Osimertinib Cancer Treatment

Lord Dodds of Duncairn Excerpts

Tuesday 18th May 2021 Lords Chamber

[Lord Dodds of Duncairn (DUP)]

My Lords, Northern Ireland is subject to EU law when it comes to the single market for goods and medicines because there is a grace period until 31 December 2021. After that, say representatives of the pharmaceutical industry, the supply of 98% of medicines from Great Britain to Northern Ireland is at risk of being discontinued. That is a truly outrageous and scandalous situation. The effects are already being felt. Can the Minister confirm that the Government will take whatever steps are necessary in terms of the protocol to guarantee the continued supply of medicines to Northern Ireland from Great Britain without any further regulation being required?

[Lord Bethell (Con)]

My Lords, I have met with industry on this matter for the past 18 months. I am afraid that the message I get from it is not of the alarmist kind that the noble Lord described—quite the opposite. I pay tribute to the industry for its enormously collaborative sense of partnership and I really do not believe that there is any threat of the kind that the noble Lord described.

Northern Ireland: Flight Passengers and Covid-19

Lord Dodds of Duncairn Excerpts

Wednesday 28th April 2021 Lords Chamber

Asked by

[Lord Dodds of Duncairn]

To ask Her Majesty’s Government what steps they will take to ensure that the necessary information about flight passengers who are crossing the border into Northern Ireland from outside the United Kingdom is shared with the Northern Ireland health authorities in order to prevent the spread of COVID-19.

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

My Lords, coronavirus restrictions, including the arrival of international travellers, are led by the Northern Ireland Executive. I am extremely grateful to the Northern Ireland Minister of Health who is working closely with his counterpart in the Irish Government to facilitate the sharing of data for international travellers travelling across the border. The Government continue to support ongoing co-ordination between the UK Government, the Northern Ireland Executive and the Irish Government as part of our collective ambition to drive the virus down.

[Lord Dodds of Duncairn (DUP)]

My Lords, I am grateful to the Minister for his reply. The common travel area is a very positive feature of life between the United Kingdom and the Irish Republic and has been so for many decades, predating our EU membership. Yet there remain serious problems with the Irish Republic carrying out the necessary urgent work needed to allow the sharing of information from Irish passenger locator forms for those transiting to Northern Ireland and to the rest of the United Kingdom. This delay is increasing the risk of the spread of Covid, especially variants coming into Northern Ireland and the UK. The Northern Ireland Health Minister that the noble Lord referred to expressed serious concerns as late as last week, in evidence to the Northern Ireland Assembly, about the dragging of feet. It has been flagged for many months. Will the Minister please raise this at the highest levels of the UK Government and ensure that action is taken to close this problem off?

Folic Acid

Lord Dodds of Duncairn Excerpts

Monday 26th April 2021 Lords Chamber

[Lord Bethell (Con)]

I completely endorse the tribute of the noble Baroness to those who have worked on this policy. She is right: the science that has gone into this has been persuasive around the world. I thank those in industry who worked with us on our pilot, which proved extremely successful. We are in good shape when it comes to thinking through the implementation of such a policy. My hands are tied at the moment, because of purdah, but I hope to return and fulfil the noble Baroness’s wishes.

[Lord Dodds of Duncairn (DUP) [V]]

I congratulate the noble Lord, Lord Rooker, and other noble Lords on their tireless work on this issue. As former co-chair of the all-party group on folic acid fortification of flour in the other place, I remember the campaign to bring about the consultation well. As the parent of a son born with a neural tube defect, I am keen to see the Government act as quickly as possible to prevent avoidable births of children with such a condition. For the sake of the unborn and their families, can the Minister give a categoric guarantee that, after 6 May, when the elections are out the way, we will finally get definitive action and definite proposals?

[Lord Bethell (Con)]

My Lords, I join the noble Lord in paying tribute to all those who have worked so hard, particularly the noble Lord, Lord Rooker, who has delivered a playbook campaign on this. Being on the receiving end, I pay tribute to the grace, persuasiveness and energy with which he has conducted that campaign. He is not the only one, and I pay tribute to the personal testimony of the noble Lord, Lord Dodds— what a moving story he has just told. All who have been involved in these sorts of conditions would have been touched by that. I cannot deliver the categoric guarantee that he asks for but, as I said, we are looking at it extremely carefully and I hope to return soon.

