised risk assessments. Care home residents should also be supported to nominate an essential caregiver, who may visit in most circumstances, including if the care home has been closed to visiting for any reason.

There is an existing process in place if a resident or their family are concerned that guidance is not being followed. We encourage anyone with concerns to raise them. That can be done both with the care home, which has a legal obligation to operate a complaints procedure, and with the CQC. The CQC will follow up on concerns and take regulatory action if needed. It has provided mechanisms for people to feed back on concerns over care. The CQC responds to all concerns passed to it, and can receive concerns anonymously via representative groups, such as Rights for Residents. Where those concerns have named the provider or service in question, the CQC has followed up the cases. Some 54 concerns regarding care home visiting arrangements have been raised during the pandemic. The CQC gained reassurance in all cases that visiting is now in line with guidance. In 12 cases the CQC secured this assurance by inspecting the service.

My department has not seen any data or reports on evictions of residents following complaints against care homes. If a care home were taking such action, it would be in breach of guidance. A complaint should not lead to a resident being asked to move to a different home, and the terms of evictions and processes followed should comply with consumer law, as per the CMA guidance. People should feel confident that complaining will not cause problems for them.

I recognise this has been a difficult time for care home residents. However, the existing powers in legislation are robust and give protection to those who need it. We therefore do not feel at this time that an independent review is necessary.

I turn to Amendment 297A. Continuity and oversight of care is crucial in meeting the needs of all patients, including those aged over 65. That is why, since 2015, all practices have been required to assign their registered patients a named, accountable GP. This GP must lead in ensuring that any GP services that they are contracted to provide, and are necessary to meet the patient’s needs, are co-ordinated and delivered to that patient. Practices must take reasonable efforts to accommodate patients’ requests to be assigned a particular accountable GP and must endeavour to comply with all reasonable requests to see a particular practitioner. Practices are also required to take steps each year to identify any registered patient over 65 who is living with moderate to severe frailty. The practice must undertake a clinical review of any such patient and provide them with any other clinically appropriate interventions.

The noble Baroness, Lady Tyler, is right that delivering on this is linked to the number of GPs in the system. I assure her and others that the Government remain committed to growing the number of doctors. There were 1,841 more full-time equivalent doctors in general practice in September 2021 compared to September 2019. In 2021-22, a record-breaking number of doctors started training as GPs. I therefore consider that existing regulations already address the welcome intention of my noble friend Lady Hodgson, and I regret that the Government cannot accept the amendment for that reason.

I hope I have given noble Lords and noble Baronesses some reassurance on the amendments in this group and that the noble Baroness will feel able to withdraw the amendment.

[Baroness Greengross (CB)]

My Lords, I have listened to an extraordinary range of speeches and addresses. People have spoken from the bottom of their hearts. I am very moved myself by what I have heard. I thank all colleagues and Ministers who have spoken today. I will look very carefully at the record of today and come back, but, in the meantime, I beg leave to withdraw the amendment.

Amendment 290 withdrawn.

Amendment 291 not moved.

Amendment 292

Moved by

[Baroness Chakrabarti]

292: After Clause 148, insert the following new Clause—
“Public health condition for investment in research into vaccines and other health technologies
(1) Any relevant research or development funded or part-funded by public finances is subject to the public health condition.(2) The Secretary of State, UK Research and Innovation, the National Institute for Health and Care Excellence, the Intellectual Property Office and all public authorities must ensure that the public health condition is fulfilled in respect of such research or development and any material benefit derived from it.(3) The public health condition is that—(a) a proportionate share of any intellectual property resulting from the public funding (including intellectual property in all research, pre-clinical and clinical data, safety and efficacy information and manufacturing capability) is subject to Crown ownership and openly licensed,(b) a proportionate share of any private profit resulting from the public funding is re-invested in further public health-related research, and(c) any proportion of public funding is published and taken into account in relation to the setting of reasonable prices for the public procurement of medicines domestically and internationally.(4) In addition, the Secretary of State must utilise, and actively support other countries to utilise, the full range of flexibilities within the Agreement on Trade-Related Aspects of Intellectual Property Rights (“TRIPS”) for the purposes of public health. (5) In the event of the World Health Organization declaring a pandemic, the Secretary of State must immediately—(a) waive UK-registered patents, industrial designs, other intellectual property rights, and protections relating to undisclosed information relating to—(i) vaccines,(ii) medicines,(iii) diagnostics and their associated technologies, and(iv) materials,necessary for combatting a pandemic internationally, (b) issue relevant emergency compulsory directions to enable the domestic manufacturing of generic and biosimilar products, and(c) support and implement any proposal to temporarily waive elements of the TRIPS Agreement at the World Trade Organization to assist wider global manufacturing of and access to health technologies.”Member’s explanatory statement
This new Clause ensures public benefits in exchange for public financing of research and development. It would require the Secretary of State to support public health flexibilities under the TRIPS Agreement and, in the event of a pandemic, domestic and international knowledge-sharing to combat the emergency.

