Stem Cell Transplant Patients

Jim Shannon Excerpts

Monday 12th June 2023 Commons Chamber

[Mark Tami]

I thank my hon. Friend for making that very important point. I was talking about how much the costs were back then, but clearly people going through the process now are experiencing what we term the cost of living crisis, which is affecting everyone.

[Jim Shannon (Strangford) (DUP)]

rose—

[Mark Tami]

I see that the hon. Member—I will call him my hon. Friend—wants to intervene.

[Jim Shannon]

I congratulate the hon. Gentleman on bringing forward the debate. I spoke to him before, because I realised that he was bringing forward an issue close to my heart, not personally but for my constituents. The Anthony Nolan charity does spectacular work throughout all of the United Kingdom of Great Britain and Northern Ireland, including my constituency of Strangford.

The most recent statistics show that 70% of patients—some of them are from Strangford—have considered returning to work earlier than advised due to financial concerns, jeopardising their recovery. Does the hon. Member agree that there is an incredible delay in assessments and decisions for social security at the moment, and that if more effort were made by the Government and the Minister to ensure that they were done on a timely basis, some undue stress would be taken off people awaiting transplants? Ultimately, they would not feel that they had no choice but to go back to work when clearly they should not do so.

[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.

--- Later in debate ---

[Neil O’Brien]

I would agree with the hon. Gentleman. I was talking about one scheme, the healthcare travel costs scheme, but patients might also be eligible for non-emergency patient transport, on which we spend about £500 million a year across England. We will continue to look closely at the future of that, not least because of the hon. Gentleman’s comments this evening.

[Jim Shannon]

Patients in my constituency who come to me feel almost compelled to go back to work because they do not have the finances, but they cannot do so because they are not fit enough. Could the Minister’s Department ensure that those people who find themselves in difficult financial circumstances have someone to speak to who could perhaps direct them through the process so that they can get help?

[Neil O’Brien]

The hon. Member makes a good point, and I am happy to continue this conversation with him after the debate. He always provides thoughtful ideas and I am keen to continue talking about that one with him.

For those people who are going through all this at the moment, I have mentioned some of the schemes that are available for transport, such as the healthcare travel costs scheme and non-emergency patient transport, but we will continue to look at those to make sure that they are adequate to get patients to the specialist treatment they need.

In closing, let me again thank the right hon. Member for Alyn and Deeside for securing today’s really important debate and for his thoughtful contribution. Stem cell patients and their families and carers show tremendous courage in the face of incredible challenge, and we will continue to do whatever we can to support this vulnerable community.

Question put and agreed to.

National Carers Week

Jim Shannon Excerpts

Thursday 8th June 2023 Commons Chamber

[Dame Caroline Dinenage (Gosport) (Con)]

I beg to move,

That this House has considered National Carers Week and respite for carers.

I thank the Backbench Business Committee for allowing us time to debate in the House today the important issue of unpaid carers. I thank, in particular, those Members who supported my application for the debate, including the right hon. Members for Kingston and Surbiton (Ed Davey) and for Dwyfor Meirionnydd (Liz Saville Roberts), and the hon. Members for Bolton South East (Yasmin Qureshi), for Strangford (Jim Shannon), for Brighton, Pavilion (Caroline Lucas), for Motherwell and Wishaw (Marion Fellows) and for St Albans (Daisy Cooper).

As all hon. Members and those watching the debate will know, it is taking place during Carers Week, which is held each year to raise awareness of those caring unpaid for family and friends who are living with a disability or who are frail or unwell. It is led by Carers UK but supported by Age UK, Carers Trust, the Motor Neurone Disease Association, Oxfam GB, Rethink Mental Illness and the Lewy Body Society. I encourage everyone who does not already know to go and find out more about the brilliant work of all those organisations.

The latest census data from 2021 shows that millions of people—in fact, 5.7 million people across the UK—are currently providing some form of unpaid care for a friend or family member who, due to illness, disability, mental health or an addiction, cannot cope without their support. The majority of people providing that care are women. Indeed, many of us may be personally caring for someone, or will have someone in their family, or will know of friends or neighbours, who go to great lengths to support people they love. There are virtually no families untouched by this responsibility across the country.

I speak today as co-chair of the all-party parliamentary group on carers. I am a former Minister for care and had responsibility for unpaid carers when in Government. However, my first experience of this came when my mum was a carer for my grandmother, who was living with dementia. At the same time, I had just had my first baby—he is now 20. My mum was attempting to support me in bringing up a small baby and my grandmother who was living with dementia. She was part of the generation of sandwich carers we see across the UK, who are sacrificing their own health and wellbeing, their own relationships and their own profession to show such love and dedication for someone else.

We know that caring can be an incredibly profound experience. For many carers it is a very positive experience that enables them to build a very special bond with those they care for. In the vast majority of cases, it is driven simply by love. But we also know that it can take its toll on their own health and wellbeing. Caring can take such a different variety of forms. It can be anything from really intimate personal care to quite complex healthcare, right the way through to the emotional support of being a stable companion and providing encouragement to the person they care for. The care can be utterly lifechanging for those who receive it. One person said to me:

“The difference she makes to my life is unbelievable. She has given me back the freedom to actually go out and enjoy my life.”

However, we also know that caring can be extremely complex, and there is no denying that it can be exceptionally challenging as well. Indeed, too often the efforts that carers go to, to keep those they love safe and well, leaves people exhausted, burnt out and struggling to live a life beyond their caring responsibilities. As a result, many carers are extremely concerned and worried about the future. Beverly told me about her caring responsibilities and the impact they have on her life. She said:

“I am a full-time carer to my son who has Down’s syndrome and my husband who has Parkinson’s. By full time, I mean every hour of every day, day and night. I do it because I love them and I want them to have as good a life as possible. It is a never-ending round of jobs like cutting meals, making sure meds are taken, washing, appointments, making sure they are appropriately washed and dressed—and that is without having elderly parents to support. The sad thing is that you also forget to look after yourself.”

That is one of the biggest messages I want to get across today. Many carers like Beverly find that their relationships are impacted by their caring responsibilities because of a lack of support and recognition. That can lead to social isolation and mean that carers who are struggling to balance paid work and unpaid care have to leave the labour market or reduce their hours of work.

There are also significant financial costs associated with caring. Carers often use their own incomes and savings to pay for support services and care equipment for the people they care for. We also know that carers can face poorer health outcomes than non-carers, with a high proportion struggling with their own physical and mental health problems, and experiencing very low levels of wellbeing.

