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.

Cell and Gene Therapies: Skills Provision

Liz Twist Excerpts

Thursday 7th September 2023 Commons Chamber

[Liz Twist (Blaydon) (Lab)]

What a coincidence to have one debate about rare conditions followed by another. I am pleased to have secured this debate on skills provision for new cell and gene therapies.

The emergence of new cell and gene therapies, sometimes known as advanced therapies, offers real hope for patients with rare and genetic conditions. Many of these patients have so far faced limited treatment options and endured great challenges associated with managing their conditions long term. However, using the power of human biology, cell and gene therapies can address the root causes of diseases rather than just their symptoms, preventing disease progression and even saving lives. In many cases, a single one-time treatment can be all that is needed to alleviate a disease. Not only do these therapies provide relief for patients from the need for lifelong treatments; they could provide long-term cost offsets by freeing up NHS resources and enabling patients and their carers to be economically active.

However, it is not only rare disease patients who stand to benefit from cell and gene therapies. As research continues, we could see a world where cancer patients can be effectively cured of their disease and where type 1 diabetes is addressed by enabling the body to once again produce and regulate insulin.

These developments are huge for patients. That is a point that I want to stress, because in all these debates we need to remember who is at the centre of this new technology: it is people, living their lives in the best way that they can, and wanting the best life and the best treatment possible. That requires us to recognise that research and healthcare have not always been equitable and that patient decisions to participate in clinical trials or receive treatments may be more complex than for conventional medicines, because of the very irreversible, one-off nature that makes them so transformative. That is why ongoing patient and public involvement is so important, to build better relationships between researchers and patients and empower patients to make informed choices.

I want to talk now about two of my constituents, Freddie and Louis. There are many stories about the transformative effects of new gene therapies, but I will speak about the story of these two young brothers. Following a long struggle by the boys’ parents, older brother Freddie was diagnosed at 12 months with spinal muscular atrophy, a rare, genetic neuromuscular condition that causes progressive muscle wasting, as the Minister will know.

Freddie is a happy, social and determined boy, and he has hugely benefited from access to the lifelong treatment nusinersen, which his family say has saved his life and independence. However, they have faced challenges and costs in securing the equipment needed to allow Freddie to have the freedom he deserves, including fundraising for an all-terrain wheelchair that allows him to take part in as many activities as possible with his peers.

As Freddie was diagnosed with SMA, his younger brother Louis was screened for SMA and diagnosed before birth. As a result, Louis became the youngest pre-symptomatic baby in the UK with SMA type 2 to receive Zolgensma, a groundbreaking new gene therapy, at just 18 days old. More than a year on from getting that treatment, Louis has no signs or symptoms of SMA and is expected to continue to grow and live his life free from the disease.

As SMA is currently not screened for in the UK’s newborn screening programme, Louis would not have received such early intervention had it not been for Freddie’s diagnosis. As cell and gene therapies tend to slow down or prevent disease progression, early intervention can be absolutely vital. For more patients to benefit, we need not only a more expansive newborn screening programme, but a cell and gene therapy sector equipped for timely development and delivery of new treatments, many of which are becoming possible and available.

At this stage, I acknowledge the work of LifeArc, which has published a report on the future possibilities for cell and gene therapies in the UK. The report highlights what we need to do to make the most of the opportunities that we have.

So far, the timely development and delivery of new treatments is not guaranteed. The very nature of cell and gene therapies means that they are unlike standard off-the-shelf medicines. Specific infrastructure is needed to deliver them, from specialised manufacturing sites to specialised equipment in hospitals, as well as a specialised workforce, which is the focus of this debate.

The number of cell and gene therapies coming to market is expected to rise significantly in the coming years, but the current picture suggests that staff shortages could hinder progress. There is therefore an urgent need to prioritise skills provision. We need a significant expansion of the cell and gene therapy workforce. Studies by the cell and gene therapy catapult show that the cell and gene therapy and bioprocessing industries in the UK currently employ nearly 7,000 people, and that the number of highly skilled roles required is expected to more than double by 2026. However, there are significant barriers to achieving that: the highly specialised and complex nature of advanced therapies makes the sector particularly vulnerable to skills gaps. What we need is a UK-wide strategy and plan to develop a workforce that possesses the relevant skills that are desperately needed by the industry.

