Rare Autoimmune Rheumatic Diseases

Jim Shannon Excerpts

Tuesday 10th December 2024 Westminster Hall

[Jim Shannon (Strangford) (DUP)]

I beg to move,

That this House has considered rare autoimmune rheumatic diseases.

It is a pleasure to serve under your chairship, Dr Huq. I have done so many times, and it is always a pleasure to be here and to see you fully in control. It is also a pleasure to see the Minister in his place. I was hoping that it would be this Minister, so when he walked through the door, I was especially pleased to see him in person. By the way, I would have been pleased to see any Minister—I do not want to offend anybody. The shadow Minister, the hon. Member for Hinckley and Bosworth (Dr Evans), is in his place as well. He and I talked last night about this issue.

This debate is, by its very nature, a niche debate. Dr Huq, if you have a constituent who has an autoimmune rheumatic disease or you know somebody with one, you will be here to represent them, but not everybody has, because only a small number of people across the United Kingdom of Great Britain and Northern Ireland have one of these diseases. However, I look forward very much to having the debate.

I was chatting beforehand to the Liberal Democrat spokesperson, the hon. Member for Mid Sussex (Alison Bennett), and she was telling me—she will refer to this herself when the time comes—of the important case of her constituent, a good friend. I will leave it to the hon. Lady to put forward that case.

I have always had a deep interest in any health issues. I am my party’s health spokesperson, and if there are any health debates anywhere, in Westminster Hall or in the main Chamber, I make it my business to attend those debates and to contribute to them, whether by speeches or questions. That is really important. I have a particular interest in rare diseases, and that came through a constituent who lives down the Ards peninsula. I have probably known him all his life. When you get to my age, Dr Huq, there are many people you have known all their lives; that is just a fact. The point is that he married a young girl from the area. She had a rare disease, and my interest came through contact between her and the family and me across the Ards peninsula. Across Strangford, this became a massive issue, and that lady and that family today fly the flag for rare diseases in the Ards peninsula and in Strangford.

I thank the Backbench Business Committee for granting this debate. I think we start from the NHS point of view. I am an advocate for the NHS—always have been and always will be—as we all are in this House. I am one who believes in the foundation of our NHS and the people who hold it together—the people whom we may not meet, but who are the glue and the gel that keeps it going and keeps it together. I am aware of the stress and strain on the NHS, and give my full support as the Government attempt to make the changes that are necessary for the NHS to survive. I very much welcome the Government’s commitment. I think they have committed £26.3 billion to the NHS, and that is a massive contribution. It shows confidence on the part of the Government; we welcome that. My starting position is praise for the people behind those three little letters, N-H-S.

We are beginning to look at NHS restructuring—the Secretary of State has confirmed that, and the Ministers are all committed to it. There are lots of priorities that the Government have to get to, but amongst that is the restructuring. A vital component is that the NHS provides high-quality, equitable care for all people, regardless of how rare or complex their condition is. If you—when I say “you”, Dr Huq, I really mean me or anyone else across the United Kingdom—do not have a rare disease, you may not understand what it means to have one, and how rare or complex a particular condition is, but that tells me that we need to be aware of this issue. We need to reach out and we need to help. The Government have a commitment to rare diseases as well. Although they may not be mathematically or statistically numerous, they represent individuals, families—relatives—and friends, who all understand the issue very well.

I have been interested in rare diseases since I was in the Northern Ireland Assembly, before I came here. We had contact with ladies down the Ards peninsula who were very much aware of rare diseases and the issues, so we started a rare diseases group in the Assembly, which we have continued here over the years. I will use this opportunity to speak on their behalf about some complex, rare diseases—rare autoimmune rheumatic diseases.

[Mr Gregory Campbell (East Londonderry) (DUP)]

I congratulate my hon. Friend on securing the debate. Does he agree that because so few people are impacted by rare diseases, raising awareness among health professionals is a key aspect of helping those people, who may often feel overlooked simply because of the very small number who come into the ambit of the subject matter we are discussing?

[Jim Shannon]

As my hon. Friend often does in these debates, he brings forward a reminder of why this debate is important and why we need to raise awareness. It is about giving confidence to people out there who may have these diseases and may think that they are fighting this battle all on their own, but are not. We need to raise awareness among NHS staff. It is impossible to know about every rare disease, but it is good to recognise the symptoms and to be able to point people in the right direction.

Rare autoimmune rheumatic diseases are a range of chronic, currently incurable conditions in which the body’s immune system damages its own tissues, often in multiple organs throughout the body simultaneously. That is a lot of words but, to use a phrase that we would say back home, it means that they come at a person from all sides. They can lead to tissue or organ damage that, in some cases, can be fatal. We cannot ignore the fact that that can be fatal and the importance of responding in a positive fashion.

At present, the outcomes are not good enough for people living with rare autoimmune rheumatic diseases: they wait too long for a diagnosis, have variable access to specialist care and cannot always access help and support when they need it. In any debate that we have about ill health, we often say that early diagnosis is important, but so is having access to specialist care. It is important that NHS workers are able to notice something that may be unusual and not something that they see every day. It is also important that the care, help and support that people need is available when they need it. Preliminary data from the Rare Autoimmune Rheumatic Disease Alliance’s soon-to-be-released 2024 patient survey found that the average time to diagnose from symptom onset was two and a half years—it is that long before anything happens. In those two and a half years, people suffer, worry themselves sick and wonder, “Am I going to get out the other side?” The data shows that 30% of patients waited five years for a diagnosis from symptom onset.

Rare autoimmune rheumatic diseases impact on around 170,000 people in the United Kingdom of Great Britain and Northern Ireland. Hon. Members may not recognise some of the diseases, but they include Behçet's disease, lupus, myositis, scleroderma, Sjögren’s syndrome and vasculitis. They can affect many parts of the body—the joints, the skin, the lungs, the kidneys or the heart—and often require cross-medical expertise. That is just a small number of the things that come the way of 170,000 people across the United Kingdom. Unlike the vast majority of rare diseases, the conditions occur predominantly in adult life and are predominantly non-genetic. That means that people do not need to have a history of them: they can come out of the blue.