[Jim Shannon (Strangford) (DUP)]

I commend the hon. Lady for securing the debate. She is right that there are so many unpaid carers across the whole of the United Kingdom of Great Britain and Northern Ireland. My brother was involved in a motorbike accident some 19 years ago, and my mother, my wife and my son all look after him. Conservative estimates say that £162 billion per year is saved through unpaid care. That is just one example of the vital nature of carers. The hon. Lady refers to the impact on those who care: the pressures psychologically, financially, emotionally and physically. Does she agree that some consideration must be given by Government for respite care? I know how important that is to some of my constituents. I suspect she will confirm that when she replies to me, but I think something needs to be done there.

[Dame Caroline Dinenage]

The hon. Gentleman is absolutely right. Respite care comes up time and again as one of the big asks for unpaid carers. They want to carry on doing the role they are doing. They deeply love the people they are caring for. They take a huge amount of personal responsibility and pride with the care they are giving, but they need that little bit of support. Around the time of covid, in particular, we saw many, many unpaid carers going on for months, years even, without the ability for any kind of respite. The figure he quotes is crucial: £162 billion a year is the value that unpaid carers are saving our health and care system. That is an incredible amount of money. It is like a whole separate, second NHS, saving that amount of money. The huge pressures placed on the other NHS we have result in delays for unpaid carers in obtaining the primary and secondary healthcare appointments that they need. The record demand for our social care services means that carers are not getting the support that they need.

I want to spend a little time exploring some of those challenges in more detail. Other Members across the House will add their own voices. As I noted earlier, many carers are struggling with poor mental and physical health. According to Carers UK research, one in five carers says that their physical health is bad or very bad, 30% suffer from poor mental health and over a quarter say that they often or always feel lonely. Carers provide many hours of support for the people they care for, but very few are able to take a break from their caring. That results in tiredness and, in some cases, exhaustion and burnout. As the hon. Member for Strangford said, worryingly, 41% of carers have not taken a break from their caring role in the last year. A carer called Anton told me about the strain that caring is placing on him:

“It is hard, often draining and mentally and emotionally painful work, bordering on damaging. Due to my responsibilities and the amount I am depended on, I am often anxious, feel hopeless and depressed.”

Carers are not getting the support that they need from our health and social care systems, as both systems are under intense and increasing pressure. Many carers have experienced delays in accessing healthcare appointments and services. One fifth of carers who request a GP appointment have to wait more than a month to see a doctor, and over a third have had to wait more than a year for specialist treatments or assessment. That causes additional stress and anxiety, and results in many feeling isolated or forgotten about.

This year, only a quarter of carers said that they had undertaken a carer’s assessment in England—a statutory right under the Care Act 2014. Of those who received an assessment, many were concerned that it did not lead to any improvements in the support provided to them. Could the Minister outline what she is doing to ensure that those carer assessments are not only conducted but conducted properly and that the outcomes are delivered? In fact, 39% of carers said that they did not even know what a care assessment was—that is the severity of the problem. A carer called Trevor told me:

“I get no support whatsoever. It has taken nearly 4 years to get a carer’s assessment from the Local Authorities which is now imminent. I have no expectations whatsoever.”

What is the Minister doing to communicate with local authorities to make sure that those important carer’s assessments take place? Debbie contacted me to tell me:

“I’ve had no support whatsoever. Support seems to consist of ticking a box to say I’m a carer but nothing more.”

It is just not good enough.

I want briefly to touch on the financial impact that caring can have. The cost of living means that carers currently face unprecedented demands on their finances. Concerningly, more than half of carers say that they are extremely worried about managing their monthly costs. A quarter told Carers UK that they are cutting back on essentials such as food or heating, and over three quarters said that the rising cost of living is the main challenge that they will face in the coming year. Many have been desperately trying to find ways of saving money, but that can be difficult because, quite often, the people they are caring for need life-saving care equipment that requires energy, or they need to ensure that the person they are caring for is kept warm. David told me about the financial impact that caring was having on him:

“I have been a full-time carer for my wife for over 10 years, and I’ve found that the money I get doesn’t even cover energy bills. It’s a constant struggle: all unpaid carers want is enough money to pay our bills and still have something left over to buy things when we need to. We are saving the country a lot of money by doing what we do and some recognition would be appreciated.”

[Dame Caroline Dinenage]

That is absolutely right. The Government have spoken about a social tariff for energy, but identifying who the carers are and how they can access that support is vital.

Gary told me about the financial struggles he has because of caring:

“After giving up a reasonable salaried job to care for my wife, we fell into severe financial hardship and were resorting to food banks. When the cost of living crisis happened, it was so bad I had to take up part-time taxi driving, which takes me away from my care role, in order to survive, but I can only earn so much due to the limits imposed or lose the carer’s allowance.”

That is adding additional stress and complexity to his life.

Supporting carers to stay in or return to paid work is essential. We want to ensure that carers can live a life free from poverty in older age, but 75% of carers who are working alongside their caring responsibilities are worried about juggling work and care. Increasing numbers of employers are recognising the importance of supporting carers in the workplace, and it is vital that they maintain flexibility so that people can continue to do their incredible juggling acts.

Nicola told me that she had to give up her career as an embryologist to care for her daughter, who has Angelman syndrome. She said:

“We have no family support, no help from the council and my daughter is awake for hours in the middle of the night, which means that we are unable to sleep and are completely exhausted. The only income I now receive is carer’s allowance. We solely rely on my partner’s income, which covers our bills. We have already moved to a cheaper house, but it is still extortionate as we live in Surrey and my partner has to commute into London daily.”

Lucy, who cares for her disabled son, who has cerebral palsy, told me:

“I have had to give up my job as a company director as his needs and required medical operations means I cannot keep a job any longer. I have gone from having a £40k+ job and am now claiming carer’s allowance.”

Finally, more needs to be done to support and help carers to recognise themselves as carers. Many are not doing so, which means they are missing out on the support they need. Research that the charities involved with Carers Week released on Monday found that 73% of people in the UK who are providing or have provided unpaid care in their lifetime—roughly 19 million people—have not identified themselves as carers. Research also shows that half of all carers take over a year to recognise that they are in a caring role, with over a third taking over three years to recognise themselves as carers.

That is particularly pertinent to young carers, who may not know that they are carers. In many cases, their situation can be misinterpreted. Schools can perceive young carers to be bad students because they are not paying attention, when in many cases they are just extremely tired and stressed by their caring responsibilities. Schools need to go much further to identify young carers in their midst and to support them.

In cases where a young person is supporting a parent with mental ill health, there is a stigma attached and they do not want to tell their friends. I remember meeting one young gentleman at a carers’ festival that is run every year, which is a wonderful way of supporting young carers to live life like normal young people and enjoy themselves. He told me that his mother had made many attempts to take her own life and that, as a very young child, he had to get used to phoning 999 for the ambulance to take his mum away and save her. He never told his school about this because of the stigma attached to it; he felt deeply isolated and ashamed. We need to double down on our efforts to ensure we identify young carers in schools.

