Spending Review: Health and Social Care

Liz Twist Excerpts

Thursday 12th June 2025 Commons Chamber

[Karin Smyth]

I agree that this issue absolutely needs to be resolved. There was agreement previously, under the coalition, and it is so disappointing that it was so unceremoniously dumped when I came to this place in 2015; that was one of the first things that the subsequent Tory Government did. It was a great disappointment to many people across the country, particularly those who were responsible for supporting an older person or a disabled person. We have ensured that we will address this issue, and have appointed Louise Casey to lead the interim report. I know that she will continue to work with everybody, and that all hon. Members will take an active interest in that work.

[Liz Twist (Blaydon and Consett) (Lab)]

I welcome the additional £29 billion of day-to-day funding and additional capital announced yesterday. Our investments are already paying interest, in the reduction of waiting lists. May I remind hon. Members of the announcements made earlier this year? I was particularly pleased that the Shotley Bridge hospital replacement in Consett was announced in wave 1, and I thank the Minister for her personal interest in ensuring that wave 1 happens. The 10-year plan will soon be announced. How will the comprehensive spending review announcements help us to shift from a sickness model to a prevention model?

[Karin Smyth]

I thank my hon. Friend for welcoming the Government’s investment in the health service. She has been such a strong campaigner for Shotley Bridge, and it has been a pleasure to work with her; I know she has continued to advocate strongly on behalf of her local population. The hospital is needed, but as she knows, in her community—and all our communities—patients should not always be expected to travel to hospital for care that can be delivered closer to home. We see massive improvements in virtual care and technology, which is why we have announced a £10 billion increase for technology over the spending review period. We are improving the NHS app and ensuring that people are enabled to do more digitally, but I recognise that does not suit everybody, so we will ensure that parallel processes are available for everybody. Our constituents deserve and need care closer to home, and want more of it.

Male Suicide in Rotherham

Liz Twist Excerpts

Monday 24th March 2025 Commons Chamber

[Jake Richards]

There is a direct link and we should not shy away from acknowledging, confronting and talking about it. When we talk about tackling poverty, we are talking about saving lives, too.

Secondly, we must save our NHS. This Government inherited a dilapidated health service and a particularly severely under-resourced mental health service. Fourteen years of under-investment and chaotic reform have hindered efforts to grasp this crisis. Long delays for treatment and diagnosis mean that so many men cannot get the support that they need and face worsening mental health in the meantime.

Thirdly, in my view we must be bolder in acknowledging the role that technology and social media have played in this crisis. New technology and social media can help efforts to combat men in difficult times: the internet can allow faster access to mental health provisions and can provide a network. However, it has been clear for more than a decade now that technology and social media can be deeply damaging to mental health, eroding confidence, often siloing rather than enhancing our communities, and exposing people to potentially harmful material. I know that many colleagues in the House have been moved by the Netflix drama “Adolescence”, which shines a light on the way the internet can remould ideas of masculinity and purpose—completely unbeknown to those closest to the 13-year-old boy in that drama.

Men, especially our young men, are spending less time outside and less time meeting people and communicating in person—all things that make us far happier and healthier. They are often sat alone for hours being bombarded with algorithms showing unrealistic representations of life, or communicating through anonymous group chats. Research shows that self-harm content has sometimes been allowed to flourish on social media by companies failing to remove explicit images and encouraging those engaging with such content to befriend one another. The arrival of smartphones has taken place in parallel with sharp rises in depression and anxiety in our young people. Of particular concern is the impact that mobile phones have on our young people. The average 12-year-old now spends 29 hours a week on their phone—equivalent to doing a part-time job.

[Liz Twist (Blaydon and Consett) (Lab)]

I commend my hon. Friend for securing the debate and for speaking so powerfully. Does he agree that we must also consider the employment-related, sectoral issues in tackling male suicide?

[Jake Richards]

Absolutely, and my hon. Friend has done so much admirable work in this area, long before my time in the House, so I can only learn from her. One point about suicide and male suicide is that an array of policy issues feed into it. This should not be a policy concern for the Government in silo; it should be part of every policy area, and every Department should have those concerns about mental health and suicide protection at its heart.

I was talking about mobile phones and the effect they have had. Since 2010, the average time that teens spend with friends each day has fallen by 65%. I applaud recent Government announcements about reviewing those policy areas, but I urge them to grasp the nettle when it comes to technology, phones, young people and mental health. In a decade’s time I believe we will wonder why we did not do so far sooner.

New Hospital Programme Review

Liz Twist Excerpts

Monday 20th January 2025 Commons Chamber

[Wes Streeting]

On the hon. Gentleman’s final point, I can well understand why people across the country will be cynical about commitments made on hospitals, given the experience that they had under our Conservative predecessors. Even if not every decision that we are taking is universally popular, I hope that people will appreciate our up-front candour and honesty in not trying to pull the wool over their eyes, and in setting out in today’s report, in terms, the timetable for pre-construction work and for starting construction.

In the particular case that the hon. Gentleman raises, I hope that the fact that land was acquired by this Government in December 2024 signals our absolute commitment to the scheme. If we were not committed to the scheme, we would not have made the land purchase up front ahead of pre-construction works, which are planned for 2030. We did so because we absolutely accept the case that he makes about the desirability of the site and the need for investment and the new hospital locally. In addition to the representations from the hon. Gentleman, my hon. Friend the Member for Lancaster and Wyre (Cat Smith) wins the award for being the first MP to collar me straight after the election to say, “Buy this land and do it now.”