The Rare Autoimmune Rheumatic Disease Alliance, a group made up of clinicians and charities, such as Lupus UK, Vasculitis UK, Scleroderma & Raynaud’s UK and Sjögren’s UK, has set out a number of key solutions to improve care for RAIRDs. They include strengthening existing specialised networks and setting out what good care looks like through a rare disease equality standard. It has also stressed that it is vital that rare disease is not forgotten in upcoming policies such as the NHS’s 10-year plan, which I will refer to later. In that plan, it is really important that we—by which I mean the Government and the Minister—can give hope to people who suffer from those diseases, and it is really important that they do not think they are on their own. The evidential base response from the Minister would give them that assurance, and it is important that the progress made to date by the UK rare diseases framework is built on. That is my first question: is the rare diseases framework part of the NHS 10-year plan?

I want to share an example that has been highlighted to me of someone who has felt the personal impact of rare autoimmune rheumatic disease. Zoi lives with a life-threatening RAIRD, granulomatosis with polyangiitis vasculitis. In her words, she is “lucky” because she had a relatively short journey to diagnosis. When she looks at others, she thinks she is lucky. I would like everybody who suffers from these diseases to have the same luck—if luck is the word. I do not believe in luck; my personal opinion is that everything is predestined. I am interested in how we make it better.

The quick diagnosis came only because Zoi’s GP recognised her symptoms and knew to refer her right away. Does every doctor have that knowledge? I hope they have, but they might not have the personal observation of that doctor. The difference was that he had had a friend who had died of the disease, so he knew what to look out for and red-lighted those symptoms.

Despite Zoi’s positive experience of diagnosis, however, her experience of care since has been variable—that is the second stage. Following diagnosis of the disease, the care system works its way out. She has faced long waits for appointments and poor communication between teams responsible for her care. In one instance, she received a letter from a consultant four months after the date of the appointment. Was that the fault of the Royal Mail? I do not know. It was not Zoi’s fault that she did not know about the appointment until it was too late. It meant that she had been taking a medication unnecessarily for months longer than needed.

It is about early diagnosis, treatment going forward and speed and urgency in the process to make it happen. Zoi works for a charity that supports other people living with vasculitis. She describes it as “heartbreaking” that hers is one of the best diagnostic journeys one will hear of. She has been diagnosed and gone through the NHS process to get out the other side and try to be better. As she says, hers is one of the best diagnostic journeys, but how can the rest be improved?

How do we improve care? Speedy diagnosis should not be down to Zoi’s word “luck”. People such as Zoi living with serious rare diseases should be able to access vital care when they need it. That is why I am calling on the Minister to consider the following recommendations advocated by RAIRDA. It is important to be aware of the issues.

The first recommendation is to ensure that rare diseases are a focus of the NHS 10-year plan. I am always pleased to see the Minister in his place. I mean that genuinely, not to give the Minister a big head. He comes with an understanding that we all greatly appreciate— I do and am sure everybody else does. Will there be a focus in the 10-year plan on rare diseases? I am pretty sure the answer will be yes, but we need confirmation of that in Hansard today. We need to reassure our constituents who are struggling with disease and are unsure what the future means for them.

The UK rare diseases framework, introduced just three years ago in 2021, has been a significant step forward in securing equity of treatment for rare diseases. I welcome that, but sometimes the system does not work as well as it should. It is crucial that the Government do not lose sight of the work done to date to drive change for people living with rare conditions. Good work has been done, and I always like to recognise good work. It is important that we give encouragement to those who are working hard, and it is important sometimes to think, when we are ploughing away, what we are getting for it. Many of us—all of us in this room, for instance—appreciate what our NHS does. The good work that has happened for those with rare conditions needs to continue with the same zest, enthusiasm and fervour as it has done in the past.

It is particularly important that the working groups on the NHS 10-year health plan consider how improvements in rare disease care will be championed in that plan. In addition, it is important that the plan considers how the work plan of the UK rare diseases framework will be continued past the framework’s end point in 2026. That is my second ask. I am sure that within the 10-year plan the Government are committed to that continuation, but I need to personally reassure my constituents and we need to reassure the nation. We need to reassure those 170,000 individuals and their families and friends.

The framework has been an important tool in co-ordinating methods to improve care for rare diseases, and not just in England. I understand that health is a devolved matter, but this is how it works: whatever happens here, health-wise, is the next stage for us back in Northern Ireland, through the Health Minister. I was talking to another Health Minister on the tube coming here, and we were saying how important that co-ordination across all four regions is. It is good to push for that here, and to see it received back home.

The framework has been an important tool in co-ordinating methods to improve care for rare diseases, not just in England but across the United Kingdom of Great Britain and Northern Ireland. The numbers of people suffering in Northern Ireland may seem small numerically, because we are a region of 1.9 million people, but the impact is huge. I am overtly aware that health is a devolved matter, but I am also aware that the standard can and should be UK-wide. The Minister always gives me and those from other parts of this great United Kingdom reassurance on the co-ordination between here and the Northern Ireland Assembly. I know he has met the Health Minister, Mike Nesbitt, and I am sure they will meet again in the foreseeable future.

How do we develop a standard of care? The National Institute for Health and Care Excellence quality standards consist of defined, measurable statements that can be audited to reduce variations in cases throughout the country. A rare disease quality standard would help to incentivise an increased focus on delivering high-quality care and treatment for rare conditions in the NHS, including rare autoimmune rheumatic diseases. That is my third ask: to develop the standard of care we need to have a quality standard, which would help to incentivise all the regions—all the parts of England, Scotland, Wales and Northern Ireland collectively; better together.

Work in this area is already well under way. RAIRDA has been working hard with organisations across the rare disease community to understand what good care looks like for people living with rare disease, and how that should be reflected in quality statements. Has the Minister had the opportunity to talk to the alliance? I am sure he has; I do not doubt that for a second. It would be good to have that liaison to help to bring together the ideas from the alliance and the Government. It is important that the current work to develop quality statements is built on in a timely way, with the swift development of a rare disease quality standard.

On my fourth request, it is clear that we need development in IT capacity in the fight for diagnosis, to ensure that more people can experience a quick diagnosis, like Zoi did. We need to increase funding for research into the diagnostic journey for rare autoimmune rheumatic diseases, to aid the development of diagnostic technology. It is really important that we look towards the next stage on research and development. How do we do that?