[Baroness Chakrabarti (Lab)]

My Lords, Amendment 292 is in my name and that of my noble friends Lady Lawrence of Clarendon and Lord Boateng, and the noble Baroness, Lady Bennett of Manor Castle. I thank noble Lords from across the Committee and the People’s Vaccine Alliance—Saoirse Fitzpatrick of STOPAIDS, in particular—for their advice.

Last year, the Prime Minister lauded the successes of the UK’s vaccination programme as a result of “greed and capitalism”, but the virus-busting vaccines, treatments and tests were in no small part funded by taxpayers, supporting the work of scientists at universities, research institutions and small-scale biotech companies across the world. Over €93 billion of public money has gone into developing vaccines and therapeutics. The AstraZeneca vaccine developed at Oxford University was over 97% publicly funded.

Public investment at the beginning of the research process assumes the biggest risk at the point when there is no certainty that a product will be successful. It is only when effectiveness is clearer that big pharma swoops in and uses exclusive intellectual property rights to hold a monopoly over that product in the market. The risk is socialised but rewards are privatised and, crucially, monopolised. The NHS is paying twice for medicines: once for research and again through procurement.

Some estimates show the public paying for up to two-thirds of drug development, including research and clinical trials. Drugs are getting only more expensive, with estimates that the NHS procurement bill increased by nearly 10% over the last couple of years, to £20.9 billion. Yet there is still no guarantee of production at the volumes required to meet demand or that patients will be able to access health technologies at affordable prices, nor that scientists will be able to make use of the data, knowledge and technologies generated in the research process to develop improved follow-on products. Due to the opaqueness of the pharmaceutical industry, it is very difficult to track public funding. The terms of agreement, actual costs and prices charged—all these are kept behind closed doors.

The amendment seeks to change that for health technologies developed with public funding, as well as to define emergency procedures to expedite a sharing of research, data and intellectual property in the case of a pandemic. By adhering to the “public health condition”, the Secretary of State and all public authorities would ensure that

“a proportionate share of any intellectual property resulting from the public funding … is subject to Crown ownership and openly licensed … a proportionate share of any private profit from public funding is re-invested in further public health-related research, and … public funding is published and taken into account in … the setting of reasonable prices for the public procurement of medicines domestically and internationally.”

Open licensing would allow production in a competitive generic market, bringing down the price of medicines. A study published in the BMJ showed how the price of oncology drugs could decrease by between 75% and 90%. We saw this with ARVs for HIV/AIDS, and how crucial that was in fighting that pandemic by reducing costs from over $10,000 per person per year to under $100. Reinvesting a proportion of profits could ensure that they go towards health priorities rather than financialised practices or the development of me-too drugs—sufficiently different to obtain patent protection but without added therapeutic value, compared with existing products.

There is recent precedent for more transparency and conditionality around public funding in Italy and France, while the European Union is looking at how to track public funding and measure societal impact. Even our Government are beginning to think about public interest conditions for future pandemic tools to ensure access in low- and middle-income countries. This is a recommendation of the UK’s pandemic preparedness partnership’s 100 Days Mission report, published during the UK’s G7 presidency.