One hurdle is the limited public awareness, outside the academic world, of cell and gene therapies. Improving the exposure of career pathways will be vital, especially for potential technicians and other staff who will have less familiarity in the field. Proactive engagement with students as early as primary school could empower them to pursue careers in cell and gene therapy. That could include bringing scientists and industry experts into classrooms, or a focus on understanding rare conditions, cancer and the transformative effects that treatments can have on patients’ lives. Heightened public awareness of the lived experiences of rare disease patients, and of the transformative potential of cell and gene therapies, should also feed through to higher education, but as it is very much a specialist field, science, technology, engineering and maths students need guidance on how to specialise. They also need to be equipped with the basic lab skills and experience needed to get started in the workforce, which is a particularly current issue for the industry.

However, the industry will not be able to rely solely on new graduates. Instead, it will need to draw on workers in declining industries, such as oil and gas production, and attract people who have not been to university. The Government need to support the CGT industry to access all those potential pools of recruitment by promoting the visibility of the cell and gene therapy field and investing in training and development programmes. A first port of call, for example, could be working with stakeholders to create a central platform for job, training and education opportunities in the sector, so that those interested in the industry need only go to one place to find the information they need.

Most critically, the Government need to play an active role in equipping candidates with the skills they need, working with academia and industry to create a national strategy for placements and internships. For non-graduates or those changing careers, we should be taking advantage of the cell and gene therapy catapult’s existing advanced therapies apprenticeship community and advanced therapies skills training network. With ringfenced funding and the convening power of Government, the Government could help to expand those schemes into a national training framework, to develop a sustainable workforce pipeline. Training bursaries may also need to be provided for those changing careers, so that adult workers can learn new skills without losing income.

At the moment, training academies run by well-funded individual companies risk undermining collective training efforts, fragmenting training standards and depleting the workforce pool for small and medium-sized enterprises. To tackle that, we need new forms of accreditation that can guarantee consistent and quality practice. We should also find ways to incentivise companies to share their knowledge to the benefit of the whole sector.

Of course, many of these issues relate to the development and manufacturing of cell and gene therapies, but if patients are to benefit from these new treatments, NHS staff must also be trained to deliver them, or we could end up in a situation where treatments are available but patients cannot access them. There is also a risk of geographic and socioeconomic inequities in access to advanced therapies. Without proper planning and preparation to ensure health service readiness, some patients could be disadvantaged based on where they live. That is why we need a national vision to ensure an equitable, standardised approach to the expansion of the cell and gene therapy field and the training of NHS staff. Accreditation passports, a central learning hub and provision of flexible, blended training opportunities could all come into play.

Geographic considerations are important more broadly within the sector and life sciences as a whole. While much of the UK’s life science industry is concentrated in the golden triangle, the cell and gene therapy industry is generally better distributed. My local enterprise partnership in the north-east has identified cell and gene therapy as a key area of growth for the future, and the sector could offer jobs for people with various levels of qualifications across the region. We have to make sure that we are capturing the talents and experiences of people across the UK, not just in London, Oxford and Cambridge.

We also need to ensure that there are research facilities looking at rare diseases right across the UK. Newcastle is a key centre, and the north-east has an important part to play; I would like to stress that. The cell and gene therapy sector must work with local authorities to develop more locally responsive recruitment and regional skills pipelines, with greater information sharing between manufacturers and treatment centres to ensure that patient demand is met.

There are a lot of considerations here, but first and foremost what we need is a strategy—a strategy that will not only plan for the expansion of the sector but do so in a manner that puts patient need and care at the heart of its goals, because that is what this is all about. It is important that patients are listened to in all this and that plans are put in place not only to develop and deploy treatments but to ensure that patients are supported prior to, during and after receiving new therapies. As we upskill people to get involved in this space, we need to imbue them with an intimate understanding of the lives of the people they are working to treat, so that they might best serve their needs and understand their priorities.