[Liz Twist (Blaydon and Consett) (Lab)]

After years of broken Tory promises on new hospitals, can the Secretary of State confirm today that, following this review, my constituents in Blaydon and Consett can at last be confident that we have an honest, realistic and deliverable timetable that they can believe in?

[Wes Streeting]

I am grateful to my hon. Friend for the representations that she has consistently made since before the general election. I think her constituents will particularly welcome the investment in Shotley Bridge community hospital, which will be in wave 1, with construction starting in 2026-27. I know that that is not the only need for health and care provision in her constituency; we will continue to work together to make sure that her constituents experience an improving NHS, as opposed to being lumbered with the broken one that was left behind by the Conservatives.

Respiratory Health

Liz Twist Excerpts

Thursday 14th November 2024 Westminster Hall

[Liz Twist (Blaydon and Consett) (Lab)]

It is a pleasure to serve under your chairmanship, Mr Rosindell. I thank the hon. Member for Strangford (Jim Shannon) for securing this debate. We spent many years working on these issues together, when I was in opposition.

[Jim Shannon]

I am still here in opposition, but the hon. Lady is now over there on the Government Benches.

[Liz Twist]

We worked together as part of the APPG for respiratory health. I pay tribute to the work of that APPG’s members, as well as to the clinicians and patient organisations involved, including Asthma and Lung UK and Action for Pulmonary Fibrosis.

Respiratory illnesses have a disproportionate impact on the most deprived communities. In my constituency of Blaydon and Consett, the rates of conditions such as COPD are particularly elevated, and I have seen at first hand in my surgeries over the years how debilitating they can be; they can affect every part of a person’s life, from their mobility to their mental health, and tackling them is key to tackling health inequalities. Deprivation is linked not only to heightened rates of respiratory illness, but to faster rates of progression and poorer outcomes. That is true for terminal diagnoses such as pulmonary fibrosis, which has outcomes similar to common cancers, as well as for more common conditions such as asthma, which has seen a 25% increase in deaths over the past 10 years.

We know that the biggest driver of preventable lung disease is smoking, which is responsible for half of the difference in life expectancy between our richest and poorest communities. I am pleased that this Government are taking the decisive action that is needed to protect future generations through legislation, and I am particularly proud of the work that has been done over a number of years by Fresh, which sees public health and ICBs working together to tackle this issue.

Access to timely diagnoses and appropriate clinical pathways is vital for ensuring that people get the best possible treatment, but such access varies between conditions and areas of the UK. Of about 1.7 million people living with COPD in the UK, 600,000 are undiagnosed. Meanwhile, one person in every three has never heard of pulmonary fibrosis, which can lead to people receiving incorrect diagnoses, such as asthma. Incorrect diagnoses of severe asthma are common among children with the genetic condition primary ciliary dyskinesia. It is not a mild condition. In fact, children with PCD—I am not going to try to say it again—have a worse lung function than children with cystic fibrosis. It is vital that we do what we can to raise awareness of these conditions, including the rare condition of PCD, and their impact, whether they are primarily genetic in nature or driven by preventable causes.

We know that our NHS is in a really difficult place, following 14 years of Conservative mismanagement. We lost 14 years in which we could have made progress to improve the lives of people living with these conditions, but instead, they were left extremely vulnerable to the pandemic, following a decade of under-investment and disastrous top-down reorganisation by the previous Government. That is not the fault of our NHS staff, who are working hard to provide services in very difficult situations—I want to be clear about that—but the state of our health service at present was laid bare in the Darzi report just a few weeks ago. Among many other things, the report specifically notes the poor outcomes for respiratory conditions in people with learning disabilities, as well as the link between the rise in these conditions and the growing levels of damp often found in the private rented sector.

We have a long road to travel to fix the problems we have inherited, but I am proud to serve under a Government who are committed to huge investment in our NHS, and who have already made key steps towards a prevention agenda. Better public health and community care will be really important for tackling respiratory conditions and the shocking health inequalities that follow from them. I know that the Government have a sharp focus on preventive measures, such as those mentioned by the hon. Member for Strangford, and will look at how we can best improve our access to diagnostics and treatments, including biologics, for respiratory health.

Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders

Liz Twist Excerpts

Wednesday 22nd May 2024 Westminster Hall

[Liz Twist (Blaydon) (Lab)]

Constituents have been in touch with me about this. A member of my staff has been in touch with me as well. They tell me just how difficult life is with EDS. As one person put it,

“these are horrendous afflictions to live with, and some people can work and live with it, but some can’t. Any Personal Independence Payments that are received are spent on transport to and from appointments, medications and private treatments just to make life bearable.”

Does the hon. Gentleman agree that we must do everything we can not only to improve standards of healthcare, but to make sure that the welfare system can continue to support them?

[Andrew Selous]

I agree with the hon. Lady, and I have experience of assisting constituents through the PIP process, which is tortuous for those with EDS so I am very grateful to her for putting that important point on the record.

The 13th type of EDS is not rare and cannot be tested for, which is really significant. Recent studies have shown that the diagnosed prevalence of the most common type can be as high as one in 227 people, although most are not diagnosed. Those with the most common type are twice as likely to use hospital services, and there is evidence that the cost of secondary care for them is an additional 29%. This places a significant burden on the NHS, so if we understood and could diagnose it earlier, we could take some of the strain off hospitals. That is another important reason why we must make progress.

