Hospice Funding

James Sunderland Excerpts

Monday 22nd April 2024 Commons Chamber

[James Sunderland (Bracknell) (Con)]

I am humbled to be called in the debate. I commend my hon. Friends the Members for Hastings and Rye (Sally-Ann Hart), and for Darlington (Peter Gibson), for bringing the debate to the House, as well as the Minister for sitting through the debate and showing amazing resilience during a long evening.

Members who have spoken in the debate fall into broadly two camps. First, there are those who have had personal experience of hospices through family members who have suffered and needed those facilities. Their speeches have come across amazingly, with real pathos and depth, and I commend all hon. Members who have spoken so personally about their journeys. Secondly, there are Members like me who have not had personal experience of hospices but recognise the importance of what they do. If I may, I will talk about two important hospices for my constituency.

Thames hospice—it was first known as Thames Valley hospice—was officially opened by Her Majesty the Queen in November 1987 on Hatch Lane in Windsor. It has been serving my constituents and others in Berkshire since that time, and has shown amazing strength of character in supporting so many people.

With the Minister in her place, I contend that, as we have heard numerous times, we need to refine the funding models for hospices. In my view, the NHS needs to cough up a bit more support, but this is also about timing. Thames hospice is awaiting its funding settlement for 2024-25 from the ICB, with barely two weeks to go, so the issue is how much can be funded by the taxpayer, and about being notified of funding up front. That is really important, because it means that hospices can plan ahead for the year.

Thames hospice, having provided care for all that time, was in 2017 granted planning permission to build a new £22 million, state-of-the-art facility on a brand-new 8 acre site by Bray lake, just outside Maidenhead in the Royal Borough of Windsor and Maidenhead. That is important, because through the ICB, it serves many constituents in the east of Berkshire, including in Bracknell. I know of many constituents who have had fantastic care there. In January 2019, work began on construction. I visited earlier last year, when the site had been built. It was incredible, with so many fantastic staff, a café and dedicated services.

Thames hospice supports about 2,500 patients and their loved ones annually with high-quality medical and emotional support. This is all about making people’s lives easier, and making sure that their remaining time on earth is as dignified as possible. We should not underestimate or put a price or value on that. That is why we have a responsibility to fund hospice care properly.

As for the future, by 2030, 15 million people in the UK will be over 65 years old. Also, the number of young people with life-limiting neurological conditions has increased by 64% in the last 10 years, and the incidence of cancer in people under the age of 50 rose by 79% between 1990 and 2019. We should think about that. Those are really serious figures, and they mean that the demand for hospice services is likely only to increase over time.

In the past year, costs at Thames hospice have increased by 9%, with no commensurate increase in Government funding. We have heard something similar from other hon. Members this evening. To put a figure on it, Thames hospice has to raise £38,000 every day to subsidise the costs of care. That will increase to more than £50,000 a day by 2030, based on a 4% increase, year on year—and that is without even considering investment for growth in the future. The picture is similar elsewhere. To put it in perspective, Thames hospice needs £18.5 million for 2,500 people every year. That is really stark. As I mentioned, Thames hospice is the end of life care provider for the Frimley integrated care board in east Berkshire. It is of direct relevance to my constituents. I cannot thank the staff and the directors at Thames hospice enough for what they do.

I want to mention Sebastian’s Action Trust in Crowthorne, which is important because it provides palliative care for children aged between zero and 18 and supports their families. A key part of the support that the brilliant Sebastian’s Action Trust provides is memory-making support for the families who use the facility. It also continues to support the families once the child goes to end of life care. Losing a child is devastating anyway, but the fact that Sebastian’s Action Trust provides such brilliant support to families, even after that life event, is remarkable.

[Jason McCartney (Colne Valley) (Con)]

On the issue of funding for children’s palliative care, I am fortunate to have, in my neck of the woods in West Yorkshire, the Forget Me Not children’s hospice and the Kirkwood hospice. I also want to highlight the Together for Short Lives campaign ask, as other Members have done. The issue is not just sustainable funding, but surety of funding—a multi-year promise and confirmation of funding beyond ’24-25, so that children’s hospices can plan for the future, and continue caring for children with life-limiting illnesses and their families.

[James Sunderland]

I thank my hon. Friend for his timely intervention. As we know, palliative care is privately funded and not formally funded by the NHS. It cannot be right that such an important function is funded in a hand-to-mouth way. To prove that point, Sebastian’s Action Trust is to close its Crowthorne site, the Woodlands, later this year. A sale is expected in autumn 2024, because it cannot afford the care that it is giving to so many families, so it has to rationalise its estate and move elsewhere. In my humble view, the funding for the NHS, for our hospices and for palliative care is not enough.