Health Protection (Coronavirus, International Travel) (England) (Amendment) (No. 7) Regulations 2021

Lord Dodds of Duncairn Excerpts

Monday 22nd March 2021 Lords Chamber

[Lord Dodds of Duncairn (DUP) [V]]

My Lords, I congratulate the noble Baroness, Lady Chapman, on her maiden speech and I wish her well for her future in the House.

I have considerable sympathy with the noble Baroness, Lady Thornton, over the use of the urgent powers procedures in relation to these regulations. However, I want to deal with some substantive issues around the regulations and the common travel area. I would be grateful if the Minister could set out clearly how international visitors from high-risk countries are monitored after crossing from the Irish Republic into Northern Ireland and then into England or other parts of the UK, because at present there is a major loophole.

There has been an ongoing problem with getting the necessary information and data from the Irish Republic authorities. The Northern Ireland Executive and our local Health Minister have been calling for that information to be shared from passenger locator forms in the Irish Republic, with little or no progress so far. It is imperative that the Dublin Government act on this, otherwise there is a massive problem. They should have done so months ago and we were assured that that would happen, but it has not yet occurred.

Passenger locator form information needs to be shared between the Irish Republic and the UK authorities, especially in Northern Ireland. That issue has been raised bilaterally, as I have said, but it needs to be resolved as a matter of urgency. Arguments have been made concerning problems with data sharing and that legislation may be needed, but we cannot afford to waste any more time, given the urgency of the problems concerning the spread of Covid through international travel.

Can we have a collaborative approach? Will the Minister urge information-sharing with the Irish Republic and vice versa? Can he speak to colleagues in government to ensure that support is given to the Northern Ireland Executive in trying to extract this vital information? Information and data are shared fairly regularly on a whole host of issues to do with security and immigration for dealing with the common travel area, and it needs to happen in relation to Covid. It really is a matter of life and death.

Social Care Funding (EAC Report)

Lord Dodds of Duncairn Excerpts

Thursday 28th January 2021 Grand Committee

[Lord Dodds of Duncairn (DUP) [V]]

My Lords, this is one of those issues that many people do not think about until it affects them or a family member. Successive Governments have thought about it a considerable amount but have chosen to do nothing. As a result, it has become —as described by the National Pensioners Convention, among many others—the Cinderella of public services, inadequately funded and not delivering for many people, when they need it most. This debate, therefore, is important although belated. I am grateful to the noble Lord, Lord Forsyth, and for this most comprehensive report and findings, which are relevant not just to England but to other parts of the United Kingdom.

The Covid pandemic has exacerbated many of the problems that we face and accelerates the need for reform. There always seems to be a good reason—not least financial—to put off reform in this area; it keeps being delayed and delayed. It was good that, in his first speech as Prime Minister, Boris Johnson promised to fix the crisis in social care but, as many noble Lords have rightly said, we now need action. I trust that the Government will soon produce proposals to support and sustain a modern social care system, and that these will be implemented as quickly as possible. I would be grateful if the Minister could tell us what his timescale for reform is.

There is a lot of confusion and misunderstanding around what the state can and cannot provide in social care, unlike the care provided by the National Health Service, which is free at the point of need. The United Kingdom faces a growing ageing population, with higher, more complex health needs. The decline of family and community networks increases the demand for public services. The costs of social care are a significant burden and fear for older people and their families. Social care should be treated, like the NHS, as a core public service: people need to be able to access it when they need it, at all times. That means sustainable funding over the long term, not continued short-term fixes, if they can be called that.

Many families are shocked to discover the labyrinthine process that they have to negotiate when they seek help, at a time when there is often a great deal of stress and strain. The do not understand how health needs are fully met by the state and free at the point of need, yet care needs are means-tested. This can lead to terrible shocks when they are faced with massive care costs. We need to move to the position of free personal care for those who need it, at the very least.