Tobacco and Vapes Bill

Liz Twist Excerpts

2nd reading
Tuesday 16th April 2024 Commons Chamber

[Liz Twist (Blaydon) (Lab)]

I would like to start with some figures from my local authority area and my constituency. Smoking prevalence is currently 9.9% in my constituency—that is 6,600 people who are smoking. The total cost of smoking to the constituency is estimated at £73.2 million: a productivity loss of £42 million, social care costs of £28 million, and healthcare costs of £2.9 million. The constituency spends £22.4 million on tobacco annually, and the average smoker spends £3,000 a year on tobacco.

Across Gateshead, the rate of smoking during pregnancy was 10.9% in 2022-23, compared with 8.8% nationally. The smoking rate among adults in different occupations showed that the more deprived areas were smoking more than those in other areas—as always, deprivation comes into these things. There were 688 lung cancer registrations between 2017 and 2019, and we know that smoking causes more than seven in 10 lung cancer cases. In 2019-20 there were 2,707 smoking-attributable hospital admissions in Gateshead. There were 825 emergency hospital admissions for chronic obstructive pulmonary disease, and we know that smoking is a key determinant of COPD cases. As such, I welcome the measures in the Tobacco and Vapes Bill, which will take us one step closer to a smoke-free future, and I am pleased to see that my party has pledged to support those efforts.

Creating a smoke-free generation will radically level up the health and wealth of our nation, especially in regions such as the north-east. The north-east has traditionally had a higher prevalence of smoking than the rest of the country, although we have made very significant gains in narrowing that gap thanks to the tireless efforts of local councils and NHS trusts working together, not to mention Fresh, our brilliant regional tobacco control programme. Despite that progress, though, our communities still suffer terribly as a result of smoking. As I have said, in 2019-20 there were over 2,700 smoking-attributable hospital admissions in Gateshead—where my constituency is based—and 825 emergency hospital admissions for COPD. Between 2017 and 2019 there were just over 1,000 deaths resulting from smoking in Gateshead alone. Ending smoking for the next generation will safeguard them from the suffering that has afflicted previous generations.

However, we need to do much more to ensure that smokers in the most deprived groups are not left behind as we move towards a smoke-free future. The disparity between different groups is even more extreme for people with mental health conditions, with smoking rates as high as 26% for those with depression and anxiety, compared with 14% of the general population. Calculations by Action on Smoking and Health show that at the current rate of decline, smokers with a mental health condition will not achieve smoke-free status until after 2050, around 20 years later than those without a mental health condition. This Bill is a major step in the right direction and will have a profound positive impact on the health and wellbeing of the next generation, but we must go further to tackle the health inequalities that continue to afflict the most disadvantaged in our communities.

Smokefree Future

Liz Twist Excerpts

Thursday 11th January 2024 Westminster Hall

[Liz Twist (Blaydon) (Lab)]

It is a pleasure to serve under your chairmanship, Mr Sharma. I congratulate the hon. Member for Harrow East (Bob Blackman) on securing this debate on the APPG on smoking and health’s tobacco control manifesto for a smoke-free future.

I welcome the Government’s bold smoke-free generation announcement, which has my full support and that of my party. The more we can do to prevent future generations from ever taking up this lethal and addictive product, the better. Parliament will stand firm with the Government against attempts to prevent crucial legislation from passing into law. On that note, I was pleased to see the guidance recently published by the Minister’s Department on how all parts of government should act to prevent the tobacco industry’s interference in public policy, in line with our international obligations.

My constituency of Blaydon is in the north-east, a region that has traditionally had a higher prevalence of smoking than the rest of the country, although we have made significant progress in narrowing the gap and lots of action is still being taken. That is thanks to the tireless efforts of local councils and NHS trusts in our region working together to continue the work on smoking cessation, and to the huge efforts of Fresh, our brilliant regional tobacco control programme. I thank Ailsa Rutter and her team for all the work they do locally.

Smoking costs my local authority, Gateshead Council, almost £170 million a year in lost economic productivity and NHS and social care costs. That does not include spending on tobacco, which costs the average smoker over £3,000 a year—a total of £54 million in Gateshead. That spending literally goes up in smoke, providing no tangible benefit to the local economy—not to mention the devastating impact it has on the health and wellbeing of my local community.

One of the groups hit hardest by the health consequences of smoking is people with mental health conditions. People with diagnosed and long-term mental health conditions are more than twice as likely to smoke than the general population. For those with serious mental illness, smoking rates are as high as 40%. That leads to people with mental health conditions dying up to 25 years earlier than the general population, depending on their condition, and smoking is a leading cause of this disparity. As we know, smoking can indirectly contribute to poor mental health through illness, unemployment, poverty and addiction. Helping people to break that vicious cycle is vital if we are to improve the physical and mental health of people with mental health conditions and the population more widely.

At the current rate of decline, people with mental health conditions will not achieve the smoke-free target until the mid-2050s, around 20 years later than the population at large. Although it is positive to see “stop smoking” support being rolled out in mental health in-patient settings, I understand that the roll-out of support in community mental health services has been paused. We need to think about how we support people with mental health conditions right across the board, regardless of whether that is in the community or in in-patient settings. That includes tackling the myth that smoking is an effective form of stress relief, which could not be further from the truth.

There is also far too little awareness about the mental health benefits of quitting. It is vital that we get the message out, but we are still awaiting the response to the Government’s consultation on pack inserts, which was due early this week, as the hon. Member for Strangford (Jim Shannon) has already mentioned. I, too, ask the Minister when the response to the consultation on pack inserts will be available. When will the statutory instrument to take that measure forward be laid before Parliament?