[Andrew Rosindell (Romford) (Con)]

My hon. Friend is making a powerful case for the hospice movement, as all colleagues have done in this debate. Does he agree that every penny that the Government give to the hospice movement takes pressure off the national health service? Hospices are doing the job that, otherwise, the NHS would have to do. Will he join me in congratulating the Saint Francis hospice in the village Havering-atte-Bower in my constituency, which was established in 1975? It has for many years served people from the London Borough of Havering and the surrounding area. It is a magnificent organisation. The hospice movement does a fantastic job for the entire country, and it is time for the Government to do more.

[James Sunderland]

I commend all the staff in the Saint Francis hospice in Havering on what they do. It sounds remarkable. We have heard so many stories this evening of hospices and palliative care providers right across the country.

The message is clear: we need more funding. We must establish better funding models. We cannot rely so much on charities and donations. We must make sure that funding is provided up front. This is a life-and-death issue. Hospices take pressure off the NHS. The facilities at Thames hospice are state of the art; we can sweat the asset an awful lot more. Perhaps the underused capacity of hospices could sometimes be hired back to the NHS.

[Peter Gibson]

I want to make one final point in this final Back-Bencher contribution to the debate. Many people have called for multi-year funding settlements. That is not to make life easy for the hospices; it is just more sensible, so that they can plan into the future—sign leases, buy equipment, and train, recruit and retain staff. The request for multi-year funding settlements will allow them to put plans in place to provide the care that is needed.

[James Sunderland]

I thank my hon. Friend and I agree completely. Nobody can plan in a vacuum, so this is about more money, earlier money and the ability to plan so we know where the delta is.

I will conclude now. Madam Deputy Speaker, thank you for the opportunity to speak this evening. We need more money, Minister, and I know you will give it to us.

[Madam Deputy Speaker (Dame Rosie Winterton)]

I call the SNP spokesperson.

NHS Dentistry: Recovery and Reform

James Sunderland Excerpts

Wednesday 7th February 2024 Commons Chamber

[Victoria Atkins]

Again, we have heard a very loud performance from the hon. Gentleman—a typically loud performance. If only it had been as factual as it was loud. I have already set out, in response to the hon. Member for Ilford North (Wes Streeting), the difference between Labour’s plan and our fully funded plan to secure immediate and long-term changes. After 14 years of opposition, is this it?

[James Sunderland (Bracknell) (Con)]

As the Health Secretary will recall, we met recently to discuss dentistry in Bracknell, so I really welcome the plan that she has announced today. Will she please confirm, for the sake of absolute clarity, that a cornerstone of the recovery plan will be quicker and easier access to NHS dentists, and also that they will be properly incentivised to absorb all the patients who need support?

[Victoria Atkins]

Indeed, and it was a pleasure to meet my hon. Friend to discuss the issues facing his constituents. I hope he recognises that we will have those aims very much in mind in the delivery of the recovery plan. We will begin to see the roll-out of those 2.5 million more appointments in the coming weeks as the new patient premium takes hold.

Oral Answers to Questions

James Sunderland Excerpts

Tuesday 5th December 2023 Commons Chamber

[Dame Andrea Leadsom]

The right hon. Gentleman raises a completely artificial barrier. Smoking is totally preventable; it is the cause of one in four cancers and 75,000 deaths. It is unbelievably appalling. Obesity is a complex area and one that the Government are focused on. We need to tackle it, but it is entirely different.

[James Sunderland (Bracknell) (Con)]

Would the Health Secretary please agree to meet me to discuss improved access to GPs and dentists in Bracknell Forest and Wokingham boroughs?

[Victoria Atkins]

I will; it would be a pleasure.

Epidermolysis Bullosa: Drug Repurposing Trials

James Sunderland Excerpts

Tuesday 9th May 2023 Commons Chamber

[Gareth Bacon]

I agree with the hon. Lady. That was very much the story for Wendy, the lady I met in the shop, and she was not alone in that. It is particularly true when people are young and have EB but doctors are unable to diagnose it at that stage. They do not know why they have open and weeping sores. These things sometimes attract a smell as well, and as a result people are ashamed of their condition. It has a bad social stigma and is bad for their sense of morale.