A high quality of care is absolutely essential and, for that, as other noble Lords have said, there must be proper training for care workers, which invests in and respects them, in the same way as there is for those who work for our National Health Service. Low pay needs to be urgently addressed, as do ways to improve retention and recruitment of staff. I add my voice to those who have already talked about recognition and support for the millions of unpaid family carers, who do an incredible job delivering a considerable amount of care across this country, in normal circumstances, but who, during the pandemic, have worked heroically to care for and protect their relatives at home. Many of them are elderly, and likely to suffer from poor health themselves and be in the lowest income bracket. There are estimated to be over 1 million people, maybe 1.5 million, aged over 65 with an unmet care need. That is truly shocking in this day and age. The current system is disjointed, piecemeal and underfunded. That must end as soon as possible.

Mental Health Act Reform

Lord Dodds of Duncairn Excerpts

Monday 18th January 2021 Lords Chamber

[Lord Bethell (Con)]

My Lords, the role of health review tribunals is critical, and more needs to be done to ensure that they reflect the communities they represent. I am not sure it is the role of mental health trusts to finance local advocacy groups, but he is right that they make a difference and hold the system to account. The broader issue of racism in the NHS is a cross-institutional challenge that must be addressed by all parts of the NHS, and we are committed to doing so.

[Lord Dodds of Duncairn (DUP) [V]]

My Lords, I warmly welcome the Government’s proposals. A key area of concern for me is the length of time people spend waiting in emergency departments for assessment, even after being referred by their GPs. Will the Government guarantee, as others have mentioned, that sufficient resources in staffing will be made available to ensure that these warmly welcomed reforms are carried out and the quality of care increases?

[Lord Bethell (Con)]

My Lords, I can reassure the noble Lord only by saying we have put an ambitious report on the table. We will follow it up with a detailed consultation process that will engage Parliament in due course and lead to an ambitious Bill. That will be backed by substantial financial investment; thereby, we hope to make a major impact on the issues he describes, which I recognise and acknowledge.

Covid-19: Vaccines and Medical Equipment

Lord Dodds of Duncairn Excerpts

Wednesday 25th November 2020 Lords Chamber

[Lord Bethell (Con)]

The noble Lord raises an important point about those with blood cancer. In fact, many who are in the “extremely vulnerable” group have conditions that may or may not be affected by the vaccine. We are working extremely hard to accommodate their particular needs. The JCVI has an extremely thoughtful prioritisation process. I would be happy to meet the group the noble Lord describes.

[Lord Dodds of Duncairn (DUP)]

I warmly welcome the agreement that was reached yesterday between Her Majesty’s Government and the three devolved Governments on Christmas household arrangements. That is a good example of working together across the United Kingdom. I press the Government to continue that approach with the rollout of vaccines across the United Kingdom. Nothing would be worse than to have one area or region ahead of another when it comes to vaccinating clinical staff, care workers and vulnerable people.

[Lord Bethell (Con)]

I entirely endorse the sentiment the noble Lord expresses. I offer my profound thanks to the devolved authorities for the immense spirit of collaboration which has characterised the response to the pandemic. Often, it would seem from the headlines that the nations are at odds with each other; that is not my experience. The Christmas negotiations he cites are a very good example of that, and I hope the vaccination arrangements will be the finest moment.

Fortified Flour

Lord Dodds of Duncairn Excerpts

Wednesday 16th May 2018 Westminster Hall

[Nigel Dodds (Belfast North) (DUP)]

It is a pleasure to be here under your chairmanship, Mr Hanson. I congratulate the hon. Member for Pontypridd (Owen Smith) on securing this important debate and on the eloquent and cogent way that he set out the case for the fortification of flour with folic acid.

When the facts are set out and the evidence is adduced, it is a very compelling case. It is all the more surprising, when one hears the weighted evidence of the arguments in favour of it, that something has not yet been done in this country to ensure the mandatory fortification of flour with folic acid. The hon. Gentleman said that that has happened in many major countries across the world with vast populations. He mentioned Brazil, the United States and Canada; they are big countries with very strong regulatory regimes in which this practice has been carried out. Therefore, there have been multiple opportunities to have all the scientific evidence evaluated and to have all the upsides and downsides considered. It is very clear that the upsides are so massive that they require this country to follow suit. It is a shame that we are not yet in a position in this country to have mandatory fortification of flour.