I will finish by sharing an anecdote. Other Members have talked about the impact of vaping on young people and the approach that we should be taking, and I had a salutary reminder about that when I attended a Christmas fair in my constituency last year. I was buying bits and pieces to support traders and to make up Christmas eve boxes for some of the children I know. I bought some very pretty knitted bags from a craft store and was absolutely shocked when I got home to find a packet of Barbie candy sticks inside each one. I thought we had gone well past that sort of thing. Needless to say, I did not use them and they were thrown away. It is important that we are not complacent about how far we have come and how far we have to go, so that really struck me.

It is good to see the bold action that has been set out to tackle such a deadly addiction, but the Government need to do more to ensure that smokers in the most deprived groups are not left behind as we move towards a smoke-free future.

Oral Answers to Questions

Liz Twist Excerpts

Tuesday 5th December 2023 Commons Chamber

[Andrew Stephenson]

My hon. Friend makes a very important point. NICE has yet to publish its final guidance and is continuing to work with all parties to address the issues raised in the draft guidance. The Government encourage manufacturers to work with NICE in setting a price that represents value for the NHS. I can assure the House that existing and new patients who are started on treatment while the NICE evaluation is ongoing will have access after it has issued its final recommendations, irrespective of the outcome.

[Liz Twist (Blaydon) (Lab)]

T3. As we know, there are strong links between financial difficulties, mental health and suicide. The poorest 10% are twice as likely to die from suicide than the wealthiest 10%. With so many people struggling to make ends meet, how is the Minister going to ensure that those seeking financial support get access to mental health support, and that those seeking mental health support get access to help with their finances?

[Maria Caulfield]

May I pay tribute to the hon. Lady for her work on the all-party parliamentary group on suicide and self-harm prevention? She knows that financial difficulty is a priority area in the suicide prevention strategy, because we know it is a high risk factor. That is why suicide is now everyone’s business—not just the Department of Health and Social Care, but our colleagues at the Department for Work and Pensions, His Majesty’s Revenue and Customs and all Government Departments. Anyone who has financial stress and pressure will be given support to reduce their risk of suicide.

Building an NHS Fit for the Future

Liz Twist Excerpts

Monday 13th November 2023 Commons Chamber

[Liz Twist (Blaydon) (Lab)]

It is no exaggeration to say that we face an acute crisis in public mental health. Last week, the Government had the opportunity to announce reform of the Mental Health Act and to introduce a rights-based approach that would offer choice, protection and human dignity to people who are sectioned. Their failure to do so is really disappointing. There are many problems with the Act in its current form, from inequalities in the disproportionate use of detentions, to high levels of restraint, particularly experienced by young people, and the removal of patient autonomy. The Act is not fit for purpose and must be changed.

That is why the next Labour Government will reform the legislation, putting an end to the disgraceful detention of people with learning disabilities and autism who do not have other psychiatric disorders. We will remove prisons and police cells as places of safety to ensure that people in crisis are supported in an appropriate setting, and make other reforms to empower mental health patients to have more control over their own care. Reforming the Act was a manifesto commitment for the Conservatives in both 2017 and 2019. Abandoning those critical reforms shows a lack of political will at the heart of Government to tackle the current crisis.

What we desperately need is a much greater focus on prevention of mental ill health. Since the cancellation of the 10-year mental health and wellbeing plan, we have seen little movement towards addressing the social determinants of mental ill health, which should be the business of every Government Department. Public mental health is an asset, and it is vital that the Government see it as such. We need targeted programmes and workplace and community interventions to protect, support and sustain public mental health. I am glad that Labour has committed to providing mental health hubs in every community, which we will pay for by abolishing tax loopholes for private schools and private equity fund managers.

The King’s Speech spoke of “record levels of investment” that are supposedly “transforming” mental health services, which makes me wonder who the Government are talking to. There are an estimated 1.2 million people on NHS waiting lists in England, and the proportion of 17 to 19-year-olds with a probable mental disorder has risen from one in 10 to one in four in the past five years. For organisations I meet through my work on suicide prevention, and for the constituents who come to my door, that is simply not a picture that speaks to their experiences.

Last week I organised a conference in Newcastle on tackling young suicide, coming together with local stakeholders from the NHS, charities, universities and schools across our region. I promised them that I would take their message back to Westminster, and one of their key messages was about funding. Short-term and short-notice grants and funding mean that voluntary and statutory sector organisations are forced to lurch from one insecure position to the next, unable to plan for the future. It is costly and time-consuming for small grassroots organisations to apply properly for those grants, and they feel that the process is too top-down to empower them to fulfil the needs of local communities.

I have worked with many excellent charities in the area of suicide prevention, and one of their key strengths is their ability to be innovative. However, with NHS services struggling, they are carrying large burdens without proper funding or co-ordination from above. The £57 million allocated to local authorities for suicide prevention and bereavement services in 2019 was really important, because it helped to co-ordinate local suicide strategies and local action, but despite the publication of the national suicide prevention strategy, we have seen no reassurance that that money will be renewed or increased in line with inflation. Many of the projects happening at local level have already been forced to end.

Meanwhile, the public health grant has plummeted by around £1 billion on a real-terms, per person basis since 2015. We desperately need the restoration of local suicide prevention funding and a cross-Government, 10-year mental health plan that creates real accountability and incentives for local structures. Many mental health organisations were concerned that the mental health strategy, which was due to be produced this year, was taken into the major conditions strategy. There is much concern about that delay.