The drugs would also have a significant economic benefit. For example, research by an expert dermatology professor at King’s College London found that, when used for EB, one of the drugs has been reported to reduce daily bandaging time from three hours to one by reducing the severity of the wounds, and to reduce skin itch by 60%. That in turn would save time and money for the NHS, and reduce stress on the family unit supporting the patient. Studies by the London School of Economics in 2016 and 2022 reported that EB has a wider economic impact, as parents and family members are currently obliged to reduce labour market participation due to the informal care of their loved one. The same study also revealed a higher prevalence of psychological and psychiatric symptoms among those with EB—that refers back to the point made by the hon. Member for Bath (Wera Hobhouse)—indicating a further tranche of support costs that could be reduced if treatments were improved. The most recent LSE study, published in September 2022, said that the annual cost per patient with dystrophic EB—the most severe form of the condition—is about £45,800, depending on the level of disability. That takes into account direct and indirect costs for patients and care givers. So the benefits are hugely significant, but, to enter the MRP process, the treatments in question will need to go through research trials to prove their efficacy in treating EB. To pay for that, DEBRA is seeking just £10 million from the Department of Health and Social Care, the NHS and the devolved Administrations to go with a further £5 million from its own fundraising campaign. That relatively small amount of money would do so much to address the misery caused by this awful condition.

[James Sunderland (Bracknell) (Con)]

I know a bit about EB. The headquarters of DEBRA are in Bracknell, and I have visited them on a number of occasions. DEBRA’s work is incredible; I am full of admiration for what it does. Having come across people suffering from EB, which is a terrible, dreadful, debilitating disease, I can say with complete authority that the money we are asking for today is an absolute drop in the ocean in terms of the UK’s overall health budget. Actually, we need to be throwing the kitchen sink at this and doing what we can to repurpose these drugs to give the patients and sufferers—these fantastic people—a better quality of life. I urge the Minister please to do whatever he can to ensure that £10 million is just the start. Does my hon. Friend agree that we need to do everything possible for these sufferers?

[Gareth Bacon]

I am extremely grateful to my hon. Friend for his intervention and for hosting a reception for EB and for DEBRA here in June, I believe.

[James Sunderland]

It is on 19 June.

[Gareth Bacon]

You heard it here first—19 June. I will attend, and I very much hope that hon. Members will join us in the Terrace Pavilion.

As I conclude my remarks, I have three requests of the Minister. First, will he agree in principle to the Government supporting this request for funding? Secondly, I understand that the MRP process tends to focus on generic drugs, but most of the treatments identified as candidates by DEBRA are not generics. Will he therefore confirm that the MRP will consider non-generic drugs for potential use to treat EB? I have a list for him, in case he needs to see it. Finally, will he agree to meet me and representatives of DEBRA to discuss these proposals for drug repurposing and the many other ways in which we can support patients with EB and alleviate their often devastating symptoms?

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

I congratulate my hon. Friend the Member for Orpington (Gareth Bacon) on securing this important debate, which has been helpful to highlight this serious condition and the efforts to find treatments. I thank him for sharing the experience of his constituent, Wendy.

I very much recognise the challenges faced by people and families affected by epidermolysis bullosa, which as he rightly pointed out is a rare disease. It is estimated to be diagnosed in one in 17,000 babies born in the UK. Rare diseases are defined as those affecting fewer than one in 2,000 people and, although they are individually rare, sadly, these conditions are collectively all too common. One in 17 people will be affected by a rare disease at some point in their lifetime. In the UK, that amounts to more than 3.5 million people. It is therefore vital that these people have access to the right care, the right treatments and the right support.

I turn to the rare disease strategy. The “UK Rare Diseases Framework”, published in 2021, embodies our commitment to securing a better future for all people living with rare diseases. It sets out our vision on how to improve the lives of people with rare diseases through four vital priorities. They are helping patients to get a final diagnosis faster; increasing awareness among healthcare professionals; better co-ordination of care; and improving access to specialist care, treatments and drugs. To deliver on the Government’s ambition, all four nations have published rare diseases action plans, which set out our tailored approaches to deliver the aims of the framework in ways that are most effective for each nation’s populations and healthcare systems. In England, we published the second rare diseases action plan on 28 February, in which we set out 13 new actions to drive improvements across the health system.

My hon. Friend rightly pointed to research funding. The UK is internationally recognised for our leadership in research, the excellence of our scientific institutions and our fantastic healthcare system. We must continue to utilise those resources to benefit those affected by rare conditions. The Government are committed to increase spending on research to £22 billion by 2026-27, moving towards our target of investing 2.4% of GDP in research and development by 2027. Alongside industry and medical research charities, the Government primarily fund research into rare conditions such as EB via UK Research and Innovation and the National Institute for Health and Care Research.

Through the NIHR, the Department of Health and Social Care invests over £1 billion a year to fund, enable and deliver world-leading health and social care research. Pioneering research is a cross-cutting theme of the rare diseases framework. We recently announced significant new funding of over £12 million via the Medical Research Council and NIHR for a rare disease research platform. The hon. Member for Strangford (Jim Shannon) rightly referred to the importance of Government-backed research funding. Since 2019, the NIHR has funded three studies specifically into EB, with a total award value of over £4 million, and we have supported the delivery of more than 25 studies.