There are also circumstances where there has been no public funding but the price or volume restrictions of a product are preventing widespread access. In that case, the amendment calls for a recommitment to the use of pre-existing public health safeguards within the Trade-Related Aspects of Intellectual Property Rights—TRIPS—Agreement. These flexibilities include the use of compulsory licences when intellectual property monopolies prevent access to a medicine. They enable a Government to license another manufacturer to produce a generic or biosimilar version of a patented health technology at a much lower price. These can be used at any time by any WTO member; they have already been implemented more than 100 times between 2011 and 2016.

The need to use flexibilities has never been greater, with ever more drugs coming to market with a price tag of over £1 million per dose. For example, the NHS is currently paying a list price of £1.795 million for a single dose of Zolgensma to treat spinal muscular atrophy—SMA. It is the most expensive drug in the world, despite public and philanthropic funding. A Crown-use licence would permit the Government to allow a third-party manufacturer to make a biosimilar version at a discounted price.

We must also stand with other countries in the face of huge and unconscionable pressure from big pharma when TRIPS flexibilities are used. In 2007, we supported the Thai Government when they applied for a compulsory licence to produce a more affordable antiretroviral drug to treat HIV and were met with a threat from the pharmaceutical company AbbVie that they would lose access to all its other products. We could show leadership and solidarity again. Multinational corporations, whether tech, pharma or other corporations that noble Lords have considered in your Lordships’ House in recent times, warrant international democratic governance, regulation and restraint. Hence the last part of the amendment.

In future pandemics, we must not remake the continuing mistakes of this one. Monopolies which profiteer from poverty and sickness are bad enough at the best of times. But in a global emergency, when so many ordinary citizens, health workers and ethical businesses have sacrificed so much by way of livelihoods, liberties and lives, such conduct is totally amoral. Pharmaceutical companies’ refusal to share manufacturing know-how has led to grotesque vaccine inequity. Only 10% of people in low-income countries have received a single jab. So the amendment stipulates immediate action as soon as the World Health Organization declares a pandemic. The temporary—I stress, temporary —waiver of UK registered patents, industrial designs and other intellectual property rights relating to undisclosed information necessary for combating a pandemic, and emergency compulsory directions to enable domestic manufacturing, would mean that any company within the UK with the capacity could be making these products. It would allow products to be shipped internationally and allow companies across the world access to the critical data and rights to produce pandemic tools at scale for their own people.

The Indian and South African proposal to temporarily waive the TRIPS agreement is supported by more than 100 countries. It is only opposed by the European Union, Switzerland and our own Government. The waiver could allow the 100-plus potential mRNA producers across Latin America, Asia and Africa access to critical clinical data and manufacturing know-how required to make mRNA vaccines, without fear of litigation in the worldwide race to beat variants of the virus.

New treatments are in high demand, and high-income countries have already brought up the lion’s share. We will be facing a treatment apartheid on top of a vaccine one if the United Kingdom and others do not shift their position urgently. Just last week, it was reported that the director-general of the WTO, Ngozi Okonjo-Iweala, was hopeful of a breakthrough in the long-standing waiver discussions. However, it is incredibly important that any compromise is not overly restrictive geographically or in terms of products or types of intellectual property.

The UK Government must stop saying that a waiver will take too long to implement while simultaneously blocking its agreement. They should end their group hug with the EU, Switzerland and big pharma and start embracing and empowering the global south and wider world. The line that temporarily waiving TRIPS will stifle future innovation ignores the public money that funded the riskiest parts of developing vaccines and treatments, and how innovation works. Sharing research data and clinical trials results with great minds around the world creates the conditions for competitive collaboration, vying to have the best results but also sharing lessons learned and supporting each other. This is how we have made great leaps in the past, as with the human genome project, where public funding supported a global collaboration which has changed modern science.

This is about improving access to affordable, life-saving health technologies for our NHS and the world to combat pandemics and improve health. It is about ensuring that we get the best from our biomedical innovation, especially when we are investing so much money and expertise and putting human beings through clinical trials. In a global health emergency, not sharing life-saving knowledge is as wicked as blocking access to emergency exits from a crowded building in a raging fire. I beg to move.

[The Deputy Chairman of Committees (Lord Brougham and Vaux) (Con)]

My Lords, I call the noble Baroness, Lady Brinton, who is taking part remotely.