To sidestep slightly, today’s paper—I think it was the Express—said that the Government should be doing something to look at dementia as the numbers rise. Although we are talking about rare diseases that will be well down the Government’s to-do list, early diagnosis is important, as is research and development to improve the capacity to find a cure, to lessen the pain and to lengthen the time that people have in this world. Again, any indication of what is happening with research and development would be greatly appreciated.

Investment in research would help to identify blockers to rapid diagnosis, as well as supporting the development of digital tools for faster and more accurate diagnoses. Some months ago my colleague, the hon. and learned Member for North Antrim (Jim Allister), asked the Secretary of State for Health and Social Care a question in the Chamber about the report on the way forward for the NHS. He mentioned the need for digital data tools, and the Secretary of State replied very positively, so I think the Government are looking into this, but it is important that we have the digital tools in place. With better data and more accuracy, we can help to speed up the process and find a better way forward.

Because of their rarity, it is unrealistic to expect every hospital to have clinicians with expert knowledge of rare autoimmune rheumatic diseases. I understand that, as we cannot know everything. Clinicians may have a small portion of knowledge, but this subject requires expert knowledge, so we need another way of doing it. A 2024 survey found that 29% of respondents were not very, or not at all, confident that the specialist healthcare professionals providing their care understood their condition. How do we improve that? I understand that we are in difficult, financially straitened times, and the Government have rightly committed a large sum of money to the NHS and health services—as they should, and I support that entirely—but we need improvement. My fifth ask of the Minister is: how can we do better? If 29% of respondents are not very confident, or not at all confident, we need to address that.

I believe that improvement can be achieved by developing specialised networks for rare autoimmune rheumatic conditions. Such networks would allow health professionals to access the knowledge and expertise of tertiary specialists, while also developing the capability and capacity to provide more care and treatment locally. I feel that would be the answer to my fifth question, and I am interested to hear the Minister’s thoughts.

Networks already exist, with an excellent example being the Eastern Network for Rare Autoimmune Disease, established in 2016. We have a system in place, so let us look at it—not in a judgmental way—to see what it is doing and where improvements can be made. The network was formed to maximise patient access to relevant expertise while keeping their care as close to home as possible. This has been achieved by setting up excellent communication and cascading training to enable much better co-ordination, digital data sharing and contact between specialised centres and local trusts.

The network lead has calculated that the network’s creation has saved the NHS money, so it has to be considered. The network runs at a cost of between £70,000 and £100,000, but it has generated annual savings estimated at between £150,000 and £200,000. That means that for every £1 spent, the NHS has saved £2, over a seven-year period, through a reduction in the use of inappropriate high-cost drugs.

On my sixth ask, networks throughout the country, like ENRAD, are run on the good will of clinicians. That is not sustainable, and it never can be. I respectfully ask the Minister to perhaps look at the ENRAD scheme, which is run on the good will of clinicians and has been very effective in how it responds, to see how such networks can be better helped to expand. If it saves money—if every £1 saves the NHS £2—then the financial equation is clear, and it should be pursued across all of this great United Kingdom of Great Britain and Northern Ireland.

To address this issue, the Government must provide the necessary financial support for networks to be developed and maintained. That funding would enable the creation of vital posts, such as meeting co-ordinators, and allow clinicians to be reimbursed for their time. Again, I feel that would be the right incentive. Good will is good to have, and there is much of it across this great nation, but, at the same time, there may be better ways of doing things. Such support would ensure that benefits for patients, and the NHS’s budget, could be realised throughout the country. With the £25.3 billion committed to the NHS—I think that is the figure, but the Minister will correct me if I am wrong—this is another way to save money in the NHS, and it really should be done.

My last request is about specialist nurses, who can play a crucial role in supporting people living with rare autoimmune rheumatic diseases. The preliminary results from the 2024 survey show that respondents with access to a specialist nurse were more likely to report that they had access to enough information and support about their condition, compared with those who did not have any access to a specialist nurse. But less than three in 10 respondents—some 28%—had accessed information from a specialist nurse, and this varied widely by condition group. Wow: how important is the role of specialist nurses? I would be reassured if the Minister came back to me in respect of the critical role they play, perhaps exclusively. If only 28% of people have access to information from a specialist nurse and it should be more, what can be done to improve that?

Finally, when developing the NHS workforce plans, will the Minister consider what more can be done to recruit more specialist nurses to support people with rare autoimmune rheumatic diseases? We must always consider the fact that although the chances of getting a rare disease may be one in 10,000, the reality is that the patient deserves all the help we can offer, from diagnosis to treatment and support. I ask the Minister—very kindly, sincerely and humbly—to clarify whether that is this Government’s goal. I believe that it is, but it is not about me today; it is about the people we represent in this House, collectively, together, across this great nation. I believe we have an important role to play.

RAIRDA, with all the clinicians and all the charities, has brought together some positive ideas that can help us together. This is not about blame—it is is never, ever about blame; it is about how we do it better. On behalf of my constituents who have contacted me, and others who will speak shortly, and for the shadow Minister and the Minister, we put forward our case and look forward to support from Government.

[Dr Rupa Huq (in the Chair)]

I remind Members that they should bob if they want to be called in the debate.

--- Later in debate ---

[Jim Shannon]

I thank all hon. Members for their contributions. I refer first of all to the hon. Member for Bootle (Peter Dowd). It is always a pleasure to hear him make his contribution. Even when there are things that are said in other debates which I may challenge, he always delivers his contribution in a lovely way and not many people can do that. Today he delivered something that we all agree with. I thank him for that and I mean that sincerely, but he knows that. He referred to the effect upon the family. He is right, and also right that those who want to work are not able to. He said he did not want to see these diseases at the back of the queue and he is right on that as well. All those things are pertinent to the debate.

My hon. Friend the Member for East Londonderry (Mr Campbell) referred to awareness and training. Again, a very salient intervention for which I thank him. The Minister is right that there is no better way of telling a story than giving an example, and the hon. Member for Mid Sussex (Alison Bennett) told of her good friend, Carrie, and the effect upon her and upon her mummy as well. Sometimes they were wondering what it was all about when the condition worsened, and how the health service responds is critically important.