It was positive to see in the national suicide prevention strategy the beginnings of a “no wrong door” approach, including training for Department for Work and Pensions staff dealing with distressed callers. I do not want to belittle those efforts, but there is a failure to reckon with the fact that, if people do not have enough money, life is really hard. Polling last year showed that the most common cause of anxiety was not being able to pay the bills. We need the Government to be assessing the impact of all their decisions, not just those being made about the health services. That includes ensuring that essential service providers and creditors have policies and procedures that underpin a compassionate response to customers experiencing financial strain.

I have talked about the need to tackle the mental health crisis, but I also want to talk about adult social care. It was noticeable that there was nothing in the King’s Speech about tackling that very real issue, and it was interesting that it came at a time when the National Audit Office was publishing its report, out last Friday, “Reforming adult social care in England”. It revealed that, of the £1.75 billion committed to reforming the adult social care system in December 2021, more than £1 billion has been diverted to other priorities, meaning that there has been a 58% fall in the budget. We already know that there are significant problems, including long waiting lists and high numbers of staff vacancies, which have increased by 173% over the last decade.

Thousands of people who are medically fit to leave are stuck in hospital beds because the care in the community that they need is not there to support them. It was therefore concerning to read the analysis in the NAO report, which found that the DHSC has not established an overarching programme to co-ordinate its social care reforms, and that six out of eight of its workforce projects are still in development. It also found that the Department does not have a long-term funded plan for transforming adult social care beyond the current spending review period.

Once again, we are seeing sticking-plaster politics and the absence of long-term thinking from this Government. We have serious long-term issues in our mental health and adult social care systems, and we require serious long-term solutions to fix them. After 13 years of failure, the Conservatives are looking to Labour for the ideas to fix the mess that they have made. Come the general election, the country too will be looking to Labour.

Fibrodysplasia Ossificans Progressiva

Liz Twist Excerpts

Thursday 7th September 2023 Commons Chamber

[Sir Mike Penning (Hemel Hempstead) (Con)]

I beg to move,

That this House has considered funding for the prevention of fibrodysplasia ossificans progressiva.

Thank you very much indeed, Mr Deputy Speaker. I am pleased you have pronounced it rather than me; from now on, perhaps we will just use FOP, which is what most people—including the families—call it, but the scientists do not.

FOP is a genetic condition; it is not an illness or a disease, as it is called all too often. It is very rare—one in a million. In this country, about 70 people alive have FOP, including about 30 young people and children. If we replicate that around the world, it is a very rare condition. The condition is probably the biggest nightmare for any parent, or anybody who loves a child.

Let me give an example: I played rugby, and I bruised very regularly. I stopped playing fairly recently, but when I did play rugby, I would bruise. For those who have FOP, there is a good chance that that bruise will turn to bone—skeletally, it will turn to bone. Most of us want our young children to be inoculated, and we have been through an inoculation process during covid, which I was very much involved with, but if someone with FOP has an injection there is a good chance that that trauma will turn to bone. I have circulated privately to the Minister, Mr Deputy Speaker and others some photographs of what that trauma can end up like and does end up like.

I got involved in this issue when a couple came to see me in my constituency and said, “Our daughter has FOP”—as a dyslexic person, I cannot say it to this day, although I have practised and practised. I had no idea what they were talking about. It is a bit like the previous debate: when we first heard about Primodos and the problems with it, most of us in this room had never heard of it. FOP is much rarer than the conditions suffered by the victims of Primodos that we have been talking about, or of mesh, valproate or any of those things, but the effects on those individuals and their families and loved ones are profound.

My constituent said to me that, as a mum, she looked at her baby and thought there was something wrong with her toes. The initial diagnosis from most paediatricians would be bunions—bunions on a new-born baby. My wife has bunions, but it is nothing to do with what she was born with; it is to do with the quality of the shoes she wore as a young lady. She will not mind me saying that, because we have discussed this case before. It is only sometimes, when people get in front of the right expert, that they get the diagnosis for what is a completely incurable, progressive condition and find out what they have. That is what happened with my constituents. There are three consultants in this country who have that capability, and they were lucky that they got in front of one. I pay tribute to the Portland Hospital where the diagnosis took place.

What does this mean for a young person? There are young people in the Gallery this afternoon who have the condition. I think the little ’un has gone home now because she was rather tired, and she helped me deliver a letter to the Prime Minister at No. 10 earlier today. What does it mean for them? It means that their whole life is different. Do we want to wrap our children up in cotton wool? No, of course we do not. Even if they have FOP, do we want to wrap them up in cotton wool? No, we do not, but they have to be extremely careful about inoculations, bruising, sport, and rough and tumble.

My constituents are very lucky. I have a very forward-thinking planning department in my local authority, which used the delegated powers it has to grant planning permission on the green belt—the green belt that I fight to protect in my constituency—so a specialist house could be built for Lexi, and she has the facilities where she can have the safe upbringing she needs. Lots of people were very worried about permission being given in that way because the condition is so rare, and I had people saying to me, “Are you really sure this baby’s got this condition, and is this not just circumventing the planning rules?”. It was only when I circulated some of the photographs, which many colleagues in the House have, that people said to me, “Okay, we get it,” and two of them actually said, “We’re really sorry. We get it.”