I hope that the Minister can today provide assurances that his Government plan on delivering a detailed strategy to support the expansion of the cell and gene therapy sector, to allow patients equitable access to treatments that stand to transform their lives. We have so many opportunities now, and we need to make the most of them for those who are affected by rare conditions and rare diseases.

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.

--- Later in debate ---

[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.

Smokefree 2030 Target

Liz Twist Excerpts

Tuesday 20th June 2023 Westminster Hall

[Liz Twist (Blaydon) (Lab)]

It is a pleasure to serve under you as Chair, Mr Sharma. I commend the hon. Member for Harrow East (Bob Blackman) and my hon. Friend the Member for City of Durham (Mary Kelly Foy) for securing today’s debate.

Smoking is not a lifestyle choice; it is a lethal addiction that the vast majority of smokers enter into before they reach adulthood. It is also an addiction that is increasingly concentrated among the most disadvantaged in society. The Office for National Statistics recently reported that over a third of smokers are now among the poorest 20% of the population. Lest we forget, that concentration of disadvantage is fuelled by the tobacco industry, the ability of which to maximise its profits by selling lethal and addictive products must be strictly regulated if we are to achieve our Smokefree 2030 ambition and protect the nation’s health.

My constituency, like that of my hon. Friend the Member for City of Durham, is in the north-east, which is the most disadvantaged region in the country, as well as having the lowest regional life expectancy and among the highest smoking rates. It gives me absolutely no pleasure to say that. In 2021, 22,000 adults in Gateshead smoked, which cost the NHS £7 million and local authority social care £5.4 million, as well as costing £66 million in lost productivity. Those costs are due entirely to smoking and are entirely preventable.

Tobacco addiction has been levelling down communities across the country for decades and will go on doing so until the Government start to take action to deliver on their Smokefree 2030 ambition for all in society. On average, smokers spend around £2,500 per year on smoking. That is money they can ill afford. The total spend in Gateshead is £55 million—an eye-watering amount that goes up in smoke, with no benefit to the local community. Ending smoking will significantly increase disposable income in poorer communities such as mine, help grow the local economy, and improve the health and wellbeing of our communities.

Members have spoken about the need for investment in stop smoking services, which is indeed vital. The hon. Member for Harrow East spoke passionately at a debate in March about the Smokefree 2030 ambition and the role of support for smokers in achieving that goal. I wholeheartedly agree with him: smokers need to be motivated and supported to quit. But, as we have heard, the public health budget that funds local authority stop smoking services has been cut by 45% in real terms since 2015. That funding desperately needs to be reinstated if smokers are to get the support they need and deserve. The Government have so far failed to make the necessary funding available from the public purse. That is why I support a levy on tobacco manufacturers to pay for measures such as the stop smoking services needed to deliver the Smokefree 2030 ambition. Will the Minister fulfil the prevention Green Paper commitment to consider a “polluter pays” approach to funding tobacco control? That funding is sorely needed if we are to achieve our ambition of a Smokefree 2030.

Another area I want to look at is mental health. More investment is desperately needed to tackle smoking among those with mental health conditions as smoking is the leading cause of significantly reduced life expectancy among people with a mental health condition. Depending on the condition, life expectancy can be reduced by between seven to 25 years and as many as one in three smokers has a diagnosable mental health condition. Smoking is an indirect cause of poor mental health across the whole population through its impacts on physical health, income and employment. It is also a direct cause because it increases the risk of some mental health conditions, such as depression and schizophrenia. Those factors form a cycle whereby smokers are at greater risk of poor mental health and those with poor mental health are at greater risk of becoming heavily addicted to smoking and struggling to stop, further damaging their mental health. Investment is desperately needed to break that cycle. I could say much more on the issue. It is vital that we look at the provisions in the NHS long-term plan. They, on their own, will not reach the much larger group of smokers who need assistance to quit.

The improving access to psychological therapies programme has around 1,690,000 referrals a year and supports people with conditions such as depression and anxiety. The smoking status of clients of IAPT services is not routinely monitored. However, given the high rates of smoking among people with common mental health conditions, it is likely that around one in four clients smokes, which is equivalent to 504,000 smokers a year taking part in the IAPT programme. Pilot projects have shown that IAPT therapists are willing and able to deliver support to quit and that clients value the offer, so extending IAPT to include smoking cessation treatment would be highly cost-effective as it piggybacks on an existing service. But that still requires investment.