The shadow Minister, the hon. Member for Hinckley and Bosworth (Dr Evans), brings to any debate his wealth of knowledge—from his own personal experience and from his vocation as well—and he does so sincerely. He referred to the two groups: those with tissue and those with vasculitis. He referred to the vision for the rare disease framework and the new action plan. I did not previously know about the tie-up between Birmingham, Newcastle and Queen’s University Belfast for research and development and I was really interested to hear about it. I know about some of the things Queen’s University do but I did not know about that specifically and so I thank him for that, and for the wee reminder of how to get onto that as well. That has really been helpful.

I am encouraged by what I have heard today. I referred to research networks and support, and working collectively to make this situation better. Disease modification drugs need to be regulated. This is a wee reminder of some of the things to be done—it is not always straightforward by the way, either.

This debate was never about me or about any of us here. It is about patients and our constituents; about those who we serve in this place. Today I think the Minister has developed a very positive response. All of those out there—my constituents, and those of the hon. Member for Mid Sussex and of the hon. Member for Hinckley and Bosworth—will be encouraged, because they will be listening to this debate and they will want to know what the Government are going to do. They will be encouraged by the things the Minister referred to: highlighting the rare diseases, the personal stories, to raise awareness. That the diseases are rare but collectively they are common was a salient and poignant comment. On measuring and reporting progress, he referred to the 2026 end of the framework but the Minister gave us assurance—he referred to a mission and to contacting the four nations so they can approach it together and commit together. I think that is also an answer to one of the questions I asked. That is what the Minister has committed himself to doing and we should be reassured by that.

Diagnosis should be timely and accurate, and the Minister referred to GeNotes and the digital improvements. That is really important as well. He also referred to NICE, to encourage research and development for rare diseases because we have to look forward to someday hopefully finding a solution. He also referred to the ENRAD, which is a good model for all to follow. Government will put this idea to the fore, where there has been a good example. The Minister is right about the economic and health commitment for clinical trials, so that our patients win each time. He also made encouraging comments about training and workforce—early prevention, faster diagnosis, better outcomes. I think those who have rare diseases—170,000 across this great United Kingdom of Great Britain and Northern Ireland, and all the families of those people—will today be encouraged by this debate and the contributions from all sides. Most importantly, I say a sincere thank you to the Minister.

Question put and agreed to.

Resolved,

That this House has considered rare autoimmune rheumatic diseases.

World AIDS Day

Jim Shannon Excerpts

Wednesday 27th November 2024 Westminster Hall

[Jim Shannon (Strangford) (DUP)]

This is the second time that I have been called first in a debate in one day, so thank you very much for that, Sir Mark—I will pick my six numbers for Saturday night now.

It is a pleasure to be here. I commend the hon. Member for Uxbridge and South Ruislip (Danny Beales) for leading today’s debate and for bringing his knowledge to the Chamber. Every new MP brings their own knowledge and particular interests, and I thank him for sharing his. It is also good to acknowledge these issues to help us support and promote positive living for those suffering with HIV and AIDS.

There were 6,008 new HIV diagnoses in England, which is a 51% increase—a really worrying trend. I ask the Minister—it is lovely to see him in his place, as always—what can be done to reduce that figure? Whether people are more reluctant to go for tests or whether it is about the lifestyle that they are leading, it is clear that something needs to be done. The Government committed to achieving zero new transmissions of HIV in England by 2030, but if the number of new diagnoses continues to rise, that target will not be met.

I want to refer to Northern Ireland’s only HIV charity, Positive Life, which has been instrumental in making a difference to the quality of people’s lives for over 25 years, after beginning as the AIDS telephone helpline in 1986. As a city centre facility, it now has a range of services that extend across Northern Ireland. In addition, it helps to prevent the increase in the number of in HIV infections through training, education and raising awareness, as well as campaigning and lobbying.

In Northern Ireland, about 1,000 people were living with HIV in 2016. The figure is now up to 1,325, so there is still a need to address that and the 30% increase in eight years. The latest figures show that the rate of HIV diagnosis in Northern Ireland is falling, but there are more HIV diagnoses among people of a heterosexual orientation.

This World AIDS Day, let us do more to remember those lost to HIV-related illnesses. Steps are being taken through the Government’s HIV action plan so that more can be done to end new HIV transmissions in England and across the whole United Kingdom. I ask the Minister: will he commit to ensuring that the devolved nations can play their part in ending new HIV transmissions by 2030? I know the Minister is committed to that, but I ask him again for the record.

Suicide and Mental Health of Young People: Tatton

Jim Shannon Excerpts

Tuesday 26th November 2024 Westminster Hall

[Esther McVey (Tatton) (Con)]

I beg to move,

That this House has considered the matter of suicide and mental health of young people in Tatton constituency.

It is a pleasure to speak under your chairmanship, Mr Dowd. I would like to convey my appreciation to the Minister for replying to this extremely important and sensitive debate on the management of withdrawal from antidepressant medication, specifically selective serotonin reuptake inhibitors, and the profound impact that that process can have on the mental health and suicide risk of young people.

I would like to begin by conveying my sincere thanks to my constituent, Gina Russell, who met me and bravely shared the experience of her daughter, Olivia, who tragically took her life in September 2021, following withdrawal from SSRI medication. Olivia’s mum is unable to be with us in Westminster Hall today. However, I know that she and her family are watching this debate at home, as they are determined to help prevent others having to suffer the same fate as Olivia.

I would also like to place on record my thanks to the charities Mind, Rethink Mental Illness, PAPYRUS Prevention of Young Suicide, as well as to The Children and Young People’s Mental Health Coalition and the House of Commons Library for the information provided to me before this debate. While the information was insightful, it was deeply disturbing, as it revealed that Olivia’s experience of declining mental health as medication was withdrawn was far from unique and was a known risk, which made me determined to pursue this debate on behalf of her family and thus bring Olivia’s story and her family’s suffering to a wider audience.

Let me start by painting a picture of Olivia, who was an intelligent, creative and hard-working 25-year-old who had just left Tatton to live in London. Her parents remember her as wonderful and vibrant—a loving daughter and a loving younger sister to her brother, Luke; a cherished and adored granddaughter; and a loyal, kind and supportive friend. She lit up a room and was admired by all who knew and loved her.

In November 2020, during the pandemic, Olivia became anxious. She began taking an SSRI—citalopram—to manage her anxiety. Initially, Olivia responded well to treatment. However, when the time came to discontinue the medication in June 2021, she experienced a rapid decline in her mental health, which was far worse than what she had previously faced. She then resumed SSRI treatment in August 2021, finally taking her life in September 2021. When she first came off her medication it was without consulting her GP, because she was feeling better. She should have been warned about stopping taking the antidepressant. The family was later to discover that citalopram is one of the most difficult antidepressants to come off.