It has been 27 years since the Medical Research Council published its research demonstrating that supplementing women’s diets with folic acid before the early stages of pregnancy reduced the chances of the pregnancy being affected by neural tube defects. That was in 1991. It was in 1990 that my son, Andrew, was born with spina bifida. Very soon after he was born, we became experts in the whole area of spina bifida: the reasons for it, how it develops and all the rest of it. Even back then, the great Professor Norman Nevin, who was an expert in the field in Belfast and did a lot of research, was a massive advocate for the mandatory fortification of flour, even before it was widely known about. He wanted to ensure that young parents who were planning to have children were better educated about the need to take folic acid and the general low levels of folates in the adult population and young people generally, because it was a massive problem and would store up big problems in future.

The reality is that as a result of not taking those measures, children are born with spina bifida or anencephaly. Children need not be born with those conditions if the parents have the right information and the mothers take folic acid at the appropriate time. The evidence shows, and it has been spelled out already, that it is too late once pregnancy has started. Many pregnancies are unplanned; many people even today, in 2018—never mind back in 1990 when my son was born—have no awareness of the need to take folic acid. They think it is something rather exotic—why on earth would they even consider such a thing? Even the name sounds a little strange.

People do not take the necessary steps and, as a result, children are born with severe disabilities. That presents great challenges to them, and often life-changing effects on their families. Often, as sadly was the case for my son, these children do not live a long life. Our boy died when he was eight years of age. In the process of his short but extremely rewarding and rich life, he underwent numerous procedures in hospital and numerous hospitalisations, sometimes lengthy. That had an impact on him, his family and his siblings.

The reality is that for all those children who are born with spina bifida and who live with it and are treated, many other children in the womb who are diagnosed with having a neural tube defect are never born. The hon. Member for Pontypridd and I recently hosted an excellent meeting in Portcullis House, which a lot of people attended. One of the things that came out of that was that, sadly, it appears that in this country we effectively deal with this problem simply by terminating foetuses that are diagnosed with a neural tube defect. That is how the vast bulk of these foetuses are treated.

It is a terrible thing that otherwise healthy babies and foetuses are in this situation as a result of a lack of action by society, successive Governments and by all of us, who have not done what other countries have done, which could be done at very little cost with no scientific downside, and which would reap enormous benefits for everybody. This is something that we need to take very seriously.

Over the years, my wife and I have done some work to try to educate people about the need to take folic acid. My wife, very bravely, did a number of television interviews when Andrew was alive. He even appeared on the television programmes. The process of education and telling people is not cutting through. It is not doing the job. It is not reaching the people it needs to reach at the time it needs to reach them, before they fall pregnant. We need to step up to the plate.

I will not repeat the scientific evidence, which has been laid out well by the hon. Gentleman and the groups that support this necessary move. There is a lack of understanding. People sometimes get nervous about the idea of adding things to food for public health purposes. I understand all that, but we already add things to flour and to water—we already make interventions where that is important and necessary. A lot of scientific evidence has been produced. I was struck that Professor Blakemore and the other experts who came to the event we held in Portcullis House said that, scientifically, absolutely nothing more needs to be proved or evaluated. All the evidence is there; we now require action on the basis of that evidence.

I simply add my voice to the plea for the Government to act on the advice of their own Scientific Advisory Committee on Nutrition and listen to the voices of all those who speak in favour of this measure. They should listen in particular to the voice of Shine which, as the hon. Gentleman rightly said, is a fantastic organisation that does tremendous work to help kids with spina bifida and hydrocephalus, and parents who have lost children. As I learned over those many years of intense engagement with clinicians and others, who often said, “Well, you tell us how Andrew’s feeling, because you know better,” parents do know. The Government need to listen to parents and potential parents—people who lost children in the womb or, totally understandably, felt unable to have a child with that condition.

This is a very important issue. It does not seem to me to be taken seriously enough, primarily because, relatively speaking, not a lot of children are born with spina bifida nowadays in the United Kingdom. As I said, I think that is partly because a lot of children with the condition are simply terminated in the womb. If it prevents even one or two children from being born with spina bifida who otherwise would have been born with the condition, this will have been a step well worth taking.

Blood Cancers

Lord Dodds of Duncairn Excerpts

Thursday 7th July 2016 Westminster Hall

[Jim Shannon]

I thank the hon. Gentleman for his intervention and for that personal story. I think that that situation is a disgrace. Any of us in the House would wholeheartedly agree with him. There has to be a system that enables all the people of the United Kingdom of Great Britain and Northern Ireland to partake of, use and access these drugs. The example he gives shows just where the current system falls short. This debate gives us an opportunity to highlight that and to seek the solutions that he and his constituents want.