[Jim Shannon]

I thank the hon. Lady for giving way; she is very generous. Figures mentioned in the press last week indicated that some 25% of those who care have mental stress, depression and concerns themselves. She has outlined that from a young person’s point of view—what she says clearly illustrates the need for Government to grasp the role of carers and the impact that role has on them.

[Dame Caroline Dinenage]

The hon. Gentleman is absolutely right about the mental pressure put on carers because of the responsibilities they take on, but also because of the perceived lack of support or respite. It is important that we recognise that that can mount up and overwhelm people, and that they can experience burn-out and ill health.

I want to recognise the work of Governments across the UK and the range of actions they have taken to provide carers with more help and support. In England, the Government aim to support carers primarily through adult social care reform, but also provide support through the Better Care Fund. In the context of reform, I was pleased to note that there is a specific chapter on support for unpaid carers in the White Paper “People at the Heart of Care”, which states that the Government will

“build on the foundations of the carers action plan”

—which I published when I was Minister for Care—

“to set out a new strategic approach”.

I look forward to hearing more about that. Perhaps the Minister will give us further details about the timescales. I should also like to hear more about the £25 million investment that the Department of Health and Social Care has pledged to make in support of unpaid carers. I understand that the details will be announced shortly, but given that it is Carers Week, I should be grateful if the Minister could indulge us and give us a sneak preview of what might be coming up.

I should like now to think back, briefly, to the support that the Government provided to help carers through the pandemic. A number of measures were introduced, including a highly effective identification programme. The Government worked with local authorities, GPs and local carers’ organisations to identify new carers and ask them to come forward for the covid vaccine, for which they were prioritised thanks to fantastic lobbying work by Carers UK and the Minister—who was also the Minister at that time, although there have been a few bumps in the road since then. It is great to see her back in her place. The programme demonstrated an ability to identify carers that does not seem to be moving on into everyday life, and I should like to see that continue. The Government also relaxed some of the rules applying to claims for carer’s allowance, and I should like to see that continue as well.

Further significant steps have been taken in the last year. The Carer’s Leave Act 2023, which gained Royal Assent only last month, will provide dedicated employment rights for carers for the first time. I congratulate the hon. Member for North East Fife (Wendy Chamberlain), my hon. Friend, on her work in securing the passage of her private Member’s Bill, because the Act is a game-changer.

Despite those successes, however, I believe that much more needs to be done. Carers have contacted me to let me know about key areas in which they wanted more support. If the House will indulge me for a little longer, I will run through some quotations. Bryony told me that she wanted carers to be given more financial support:

“Carer’s Allowance should be higher to reflect the impact and reasons it is claimed. I didn’t choose not to work; I didn’t choose to lose a well-paid career. I will always choose my son, but the financial burden is destroying families.”

Tracy talked about the need to be able to take a break from caring:

“Respite is essential. If carers reach burnout, the person they care for could end up in care sooner. If you support the carer and they feel valued without having to worry about finances, they would be less stressed and able to cope day to day.”

Rebecca called for greater recognition for carers:

“I feel we are overlooked by all the groups in society. It makes you feel bottom of the pile in everyone's priorities.”

Sarah said that she needed better signposting to the support available to help carers with their responsibilities:

“It would be fantastic if there was a directory of support and benefits that are appropriate as soon as a diagnosis is recognised. For years we didn’t claim Personal Independence Payment and Disability Living Allowance for our daughter because we didn't know about it. For over ten years I didn’t know I was entitled to Carer’s Allowance. I also didn’t know for the last three years my daughter was entitled to elements of Universal Credit. This would have helped us as a family and taken the stress and pressure off for myself to be able to ‘fight’ in other areas of my daughter’s life.”

The testimonies that I have shared are my reason for being here today, and the reason I support the call from the charities that are backing Carers Week for the Government to establish a cross-departmental ministerial group to focus on the help that carers need. I was delighted to learn earlier this week of the Minister’s commitment to establishing just such a group. Carers’ issues do not fall solely within the remit of the Department of Health and Social Care; they are everywhere, involving everything from energy prices to the circumstances of the young carers we have spoken about, carers in employment and carers’ benefits. The establishment of the ministerial group will ensure that carers’ needs are understood and responded to at the highest level of Government, and will improve ministerial oversight of policies and measures that support unpaid carers.

It is my hope, and that of the all-party parliamentary group on carers, that this work will lead to the development of a full and financially supported national carers strategy. Such a strategy would help to ensure that we went further in respect of a range of measures to help unpaid carers, including improved data sharing to ensure that carers are identified and support and entitlements are not missed; better support for and identification of carers at key transition points—for example, when people move from children’s to adult’s services; more funding for social care to ensure that unpaid carers are given the support that they need once they have been identified; and a review of carers’ financial support and benefits, including carer’s allowance, to ensure that they are fit for purpose and prevent financial hardship.

I want to encourage all those in the House today, and those watching the debate, to involve themselves in the activities taking place during Carers Week, and to reach out to the thousands of people in each of our communities who do so much to support the people whom they love. I also want to encourage all Members who have not already done so to join the all-party parliamentary group—I hope you do not mind the quick advertisement, Madam Deputy Speaker—which I co-chair with Baroness Pitkeathley. We have some exciting plans for the coming year.

Let me end by saying what I say every year. While Carers Week is an important opportunity to recognise, for one week in the year, the extraordinary lengths to which carers go, we must also recognise that they go to those lengths every single day. Every week should be Carers Week. Day in day out, year in year out, carers work to ensure that their loved ones are cared for, are safe, and lead the best lives that they can. That is something that happens 52 weeks of the year.

Obesity and Fatty Liver Disease

Jim Shannon Excerpts

Thursday 8th June 2023 Westminster Hall

[Jim Shannon (Strangford) (DUP)]

Thank you for calling me, Mr Hollobone; it is always a pleasure to serve under your chairmanship. It happens very often that you and I are here in Westminster Hall, but perhaps for different reasons and to participate in different ways.

I thank the hon. Member for Caerphilly (Wayne David) for leading the debate. It is always a pleasure to hear his calm voice, and today he put the case forward admirably. It is also a pleasure to follow the hon. Member for Erewash (Maggie Throup), who brings a vast stock of knowledge from her former role and her deep interest in these subjects. Whenever she speaks in Westminster Hall or the main Chamber, it is always with facts, evidence and a determination to get the answers.