Because the condition is very often not visual in the early stages, there is no understanding of it. It is a bit like a mental health condition. We have much better ideas about mental health these days, but when we walk up to someone, we do not know whether they have such a condition. If people go up to Lexi today, they would not know that she has FOP, but they will do in the next few years, when it will become pretty obvious. The interesting thing about FOP is that there is no set plan or rule for it. In some cases it progresses very fast, the bone grows very quickly and the effects on the skeleton, movement and mobility are very quick, but in others there are short bursts of it, while sometimes there is nothing for years and then it will progress again.

Given the reason for this debate—and I apologise to the Minister, to whom I have spoken privately about this—I did not want the Minister for Health and Secondary Care on the Front Bench. I wanted the Minister for Science, Research and Innovation on the Front Bench. It is nothing personal, but this is not an NHS issue. It is a condition that needs scientific expertise in research and trials, which is in the Science Minister’s portfolio. I understand why, as soon as we start talking about anything to do with health, the Health Department goes, “That’s ours,” but on this particular occasion, it is not.

[Liz Twist (Blaydon) (Lab)]

Can I just say that I concur with the right hon. Gentleman’s comments about research and health research? There is a concern about how it is being handled.

[Sir Mike Penning]

I thank the hon. Lady for that intervention.

Earlier, we had a short statement on Horizon, which was excellent in that the Science Minister was on the Bench, and when I asked the Secretary of State a few questions about FOP, he agreed to meet us in short time. The great news is that we will meet the Science Minister. The key to what was announced earlier is that work was being done before covid—and there is work on FOP being done around the world—and there was funding from Horizon for trials on FOP. The big issue was that covid interrupted the trials, not our leaving the EU. I am sure some colleagues will say, “Ah, that’s what it’s all about.” No, it was nothing to do with that; it was covid that affected it. I put that on the record straightaway, and we now have the great situation that Horizon is back on stream.

One of the reasons I wanted to see the Science Minister on the Front Bench was to ask him this question. Perhaps colleagues in his office can elaborate on this before I meet him. The trials were halted because of covid, but have we got to start from scratch again or can we move on with those trials? I am old-fashioned and I used to be called a Eurosceptic, but we are now out of the European Union, so that is great. One of the things that was said is, “Well, you don’t want to co-operate with Europe,” but of course we want to co-operate with Europe. The announcement today on Horizon is a classic example, and the classic example of why we have to collaborate not just with Europe but with America and other parts of the world is that this condition is so rare and we could not do trials here. The scientists in America have a much bigger base on which they are able to do trials, and we need to learn from them and they need to learn from us.

So it looks sensible that we will be back in the European trials, but I am petrified about whether we will have to wait for Horizon to announce bidding on a certain part of the scientific research, and then wait a couple of years for that decision to be made. That is what tends to happen with these projects, but we are already in the middle of the project.

In trying to work out the best route forward—I am not a scientist; I am looking at this as a dad—we need two things. Research is going on into how we prevent the progression of FOP in the bone structure when there are traumas, and whether there is something early on that we can turn off. Is there research out there that can predict that? At the moment there is not, I understand. We have two situations. Can we in some way look at the future and at anybody who, family-wise or genetically, is likely to get this condition? Secondly, if a child has got it, how can we slow down progression? The families here with me today, and those in FOP Friends, would argue that they have this condition so they need help and research now, but we also need research to prevent what is going on genetically.

It also worries me how we need to spread knowledge about FOP around the world, not just in this country. In some parts of the world, almost no FOP babies are born. Just on a law of averages, that is not possible, and it has already been proven that there is no cultural link. Some genetic conditions are linked to what part of the world someone might have come from, but apparently they have already done research on FOP, and that is not the case. What is happening in parts of the world where babies are not born deformed and people do not instantly know. That sort of research desperately needs to be done. Lots of work is being done in Boston and around the world, but it is key that we are back as an associate of Horizon. Can we start not from scratch but halfway through and where we were before covid hit the project?

In a perfect world, we in this Chamber, and the families, would like to be able to press a button, perhaps give a tablet, and stop this progression. It is the most awful thing to be sitting there, waiting for your child to perhaps have a bump, a bruise or a progression. As a group, FOP Friends make sure that everybody talks to everybody. It is better learning from other people who are in the same situation and not having to reinvent the wheel every five minutes. As I said earlier, people are desperate not to wrap their child in cotton wool, and to give them as much of a normal life as possible. Earlier I was talking to the chair of FOP Friends. He was playing badminton with his son who has got FOP, and I think he loses on a regular basis. There are things that can be done, but the problem with the condition is that it is not the same in every child. It will be different in every child, and it is different in its progression.

That is why this debate is so important, and I thank the Backbench Business Committee for agreeing to it. It is not a normal sort of debate. We have had a debate in Westminster Hall on this issue, which has such a dramatic effect on the lives, futures, aspirations and dreams of those families whose lives are affected by FOP. I thought, and my colleagues thought—some of them could not be here today—that we should bring this subject to the Floor of the House, so that we could find out where this research is going.

[Liz Twist (Blaydon) (Lab)]

I thank the right hon. Member for Hemel Hempstead (Sir Mike Penning) for bringing this debate to the Chamber and for all the work he has been doing to raise these important issues within Parliament. It was good to hear such a fulsome and good description of the condition and how people are affected by FOP. As chair of the all-party parliamentary group on rare, genetic and undiagnosed conditions, I am glad to be able to take part in this debate to highlight the issues facing people with FOP.