The situation with ponatinib has resulted in the equivalent of a postcode lottery in patient access across the UK, with some patients having to move to Scotland or Wales to undergo treatment. Why should they have to move? It is not fair that they should. It seems grossly unfair that they should have to either move or travel to the hospital. For these patients, the drug could be an alternative treatment to a stem cell transplant, and a last chance of survival.

The systems of appraisal used to assess blood cancer medicines need to be able to take into account the small patient numbers and the issues that that raises about the amount and maturity of data available, to ensure that all patients who need access to medicines do not miss out because of where they live.

Chronic lymphocytic leukaemia is the most common type of leukaemia, a cancer of the white blood cells. In leukaemia stem cells start to overproduce white blood cells that are not fully developed; in CLL, these are called lymphocytes. Figures from Macmillan and NICE estimate that some 2,700 to 3,200 people in the UK are diagnosed with CLL each year, with most cases occurring in people over 60 and very few in people under 40. Around two thirds of the diagnoses are made by chance through a routine blood test with doctors; people do not know they have it and all of a sudden they find out they do. The other third of diagnoses are made following visits to the doctor for CLL-related symptoms: enlargement of the lymph nodes, liver or spleen, anaemia, bruising or fever, drenching night sweats and/or weight loss of greater than 10%. Someone with any of those symptoms should see their doctor, and do so soon.

CLL is more prevalent in men, with recent studies showing that some of the risk of developing it is inherited from parents. One in 20 CLL patients has a relative with CLL or a very similar condition; however, CLL can and does affect anyone.

[Mr Nigel Dodds (Belfast North) (DUP)]

I commend my hon. Friend for raising this issue today. In Northern Ireland three people every day are diagnosed with blood cancer. I am sure he would agree with commending the work of Leukaemia & Lymphoma NI, the only charity in Northern Ireland dedicated to dealing with this, and the great support it gives to the Centre for Cancer Research and Cell Biology at Queen’s University, which he has already mentioned. Without the dedicated work of people in charities like that across the country, raising money for absolutely vital research, we would be in a much poorer place indeed.

[Jim Shannon]

I am indebted to my right hon. Friend and colleague for that intervention. We have done, and we continue to do, many great things in Northern Ireland in medical research, charitable giving and charitable operations. He has rightly highlighted an organisation in Northern Ireland that does just that. It is worrying that we have so many people with blood cancer. When we take that as a proportion of a nation of 1.8 million, it gives an idea of just how important it is.

CLL tends to develop very slowly with many people not requiring treatment for months or even years, although others need it straight away. For all stages of CLL, more than 40%, of men and more than 50% of women will survive for five years or more after being diagnosed. At stage A, which is the earliest, people survive on average for 10 years or more after diagnosis, those at stage B for five to eight years, and those diagnosed at stage C live for up to three years. From those figures, life expectancy is very clear: people have a diminished lifespan.

Doctors often recommend against immediate treatment for CLL if it is diagnosed at an early stage and opt to watch and wait. I am concerned that sometimes they need to be more proactive and receptive to what the issues are at the time. “Watch and wait” can be stressful for those diagnosed and their families, but early treatment can lead to exposure to the side effects of drugs without achieving significant benefits, as well as to increased life insurance premiums. Sometimes we have to look at the other things that affect us when our health declines, such as work and financial obligations, or how to feed our family. That adds to the stress.

Patients whose CLL relapses early have a more aggressive form of the disease and it is essential that clinicians have a range of treatment options available to suit individual patient need. That is due to factors such as the variable course and nature of the disease, the toxicity profile of the therapies and the comorbidities, which are more prevalent in this situation. There is a general poor understanding of the need for a variety of treatment options. Again, knowledge of the blood cancers among GPs, the NHS, consultants—those who should know—perhaps needs to be improved as well.

Stakeholders including the CLL Support Association, which has done great work collecting much of this information, have two key areas in which they have workable recommendations to make a difference. For post-diagnosis support the CLLSA believes that because CLL behaves in such a diverse way, it is important that patients and their families are provided with accurate information from trusted sources. Each hospital should have a CLL nurse who can provide patients with useful written information that contains links to websites for those who wish to know more.