As the vice-chair of the APPG on liver disease and liver cancer, I am pleased to be here to draw attention to the liver disease crisis, but I am not pleased that there is a crisis of liver cancer in Northern Ireland. One of the great things about the Minister—I do not say this to give him a big head or anything—is that whenever we ask him questions, his first intention is clearly to respond in a positive fashion. That being the case, I have a couple of asks for him.

I am also pleased to work alongside the two shadow Ministers, the hon. Members for Linlithgow and East Falkirk (Martyn Day) and for Bristol South (Karin Smyth). I was saying beforehand to the Labour shadow Minister that very often—most Thursdays—she, the Minister and I, and sometimes others, have this shift in Westminster Hall. We are always pleased to come and to participate. As we look forward, I hope that we can work together and emerge with a good practice for obesity prevention and the early diagnosis of fatty liver disease, which I hope can be replicated across the whole of this great United Kingdom of Great Britain and Northern Ireland.

I was delighted to sponsor the British Liver Trust’s “Check your liver health” event in Portcullis House in January. The hon. Member for Caerphilly referred to that event. The turnout was great; he was absolutely right. I thank all MPs who took the time to attend. I personally got the all-clear. That does not mean that someone can sit back and say that everything is all right; they have to continue to do the right things, so that they do not fall back.

I would like to give some background on the situation in Northern Ireland. I always like to give a Northern Ireland perspective, because I believe that that enriches the debate, even though it probably replicates what everybody else is saying as well. When the SNP shadow Minister speaks, he will give Scotland’s perspective, and I very much look forward to hearing that also. In Northern Ireland, nine out of 10 liver disease cases are preventable. That is the point that we start from and it is what the hon. Member for Caerphilly said in his introduction: we can prevent liver disease if we eat right—if we have the correct diet—and we exercise, so it is really important that we do that. There is also the question of alcohol. I am not against anybody drinking alcohol, but if people do that, they should do it in moderation.

Liver disease deaths have doubled in the last two decades, which contrasts with the trends in other chronic diseases, which have decreased or stabilised. While liver disease and liver cancer have increased, other diseases have fallen. We cannot ignore that. There is an onus on Government. Government cannot do everything for everybody, but they can raise awareness and perhaps give some of the direction that is needed. It is important to recognise the trend.

Liver disease deaths in Northern Ireland increased by 39% during the period encompassing the pandemic—between 2018 and 2021. That was primarily driven by obesity and alcohol misuse. The pandemic was part of the reason for that, but there is also an onus on all of us individually, including me. We need to exercise and do the right things. Northern Ireland does have a non-alcohol-related fatty liver disease and haemochromatosis pathway in development, so there is a policy by the HPSS—health and personal social services—in Northern Ireland, but progress is slow.

I am, as always, keen to ensure that the Minister here uses his good offices to encourage the devolved Administrations to be active, and I am sure that that will be the case. The Minister himself is proactive. I know that he has had regular contact in all his ministerial roles—in Education and now in Health—and I hope that discussions with those in Northern Ireland continue. Has he had an opportunity to have discussions with the Department of Health back home in Northern Ireland? If not, may I request that he do that?

I have spoken before on the importance both of raising awareness of the risks of obesity and of early diagnosis. People with excess weight and fatty liver disease are at higher risk of cardiovascular disease and a wide range of cancers. People who are obese are two times more likely to develop liver cancer, three times more likely to develop colon cancer, two and a half times more likely to develop high blood pressure and five times more likely to develop type 2 diabetes. I declare an interest as a type 2 diabetic. I will give an idea of what that involves. When I was diagnosed as a type 2 diabetic some 15 years ago, I weighed 17.5 stone. I was a big fat puddin’—I am talking about myself, so I can use this terminology. I lost some four stone and have kept that weight off. But people have to work at it; that is what the hon. Member for Caerphilly was saying. Diet control helped for a while, but my diabetes—this debate is not about diabetes—is now medication-controlled. It is important that people are aware of that issue. That included me, who came through that particular episode some years ago.

British Liver Trust research reveals huge geographic variation in access to patient care pathways for the early diagnosis and management of liver disease in primary care. Furthermore, removing stigma surrounding the impacts of liver disease is crucial. That is why it is important that we all recognise that we have to encourage people. It is so alarming that 49% of liver patients surveyed by the British Liver Trust in October 2022 reported experiences of stigma from healthcare professionals. When someone comes to our office, our job as MPs is not ever to be judgmental; it is to help the person with whatever the issue may be. I think that there is a case for healthcare professionals to have the same attitude when people come to them. This should be not about judgmental attitudes, but about saying, “What can we do to help?” People should look at it that way.

I congratulate the Royal Victoria Hospital liver support group in Northern Ireland on its recent 25th anniversary. Its chairman, Jim Kilpatrick, is a constituent in a neighbouring constituency, and he is a passionate campaigner who has been instrumental in improving support for patients in my constituency of Strangford—indeed, in all areas. I commend him for that and for the support of carers across Northern Ireland. There was a debate in the Chamber earlier about carers. I think we all have experience of that—I know my family have. Jim Kilpatrick presents an understanding and supportive stance on behalf of the support group, persuading, assisting and making life better, as well as focusing attention on and driving the strategy. The Royal Victoria Hospital liver support group is a network of volunteer liver patients and their carers who provide confidential, compassionate, emotional and psychological support for all adults, teenagers and children coping with a liver condition. Their vital work is a lifeline to my constituents and patients across Northern Ireland.

Liver disease is a silent killer, largely asymptomatic in its early stages. Three quarters of patients are diagnosed with cirrhosis in hospital, when it is too late for effective treatment. The hon. Member for Caerphilly emphasised the need for early diagnosis, and he is right. Risks can be drastically reduced through early detection and through diet, exercise and drinking in moderation. Let us be honest—there should be moderation in everything. It is so important that we raise awareness.

I give sincere thanks to the British Liver Trust, which has been in constant contact with my office and has been so insightful in the information it has provided. I want to put on the record how grateful I am to the trust for providing me and my staff with the information to prepare for this debate. I look forward to working with it in future as we collaborate to address this important issue and improve the health of constituents. I am convinced that the trust would be keen to work alongside the Minister and his Department. Has he had an opportunity to discuss these matters, to work in partnership and to help each other.?

I am also keen to receive an assurance that any co-ordinated plan or strategy here on the mainland can be delivered by the regional Administrations, including the Northern Ireland Assembly. I am confident and convinced that the assurances I seek will be given. I say this not as a political comment, but when it comes to many things, particularly health, one of the great things is that we can work collaboratively and better as the United Kingdom of Great Britain and Northern Ireland. It is always better to share our details, our practices and our experiences. By doing so, we can move forward together and make sure that across this great nation we can all improve our health.