[Baroness Brinton (LD) [V]]

My Lords, I am a former trustee of UNICEF UK and, before that, Christian Blind Mission, a global disability charity. I have seen first hand the two-tier system of access to global vaccines and medications. It is a pleasure to hear the noble Baroness, Lady Chakrabarti, set out how, through her Amendment 292, the UK can fulfil its global public health responsibilities for investment in research into vaccines and other health technologies and how, in an emergency, companies developing these goods would also be required to help. She has introduced it in her usual effective and persuasive way. I suspect I am not alone in valuing her contributions to your Lordships’ House.

Throughout this pandemic, the Government have rightly congratulated themselves on their investment in research on the range of vaccines developed in rapid time and also the extensive, rapid clinical trials assuring their safety prior to approval. However, less satisfactory has been the UK Government’s view about their international moral responsibilities as a member of the OECD and one of the high-income countries with access to much-respected vaccination and pharmaceutical research. The World Health Organization has said right from the start of the pandemic that no country is safe until all are safe, but low and middle-income countries have not just not had the advantage we have; we have reneged on our promises to them over the last two years.

The UK Government repeatedly tell us that they have donated cash to Gavi and COVAX, but the reality is that we need to help those countries now to become able to manufacture their own medicines and vaccines in the light of emergencies such as future pandemics. The old adage of “Give a child a fish, feed them for a day. Teach a child to fish, feed him for ever” is so true. Here, the fishing rod is the skills to manufacture and sell medications in a future pandemic.

The TRIPS waiver, or intellectual property waiver, is supported by the World Health Organization and many large charities and countries, including the USA and others. However, as we have heard, the EU, the UK and Switzerland are not in that bracket. Its intention is to increase vaccine production in developing countries by sharing intellectual property for vaccines publicly for the period of that pandemic. It is needed because the data for November 2021, nearly a year from the first vaccine being delivered, showed that just 4.2% of people in low-income countries had received their first Covid vaccine. Across Africa, 6.3% are now fully vaccinated. COVAX has shipped just one-third of what it had expected would be available by the end of October—those expectations were based on promises from high-income countries. Export bans, manufacturing delays and bets on vaccines that have not received regulatory approval have also held up deliveries. Worse, we know that in this country we have thrown away vaccines rather than redirect them if we chose not to use them at a particular time.

It is time that the UK took a leading role in fulfilling the World Health Organization’s call. Now is the time to make all countries safe, not just for Covid but in preparation for whatever future pandemics may occur, and make sure every country is safe in the future.

[Lord Campbell-Savours (Lab) [V]]

My Lords, I want to speak narrowly to subsection (5) of Amendment 292, where it refers to the waiving of intellectual property rights and the protection of undisclosed information, and also where it refers to the waiving of agreements, all in an effort to assist global manufacturing. It provides a peg for me on which to hang the holy question of inadequate vaccine supply arrangements for third-world countries and, in particular, the need for greater manufacturing capacity, which would be assisted under a system of global waivers.

Two weeks ago, there was an interesting contribution from the noble Lord, Lord Grimstone of Boscobel, where, in reply to my noble friend Lady Chakrabarti, he said,

“there is no evidence that waiving intellectual property protections would advance these objectives,”

those objectives being

“help with vaccine production and distribution.”—[Official Report, 24/1/22; col. 8.]

I simply do not understand the Minister’s logic. As I see it, it is perfectly possible to manage such manufacturing requirements under directly monitored, subcontracted, licensee production arrangements.

In the same exchange, my noble friend and I went on to call for the 100 potential manufacturers in Africa—indeed, my noble friend has done it again today—identified by a number of charitable organisations to be encouraged to produce a Covid vaccine in approved plants under the subcontracting arrangements I have referred to. The Minister in reply, quite rightly, appeared preoccupied by ensuring companies were able to continue with “innovation.” I totally agree on that. That is a laudable objective that we all support. However, what evidence is there to suggest that in an entrepreneurial world, production under the carefully constructed management arrangements I have suggested deters innovation?

My suggestion in my original contribution was that it is perfectly possible to produce a vaccine and its subsequent product variants in dedicated production areas in approved plants and specialist facilities under the quality control of personnel seconded from advanced-nation producers. That is what I am asking for in the questions I have been asking repeatedly. What is the problem? How can that possibly destroy innovation as Ministers are suggesting? On the contrary, it raises greater challenges. It is a spur to increased innovation and, additionally, profit-taking, which I recognise is an important factor in funding research and development.