Finally, I want to share concerns that others have raised about the increase in youth vaping. Smokers with mental health conditions have been found particularly to benefit from access to e-cigarettes given their high levels of addiction and their barriers to quitting. It is essential that we ensure that adult smokers continue to have that help as a safer alternative to smoking and a means of quitting, but we must drive down the increasing rates of vaping in our children.

[Gareth Johnson]

The hon. Lady is making an interesting speech. There is no doubt that vaping saves lives when smokers convert to vaping. Although we must do everything we can to stop children from accessing vapes and dissuade non-smokers from taking up vaping, does she agree that the last thing we want is to do anything at all that prevents or dissuades smokers from switching to vaping or other alternatives such as heat-not-burn products?

--- Later in debate ---

[Liz Twist]

Of course, it is right that we do everything we can to help adults stop smoking, but we also want to prevent young people from accessing vaping. We do not know the long-term impact, and it is important that we do not get non-smokers taking up smoking because of some attractive bubblegum or strawberry-flavoured vape. There are also environmental issues with disposable vapes, which are often used. Yes, I agree with the hon. Gentleman, but we must tackle the other side of the issue as well.

Fresh, the tobacco control programme in the north-east, and Action on Smoking and Health have submitted strong, evidence-based proposals for further regulation of vaping to the consultation, which has just closed. The Government must act now, without delay, to implement their proposals. My final question to the Minister is this: will he commit to publishing concrete proposals for regulation to tackle youth vaping before the summer recess?

Stem Cell Transplant Patients

Liz Twist Excerpts

Monday 12th June 2023 Commons Chamber

[Mark Tami]

I thank my hon. Friend for that point. He is entirely right. As part of the transplant process, the immune system is effectively wiped out. That is a necessary part of the treatment, but clearly it leaves the patient fairly defenceless to infections. Once the donor stem cells are given, they will slowly build up a new immune system inside their body, but that takes time—it does not happen overnight—so those patients are often very vulnerable to infections. He made the point that if they put themselves into a dangerous situation because of financial pressure, the worst could happen to them—or at the very least, they could fall back into the medical setting that they were hoping to remove themselves from.

As part of the process, patients strictly isolate themselves in a hospital room for weeks—sometimes months—on end. Even after they leave, they are often weak and, as a result of their inability to work, their household income will obviously suffer. When patients are well enough to be sent home from hospital, there is still a long, gruelling and costly recovery ahead, whether they are the main wage earner or another member of the household, because obviously everyone else has to support them, whether in a caring role or otherwise.

[Liz Twist (Blaydon) (Lab)]

I thank my hon. Friend for giving an excellent explanation of the position and for succeeding in getting an Adjournment debate on the issue. Does he agree that people are hit three times over? They are hit while having the treatment, often hit by reduced income when they have finished their treatment and hit by extra costs from needing heating and food as well as other things, especially now we face such a cost of living crisis.

[Mark Tami]

Absolutely. My hon. Friend makes an important point. Patients must continue to take those extra measures for fear of getting an infection that could be life-threatening. As she said, they are advised to keep warm at all times, to sterilise drinking water and to wash their clothes more often. With the surge in electricity and gas bills, those extra costs are really hitting patients hard.

Another part of the transplant process is having what is known as a clean diet, which basically means that the patient needs to know exactly where their food comes from and how it was cooked, so they tend to cook it themselves, which in the main makes for a more expensive process. Ready meals are not really an option. If someone very kindly prepares something, they cannot take the risk because they cannot be 100% sure where it has come from. Clearly, the record food prices we are now seeing make the situation far worse. We hear on the news that people are going for cheaper options.

Mental Health Treatment and Support

Liz Twist Excerpts

Wednesday 7th June 2023 Commons Chamber

[Liz Twist (Blaydon) (Lab)]

The Minister is talking about the mental health strategy now being part of the major conditions strategy. Is he aware that many mental health organisations see it as a retrograde step that, having conducted an extensive consultation and invited views, the strategy will now be put back even further?