Let us be honest: people who get this diagnosis want to know as much about the disease and the problems that they have right away; they want to have that knowledge and information right there. As the hon. Member for Bootle (Peter Dowd) said, citing the personal experience of his constituents, they want to know what it means, how to react, what the survival chances are and how long. All those things play upon the mind; they are very important issues.

When it comes to access to new treatments, a second preliminary decision from NICE in June 2016 has provisionally rejected ibrutinib for NICE guidance to treat relapsed refractory and 17p deletion or TP53 mutated CLL. That group of patients have a poor prognosis and very few options available to them. The manufacturer has been requested to submit a proposal for consideration of CDF listing for access to treat adults for the 17p deletion or TP53 mutation only. Again, that is something that perhaps the Minister can reply to. When people see that they can access new treatments, which really could be life-saving, they want to have them right away and want to try them. In many cases, people probably would not mind piloting those things, just to make sure that they can have life expectancy on the timescale they have been given.

The CLLSA feels that ibrutinib should be made available to both groups because both populations share a number of similarities in patient need, including a significant symptom burden, limited alternative treatment options, and subsequently poor survival prospects. As both groups have a similar symptom burden, it is unfair that they will be unable to benefit from access to this treatment. There are also the quality of life benefits. CLLSA argues that the quality of life benefits reported by patients have not been adequately considered by NICE. As such, the cost-effectiveness of ibrutinib is likely to have been underestimated. Many of us believe—in the background information—that it certainly is a drug that could do more if there was the opportunity. We need to make sure that it can be made available and accessible.

Furthermore it should be noted that CLL is a heterogeneous disease, so there is a need for multiple options in every situation. I know that each person’s individual circumstances are different and the GP and consultant who look at that will decide the way forward. Some patients may not respond to, be unable to tolerate or be otherwise unsuitable for alternative treatments such as idelalisib. As such, there is a clear need for access to ibrutinib to enable patient and clinician choice, so that treatment can be tailored to patients’ individual clinical needs. Ultimately the decision will remain a matter for NICE, but this is what the key stakeholder in CLL believes to be the way forward. That is an organisation that has been run by trustees who are all volunteers and either suffer from CLL, are clinicians or are relatives of those with CLL. They do their research, not for glory or riches, but for what is best for those affected.

Some of the background information we had relates to brentuximab—I hope my pronunciation is right. That is hailed as one of the most effective single agents for relapsed anaplastic lymphoma—or Hodgkin’s lymphoma as it is better known. It was delisted after two of its indicators were removed, making it harder for some patients to receive the medicine they need. In November 2015, the Blood Cancers Alliance met the Secretary of State for Health and in a letter to the Prime Minister expressed its concern over the delisting of life-saving drugs from the CDF. There is a drug that was delisted and that seemed to be doing the job; it is concerning that it has been removed when it quite clearly could have made a difference.

It was greatly encouraging to have so many stakeholders engage on this issue and time will not permit me to pay tribute to all of them. Another organization working in the field is Celgene, which has provided some further information that will add to the debate. Five conditions account for almost 70% of the total lives lost to blood cancer: myeloma, diffuse large B-cell lymphoma, acute myeloid leukaemia, myelodysplastic syndromes and the aforementioned chronic lymphocytic leukaemia. New treatments have transformed survival rates for multiple myeloma since the 1970s and there have been great steps forward. I know that when the Minister responds he will tell us some of the good things that have happened, but average life expectancy for a patient diagnosed with multiple myeloma is still only five years. This debate gives us the chance to discuss the issue and get some direction and focus from the Minister on how we move forward and achieve a better, longer life for those with blood cancers.

Continued progress is only possible with continued research and investment. That is critical to achieving progress in the treatment of blood cancers. We have had many debates in Westminster Hall on rare diseases because we acknowledge the need to focus on rare diseases, and today’s debate is an example of that. The numbers of people who fall into the category of having rare diseases are small, but we must not ignore the burden of their despair and what that means.