With less than 10% of the population in the world’s poorest countries being vaccinated under current vaccination production arrangements, we are prolonging the pandemic by leaving the door open to new variants. New variants will inevitably appear in under-vaccinated populations or, more specifically, in under-vaccinated ethnic groups which, often through a lack of available, detailed knowledge and under peer pressure, remain unconvinced of the need for vaccination.

I simply cannot understand the commercial, political or moral logic behind a failure to sponsor vaccination production under the arrangements I have outlined. We in the UK could be leading the world through this crisis if my suggestion was followed. We have spent billions on support schemes, much of it, sadly, wasted and lost in fraud. We could have spent much of that on vaccine initiatives. I think we are missing a trick, but it is not too late, as these pandemics are here to stay in one form or another. I appeal to the Minister to free up the market and pursue the strategy that I, and others far more significant than I, have been suggesting in this debate.

19:15

[The Deputy Chairman of Committees (Lord Brougham and Vaux) (Con)]

The noble Lord, Lord Howarth of Newport, is also taking part remotely. I invite the noble Lord to speak.

[Lord Howarth of Newport (Lab) [V]]

My Lords, this amendment raises major issues which warrant full debate outside the confines of the Health and Care Bill, but I am most grateful to my noble friend Lady Chakrabarti for providing us with this opportunity to consider them. I support the principle of the public health condition, as articulated in the amendment and as she described it.

The inflexible application of the intellectual property regime during the pandemic has been unconscionable. Huge numbers of people have died unnecessarily in low-income countries. Rich countries not only pre-empted and hoarded supplies beyond their reasonable needs but refused to relax the intellectual property regime to enable free manufacture of vaccines in low-income countries. South Africa and India led the appeal, on behalf of low-income countries, to the World Trade Organization to waive IP protections—patents, copyright, trade secrets. That appeal was rejected contemptuously and cruelly. The UK is among the culprits; the US and France support the waiver, but we do not.

The statement by the United Kingdom Government to the TRIPS council on 16 October 2020 is a piece of Mandarin cant: amoral, inhuman and disconnected from the realities of life and death for billions of people. Let me quote from it:

“Beyond hypotheticals, we have not identified clear ways in which IP has acted as a barrier to accessing vaccines, treatments, or technologies in the global response to COVID-19.”


The Covid crisis is not hypothetical. The refusal to support the free production of vaccines in low-income countries has had catastrophic consequences, yet still government Ministers repeat this theme.

The Government also said in their statement:

“A waiver to the IP rights set out in the TRIPS Agreement is an extreme measure to address an unproven problem.”


The pandemic is an extreme situation and the problem is staring at us—howling at us. At least 350 million cases of Covid have been confirmed globally, and estimates of the number of deaths from Covid range from 5.75 million to much higher figures.

The Government stated that:

“Multiple factors need to be considered … These include increasing manufacturing and distribution capacity”.


Indeed. But the response to this challenge by our Government was to cut aid funding massively, from 0.7% of GDP to 0.5% of a declining GDP.

The Government then said:

“The world urgently needs access for all to … vaccines … which is why a strong and robust … IP system … is vital.”


That is a non sequitur to end all non sequiturs.

The last quote I will give from the Government’s statement to the TRIPS council is this:

“The UK has played a leading role in … ensuring no-one is left behind”.


Do the Government really believe that? It seems to me to be beyond satire.

If we refer to Our World in Data, a website from the University of Oxford, for up-to-date figures, we find that in low-income countries 10% of people have had at least one dose of vaccine, while in high-income countries the figure is 78%. Africa has been most wretchedly left behind: on the continent of Africa 15.2% of people have had one dose and only 28% are fully vaccinated, whereas in the United Kingdom 78% of people have had one dose and 73% are fully vaccinated. It is not surprising that African leaders have complained bitterly of vaccine apartheid. How does the Minister refute that charge?