Tragically, the Royal College of Psychiatrists suggests that between a third and half of people who take antidepressant medications experience withdrawal symptoms to some extent. The severity and duration of these symptoms, and whom they affect, is not certain. In Olivia’s case, the withdrawal symptoms were severe and the resulting deterioration in her mental state ultimately led to her taking her own life. Members should bear in mind that suicide remains the leading cause of death among young people under 35 in the UK, and the mental health of young people has declined alarmingly in recent years.

[Jim Shannon (Strangford) (DUP)]

I commend the right hon. Lady for the very sensitive way in which she is delivering her speech. In Northern Ireland, the worrying thing about suicides is that we have had an 8% increase in the last year. It worries me greatly that people are unable to cope with life. Does the right hon. Lady not agree that the inability of GPs—I think she mentioned this—to refer patients to early intervention on mental health is something that must be tackled? Early support for young people, and easy access to it, is the only way to give a lifeline to those who are struggling at a very young age.

[Esther McVey]

I thank my colleague and friend for that pertinent intervention.

The pandemic lockdown exacerbated the mental health crisis, as it brought isolation, uncertainty and disrupted routines at home, in education and in the workplace, taking an immense toll on young people’s wellbeing. During that period, the use of antidepressants, including SSRIs, rose significantly. Meanwhile, access to in-person medical support was often severely limited, which may have worsened the challenges faced by patients navigating their mental health and medication.

Last year, the closure of England’s only dedicated antidepressant withdrawal helpline, the Bristol and district tranquilliser project, left a further gap in support services for patients, at a time when mental health services are under immense strain. Analysis from the children and young people’s mental health coalition shows that 1.5 million children and young people could need new or increased mental health support as a result of the pandemic.

Those factors combined to create a perfect storm for young people struggling with mental health challenges, with many prescribed SSRI medication as a solution by their medical practitioners. It is important to note the life-changing and positive impact that such medication has had on many people across the country, and I do not seek to contest that or the ability of those medications vastly to improve the mental health of many patients. However, we must also acknowledge that the process of withdrawing from SSRIs can be fraught with challenges that leave patients vulnerable.

In Olivia’s case, her family believed that she was left in the dark. Her mother recalls that the information provided by her GP was limited and did not adequately warn of the risks of sudden or poorly managed withdrawal. As a result, following her death, the exceptional decision was taken by the coroner to produce a prevention of future deaths report. It found no evidence that Olivia was explicitly warned about the risks of relapse or the potential signs of withdrawal, or told that she might feel worse before feeling better. The report concluded that while advice may have been given, it was not conclusive and concern was expressed regarding the inconsistency of advice that each GP might give patients. The report could not say with confidence that every GP within Olivia’s practice was discussing the key risks associated with SSRI medication withdrawal.

That requires our immediate attention, as the principle of informed consent, which underpins our healthcare system, requires that patients are fully aware of the benefits and risks of any medical procedure or treatment. The General Medical Council’s professional standards for decision making and consent stipulate that doctors’ discussions should recognise the effect of the patient’s individual clinical circumstances on the probability of benefit or harm occurring.

Guidance from the GMC acknowledges that the amount of information doctors provide to patients can vary due to time constraints. Where such time constraints exist, doctors are encouraged to involve other medical professionals, such as clinicians, or to refer patients to the patient information leaflet accompanying their medication. Patients are legally entitled to a patient information leaflet with their prescriptions, but the responsibility for providing it lies with pharmacies. That places the onus on patients, potentially in a vulnerable position, to navigate complex decisions alone. The leaflets are often lengthy and rely on a patient reading and understanding information provided.

The issue is compounded by outdated guidance. Until recently, guidance from the National Institute for Health and Care Excellence—NICE—suggested that withdrawal symptoms typically last one to two weeks. That has now been updated to reflect the fact that symptoms can be more severe and prolonged, but the updates have not yet translated into comprehensive and systematic changes to ensure that patients are adequately supported. Inconsistent guidance on antidepressant withdrawal has resulted in many patients experiencing distressing and debilitating symptoms. Patients have been misdiagnosed as suffering from a relapse of their original mental health condition, and others have been left fearful about stopping using their antidepressants. That may have contributed to many individuals staying on their antidepressant medication for longer than is necessary, with a report in 2023 suggesting that 2 million people are taking antidepressants for five years or more.

What improvements can be made to ensure the better facilitation of SSRI withdrawal? Olivia’s family believe that there are measures that could be taken that would go far in protecting patients when withdrawing from the medication. A move as simple as placing a warning label on the packaging of SSRI prescriptions would be a straightforward way to convey the dangers of the medication. It would not replace the more comprehensive information provided in a patient information leaflet, or the guidance of a GP. However, it would act as a safeguard in circumstances should those fail. The safety of patients’ prescribed medications must be guaranteed, not left to change based on appointment time constraints or whether a patient has read in full the often lengthy patient information leaflet.

The story of Olivia and her family is a painful reminder of the urgent need to address the risks associated with SSRI withdrawal, and the broader mental health crisis facing young people today. While SSRIs have transformed countless lives, we cannot overlook the vulnerability of those navigating withdrawal. We owe it to families like Olivia’s to ensure that no one feels unsupported or uninformed when taking such important decisions. Simple measures, such as enhanced warnings on medication packages, improved guidance for medical practitioners and comprehensive advice can make the process of withdrawal palpably easier and safer, potentially offering better outcomes for individuals navigating the complex process of withdrawal from SSRIs.

I would be grateful for the Minister’s consideration of the issues I have discussed. Finally, in Olivia’s instance, the coroner produced a prevention of future deaths report, so I ask the Minister how such a report can become wholesale advice to the medical profession? Will he work with me to ensure that it does, in order to prevent lives like Olivia’s being cut tragically short?

Tobacco and Vapes Bill

Jim Shannon Excerpts

2nd reading
Tuesday 26th November 2024 Commons Chamber

[Jim Shannon (Strangford) (DUP)]

The hon. Gentleman is probably aware of this, but there are a lot of safety issues with vapes and smoking, especially for young people. One of the issues seems to be that it is unknown just yet what effect vapes may have on adults, but even more so on children. For that reason, does the hon. Gentleman agree that further consideration must be given to the safety issues before we can let young people fully use vapes?