Many of the molecules in other companies’ pipelines are being studied in combination with Celgene’s treatments. Ceasing access to those treatments will seriously hinder progress in increasing survival rates and limit future innovation. I know that the Minister, like everyone in this Chamber today, is totally committed to finding new drugs that can cure these life-threatening diseases, as I am sure he will make clear in his response. The point is that a balance needs to be struck between regulation protecting people and allowing innovation.

In conclusion, I am pleased to have the opportunity to express in this Chamber my concern on behalf of those with blood cancers. I thank all hon. Members who have come to participate. Our responsibility as elected representatives is to put the case on behalf of our constituents. I believe we have the opportunity to make a difference for those who many years ago would not have a long life, but who today could have a longer life if they had access to the cancer drugs fund. What we have in the United Kingdom of Great Britain and Northern Ireland is people with fantastic brains who have the ability to come up with new medications and who can make these things happen. I look forward very much to the Minister’s response.

Abortion (Disability)

Lord Dodds of Duncairn Excerpts

Wednesday 9th April 2014 Commons Chamber

[Fiona Bruce]

The hon. Gentleman makes a relevant point.

Developments in the law, in medicine and in cultural attitudes have led me to introduce this debate. Because of the lack of clarification, the law is being applied in what one barrister has called a haphazard fashion. In 2007, the Select Committee on Science and Technology recommended that the Department of Health produce guidance that would be clinically useful to doctors and patients in this regard, and in response the Royal College of Obstetricians and Gynaecologists provided updated guidance in 2010, but there still seems to be a considerable difference in views and working practice about what comes within the law and what does not. That is concerning for parents, practitioners, law makers and disabled people, many of whom believe it is now time to review the framework within which this law operates.

It is hard to see the differing treatment of disabled fetuses and able-bodied fetuses as anything other than discrimination, about which disability groups are particularly concerned. Medical knowledge has changed radically since 1990, and even more since 1967, and there have been improvements in fetal medicine, including the ability to correct disabilities, even within the womb before birth.

[Mr Nigel Dodds (Belfast North) (DUP)]

I, too, congratulate the hon. Lady on bringing this important matter before the House. As the father of a disabled boy who had eight years of a wonderful life—he had spina bifida and hydrocephalus, he gave much love and everybody who knew him loved him greatly—I join her in her plea for an end to discrimination against children in the womb who are disabled. She makes an important point about developments in medical treatment, even within the womb, especially in the area of spina bifida.

[Fiona Bruce]

I thank the right hon. Gentleman for that intervention. He makes a pertinent point. Disabled children can enjoy life and can give great joy to their families. Even disabilities such as Down’s syndrome cover a very wide spectrum and we need to remember that. When mothers and fathers hear the news about a child’s diagnosis with fetal disability, it is important that they are given information about the spectrum and about their options.

We have seen changes in neonatal intensive care, palliative care, paediatric surgery, educational care and community support. Conditions that might previously have been grounds for abortion are now treatable, and attitudes towards people with disabilities have moved on greatly.

As has been mentioned, the Equality Act 2010 protects disabled people from being treated differently or discriminated against as a result of their disability. In light of all this medical, legal and cultural progress in our society, is it not now time to review the application of the legislation? If we do not consider a disabled person of inferior worth after birth, why do so before?

I want now to turn to a separate point. Many women feel steered, pushed or even rushed into having an abortion once it is determined that they might be carrying a disabled baby. Time and again I heard of that in a commission that I chaired in this House last year, which carried out a parliamentary inquiry into abortion on the grounds of disability. A copy has been placed in the Library. The commission’s committee comprised several Members of both Houses and all parties with different views on abortion but a common concern about the issue. We took oral and written evidence over several months from a total of 299 witnesses. Repeatedly, mothers told us that they had come, as one said,

“under huge pressure to have an abortion”,

because, as another said,

“this is the expectation of the health care professionals”.

Other mothers told us that they were not given support when making the decision, or they felt fearful that they would not be able to cope in future due to limited financial resources or community support in their locality. One said:

“My son (who is now eight years old) has Down’s syndrome. He was diagnosed in the womb at 35 weeks and I was actively encouraged to seek a termination by the doctor who gave me the diagnosis. I was given no support by my local hospital in my decision to keep my baby. I had to actively seek support elsewhere and I’m sure you will appreciate how difficult this was as I was heavily pregnant and in a vulnerable state.”