I feel profound shame at the behaviour of our Government; not only have they been morally purblind but they have been recklessly imprudent. Consider the economic consequences. The IMF has downgraded African economic prospects. Do we gain from the impoverishment of Africa? Think only of the implications for migration. Consider the diplomatic consequences. Africa has turned to China. How does our vaccine nationalism assist post-Brexit Britain to develop relationships around the world? Consider the health and economic consequences for ourselves. If we do not tackle Covid globally, we risk continuing damage to our economy, and our physical and mental health, as we reel in and out of lockdowns and restrictions. Consider the consequences for the world. Professor Sarah Gilbert has warned that the biggest threat is Covid spreading and mutating uninhibited in unvaccinated countries. No one is safe until we are all safe. Dr Hans Kluge, the World Health Organization regional director for Europe, last week demanded a drastic and uncompromising increase in vaccine sharing across borders. He stated:

“We cannot accept vaccine inequity for one more day—vaccines must be for everyone”.


The United Kingdom has not paid its fair share of funding to the WHO accelerator programme. The UK committed to donating 100 million doses through COVAX, but what we have actually done falls far short of that; at the end of 2021, the figure was 30 million doses. Does the Minister accept that our Government have acted appallingly? Will he accept Amendment 292 and will the Government incorporate its principles, wherever relevant, in policy and legislation?

[Lord Crisp (CB)]

My Lords, I wish to speak to Amendment 292 and specifically proposed new subsection (5)(c) on the TRIPS waiver.

I was going to make a few points of context but the last two speeches—indeed all the speeches so far—have set the context extraordinarily well. As the noble Lord, Lord Howarth, has just said, Our World in Data tells us that, as of an hour ago, 66% of the world overall has had one dose but only 10% of those are in low-income countries.

When this discussion has been raised before—for example, during Questions on Monday in your Lordships’ House—the Government responded that there were practical problems with the proposal. Indeed, there are practical problems and it is not a magic bullet, but it is a first-class starting point. It is also a point that we then need to follow up with political will. I do not understand why the UK and Europe—with the exception of France, which has just said no to the proposal—have not put forward a counterproposal starting from this point. Why have they not done what some other noble Lords have talked about—something similar to what the noble Lord, Lord Campbell-Savours, has suggested? Why not use this proposal as a starting point to do something for three big reasons?

The first of those reasons is the end game here. The end game is not about intellectual property but about dealing with the next pandemic, and the one after that. It is about having the ability to manufacture and make vaccines available around the world, quickly and rapidly, whenever there is a need for that to happen. That is what we are looking at.

Secondly, the point has already been made that the UK could play a much bigger role here and in the direct interests of the UK population. We are a global power in biomedical science and technology. We have produced some help; I note, for example, during our G7 presidency, the ability to offer some scope to other countries for sequencing variants. However, much more that is being done in this country could be expanded on. I think, for example, of the global pathological analytical service being developed in Oxford, which is basically a database for the sequencing of variants around the world, and is making the data accessible to everyone, free of charge; anyone in the world can send their data to it for analysis to be provided. So there are many things that the UK could be doing and offering as part of the development of a sensible plan for the future that responds to what low and middle-income countries are asking us to do.

The other big point here is that if the UK does not respond, others will. We have already seen the process of vaccine diplomacy during the pandemic, and the positioning of China and Russia in how they have been seeking to make friends and influence people through the use of vaccines. We can also see that countries will start helping themselves, and they in turn will break away from the consensus.

I am reminded of the very different epidemic of HIV/AIDS, more than 20 years ago. It is a very different disease, and the circumstances were very different. However, some of the responses were the same. To quote Dr Peter Mugyenyi, who was head of the HIV/AIDS response in Uganda in 2000,

“despite opposition by branded drugs manufacturers, and threats of punitive reaction, we took a decision to import and use low-cost generic ARVs from … India to save the lives of our patients”.

In a way, that says it all. Countries have that responsibility to their people, and they will go and do things.

Dr Mugyenyi goes on to say in the same article that at that point, the drugs were relatively expensive for Africa, but USAID, the US development agency, would not support their use in Africa because, it said, there was no ability to provide them to the population without the necessary supply chains. In an extraordinarily insulting and racist statement, the head of USAID said in 2001 that Africans could not use ARVs because they told the time by the sun. Two years later, President Bush moved that on, and President Clinton also intervened, with the result that antiretrovirals became cheaper. There is a process that will take place, whether we are a part of it or not. We do not know where this will end, but other countries will take their action.