Research is vital—that has been well articulated today—but treatment is, too. I agree with my hon. Friend the Member for Bracknell (James Sunderland) that therapeutic treatments are also a part of the solution and are absolutely key to improving the quality of life for EB patients. As my hon. Friend the Member for Orpington said, unfortunately there is no cure for EB. However, as he also rightly pointed out and I am very pleased to say, the National Institute for Health and Care Excellence is currently evaluating two treatments: birch bark extract, as he pointed out, for treating skin wounds; and the gene therapy—I am afraid I am will not make a much better job of pronouncing this than him—beremagene geperpavec. I apologise to all medics and research professionals for that pronunciation; I am not a medic. If either of those treatments is given a positive recommendation by NICE, NHS England will ensure that service provision is in place to deliver it into the hands of those affected by EB.

My hon. Friend also rightly pointed out the drug repurposing process, which could be absolutely life-changing for people with EB. There is substantial interest in repurposing existing medicines to treat rare diseases, as repurposing is often quicker and less costly than developing new medicines. Our medicines repurposing programme identifies and progresses opportunities to use existing medicines in new ways that are not included in the current licence, with the aim of improving clinical outcomes, patient experience and, also importantly, value for money. As one approach to identifying candidate medicines for repurposing—my hon. Friend touched on this—the NIHR has an innovation observatory, which searches for suitable clinical trials nearing completion. That routine scanning has identified a French trial investigating the use of—I again apologise for my pronunciation, Madam Deputy Speaker—ixekizumab, a licenced treatment for other conditions such as psoriasis, for simplex generalised severe EB. The medicines repurposing programme is monitoring the study and will use the results when available to assess whether the drug is a suitable candidate for the programme.

My hon. Friend mentioned the MRP and evidence of efficacy. I want to clarify that for a medicine to enter the MRP programme there has to be some evidence of efficacy and safety, but—this is the important point—conclusive proof of efficacy and safety is not required. Projects that need a further clinical trial are potentially eligible to enter the programme, at which point we would liaise with the NIHR about trial funding.

My hon. Friend’s first specific ask was on funding. This is always the difficult bit, because it would be easy to say yes. He makes a compelling case, but I do not think he would expect me—nor would it be appropriate—to commit to funding at the Dispatch Box, though his point was very well made. I will look into it carefully and discuss it with officials, and I will be happy to meet him.

I re-emphasise that the Government very much encourage healthcare professionals, voluntary sector organisations—some of which my hon. Friend mentioned—and companies to propose candidate medicines for the medicines repurposing programme. The details and eligibility criteria are available on the NHS England website. As I said, I would be happy to meet my hon. Friend to discuss that further, which was his second request. Further to that, my understanding is that the medicines repurposing programme has invited the EB charities DEBRA and Cure EB to meetings to discuss specifically the repurposing of medicines for EB. The timing of this debate could not be more spot on, as I believe the DEBRA meeting is scheduled for tomorrow. Those meetings are happening, and I would happy to meet my hon. Friend. He certainly has his finger on the pulse.

[James Sunderland]

Since the Minister is clearly on a roll, if he is available will he commit to come to the DEBRA reception here on 19 June?

[Will Quince]

If I am available I would be happy to do that. I thank my hon. Friend for his support for that charity, which is based in his constituency but works nationwide. The support that constituency Members of Parliament provide to charities through this place should not be underestimated. If I am able to attend, I will.

Oral Answers

James Sunderland Excerpts

Tuesday 25th April 2023 Commons Chamber

[James Sunderland (Bracknell) (Con)]

9. What progress his Department has made on the delivery plan for recovering urgent and emergency care services.

[The Secretary of State for Health and Social Care (Steve Barclay)]

The urgent and emergency care recovery plan sets out how we will invest more than £1 billion in increasing capacity, including 800 new ambulances, an additional 5,000 core beds and a further 3,000 virtual wards, to provide more than 10,000 out-of-hospital care settings.

[Steve Barclay]

My hon. Friend is right to highlight the importance of UTCs. Nationally, they are above the national standard: 95.5% of patients are seen within four hours. He is a highly effective campaigner on health issues—he helped to secure the £2.8 million of investment for a new paediatric emergency department in his local area—and I know that he will be making a similar case to his local commissioners.

[James Sunderland]

Ultimately, the best way to improve urgent and emergency care services is through new build, purpose-built hospitals. Can the Secretary of State confirm where we are with the Royal Berkshire Hospital and Frimley Park?

[Steve Barclay]

As the House knows, I am extremely committed to modern methods of construction and modular building capacity. We are using that as a central component of our new 40 hospitals programme. My hon. Friend will know that the RAAC—reinforced autoclaved aerated concrete—hospitals are very much part of that discussion, not just at Frimley but at King’s Lynn, at Hinchingbrooke and in a whole range of other settings. He will also know that we are in a purdah period, so we are constrained in what we can say, but we will have more to say on this very shortly.