[James MacCleary]

The hon. Gentleman makes an important point. Indeed, my hon. Friend the Member for Bath (Wera Hobhouse) has already raised the issue of spiced vapes in a debate in this House. I think there are a lot of safety concerns relating to vaping, and hopefully this Bill can start to address some of those issues. As a party, we earlier supported the Government’s move to ban single-use vapes on environmental grounds. Vaping has a role in smoking cessation, but as the hon. Gentleman has pointed out, it has to be regulated to prevent harm to children.

On smoking, however, the Bill ventures into more contentious territory, in my view. The proposal to ban the sale of tobacco products to anyone born on or after 1 January 2009 is somewhat problematic. While I appreciate the ambition behind creating a smokefree generation, I worry about the long-term implications of this measure. For one, history teaches us that outright bans often lead to unintended consequences. As we have seen with other prohibitions, a black market can emerge, making it harder to regulate the quality and safety of tobacco products. Then there is the question of principle: should the state prevent grown, consenting adults from engaging in legal activities? I believe we must tread carefully when legislating against personal freedoms, even when those freedoms carry risk. A more effective approach would be to invest in public health measures, such as smoking-cessation programmes, early cancer detection and better treatment facilities.

The Bill also grants the Secretary of State sweeping powers to declare any public space smokefree. While I support protecting children in playgrounds, schools and hospitals, these powers go far beyond that, removing the requirement that a space must pose a significant risk of smoke exposure to be designated as smokefree. This raises concerns about potential overreach, which is understandably creating concern in the hospitality and night-time industry sectors. I urge the Government to clarify this issue when the Bill is in Committee.

Smoking rates in this country are already declining, particularly among young people. In 2021, just 1% of school pupils reported smoking regularly, compared with 30% in 1996. That trend is encouraging, suggesting that education and public health initiatives are working, so while I share the Government’s goal of reducing smoking and vaping rates, I believe this Bill goes beyond what is necessary or proportionate. We should focus on supporting people to make better choices, not remove those choices altogether. There is much to welcome and commend in the Bill, and I congratulate the Secretary of State and the Government on bringing it forward. I hope the Government will consider refining their approach in Committee in some of the areas I have raised, balancing public health priorities with the liberal principle of individual freedom.

Healthcare: Hampshire

Jim Shannon Excerpts

Wednesday 20th November 2024 Commons Chamber

[Dr Chambers]

We never opposed a new hospital—that was something the Conservatives were saying about us. We support a new hospital, we want a new hospital, and we want modern healthcare services in Hampshire. However, we were very concerned that the proposed location of the new hospital is not suitable when we look at how healthcare is delivered throughout Hampshire. Sites just north of Winchester were identified as suitable; when we look at a map of Hampshire, it is clear that those proposed locations would be much more suitable for people throughout Hampshire, including those in the hon. Gentleman’s constituency, to reach emergency services.

Our current A&E department, like other A&E departments, is hugely busy, especially as we head into winter. We know that many people attend A&E because they cannot get the primary care they need. Up to 20% of people who turn up at A&E are there because they cannot get a doctor’s appointment. People who are in a mental health crisis—many are often already on a waiting list—are going to A&E. They take up a huge amount of time and staff resources, often needing 15 to 18 hours of constant monitoring before they can be taken to a place of safety. We also have people turning up with dental issues because they cannot access an NHS dentist.

[Jim Shannon (Strangford) (DUP)]

I thank the hon. Gentleman for securing the debate. While there are other hon. Members in the Chamber know the issues well, does he agree that the ability to bring healthcare into communities is vital, particularly for people in isolated communities who cannot hop on a bus every 15 or 20 minutes, or even every hour, to get to their appointments? Some areas simply cannot have centralised care or a new hospital; they do need localised facilities. If the hon. Gentleman is asking for that, then he is asking for the right thing.

--- Later in debate ---

[Andrew Gwynne]

I hear loud and clear what Conservative Members say about the leadership of their ICB. I hope that the ICB management will obtain a copy of today’s Hansard and read not only those comments, but the Minister’s reply. I expect them to make decisions in a timely fashion, so that there is some certainty for the local population about the new make-up of health and care services in that area—not just for the sake of patients and the local population, but staff. As we redesign services and change towards more preventive, community-focused care, some parts may become obsolete, and it is absolutely crucial that we take the workforce, as well as the population, on that journey of change in services. I very much hope that the hon. Gentleman’s ICB leadership will have heard the message from the Minister at the Dispatch Box, which is that they really need to crack on, make a decision, communicate it and work with Members of Parliament, the public and staff on whichever changes they propose.

I return to primary and community care. As I said, our manifesto commits to moving towards a neighbourhood health service, with more care delivered in local communities, so that problems are spotted earlier. We will bring back the family doctor by incentivising GPs to see the same patient, so that ongoing or complex conditions are dealt with effectively. In doing so, we will improve continuity of care, which is associated with better health outcomes for patients, and our plan will guarantee a face-to-face appointment for all those who want one; we will deliver a modern booking system that will end the 8 am scramble. That is crucial in improving access to general practice.

The hon. Member for Winchester rightly raised the huge problems with dentistry in his area, which are not that uncommon across the whole country. I do not believe that the previous Government’s dentistry recovery plan went far enough; too many people were still struggling to find an NHS appointment. We are working to ensure that patients can start to access additional urgent dental appointments as soon as possible, and we will target the areas that need the most—the so-called dental deserts. Integrated care boards have started to advertise posts through the golden hello scheme. This recruitment incentive will see up to 240 dentists receive payments of £20,000 to work in the areas that need them most for three years. The common reason why children aged five to nine are admitted to hospital—this is absolutely shocking in the year 2024—is tooth decay. We will work with local authorities to introduce supervised toothbrushing for three to five-year-olds in the most deprived communities. These programmes are proven to reduce tooth decay and boost good practice at home.