--- Later in debate ---

[Will Quince]

My hon. Friend is absolutely right; we are constantly learning more. At the moment, I do not think there is a definition of an “ultra-processed food”. There has been a lot of work. We are learning more and more about the issue and it has recently exploded into the public domain. We need to ensure that more people are aware of and being educated about what is actually in their food, and that they are looking at labels. If we go back 20 years, we were all very much alive to E numbers —does everyone remember E numbers?—which no one looked at before. Now, we often look over the back of the packaging to see the number of E numbers in our products. The more that the public are educated and informed so that they can look out for these things, the better. My hon. Friend the Member for Harborough will be happy to discuss this further with my hon. Friend the Member for Erewash. I know that ultra-processed foods are an issue about which the public are concerned, and we certainly have more to do on food labelling.

[Jim Shannon]

The Minister always brings good responses. The SNP spokesperson, the hon. Member for Linlithgow and East Falkirk (Martyn Day), made a comment that I endorse totally, because it is something that I hear from my constituents every week. With respect, many people can look at the labels and see what they mean, but what do they look at first? They look at the price, because they are trying to make a meal for their family. What drives them will be, “What can I afford to do?” I am conscious that the Minister has been very constructive in his responses, but there must be a wee bit of reality as well.

[Will Quince]

I thank the hon. Member for that intervention. He is absolutely right; not everyone has the luxury to make choices, and they will often have to go for the cheapest products or products that are available in their area when others might not be. That is why it is so important that we continue the work with industry on reformulation.

Personally, I have been more of a convert to Government action in this area. The soft drinks industry levy has been hugely successful. The industry was already doing a lot of that work. Nevertheless, the levy has nudged and pushed it further in the right direction—but there is more work to do.

I would push back ever so slightly on a couple of the comments that have been made today about industry not wanting to do this. It is not moving at the pace that we want, expect and need it to, but it is doing it. The sugar content of cereal is down by about 15%, and it is down by about 14% in yoghurts and fromage frais. We need industry members to go further, but they are doing it because they are responding directly to what their customers and consumers are telling them they want, and to people actively choosing healthier products. However, we have more to do on reformulation and working with industry.

We will also introduce restrictions on the advertising of less healthy products before 9 pm. I will answer the question on that from my hon. Friend the Member for Erewash in just a moment. The major conditions strategy call for evidence is open, and, as I said, my hon. Friend the Member for Faversham and Mid Kent will gladly meet colleagues to discuss that.

There is also the piece of work around supporting people with weight management, such as the NHS digital weight management programme, the weight loss drug programme and pilot that we announced yesterday, which I just spoke about, and the better health campaigns—including the NHS weight loss app Couch to 5k, which, if anyone has not tried it, is a great way of getting into running, and Active 10. There is also the NHS health check, which includes checking on BMI, encouraging people and giving them the tools to take control of their health.

Then there is the research piece. As I say, this is one of our healthcare missions. Obesity is right there at the top; we want to see the newest and most innovative products and medicines coming forward and being used first in this country.

The hon. Member for Bristol South is absolutely right that this cannot just be an issue for the Department of Health and Social Care; it must be a cross-Government issue. I remember when I was the Children’s Minister and had responsibility for school sport: looking at school sport investment and premiums, at the upskilling of primary school PE teachers in particular, and at the holiday activities and food programme, which was specifically targeted at children in receipt of free school meals.

I remember visiting some eye-opening educational programmes. In one example—I would love to get a number of parliamentary colleagues to try this experiment—there was range of soft drinks, from a Monster energy drink through to flavoured water, and a big box of sugar cubes. The children were asked to put against each product the number of sugar cubes they thought it contained. You would be amazed, Mr Hollobone, how many children put six cubes against the water and very few against the Monster or the full-fat Coke, despite the can of Coke containing something like six cubes of sugar. In schools, we are also promoting the daily mile, the healthy schools programme and healthy school meals. That is all important work, but do we need to do more? Of course we do.

My hon. Friend the Member for Erewash asked about the delay to policies, specifically to the restrictions on advertising and promotions. I understand her frustration but the delay to advertising restrictions allows the Government and regulators to carry out certain processes necessary for the robust implementation of the restrictions. Those processes include carrying out consultations, appointing a frontline regulator, the laying of regulations and the drafting of guidance. She asked specifically when that is coming in; it will be in October 2025. She also asked about the volume price promotions ban, which was delayed due to the unprecedented global economic situation. I do not know the answer and I do not want to mislead her. The legislation states October this year, but I do not know latest position, so I will ask my hon. Friend the Member for Harborough to write to her.

Mental Health Treatment and Support

Jim Shannon Excerpts

Wednesday 7th June 2023 Commons Chamber

[Dr Allin-Khan]

I could not be more proud to work with my hon. Friend in this space. He is a powerful advocate and I wholeheartedly support all his efforts, and those of Members across the House, to support people who are living with alcoholism, and their families. I thank him; we will continue to support his work.

[Jim Shannon (Strangford) (DUP)]

I commend the shadow Minister and the Labour party for bringing this issue forward. Support for mental health across this great United Kingdom of Great Britain and Northern Ireland is a massive issue, including in my constituency. For example, one of my constituents told me they finally found the courage to seek help for their mental health, only to be told by health professionals, “We can’t do anything for you just now as your condition is not severe enough yet—you have no thoughts of suicide.” Does the hon. Lady agree that supporting those with mental health issues at the earliest stage—right away—is more beneficial, instead of forcing them to wait until it may be too late? At that stage, the situation cannot be turned back.

[Dr Allin-Khan]

I thank the hon. Member; it has been a pleasure to work with him in every single debate about mental health that I have held in the past three years, since I started my role. He speaks to the important point that prevention is the watchword that counts when it comes to mental health.

Oral Answers to Questions

Jim Shannon Excerpts

Tuesday 6th June 2023 Commons Chamber

[Neil O’Brien]

I was seized by the thoughtful comments that my hon. Friend made in that Westminster Hall debate. We are working on all those ideas, and the plan will be out very shortly.

[Jim Shannon (Strangford) (DUP)]

I thank the Minister for his response. Would he consider encouraging more students to go into dental work by writing off student loans for those who go into NHS dental work for a five-year period—in other words, we get something back if we invest in them?

[Neil O’Brien]

At every stage, we are taking action to get more dentists doing NHS work. There are 6.5% more dentists doing NHS work than in 2010. The hon. Gentleman has an important idea. We are doing other things to retain NHS dentists, such as the important reforms that we made to pensions, which have helped both GPs and NHS dentists.

Patient Choice

Jim Shannon Excerpts

Thursday 25th May 2023 Commons Chamber

[Steve Barclay]

My right hon. Friend has lobbied me on this issue a number of times, including outside the Chamber. As such a senior parliamentarian, he well knows that tax is a matter for the Chancellor, who I am sure will have noted his wider point.