We have heard from the right hon. Member about just how debilitating this condition is. Usually caused by a gene mutation, FOP is the only known condition where the body changes one organ to another. Bone forms in muscles, tendons and other connective tissues, progressively and irreversibly restricting movement. This severely limits the ability of those affected to perform the most basic tasks of daily life. Children with FOP lose their independence just at the point they should be gaining it. Many of the issues affecting families of children with FOP are experienced by other people across the rare disease communities, including long diagnostic odysseys.

[Sir Mike Penning]

I apologise for interrupting so early in the hon. Lady’s speech; she is generous in giving way. One of the bits that I think I missed in my speech is that FOP is not a disease; it is actually a genetic condition. For the families, that is really important. Americans talk about FOP as a disease rather than a condition, but really and truly it is a genetic condition that someone is born with, rather than something that someone would contract.

[Liz Twist]

I thank the right hon. Member for making that clear. He is right that it is important for the families. Sometimes in this House—even in our APPGs—we use a kind of shorthand about issues to bring people together. FOP is indeed, as he said, a genetic condition.

The rare disease community has some issues in common, including those long diagnostic odysseys. How long do people have to wait for their condition—I will use that term—to be recognised? There is a lack of clinical awareness with many of these conditions and limited treatment options for far too many people.

FOP, as the right hon. Member has said, is perhaps one of the rarest and most disabling of these conditions, with no treatment or cure. Within the rare conditions community, a diagnostic odyssey, as he will know, refers to a common scenario in which delays to accessing the right support and the right treatment—where it exists—can cause irreversible deterioration of an individual’s condition. While there is no treatment for FOP, repeated investigations, such as biopsies, can trigger the condition’s progression. That can be triggered by trauma, too. Furthermore, delayed diagnosis prevents parents from taking action to keep their children safe from situations and activities that could trigger injuries and flare-ups.

Unfortunately, a diagnostic odyssey is the norm for many children with FOP. Getting a diagnosis takes one and a half years on average, and more than half of people with FOP get the wrong diagnosis in the first instance, as we have heard. Despite genetic tests being available, FOP is not included in the national genomic test directory for rare and inherited conditions. Can the Minister explain why it is not included in that directory? What plans do the Government have to change that position?

The real hope for FOP, as we have heard, is new research. Like much of the research into rare conditions, it is likely to have far-reaching benefits for more common illnesses, such as osteoporosis, childhood brain cancer and heart disease. At the moment, the Government are overseeing a decline in research and international life science competitiveness, with commercial clinical trial activity in the NHS declining over recent years. We have heard from the right hon. Member for Hemel Hempstead about the STOPFOP trial, which is supported by funding from the European Union’s Innovative Medicines Initiative as part of Horizon 2020. Is it not ironic that we are discussing this on the day we have heard that we are now in the Horizon programme? Thank goodness we are; it is an important move. However, there have been two years of wasted opportunities and uncertainty for people going through trials and research, such as people with FOP.

I understand that researchers would have to apply for new funding from the scheme to carry on with the STOPFOP trial. How will the Government ensure that funding continues to be available to allow the trials to continue, and to ensure real progress in diagnosing and treating FOP?

As the right hon. Member for Hemel Hempstead said, time really is of the essence if we are not to lose the benefit of the work already done and if we are to give those with FOP, and those who may be born with the condition in future, the best chance of the earliest possible diagnosis and treatment.

--- Later in debate ---

[The Minister for Health and Secondary Care (Will Quince)]

Let me start by thanking my right hon. Friend the Member for Hemel Hempstead (Sir Mike Penning) for securing this important debate on FOP and for his powerful and compelling contribution. As he eloquently and articulately set out, FOP is an incredibly rare and truly devastating condition. He is a champion for people living with it and for their families, and I thank him for that. It is impossible not to be moved when reading about this currently incurable condition and when seeing pictures such as those he sent me about it. I am sure I speak for the whole House when I say that hearing about Lexi Robins and her parents, Alex and David, greatly moved me. I can only imagine what they must be going through, and I send my heartfelt sympathies to them and their entire family.

I also wish to express my admiration for Chris and Helen Bedford-Gay, who established the charity FOP Friends, after their son, Oliver, was sadly diagnosed in 2009. I understand from my right hon. Friend that they have raised more than £700,000 since then to fund research into treatment and to support families impacted by FOP. I am sure that many, many families are incredibly grateful for all their efforts.

At the outset, let me confirm that I am happy to join my right hon. Friend in meeting the Science Minister on this issue. We already work hand in glove on matters of research, and the House would expect nothing less. It would be remiss of me not to also welcome the hon. Member for Bristol South (Karin Smyth) to her place and to congratulate her on her promotion on the Front Bench. I also thank the hon. Member for Blaydon (Liz Twist) and my friend the hon. Member for Strangford (Jim Shannon) for their constructive and powerful contributions to this afternoon’s debate. I will endeavour, with your permission, Mr Deputy Speaker, to give as full and comprehensive a response as possible, given that I have far longer than any Minister usually has to respond to a Backbench Business Committee debate.

Let me kick off with a question asked by the hon. Member for Blaydon about the national genomic test directory. I scribbled those words down at pace as she was speaking. I will check and write to her specifically to confirm this, but my understanding is that FOP is a form of skeletal dysplasia, which is in the national genomic test directory. I will confirm that in writing once I have checked with officials on my return to the Department.