Oral Answers to Questions

James Sunderland Excerpts

Tuesday 19th April 2022 Commons Chamber

[Sajid Javid]

As the hon. Gentleman is aware, I know his constituency well; it is my birthplace. He might also know that just a couple of months ago I visited his constituency and met members of the local community at the Deeplish community centre to talk about exactly what he has rightly raised today: the importance of tackling inequalities in Rochdale and beyond. We will set out our plans in our upcoming health disparities White Paper.

[James Sunderland (Bracknell) (Con)]

T9. The Cass review interim report found that to date there is a profound lack of evidence on the best approach to treat gender dysphoria in children. Does my right hon. Friend share my concern that in spite of this the NHS insists on making a child’s expressed gender identity the start-point for treatment, and my surprise that the NHS has chosen so far not to track patient outcomes, particularly for under-18s?

[Sajid Javid]

I share my hon. Friend’s concerns, which is why the NHS commissioned this review from one of our top paediatricians. It is already clear to me from her interim findings and the other evidence I have seen that NHS services in this area are too narrow; they are overly affirmative and in fact are bordering on ideological. That is why in this emerging area, of course we need to be absolutely sensitive, but we also need to make sure that holistic care is provided, that there is not a one-way street and that all medical interventions are based on the best clinical evidence.

Dementia Research in the UK

James Sunderland Excerpts

Thursday 10th February 2022 Commons Chamber

[Debbie Abrahams]

I similarly add my sincere condolences to the hon. Member. I could not agree more with his sentiments. It does affect everybody and it is moving to hear how different hon. Members have been affected by their loved ones. I want to provide hope as well, and I hope that what I go on to say will provide a bit of comfort to him. We must do more on it, though, must we not?

The Government have said that we can expect to see their plans on dementia research in the national dementia strategy. I am grateful to see the Minister in his place, because we have worked together on dementia in the past and I know that he feels as passionately about it as I do. Given that there has been a real hiatus from the manifesto in 2019 to where we are now, and that we have actually slipped backwards, I would be grateful if he could commit to discussions with the Treasury about an announcement in the spring statement next month. That is way overdue and we must provide hope to hon. Members on both sides of the Chamber.

It would be remiss of me not to mention the success of previous Governments in the last 15 years. We had our first dementia strategy in 2009. My right hon. Friend, now the Mayor of Greater Manchester, was the author of that fine strategy. We must also pay tribute to the former Prime Minister David Cameron for his work on it. He managed to increase dementia research from just over £28 million to £82 million during his incumbency. Government-led initiatives, such as his challenge on dementia, establishing the UK Dementia Research Institute, and leading the world during our 2014 G8 presidency by hosting the world’s first dementia summit, put us on a good footing to lead the world in this field. We need to build on that, but as I say I fear we are slipping backwards.

I mentioned the importance and urgency of fulfilling that commitment, but I also want to stress the economic argument. We heard last week, in the Government’s levelling-up White Paper, about the huge potential economic benefits of investing in research and development, particularly in the life sciences. Our life sciences sector in the north-west, spanning from Liverpool all the way to Hull, has magnificent research institutes and organisations. We know that extra Government investment acts as a catalyst to unlock private funding. A study conducted by Oxford Economics in 2020 found that each £1 of public money—Government money—is at least doubled. If we look at what that would mean for dementia research, a moonshot investment of £800 million over the next decade could unlock £1.6 billion to £1.8 billion of additional private investment. This is an answer to the levelling-up issue to which the Government have said they are committed. I urge them. This is a source of addressing some of the issues they are facing on that particular policy promise.

It was because of the lack of Government movement on the issue that last year the all-party parliamentary group decided to undertake a dementia research inquiry. As well as making the case for the moonshot, the resulting report, “Fuelling the Moonshot”—do look at it on the Alzheimer’s Society website—set out how the money could be best used to support the sector. Throughout the inquiry, we sought to look at the entire dementia research system. It is important to recognise that, when we talk about dementia research, we do not just mean exploring for cures and treatments, although that is obviously vital; it is also about researching diagnostic methods, how dementia can be prevented and exploring how people with dementia can best be cared for.

Over the course of the inquiry, we took written and oral evidence from hundreds of people living with and affected by dementia, academics, charities, research institutes and research participants. I thank everybody who took part. We could not have produced the quality report we did without their input. They ranged from Exeter, where researchers are investigating how we can improve the quality of life for people with dementia, to Edinburgh, where leading academics are researching the links between dementia and head traumas in sport. What we found was a rich, diverse and passionate set of people working tirelessly to improve the lives of people with dementia and their families, but they need our support and they need Government support.