The really important thing here is that the UK properly engages with this proposal, and puts in the counterproposal, whatever it is. It must be about working together, something along the lines of what the noble Lord, Lord Campbell-Savours, talked about: licensing it, working with people, learning from each other and building that infrastructure around the world, which, frankly, we need for the people of the UK as well as the people of the world.

I hope that in responding to this the Minister will talk about how he sees that development happening in the longer term and how the UK will have an impact on what we all see as a shameful position where we in our richer countries have been vaccinated if we have chosen to be, but in low-income countries people have not had that opportunity.

[Baroness Lawrence of Clarendon (Lab)]

My Lords, I have added my name to the amendment in the name of the noble Baroness, Lady Chakrabarti. It has been mentioned in your Lordships’ House numerous times that no one is safe until we all are safe. We have heard it many times in today’s debate.

I have voiced my concerns many times about the monopolies upheld by high-income countries that have chosen to retain scientific innovation and expansion by withholding the IP of the Covid vaccine. Low-income countries are in the position where they can manufacture their own vaccines, as there are more than 100 potential mRNA manufacturers across these countries ready to develop a vaccine, if they had access to the IP and the manufacturing know-how.

Too often the agendas of pharmaceutical companies are not aligned with positive public health outcomes. The public health condition aspect of Amendment 292 will help guide the Government to tighter stewardship around public funding to ensure that at the end of the development process, health treatments are both affordable and accessible to all concerned. I stand by the amendment in the name of the noble Baroness, Lady Chakrabarti, for this very reason, as its primary objective is to address the barriers that prevent poorer nations having adequate access to medicines at an affordable rate. We have heard many of your Lordships in the Committee today seeking to make the Government understand what is happening in lower-income countries and to support them and to ensure that action is taken when we say that no one is safe until all of us are safe.

19:30

[Baroness Bennett of Manor Castle (GP)]

My Lords, it is a pleasure to follow everyone who has spoken in this group. I thank the noble Baroness, Lady Chakrabarti, for so powerfully and clearly introducing this amendment, to which I was pleased to attach my name. The case has been overwhelmingly made, so I will not go over the same ground but will add a couple of points and draw some things together.

It is interesting that we started the day with the ARIA Bill. Concern was expressed from several quarters of your Lordships’ House about public money going into ARIA and whether we would see public returns from that money. As the noble Baroness, Lady Chakrabarti, said, what we have seen so often is the socialisation of costs and the privatisation of profits in so many areas of research and knowledge.

I draw to the attention of any noble Lord who has not seen it a very useful briefing on this amendment prepared jointly by Just Treatment, STOPAIDS, Global Justice Now and Universities Allied for Essential Medicines. That brings out two points, and it is worth looking at the national and the international. We have tended to focus on the international. Nationally there are some fascinating figures. The NHS pays more than £1 billion a year for medicines, but two-thirds of the upfront costs of producing those medicines come from public funding.

That is the national side. Looking at the international side, we have talked about and focused very much on Covid, but we really need to think about the fact that we are now in the age of shocks, in a world that is environmentally extremely disturbed. That is certainly a factor in the appearance of Covid; we have seen SARS and MERS, and there is Ebola out there. We need to build resilience into our world. We are talking about changing so many different things, and whether it is supply chains, medical supply chains specifically, or anything else, we really need to think about preparing for that different world, with the focus on resilience, rather than on private profits as it has been.

The noble Lord, Lord Crisp, asked an interesting question: why do we see the UK, the EU and Switzerland lining up against the rest of the world? The answer is there in profits, in an ideology that says, “We have to organise everything for private profits and somehow the benefits will trickle down.” It is interesting that today Michael Gove has gone on the record as saying that trickle-down has not worked; it is a failed ideology. Of course, there is also the impact of those profits being fed into our political system and the influence that that money and that lobbying have.