[Jim Shannon (Strangford) (DUP)]

I thank the Secretary of State for his very positive statement. He referred to long waiters, the second area of work. One oft-neglected area is access to specialist in-patient services for eating disorders. My constituents in Northern Ireland do not have access to a clinic to allow them a choice between a weekly weigh-in with their GP and specialised treatment. What discussions, and practical and physical assistance, can he offer the Department of Health at the Northern Ireland Assembly to help people with eating disorders?

[Steve Barclay]

As so often, the hon. Gentleman raises an extremely important point about how we tackle the serious issue of eating disorders. As he knows, we are increasing our funding for mental health. It is a key priority in the long-term plan, which is providing an extra £2.3 billion a year. On different approaches, we are looking much more actively at our use of digital apps and platforms, which is an area that the Chancellor specifically funded in the last Budget. We are also looking at how we address mental health issues earlier, particularly for children. We are rolling out mental health support teams in schools because, obviously, early intervention has significant benefits and targeting schools is a great way to do that.

NHS Dentists: South-West England

Jim Shannon Excerpts

Wednesday 24th May 2023 Westminster Hall

[Chris Loder (West Dorset) (Con)]

I beg to move,

That this House has considered the provision of NHS dentists in the South West.

It is a pleasure to serve under your chairmanship, Ms Elliott. I am grateful to colleagues from across the House for attending this very important debate. If someone living in Dorset rings their nearest NHS dentist looking for an appointment, there is a 22% chance that they will be told the practice has gone private. If someone living in Dorset rings their nearest NHS dentist, there is also a 42% chance that they will be told the practice is not taking new patients with special or additional needs. There is a 50% chance that they will be added to a waiting list that is over 12 months, so half the constituents calling today could be waiting until May or June 2024 before they are seen. Finally, if someone living in Dorset is calling to book a dental appointment for their child, there is a 77% chance that they will be told the practice is not accepting new child patients.

The reason for these unacceptable statistics is because access to NHS dentistry in the south-west has been on an alarming downward trajectory for some time. Today, rural parts of Dorset, many of which can be found in West Dorset, experience worryingly low access to vital and sometimes life-saving dental treatment on the NHS. This is no doubt a widespread issue across the country, which is plain for all to see in the recent flurry of debates and questions on this subject in the House. Following this debate, there is an Adjournment debate in the House this evening examining dental care in the north-east, which shows how this issue is affecting constituents across the country.

According to recent reports, a quarter of the adult population in England have unmet dental needs, despite there being 24,272 active NHS dentists. That is enough for one for every 539 people, but these statistics can be misleading, because, importantly, even though there has been a 2.3% increase in the number of NHS dentists this year compared with last year, productivity has slowed. As many as half of these 24,000 dentists have cut back on their NHS work, according to the British Dental Association, forcing more people to either choose to go private and shoulder the burden of these additional costs themselves, or to go without and face the risks of poor dental hygiene that that can bring, such as tooth decay and gum disease.

[Jim Shannon (Strangford) (DUP)]

I commend the hon. Gentleman and his team of MPs who come along to support one another on these issues. I am really impressed by how well they do their job. They did it yesterday, and they are doing it today; well done to them.

Across the whole of the United Kingdom of Great Britain and Northern Ireland, there are issues. The hon. Gentleman referred to the figures in his constituency; in my constituency, 100% of people cannot get an NHS dentist. Paying online for a whole year’s subscription to a dentist is not possible for many, including people who are elderly. Does he agree that the Minister should liaise with the devolved Administrations, in Northern Ireland in particular and in Scotland and Wales, on how we can better do this together? Clearly, it does not matter where we are in the United Kingdom of Great Britain and Northern Ireland—dentist appointments cannot be got for those who need them most.

[Chris Loder]

I thank the hon. Gentleman for his short and succinct intervention, as ever. He is absolutely right and confirms that this issue needs to be addressed across the United Kingdom, not just in the south-west. I am delighted that he has attended this debate on dentistry in south-west England.

The south-west region was recently rated fifth out of seven for adult NHS dental coverage, with only 35% of adults covered by access to essential dental services, which is below the national average. Dorset fares slightly better, but adults in my constituency and those immediately neighbouring it also experience below the national average coverage for an NHS dentist.

The inequality is also affecting children, whom I am particularly concerned about. Although they are faring better than adults, with a coverage rate of 46% in both Dorset and the south-west, that is still below the national average for access to NHS dental services. Without those services, almost one third of five-year-olds are suffering from tooth decay, which is the most common reason why children aged between five and nine are admitted to hospital. Tooth decay is mostly preventable, so its effects serve to demonstrate what a lack of access to NHS dentistry is doing to our children.

Why are we faced with this difficulty? Why is dentistry in England, and particularly the south-west, under such pressure? Although the answer is multifaceted, I believe the reason is primarily threefold: first, the National Health Service Act 2006 and the subsequent dental contract; secondly, the lack of institutional services and the knock-on effects; and finally, the NHS backlog following the covid-19 pandemic.

The National Health Service Act 2006 set out the provisions for agreement between NHS England and dental practices in relation to services that would be provided and the renumeration for those services. Before the Act became law, the National Audit Office and the Public Accounts Committee both produced reports to the then Government on reforming NHS dentistry, which raised concerns about the 2006 changes. Those concerns included the urgent need to change the incentive mechanism for dentists to increase their commitments to NHS dentistry, the difficulty for patients in better-off areas in accessing public health services, and the difficulty for those in more deprived areas in accessing any services at all.

The reports also raised concerns that there would be a shortage of NHS dentists, a glut of people who would be left without access to NHS dentistry, and no guarantees that the reformed contract would be enough to commit dentists to the NHS rather than private practice.

Cost of Living: Healthy Start Scheme

Jim Shannon Excerpts

Tuesday 23rd May 2023 Westminster Hall

[Jim Shannon (Strangford) (DUP)]

We had a similar debate yesterday about poverty, the cost of living and disabled people. It was a heartfelt debate because everyone brought examples from their constituents. I congratulate the hon. Member for Stretford and Urmston (Andrew Western) on bringing forward today’s debate. It is always a pleasure to add a contribution in support of the hon. Gentleman, but I also support the thrust of what he has asked for.

I always like to give credit where credit is due. The Government and the Minister have genuinely made many efforts to address this issue. The hon. Member for Stretford and Urmston is asking for more consideration. I reiterate that, and do what I always try to do, which is to provide a Northern Ireland perspective. Yesterday’s Westminster Hall debate on the impact of the cost of living on disabled people across the UK was important, but it is also good to discuss the detrimental impact of the cost of living on families. The hon. Gentleman outlined some examples from his own constituents and the people he meets every day. I would like to do the same.