To rebuild dentistry in the long term, we will reform the dental contract with the sector, with a shift to focusing on prevention and the retention of NHS dentists. To be fair, this has been an issue for all Governments, going back to the Labour Government who introduced the dental contract. They did so for the right reasons, but in 2010, we recognised that the dental contract was not working in the way we envisaged, and that it had to change. It is shocking that 14 years have passed since then with no real action having been taken—we are determined to fix that. At the same time, we will not wait to make improvements to the system to increase access and incentivise the workforce to deliver more NHS care. We are continuing to meet the British Dental Association and other representatives of the dental sector to discuss how we can best deliver our shared ambition of improving access for NHS dental patients.

I have to say that the statistics for Hampshire and Isle of Wight integrated care board make sorry reading. Only 36% of adults were seen by an NHS dentist in the 24 months to June 2024, compared with 40.3% across England, and 54% of children were seen by an NHS dentist in the 12 months to June 2024, compared with 56% across England. In 2023-24, there were 46 dentists for every 100,000 people in the hon. Gentleman’s trust, whereas the national average across all ICBs in the same year was just under 50 dentists, and in 2024, the general practice patient survey success rate for getting an NHS dental appointment in the past two years in the Hampshire and Isle of Wight ICB area was 72%, compared with 76% nationally. They are not great statistics nationwide, but they are certainly not brilliant in the ICB of hon. Members present, and we look for real improvements there.

Turning to the pharmacy sector, we want to take pressure off GPs by increasing the services offered in community pharmacies. There is so much more that our pharmacists could and should be doing to deliver basic healthcare services on the high street and in the community, as part of the shift from hospital to community. That would free up thousands of GP appointments in cases where people do not really need to see a general practitioner for their condition. We are committed to looking at how we can further expand the role of pharmacies and better use the clinical skills of pharmacists as more become independent prescribers—that is where the potential gets really exciting. Now that the budget for Government has been set, we will resume our consultation with Community Pharmacy England shortly. I hope Members will understand that I am unable to say more until that consultation has concluded. Suffice it to say that Pharmacy First and community pharmacies have a huge role to play in improving health outcomes in the community.

[Jim Shannon]

In my former role as an Assembly Member back home, we had a very close relationship with pharmacies. The consultation process that the Minister is outlining for England would be very much welcomed in Northern Ireland, so can I ask the Minister a favour? When that consultation concludes, will he share his findings with the Northern Ireland Assembly, and particularly with the Minister in Northern Ireland? What the Minister is hoping to achieve is what we would also like to achieve.

[Andrew Gwynne]

The hon. Gentleman raises an important point. No part of the United Kingdom holds a monopoly on wisdom, and if we are doing something good or if there is innovation in one part of the United Kingdom, it is incumbent on Health Ministers across the devolved Administrations and here in Whitehall to share best practice—to work together and, where possible, take a four-nation approach. I hope I can reassure the hon. Gentleman that since this new Labour Government came into power, we have really tried to reset our relationships with the devolved Administrations and with the various Ministers. I have had several meetings with Mike Nesbitt on a range of health issues that appertain to the whole United Kingdom on which we want to ensure there is consistency of approach. I am more than happy to communicate further with Mike Nesbitt and colleagues in the Northern Ireland Executive on how we reform our health and social care services in England to see whether things can be taken by them in Northern Ireland. Vice versa, if there are good ideas from Northern Ireland, I am more than happy to consider them in how we transform NHS services in England.

The hon. Member for Winchester mentioned social care, and he is right to raise winter resilience. I have spoken about fixing the front door to the NHS through primary care reforms. We also have a serious job to do to fix the back door and ensure that patient flows through the system are not held up because of a lack of social care. On winter resilience, I hope he will understand that we are working to ensure that there are no crises and that we tackle the issues of social care. Getting beds in appropriate places is a key part of our plan.

In the long term, there are no quick fixes. The Dilnot reforms were announced by the previous Government, but it is fair to say that, when we came into office, we found that the money apparently set aside for the Dilnot reforms had already been spent on other NHS pressures. Laudable though it may have been to spend that money to try to get waiting times and waiting lists down and to fix some of the problems that that Government had created, it left us with a bit of a social care issue, given that the reform money had gone, had disappeared and was no longer there to be spent.

Over the next decade, this Government are committed to building consensus on the long-term reform needed to create a national care service based on consistent national standards, including engaging across the parties. It is good to see the shadow Secretary of State, the right hon. Member for Melton and Syston (Edward Argar), in his place, and I am sure he will be very willing to work with us, as indeed will the Liberal Democrats. We genuinely want to make sure that we get cross-party consensus on the future of our adult social care, so that we can finally grasp this nettle once and for all, and to fix it without it becoming such a contentious issue, as it became, sadly, in 2010 and 2017. Neither of the two main parties has a good story to tell on this, because we have both shamefully used it as a political football from time to time. It is now appropriate that we set aside those politics and get on with fixing social care. I hope that, in due course, we will be able to move forward on that agenda.

I assure the hon. Member for Winchester that we are acutely aware of the problems with mental health services. We both agree that waiting lists are unacceptably high. Indeed, the people of Hampshire and most of England are not getting the mental health care they deserve. He has spoken previously about Lord Darzi’s report, which has shone a searing spotlight on the waiting lists that young people face, in particular. I am immensely proud that this Government are intent on tackling the issue head on, with specialist mental health professionals in every school in England. That is our aim. These NHS-funded mental health support teams in schools and colleges will work with young people and parents to manage mental health difficulties and to develop a whole-school approach to positive mental health and wellbeing.

Infected Blood Inquiry

Jim Shannon Excerpts

Tuesday 19th November 2024 Commons Chamber

[Pete Wishart]

There is no one in the House more experienced than the right hon. Gentleman. I pay tribute to what he did in government and how he brought this issue forward. He is right; we must be a bit careful, but all of us involved are just trying to take the debate forward. He is possibly right that there may be satisfaction that things have moved on and we are at a different stage in the campaign, but it is still important that we continue to ask questions of Government. That is what we are all trying to do in this debate.

[Jim Shannon (Strangford) (DUP)]

Will the hon. Gentleman give way?

[Pete Wishart]

I will, so long as the hon. Member does not poke me in the back, as he did the other evening.

[Jim Shannon]

My constituent has mentioned an outstanding issue that must be addressed. Current proposals only include siblings who were under the age 18 and lived in the same household as an infected person for at least two years after the onset of the infection. The requirement for siblings to have lived in the same house should be removed. Does the hon. Gentleman agree that the loss and suffering of a sibling who did not live in the same household for two years is no less than that of a sibling who did?