I will finish with this final thought. The noble Baroness, Lady Chakrabarti, said—and I think this reflects what other noble Lords, particularly the noble Baroness, Lady Lawrence, and the noble Lord, Lord Crisp, said—that we have been utterly wicked in our behaviour towards the global south in the Covid pandemic in failing to ensure that it has crucial vaccines. We have also, as has become obvious with omicron, spectacularly shot ourselves in the foot. I say to those who will not accept moral arguments for this amendment: please look at the practical self-interest. No one is safe until everyone is safe.

[Baroness Merron (Lab)]

My Lords, I thank my noble friend Lady Chakrabarti for raising the crucial matter of countries and peoples left behind in terms of the opportunity to have a necessary vaccination programme available to them. My noble friend Lord Campbell-Savours spoke of the importance of supporting innovation, which is one of the ways in which we can ensure that, while my noble friend Lord Howarth rightly said that the subject requires exploration outside of the Health and Care Bill—something also commented on by the noble Lord, Lord Crisp, who emphasised, as do I, the need for the political will to make progress.

There is no doubt, as we have heard today, about the gravity of the issues at stake and the need to resolve them. It is the case that where public funding is provided there must be conditionality, although of course that may be complex to refine into legislation. There are of course additional issues when funding is also coming from the private sector along with a need to ensure a balance of interests. It would certainly be helpful to have a stipulation that avoided placing undue bureaucracy and restraint on smaller developments and small-scale research. We do not want to see the pace of research slowed down with researchers tied up in lengthy proposal writing, contract negotiations and legal agreements.

As my noble friend Lady Lawrence has said, we know that the pandemic is not over until it is over everywhere, so the amendment raises the opportunity to explore whether the immediate waiver of intellectual property rights would mean an end to the pandemic everywhere. It is relevant to assess what contribution or otherwise intellectual property rights make to the promotion of technological innovation and the transfer and dissemination of technology. There is an advantage for producers and users of technological knowledge and the consideration of rights and obligations, and that needs to be considered in the round.

In respect of the response and actions to a pandemic declared by the World Health Organization, while I understand the intention behind the amendment, in order to be consistent I would comment with some caution about the Secretary of State being compelled to immediately take actions, particularly without any form of oversight—something that we will return to later in Committee.

However, I hope that today we can obtain some reassurances from the Minister about the Government’s intentions and plans in order that we can find a way forward so that low-income countries and their peoples have access to vaccines both now and in future.

[Lord Kamall (Con)]

I thank the noble Baroness, Lady Chakrabarti, for bringing this debate before the Committee today and for the heartfelt speech that she gave. The noble Baroness will be aware of the view of this Government following her recent Question in the House on the subject of patient waivers. As my noble friend Lord Grimstone set out, the Government remain open to all initiatives that would have a demonstrably positive impact on vaccine production and distribution. However, we believe that waiving intellectual property rights would have the opposite effect. Doing so would dismantle the very framework that helped to develop and produce Covid-19 vaccines at the pace and scale now seen. It would risk undermining the continued innovation in vaccines and technological health products that is required to tackle a virus, especially as it mutates and evolves, so we believe that doing so would be a mistake.

Instead, the success of the Covid-19 vaccine rollout vindicates the value of public and private co-operation. While university research departments are great at research, large-scale manufacturing and global distribution are not their function, so we recognise the importance of their working with partners with expertise in this area.

The intellectual property framework is key to those efforts. It has incentivised the research and development that has led to the development of Covid-19 vaccines. It has given innovators the confidence to form more than 300 partnerships, an unprecedented number, and has contributed to the production and dissemination of vaccines and other health products and technologies across the world, with global Covid vaccine production now at nearly 1.5 billion doses per month.

I share the noble Baroness’s intention that research funded through taxpayer finances should benefit the taxpayer, but we do not consider that that is best achieved through particular constraints in primary legislation. Research contracts afford greater flexibility and more powerful levers than the amendment, through provisions such as those requiring the dissemination of intellectual property for patient benefit, revenue sharing with the Government of commercialised intellectual property, and requirements around access to medicines in the developing world. Contractual protection mechanisms in funding arrangements can also ensure that intellectual property funded by taxpayers results in the creation of taxpayer benefit.

[The remainder of today’s proceedings will be published tomorrow.]

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