In the UK, we are very fortunate to have the Healthy Start scheme. I can very seldom stand here as a Northern Irish MP and talk about a scheme that applies to the whole United Kingdom, but that one does. It provides huge help to many lower-income families, especially at the peak of the cost of living crisis. The Healthy Start scheme, for which the Minister has responsibility and which the Government have made available, provides a pre-paid card for eligible applicants that allows them to purchase frozen fruit and veg, liquid cow’s milk, vitamins or infant milk-based formula. Some 13,500 households in Northern Ireland avail themselves of the scheme and it has been a Godsend—I use that word on purpose—for those families. It has been instrumental for many people in providing the key nutrition they need at the time they need it. I put my thanks for that on record. The scheme is not only for young children, but for expectant mothers and for new mothers who are breastfeeding.

I want to commend the hon. Member for Glasgow Central (Alison Thewliss), who has been a great leader on this issue through the all-party parliamentary group on infant feeding and inequalities. I am a member of that group because I support what the hon. Lady is trying to put forward. It is a very active APPG. I have spoken at a number of events in Northern Ireland and the hon. Lady has always ensured that breastfeeding is central to the debate. I have no doubt that when she speaks shortly that she will add some of the thoughts that she has expressed in APPG meetings.

In Northern Ireland, the scheme has been good for expectant mothers and new mothers who are breastfeeding. I would like to say how important it is to receive the right support at the right time. In Northern Ireland, eligibility for free school meals does not start until primary 1, the equivalent of year 1 here in England, so before children start primary school, the responsibility to provide them with nutrition is solely on mothers and families. I did not see the story on the news about people hearing their children crying for food, but the hon. Member for Stretford and Urmston told it well. I am well past the baby stage now, but I had my grandchildren at our house at the weekend. Whenever they want to be fed, they want to be fed right then, so when the hon. Gentleman tells a story about a child crying because they are hungry, I understand how important it is that we can respond.

Unfortunately, some people struggle to afford food, and the additional pressure of the cost of living has made things considerably harder for mothers and families, which highlights the importance of the wonderful Healthy Start scheme and why it is so crucial for so many parents across the whole of the United Kingdom of Great Britain and Northern Ireland. Northern Ireland statistics show that 330,000 people in Northern Ireland live in poverty. That is a massive figure out of a population of 1.95 million—almost one in five people. Sadly, it includes 110,000 children, which means that the poverty rate is highest among children. This is an issue that I deal with every day in my office, and—the hon. Member for Stretford and Urmston referred to food banks—my staff try to help people through the food bank in Newtownards, which has been used 50% more than it was last year. That gives Members an idea of what is happening. Food banks have a role to play, and they bring good people together. They bring together churches, charities and people in order to reach out and help, and they do that with a kindness and generosity that always amazes me.

The figure of 110,000 equates to one child in four—24%—living in poverty. I ask the Minister to consider extending the eligibility criteria for the Health Start scheme so that more people are included. If I had one request to the Minister, that is what I would ask for. I know the hon. Member for Stretford and Urmston referred to the issue, and I think we are all united on that. So many working individuals are already on the breadline and are unable to support their families because of the cost of living, which is something that we deal with every day in our offices and advice centres. Working families who are struggling to cope should be able, at least temporarily, to avail themselves of the perks of the Healthy Start scheme while the rise in the cost of living is proving so prevalent.

There are so many factors that sew into why so many people and their families are struggling. We are not blaming anybody, because there are circumstances beyond our control. The Ukraine war is one example, as is the cost of energy. They are the fault of nobody in this room, but they are among the factors. What we get from our Government and the Minister is compassion and understanding, and increasing or reviewing the eligibility for the Healthy Start scheme would be a massive step in the right direction. Other factors include the cost of living, the removal of the uplift in universal credit, and the basic rates of maternity and paternity pay for certain forms of employment.

My benefit adviser, who works from both of my offices in Strangford, in Newtownards and Ballynahinch, is a very busy lady and spends five days a week doing nothing but benefits, which are complex. The wonderful thing about her—I say this to her face, so I am not saying anything that I have not said before—is that she understands the benefit system. It can be complex for people to take on board, but she understands it and can offer help through it to address the cost of living, which is impacting on all sorts of people from all kinds of communities.

I have spoken numerous times in the House about the increase in food bank referrals from my office. The food bank in my town is run by the Trussell Trust and was the first one in Northern Ireland. It tells me that my office refers the most people for food bank packages. I probably see more than most people what it means to be desperate, with some being too embarrassed to ask for the help they need. I have also spoken before about the need for universal free school meals. I am not sure whether it is the Minister’s responsibility, but perhaps he could indicate whether it is possible to provide support for children, who are the future—we must not let them down. I love children; we all do. We have our own families, children and grandchildren, and we want to see them do well. However, we also see the children of people who come to see us, and the desperation in their eyes as they try to reach out and seek help. That is what we desperately want as well—to be able to respond in a positive fashion.

I ask the same for the Healthy Start scheme; we should do more to assist expectant mothers and children up to four, who also need help. It should not depend on what parents earn or how much they are struggling, there should be an acceptance that this is a hard time for everyone. We can do more to provide that extra bit of support. The hon. Member for Stretford and Urmston has asked for that. I endorse it; I support it, and I know others will as well. I also encourage greater discussion between the devolved Administrations to keep a constant eye on the situation, and to assess what more we can do in this place to support people who are struggling daily to make ends meet.

I look forward to hearing from the two shadow Ministers—the hon. Member for Glasgow Central and the hon. Member for Denton and Reddish (Andrew Gwynne). The three of us are always together in the same debates, and more often than not with the same Minister to respond. I look forward to hearing from him as well.

Epidermolysis Bullosa: Drug Repurposing Trials

Jim Shannon Excerpts

Tuesday 9th May 2023 Commons Chamber

[Gareth Bacon (Orpington) (Con)]

Epidermolysis bullosa is dreadful. It is often referred to as butterfly skin. It is a little known and rare genetic skin blistering condition, which causes skin to blister and tear at the slightest touch. BE—I will be kind to myself and refer to it in the rest of my speech as BE—causes excruciating, lifelong pain, and can have a devastating impact on the physical and mental wellbeing of patients. It can also greatly affect patients’ families because of the constant treatment needed. In many cases, this means several hours of bandaging and unbandaging the most affected parts of the body daily. In its most severe form, EB also affects internal organs and eyes, causes severe problems when it comes to eating and drinking, and requires extensive healthcare—and there is no cure. It is believed that EB affects around 5,000 people in the UK, although there is limited information available from the NHS. Although that is a relatively small number, the severity of the condition is such that it has a deep impact.