I want to assure the House and, of course, all families affected by rare diseases and conditions—I note my right hon. Friend’s point about FOP being a condition, but “condition and disease” is a phrase that the Department and clinicians often use—that we certainly recognise and understand the challenges they face. These diseases and conditions have wide-ranging impacts, not just on sufferers’ physical health, but on their mental health and on their involvement in the community, as he set out. That is why it is crucial that those affected by this condition receive the best possible care, from swift diagnosis to treatment, to improve their quality of life as diseases and conditions, sadly, progress.

To do that, it is vital that the UK harnesses our research prowess. Today’s debate has largely focused on the power of research and how it is often the key to unlocking so much. Our universities, scientific institutions and healthcare system very much lead the world in this space—we often say that we are world leading in lots of areas, but research is certainly one area where we are. They have enormous potential to develop solutions to improve the lives of people living with rare conditions, including FOP. Let me be clear that the Government are committed to funding this research.

In July, the Medical Research Council and the National Institute for Health and Care Research announced £14 million of investment to launch the UK rare diseases research platform. That is bringing together expertise from across the UK to foster new and innovative treatments for rare diseases and conditions, and to accelerate work to improve diagnosis. What is more, the Government are committed to funding groundbreaking research through nearly £790 million of new investment, again through the National Institute for Health and Care Research’s biomedical research centres. There are 20 centres, all of which research rare conditions and bring together academics and clinicians. Their role is to translate scientific breakthroughs into potential new treatments, diagnostics and technologies.

[Liz Twist]

I thank the Minister for his comments about the UK rare disease funding. It is very welcome, and I am particularly pleased to see that some of those centres are in Newcastle, in the north-east. That is really important, as I will discuss in my Adjournment debate later. Will he talk specifically about research into this condition, which is what the families will want to hear?

[Will Quince]

The hon. Lady pre-empts my next sentence, but let me give way to my right hon. Friend before I continue.

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[Will Quince]

I thank my right hon. Friend for his intervention. Again, he has pre-empted what I was about to say next. I listened intently to his question to the Secretary of State during the statement earlier today, where he secured a meeting with the Minister of State for Science, Research and Innovation. Of course, I would be very happy to join him at that meeting. I share with him the view that if there is an opportunity for that research to be continued, we certainly do not want to see it start from scratch. At the moment, my understanding is that that research relates only to adults and my right hon. Friend, understandably and rightly, would like it to be extended to children.

Let me turn to the steps that the Government are taking to tackle rare diseases and conditions more broadly. In 2021, we published the UK rare diseases framework, which embodies our commitment to building a brighter future for people living with rare diseases and conditions. The framework identified four key priority areas: helping patients get a faster diagnosis; increasing awareness of rare diseases among healthcare professionals, which is something that my right hon. Friend is particularly passionate about; delivering more co-ordinated care; and, alongside that, improving access to specialist care, treatment and drugs. Since then, as was alluded to by the hon. Member for Inverclyde (Ronnie Cowan), all four nations of the United Kingdom have published rare disease action plans to suit their healthcare systems, and we very much work—and have to work—in collaboration on that.

In England, we published our second rare disease action plan on 28 February this year, which also marks International Rare Diseases Day. In that, we set out 13 new actions to drive improvements across the health system and we are committed to publishing action plans throughout the lifetime of the framework.

I touched on awareness of FOP and rare conditions and diseases more broadly, because my right hon. Friend rightly highlighted how a lack of awareness of FOP in the medical community can lead to under-diagnosis, missed diagnosis and, sadly, unnecessary examinations, which can exacerbate symptoms. That is why improving healthcare professionals’ awareness of rare diseases and conditions is central to the rare diseases framework. I am pleased to inform the House that we are making good progress in that regard. NHS England has developed GeNotes, which is an online resource that puts information about genetic diseases and conditions at the fingertips of healthcare professionals. I am pleased to tell the House that resources dedicated to FOP will be added to GeNotes. That will help more clinicians to diagnose this awful condition, and sufferers will receive the treatment that they need more quickly.

My right hon. Friend has raised newborn screening with me privately. The hon. Member for Bristol South (Karin Smyth) also raised newborn screening for FOP. They are both right that antenatal and newborn screening can be a vital tool in the early diagnosis of rare diseases. National screening programmes are implemented on the advice of the United Kingdom National Screening Committee, which makes independent evidence-based recommendations to Ministers in all four nations. While I understand that there are currently no plans for a national newborn screening programme specifically for FOP, I highlight that proposals for new conditions can be submitted to the National Screening Committee’s annual call for new topics.

[Liz Twist]

On newborn screening, is the Minister aware that there is concern among the rare disease community about the limits of our newborn screening process? This is something that we are speaking about at the moment. We think that there are options for it to be expanded in a positive way.

[Will Quince]

I have heard that from other charities, groups and organisations representing those with rare diseases and conditions. It is right that we respect the independence of the National Screening Committee, which puts forward to Ministers evidence-based decisions, but it is nevertheless important that we listen to organisations that are making valid cases. I am also concerned about the length of time that the National Screening Committee can take to make decisions, review evidence and present recommendations to Ministers. In our meeting, I will happily discuss that issue in greater depth and at greater length.

Let me once again thank my right hon. Friend the Member for Hemel Hempstead for securing today’s hugely important debate, and in particular for securing it on the Floor of the House. I express my heartfelt support for the entire FOP community: those living with the disease, their carers, their families, the clinicians and the charity FOP Friends, which works tirelessly to improve the lives of people affected by this devastating condition. I reiterate my thanks to all Members for shining a light on the condition this afternoon. I very much look forward to our meeting and to discussing this further. I genuinely believe that together we will continue to strive for progress and awareness, and support those living with FOP.