[James Sunderland (Bracknell) (Con)]

I was not going to speak today because of a clash with a Bill Committee, but I have been asked by several constituents to come in to listen to the debate. The hon. Lady is putting forward a persuasive case. I want briefly to pay tribute to the hidden army of carers across the UK: the current estimate is that there are about 6.5 million of them. They are perhaps saving the Treasury over £100 billion in lost wages. Does she agree that we should do more to increase carer’s allowance and to formally recognise those very selfless and diligent people?

[Debbie Abrahams]

I thank the hon. Member for his intervention. I am very grateful to him for coming here. I agree totally with the points he has made to acknowledge the army of family carers who support people living with dementia and the fact that they are supported by a pittance. We need to do much, much more in that regard.

I was coming on to talk about the importance of the work of charities such as Alzheimer’s Research UK and the Alzheimer’s Society. About half of all the research undertaken is as a result of the funding raised by the Alzheimer’s Society. As many would expect, like other charitable sectors, medical research charities were hit particularly hard as a result of the pandemic. The Association of Medical Research Charities estimated that the pandemic has caused a shortfall of UK medical research investment of at least £310 million. That huge loss of income has of course impacted on funding decisions for these charities. The Alzheimer’s Society had planned to fund two research calls last year, but it was unable to do so because of its financial situation. The same thing was felt across the entire research community. An Alzheimer’s Society survey found that 85% of researchers reported that the pandemic had led to fewer funding opportunities being available for them.

Similarly, like those in nearly every UK sector, dementia researchers have been hard hit by the effects of the pandemic. For many, lockdowns meant that their labs had to close and participants could no longer take in part in trials. I spoke to a researcher in Manchester who had spent months growing brain cells for her research, only for them to have to be thrown away—months of work wasted. The pandemic also had an impact on the work of researchers who worked outside labs. For example, it affected those working in areas that require face-to-face contact with participants—including people with dementia—such as drug, clinical and care intervention trials.

Understandably, many clinical staff were redeployed to work in the frontline NHS throughout the pandemic, and that heavily impacted on the progress of dementia research. An Alzheimer’s Society survey from April 2021 found that almost a quarter of its funded researchers said that they or another team member had been redeployed in the NHS or in frontline services during the pandemic. We know that much of the clinical research that is undertaken depends on the effective clinical running of routine NHS dementia services, and many of those were seriously affected during covid.

One area I was particularly concerned to hear about during the inquiry was the impact of the pandemic on early career researchers. These are researchers who are at the PhD or post-doctoral stage of their careers. For many of them, much of their time and focus is taken up with concerns about where their funding will come from, or whether they will be able to progress any further. One researcher told the all-party group that

“typical…contracts go on for 3 years, and you have to spend a lot of your time in year 3 applying for your next tranche of funding—affecting your productivity.”

She went on to say that

“instead of concentrating on research, academics are having to worry about their mortgage.”

Of course, that has only been exacerbated by the pandemic.

There was a concern that having to suffer a break in their research left today’s early career researchers uncompetitive in the job market. There is a fear among those researchers that, when they apply for funding for the next stage of their career, they will not be looked on as favourably as others. In May 2021, the Government announced a fund of £20 million to support those charity-funded ECRs. I would be grateful if the Minister, in his closing remarks, responded to the recommendation that we made in our inquiry report on how we can further support these important researchers, without whom we will not see the next breakthroughs. They are absolutely vital and should not be overlooked.

Throughout my time as co-chair of the all-party group, and particularly during the inquiry, I have been lucky enough to hear at first hand from people living with dementia, and from their families. During the inquiry, I spoke to inspiring people who live with dementia or who have cared for people with dementia, and who gave up their time to participate in dementia research. I was struck by the sense of empowerment that this gave them. They know that the activities that they are undertaking may not help them directly, but they recognise that the research may support better care, treatments and even a cure for someone in the future.

To ensure that the UK is a world leader in dementia research, we must be able to attract participants to take part in trials. As one research participant put it:

“Too often research feels something that is just done to someone, rather than something that people can be a part of.”

People often do not know how they can be involved in dementia research. I want to draw everyone’s attention to Join Dementia Research UK. I encourage everyone, including hon. and right hon. Members, to sign up to it. It can link them up to research projects happening across the UK, and that is how we will help to make progress. The service is currently trialling writing to people with dementia after their diagnosis to invite them to participate in research. I would be grateful if the Minister said a little bit about how his Department could support Join Dementia Research UK with its pilot and help to roll it out.