I was asked to secure this Adjournment debate by some of my constituents, DEBRA, which is a UK-wide charity supporting people with EB and their care givers, healthcare professionals and researchers who work with EB. The charity exists to improve quality of life for people living with EB, and to fund pioneering research to find effective treatments. The charity works in partnership with the NHS to deliver EB healthcare services. There are four centres of excellence delivering specialist care in the UK, along with additional hospital care and clinics at other locations. The charity has a proud record of funding EB research in the UK and internationally, funding the first clinical trials in gene therapy. Its current focus is on fulfilling its mission to help people with EB live a life free of pain, a point I will return to later in my speech.

Many colleagues may be familiar with DEBRA from some of its network of more than 100 charity shops, which are the main source of the charity’s income. I was able to visit one of the DEBRA shops, located in Locksbottom in my Orpington constituency, a few months ago, and I met not only the volunteers there, but a local constituent called Wendy, who suffers with EB. This particular lady has been suffering from EB since birth, and she told me of her experience and the experience of others who have an even more severe type of the condition.

As a child and even as a young lady, Wendy did not know that she had EB because doctors had not diagnosed the condition, which, particularly in the early years, is difficult to spot. She did, however, suffer constantly from blisters on her feet and her legs. Wendy told me about how, while she was growing up in constant pain, she would try to hide her wounds from friends and classmates, and would avoid wearing skirts to avoid causing unpleasant reactions from others. Yet as terrible as this sounds, Wendy told me her case was not uncommon and not as severe as it was for other patients.

[Jim Shannon (Strangford) (DUP)]

I commend the hon. Gentleman for bringing this debate forward. He raises an issue that affects not only his constituents, but mine and those of others across Northern Ireland, so I commend him. Does he not agree that this dreadful disease, which is named the butterfly disease because it is unusual, has the capacity to limit life and the quality of life, and that the funding for the treatments he refers to, which can provide relief to constituents in all of our constituencies—in his, mine and those of others in this House—is vital? Would he urge the Minister, who is a very compassionate man and understands the issue very well, to give even the smallest bit of funding towards research to try to find a cure for the disease and to help the lives of those who have it?

[Gareth Bacon]

I thank the hon. Gentleman for his kind words and the way he expressed them, and I agree entirely with those sentiments. Without giving out too many spoilers at this stage, there will be a request for a small amount of funding towards the end of my speech.

What I learned during the visit I referred to was truly moving, and I am particularly grateful to have met Wendy. I also thank DEBRA’s director of research, Dr Sagair Hussain, and the excellent staff at the charity shop in my constituency, for inviting me to visit them and learn more about how they help individuals who live with this painful condition. In the spirit of thanking people, I also thank the Minister for his interest in this subject and for being here this evening to respond to the debate, and the Minister for Social Care for recently answering a written parliamentary question that I tabled about EB.

I stress that we cannot merely wait for a cure for this condition. We need to make a difference for patients who are suffering today and those who will be living with the condition for the foreseeable future. All EB patients are crying out for better therapeutic treatments, which have the potential vastly to improve their lives. DEBRA has set an objective of securing two to three treatments from drugs that are already licensed for other conditions, to radically improve the quality of life experienced by people with EB. In reply to my recent written question, the Minister for Social Care said that medicines that are potential candidates for repurposing in this way should be put forward for consideration for support from the Medicines Repurposing Programme. I am grateful for her guidance, and officials from the MRP have been in touch with DEBRA since to talk about the programme’s work. That is excellent news.

In addition, I was delighted to hear that some innovative treatments for EB are either in trials or are being considered by the National Institute for Health and Care Excellence. Specifically, NHS England is working with NICE on the evaluation of two products for EB: birch bark extract for skin wounds, and a gene therapy with a name that I find particularly difficult to pronounce, although I will give it a shot—beremagene geperpavec. I have almost certainly mispronounced that, but it is still encouraging news. However, my understanding is that those two treatments will be available only to a fraction of the total number of people suffering from EB. That is why the repurposing process for more mainstream therapeutics is so important.

DEBRA has identified six anti-inflammatory drugs that could help with EB. Several of those are already available for people with more common skin conditions such as eczema and psoriasis, but for people with EB they could be nothing short of life-changing. They have the potential to transform thousands of lives by improving wound healing, reducing pain, and lowering the burden on the family members and carers of those with EB.

--- Later in debate ---

[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.

[Jim Shannon]

When we spoke earlier, I was quite sure that the Minister is truly a compassionate man. He has given us the answers that we wish to hear, and I thank him for that. He talks about the possible cures for EB. Will that information be shared with all devolved Administrations? I think he said that it would be, but I wanted to check.

[Will Quince]

Absolutely. We work on clinical and medical research across our United Kingdom, and rightly so. We work very closely across all four nations.

I am conscious of time, and I want to pick up on the final question from my hon. Friend the Member for Orpington about generic versus branded medicine and the MRP. Branded medicines are potentially eligible for the medicines repurposing programme. I understand that the eligibility criteria state that the programme can support generic, biosimilar and branded medicine. I would be happy to look at my hon. Friend’s list.

In closing, I give my thanks again to my hon. Friend for securing today’s important debate, and to all Members who have contributed. I also pay tribute to the whole EB community and charities such DEBRA and Cure EB, which I know work tirelessly to improve the lives of people affected by the condition. They are fortunate to have my hon. Friend in this place as their champion.

Question put and agreed to.

Recovering Access to Primary Care

Jim Shannon Excerpts

Tuesday 9th May 2023 Commons Chamber

[Steve Barclay]

My hon. Friend touches on an extremely important point. The measures will provide, for all Members of the House, much greater transparency on the variation between primary care settings. I am keen that we should publish much more information showing, within constituencies, the differences in the services offered by different primary care settings. We already see that between those that have digital telephony and online booking and those that do not, but we also see that in other indicators, and I am keen that he and other Members of the House get visibility of that.

[Jim Shannon (Strangford) (DUP)]

I thank the Secretary of State for his statement. The primary care recovery plan is very welcome, and it will be wonderful for NHS England when the goals are achieved. However, I have a very specific question about Northern Ireland. My constituents are struggling to get hold of their medical records over the phone for personal independence payment assessments and appeals. He referred in his statement to improvements in the app system. What discussions will he have with the Department of Health in Northern Ireland about introducing a similar system to enable patients in Northern Ireland to access their medical records via an NHS app?

[Steve Barclay]

The hon. Member is right to recognise the importance of access to medical records. It is a key part of the functionality that we are delivering through the NHS app. He is correct that that is focused on England and not on Northern Ireland, but I am very happy for us to have discussions with him and his colleagues in Northern Ireland on any shared practice.