Parents may find that they are given only a leaflet on abortion, with plenty of advice on having an abortion, but no information specific to the condition that has been diagnosed, or information about what support they could expect if they kept the baby, or an alternative such as adoption. One said that

“choosing to keep the baby effectively meant I was on my own.”

Some mothers were made to feel irresponsible bringing a disabled child into the world on the basis that the child would be a drain on public resources. Many felt guilty about allowing their disabled child to be born. Recently we heard how distressed mothers were in Leeds general infirmary when they felt under pressure to abort babies with treatable heart defects. Was it ever Parliament’s intention that a treatable condition should come within the scope of ground E?

We also heard from a doctor, Mr Jayamohan, about particularly good practice such as counselling; expert support from trained clinicians; the provision of information about the child’s potential disability and treatment; the offer to speak to another family with a child with a similar condition; palliative care; and the opportunity to meet specialists as soon as possible after diagnosis, and so on, to enable parents to make their decision. One parent said:

“Guidelines and standards need to be set in place, which all hospitals need to meet, to ensure all families are given support on education of disabilities when faced with such a situation. To give a family a diagnosis of a disability and then to immediately follow that up with the advice that they can have a termination without any other information is simply not acceptable in a civilised society”.

Does the Minister agree that there is a need for better, more consistent, balanced information, trained counsellors, increased awareness of palliative care for newborns, and comprehensive information and support from the medical profession, whatever parents’ decision about the pregnancy? Would she consider developing best practice guidelines to encompass that?

We even heard of misdiagnoses. Parents told the commission about diagnoses that had proved to be incorrect. One said that

“we were advised my daughter be aborted up to birth due to the results of an antenatal test. The most serious result indicated Dandy Walker Malformation of the brain. In fact when scanned after birth there was no such malformation. Our daughter is now 6 years old and a happy normal child.”

Mr Jayamohan told the commission that of 32 post-mortems of late-stage terminations he had examined, two indicated that the diagnosis had been profoundly wrong. It is worth remembering that these are wanted babies, and parents who choose an abortion suffer grief from their loss. As one has said, it is a

“bereavement like any other person”.

Last year, more than half of ground E abortions were diagnosed by ultrasound alone, which I understand can carry a 10% to 15% rate of false positive diagnosis, meaning that of the 1,367 ground E abortions diagnosed by ultrasound in 2012, as many as 200 may have been falsely diagnosed. What steps are in place to help the Department assess the accuracy of prenatal diagnostics? Should not all be done that can be done to reduce the option of an abortion where it is not necessary or wanted? To that end, does the Minister agree that improvements need to be made in data collection, as there seem to be weaknesses, gaps and limitations in the collection of information on abortions that take place due to disability. One professor has described it as “very inaccurate”. We should be collating more information on the reasons for abortion beyond 24 weeks and analysing such data appropriately. We should consider a report to a coroner for all late-term abortions and carefully consider the need for post-mortems. There should be a national register for all congenital abnormalities, not just for Down’s syndrome. All this would help to improve future diagnosis and, I hope, lead to lower numbers of abortions.

Let me touch on the increasing concern about fetal pain. A new scientific consensus is emerging that babies in the womb can feel pain, even from 20 weeks—certainly, as seems incontrovertible, from about 26 weeks. Yet we permit disabled babies to be aborted at up to 40 weeks. One mother, when asked whether her child would feel pain, was told, “He’s going to feel it.” Is it because we believe that disabled babies do not feel pain, or because we do not care that they do, that we allow abortion at up to 40 weeks for them? During the passage of the Bill that became the Human Fertilisation and Embryology Act 2008, the age of viability was agreed at 24 weeks; it can of course be even younger. Why does this threshold not apply to the disabled?

The logical corollary is that society is saying that disabled babies who can survive outside the womb should not be allowed to do so. I cannot escape the conclusion that this is discriminatory. It simply cannot be right that, as a society that purports to respect disabled people, we act to prevent their very existence in this way. These are arguments open to anyone who values human life and deplores discrimination against disabled people.

My final request of the Minister is whether she would be good enough to take time after this debate to consider the 2013 parliamentary inquiry into abortion on the grounds of disability and respond to the recommendations within it, not all of which I have been able to touch on tonight for reasons of time.