Former England rugby union player Ben Kay is one such research participant who has also taken part in our inquiry. He has spoken quite openly about how important it is for him to be involved in the Alzheimer’s Society’s funded research programme that investigates the links between rugby and dementia. I am sure many Members here will be familiar with this not just in rugby, but in football. Nobby Stiles springs to mind, but we also know that Bobby Charlton, a particular hero of mine, has been affected. We need to understand head trauma in all forms of sport: not just those that use the different shaped balls that boys in particular play on football and rugby fields, but other sports as well. That issue, the Minister will know, has been of growing interest, particularly in the media. Again I would be grateful if he said how, with his cross-departmental work, he has been able to support this. Extra funding through the moonshot could really expand our knowledge of that area, so we can ensure that everybody can participate in sport safely. It is also important to ensure that people understand the risks and what steps they can take to minimise them, which is another area of research being undertaken.

One of the most exciting areas in dementia research at the moment is diagnosis. There is a real prospect that very soon we could see blood biomarker tests readily available to help to ensure people receive not just an accurate, but an early diagnosis, and I am talking many decades before we actually see the physical, behavioural and cognitive symptoms that we are familiar with in dementia. These can be cheap and easy to administer, much like the countless other blood tests that happen day in, day out. Again, I would be very grateful if the Minister responded on how we can make sure that, as those come on line, we can make them readily available.

Before I close my remarks, I would like to highlight some of the excellent research already taking place in the UK, particularly through the UK Dementia Research Institute. Set up 2017, this is the biggest investment the UK has ever made in dementia, thanks to the £290 million donation from founding funders the Medical Research Council, the Alzheimer’s Society and Alzheimer’s Research UK. I met the director of the institute during the inquiry and heard of the important work that it is doing.

The UKDRI has over 650 researchers working towards treatments and technologies to improve the lives of people living with dementia, with sites across all parts of the UK, including London, Cardiff and Edinburgh. The director, Professor Bart De Strooper, estimated that about a third of his researchers had been attracted to the UK from other parts of the world because of its infrastructure and research capabilities. That shows what a leading role the UK can be proud to play in this area—a world leader. With the Government funding for UKDRI running up to 2023, at which point progress will be reviewed, it is important that this vital asset in the UK’s dementia research system is supported to continue its work. We are only a year away from that, so I hope the Minister is able to say more about that.

There is also great research happening across the UK in the area of care research. We heard from Professor Dame Louise Robinson, who leads an Alzheimer’s Society-funded centre of excellence in Newcastle University. These centres of excellence, which also have sites in Exeter and London, bring together leading researchers to investigate how people with dementia can best be cared for. I am conscious of the interventions that hon. Members made earlier. That research is valuable to those people who currently have dementia in looking at how we can make sure they are properly cared for.

What is concerning is that, although there is a plethora of evidence of how effective care research is, it is not being used. In contrast to the principle of evidence-based medicine and evidence-based care, it is not actually being used, which is staggering. Again, I would be very grateful for the Minister’s thoughts on that. Can I just mention this figure? In a review of 170 training manuals for person-centred care in dementia, researchers found that just four—four—provided evidence about what methods worked when tested in a research setting. That is what we are using to train our carers. There is an evidence base, yet it is not being used to underpin that training. We need to do much better on that.

The UK has come a long way in improving our dementia research sector, but it is imperative that we build on that. People living with dementia and their families deserve to see the Government delivering on their general election commitment to dementia moonshot funding and leadership in dementia research such as we saw with the covid vaccine development. I urge the Minister to liaise with the Treasury in the run-up to the spring statement next month and to deliver for the dementia research community and for the country. We can be a world leader in the field, but that will need the Government to fulfil their commitments.

Special Educational Needs and Children’s Mental Health Services

James Sunderland Excerpts

Wednesday 9th February 2022 Westminster Hall

[James Sunderland (Bracknell) (Con)]

It is a pleasure to serve before you, Ms Fovargue. I commend my constituency neighbour in Berkshire, my hon. Friend the Member for Newbury (Laura Farris), for securing the debate. I also pass on the best wishes of our right hon. Friend the Member for Maidenhead (Mrs May), who regrets that she cannot be here today. She asked me to point out that she fully supports every effort to increase the provision of mental health support for children in Berkshire and beyond. Finally, I want to welcome Dr Priya Singh, who is the new chief executive of the Frimley integrated care system and who I met yesterday to discuss this issue.

Time is short but, in brief, local NHS CCGs spent £12 billion in 2020-21 on mental health support. NHS England spent a further £2 billion, making a total of just over £14 billion. That is great, but I was horrified to learn that CCGs spent 14 times more on adult mental health support than on services for children. We need to invest much more heavily in that area.

East Berkshire, where I reside, has £2.6 million in funding for children’s mental health, including £1.4 million for CAMHS and £200,000 for eating disorders. That is not enough, which is my opening contention to the Minister. The Berkshire Healthcare NHS Foundation Trust, based in Bracknell, does a fantastic job, but the demand for mental health assessment in children has gone up by 60% in the past five years. Since the pandemic, it has gone up by a further 27%. We have a problem. A constituent wrote to me only yesterday to tell me that the current wait for a child to be seen by CAMHS is 30 months; prior to the pandemic it was 18 months. Families are being left unsupported at this time.