[Neil O’Brien]

I assure the hon. Lady that all contributions were fed into the major conditions strategy process. The reason why we are making the mental health strategy part of the major conditions strategy, and why we are looking at co-morbidities, is because, as the hon. Member for Tooting mentioned, people with mental health conditions have a shorter lifespan and, in general, the cause is typically a physical co-morbidity. It is essential that we look at these things together if we are to make progress on tackling disparities.

We have committed to publishing a new national suicide prevention strategy later this year, and we are engaging widely across the sector to understand what further action we can take to reduce cases of suicide. The new strategy will reflect new evidence and the national priority for preventing suicide across England, including action to tackle known risk factors and targeted action for groups of concern. We are also providing an extra £10 million over the next two years for a suicide prevention voluntary, community and social enterprise grant fund. This competitive grant fund will help to support the sector to deliver activity that can help to sustain services to help meet increased demand for support and to embed preventive activity that can help to prevent suicide and stem the flow into crisis services.

[Liz Twist]

Of course it is good that we will have a refreshed national suicide prevention strategy, and of course £10 million is welcome, but it is not out there yet. In the meantime, the £57 million that was earmarked for local work on suicide prevention has run out. Will the Minister consider making urgent interim arrangements to ensure that this vital work can continue until the strategy is published?

[Neil O’Brien]

I am conscious that we need to help the sector to maintain and grow its levels of service.

I finish by paying tribute to all those who do so much to support people’s mental health: frontline NHS staff, those working in the voluntary community and social enterprises, and all those who are quietly supporting a family member or loved one.

--- Later in debate ---

[Liz Twist (Blaydon) (Lab)]

The Minister spoke earlier about what the Government have done for the mental health service, but we have all known for far too long that people in mental health crisis are not getting the support that they need urgently. They need swift, accessible and effective support and treatment. I am glad that we in Labour have a clear and thought-through plan to address this issue and suicide prevention.

I want to start with some figures. The shadow mental health Minister, my hon. Friend the Member for Tooting (Dr Allin-Khan), has already touched on the national figures. The figures from my local trust in the north-east are also worrying. Just in the 2021-22 financial year, adults in mental health crisis spent more than 1,134 hours in A&E at Gateshead Health NHS Foundation Trust, while children in crisis spent 180 hours there. The North East Ambulance Service received 3,622 emergency 999 calls from people in mental health crisis. NHS Digital figures for 2022 showed that, in the north-east and north Cumbria ICB alone, 31,345 children and 70,770 adults were on waiting lists, and 12,845 patients had treatments closed without even receiving an appointment. Those staggering figures have been reflected nationally.

This morning, I met representatives from the charity YoungMinds, who told me that urgent referrals to CAMHS are the highest on record. Let us make no mistake: many of our young people are in acute crisis. Research by the charity shows that 43% of the young people turned down by CAMHS had experienced suicidal thoughts, psychosis or self-harm. As a result of having to wait so long, 26% had tried to take their own life.

In an intervention, I raised the concerns of mental health charities about the subsuming of the mental health strategy into the major conditions strategy. There is real concern that the voices heard in the mental health consultation will be lost and that a five-year major conditions strategy is too short to bring about the changes needed and to emphasise the cross-governmental work envisaged in the original plan.

As the Mental Health Foundation highlighted,

“public mental health has traditionally received extremely minimal funding”,

of an average of about 2% of the public health budget of local authorities. That has been accompanied by a cut of 26% in public health grants in real terms. The Mental Health Foundation notes that we cannot simply “treat our way” out of mental health problems. We know that they are formed by hard socioeconomic factors that the Government need to address, and that the poorest regions, such as mine in the north-east, see the highest number of suicides. The Government need to work on that.

As the chair of the all-party parliamentary group on suicide and self-harm prevention, I have the pleasure of talking with many local organisations that have been formed by people who have personal experience of suicide. To name just one, James’ Place is a charity that offers professional support to men in acute suicidal crisis. It currently has centres in London and Liverpool, but I am delighted to say it will be opening a centre in the north-east, where, sadly, we have the worst suicide figures in the UK. There is so much more I could say, but I wish to emphasise my wholehearted support.