As politicians, we spend lots of time admiring the problem, but perhaps not enough time thinking about the solution. What do we need to do? The first thing I would say to the Minister is that the SEND review is still awaited. It was promised last year and has failed to materialise. Will she please ensure that we get it as soon as possible? We also need to invest in our children with SEND as never before. That requires money, patience, determination and a much clearer Government strategy.

Why might that work? By providing the right care in the right settings we can give our children the focus they need to be productive, employable, law-abiding and responsible citizens. Prisons are sadly full of people who have made the wrong decisions or acted impulsively, perhaps because they were not diagnosed at an early age. Let us invest in more specialist educational settings, so that people’s needs can be addressed. Yes, that is expensive and resource-heavy, but the cost of not doing so will always be greater, and this is non-discretionary spending.

I would like to see every local authority in the UK comprehensively reviewing its SEND provision, so that it becomes available in every area. Specialist and dedicated settings are the way forward for those who need them. We need to give our teachers better training with education, health and care plans. Those should not become a magic bullet—a passport for the lucky few—but a rightful passport for every child to get the support they need.

Lastly, CAMHS across the UK need 20,000 volts put straight through them. For families to wait two and a half years for a consultation is not only immoral but frankly inept. The irony will not have escaped anybody here that a GP cannot prescribe medication for ASD, ADHD, oppositional defiant disorder, Asperger’s or any other mental health condition, without a diagnosis from CAMHS. We have to focus on CAMHS right now.

To conclude, let us please get spending, diagnosing and treating, and let us give all our children, not least in Berkshire, the future they deserve.

Integration White Paper

James Sunderland Excerpts

Wednesday 9th February 2022 Commons Chamber

[Edward Argar]

We have had these debates before. The hon. Lady knows that the pace of privatisation was fastest under the last Labour Government, when the increase in spend on the private sector was much steeper. We have always been clear in our belief in the founding principles of our NHS, which is free at the point of need, but we have also been clear, as have every other Government since the foundation of the NHS, that there continues to be a role for voluntary sector organisations and private sector providers in that context.

On the hon. Lady’s final point, it is important, as in this White Paper, that we bring out the opportunity to help increase knowledge and share skills across the NHS, local authorities and the voluntary sector.

[James Sunderland (Bracknell) (Con)]

Given this excellent statement, it would be remiss of me not to thank the Minister publicly for the decision to retain the Frimley integrated care system, which was absolutely the right thing to do.

Will the Minister outline his plans for lessons from the best-performing ICSs to be shared across all ICSs, so that we can keep costs down and improve efficiency right across the network?

[Edward Argar]

My hon. Friend knows, by virtue of the outcome, the persuasive and compelling case made by him and other right hon. and hon. Members from both sides of the Chamber in respect of Frimley ICS and its boundaries. As so often in this place, my view is, “If you ain’t broke, don’t fix it,” and his ICS is doing a fantastic job and other ICSs can learn from its success. Mechanisms and organisations through which chairs of ICSs get together and share best practice already exist, but we will continue to examine whether that could be better systematised, so that best practice can be disseminated more widely.

Covid-19: Purchasing Effort

James Sunderland Excerpts

Thursday 3rd February 2022 Commons Chamber

[Edward Argar]

In any circumstance where a contractual obligation has not been met or where goods that have been supplied do not meet that—I am not suggesting that is the case in this situation—we will look into it. The hon. Gentleman mentions company accounts, but that is a matter for the company and its filing of accounts; it is not a matter for Her Majesty’s Government.

[James Sunderland (Bracknell) (Con)]

There has been a lot of unhelpful speculation about loss and wastage of PPE in recent weeks. Some of this speculation is blatantly false, and it is important that we do not overly politicise the issue, because the Government acted to do the right thing at the right time. The use of language is also really important. Does the Minister agree that this is not about outright loss and that it is about accounting write-down?

[Edward Argar]

My hon. Friend puts his finger on the issue absolutely. I mentioned in response to the hon. Member for Worsley and Eccles South (Barbara Keeley), who is no longer in her place, that a small proportion of this £8.7 billion went on PPE that did not meet the standard, and we continue to pursue those contracts and investigate them. However, my hon. Friend is right to say that the vast majority of this money purchased PPE that was delivered and is usable, and the difference in money reflects the fact that we bought at the height of a global pandemic, doing whatever was needed to get the supplies we needed. Of course, in the two to two and a half years since, that market has stabilised, with significantly more manufacturing also in this country.