[Pete Wishart]

I do, and I am happy that my speech has provided the hon. Gentleman with another opportunity to make one of his interventions, as he does in practically every debate that he attends. He makes a good point, which the House has now heard.

I want to reinforce the point about IBCA’s arm’s length process. The hon. Member for Eltham and Chislehurst is right that it is abundantly clear, in both the interim and the full report, that there is a general expectation that IBCA will be truly at arm’s length, divorced and separate from the Government. We cannot get into the head of Sir Brian Langstaff when he designed the scheme, but I think that he expected there to be a proper arm’s length body that would be responsible to Parliament, not Government. What we have is the other way around, and that will probably be okay, but for extra security, those of us who are interested would like to make sure that it is properly independent, according to Sir Brian Langstaff’s original intention.

As long as there is a sense that this is a Government-influenced body, there will be continuing suspicions—from a community that has been let down so badly for decades by decision makers and Government—that this is the same old approach that we have seen in the past. I ask the Minister to find a way to ensure that we get that proper judge-led, arm’s length body that is responsible to us as the representatives of the people of the United Kingdom, and not just exclusively to Government. I have no issue with all the tributes that people have made to David Foley and all the other people involved, because they have been fantastic, but we are already beginning to see Cabinet Office-based appointments coming through for IBCA. Again, we are not really seeing consultation with those at the sharp end of all this. We need some more of that.

Sir Brian Langstaff said that two expert panels—one representing the legal parts of the issues, and the other the health parts—would work almost simultaneously and in concert with each other, to feed back to the chair of the board. It would be good to see that starting to emerge. He also said—not as clearly, but it was intended—that an expert panel would comprise those representing the community, both the infected and the affected. They would have a similar role to feed into the chair of IBCA. I hope that some of that will happen.

There is widespread support for what this Government have done, and £11.8 billion is a significant sum that everyone is confident will go most of the way towards meeting the compensation expectations, but there are issues. Members have touched on some of them. I will rattle through them—I do not want to detain the House and I have raised them before—but I just want to make sure that we do touch on them.

The hon. Member for Eltham and Chislehurst is absolutely right that the £15,000 for those caught up in unethical research is far too low. This is coming back to all of us again, so I really hope we are able to revisit that. Then there are those who were treated with interferon as a matter of course. They have not been properly and fully included in the compensation scheme, so again I hope the Government are able to look at that. There is concern that hepatitis C payment bandings do not match and reflect the suffering caused. That is what I have been hearing from constituents involved in the campaign, so I hope the Government will be able to look at that.

There is the issue about bereaved parents and children, who will receive very low compensation payments if they are not the beneficiary of the estate of bereaved family members. I think that could be addressed. No compensation has been paid to siblings for their loss and suffering if they were over 18. Compensation for lack of earnings should consider future career progression that was prevented from occurring, rather than simply existing careers that were cut short. Lastly on my list, which is not long but is substantial, is the fact that the need for a date of infection is causing a great deal of anxiety and confusion among the community.

I believe that most of those issues could be properly addressed with the full involvement of community representatives if they have full and open access to Government Ministers and are able to play their part in designing any future schemes. The community should be involved to provide valuable information and advice on the most pressing issues that need to be addressed.

One issue that I want to turn to in the bulk of my remarks is the part of Sir Brian Langstaff’s report that has probably received the least attention thus far: the “why” of all this. Why did this happen? Why were we misled for such a long time? We have had useful discussions about compensation and it is great to see that progress, but unless we explore and examine the reasons why it happened, we will not learn all that much as we go forward. The duty of candour Bill, which I will come on to, is a useful, positive and helpful development, but unless we have a proper examination of what went so badly wrong, then I am not entirely sure we will learn the full lessons of what happened over the past couple of decades.

The inquiry uncovered shocking revelations about the Government’s handling of the issue, including failures to provide full information to those affected by contaminated blood and the delay in acknowledging the extent of the problem. Sir Brian’s inquiry found that both Ministers and civil servants adopted lines to take, or strategies to avoid providing full and candid responses to the crisis. That lack of openness contributed to the suffering of those impacted, leaving many victims and their families feeling unheard and ignored for decades. Those of us in the House in the noughties who were raising these concerns and issues on behalf of constituents who presented in our surgeries remember being dismissed by “nothing-to-see-here” letters from successive Health Ministers. I would not say we were fobbed off exactly, but we were certainly told that there was nothing we should really be concerned about. With all the serious issues that were raised, there was a real sense that none of it was being taken seriously.

Sir Brian Langstaff recommended that Ministers and senior civil servants should be legally required to provide candour and completeness in their responses to public concerns. That brings us to the duty of candour Bill promised by the Government. I think all of us involved in this campaign were delighted to see it featured in the King’s Speech. We look forward to the Government introducing it. Most of the Bill is predicated on the response to Hillsborough. Key lessons have been taken from the infected blood scandal, and from other scandals such as the Horizon Post Office scandal. All of us who have been involved in these campaigns will look forward to our opportunity to debate and design the Bill.

A statutory duty of candour for all public servants, including civil servants and Ministers, would hold public officials accountable for their actions and require them to be transparent in their dealings with the public. Such a law would compel civil servants and Ministers to act with integrity and fully disclose all relevant information, even when it might be uncomfortable or damaging to the Government’s reputation.

In the course of the Langstaff inquiry, Andy Burnham pointed out that during the tainted blood scandal and even earlier, in various materials, the Government had frequently employed the phrase

“no wrongful practices were employed”.

In our debates on this issue, I often refer to Andy Burnham’s evidence to the inquiry, because it was particularly compelling and very helpful. I probably received more letters from him when he was Health Secretary than I did from any other Health Secretary. He talked about the letters that he used to send to Members of Parliament, and expressed his concern about the inaccurate lines provided by departmental officials. He believed that those lines perpetuated false narratives that failed to address the needs of those whose lives had been so devastatingly affected. He emphasised that the Government’s response to the infected blood issue was driven primarily by a fear of financial exposure, and he believed that explained the comprehensive failure to address the concerns of the victims over five decades.

I have called for a further investigation or inquiry into why this was allowed to happen in a major Department of State, given that it clearly led to many of the difficulties that we are now addressing through various compensation schemes. Much of the debate has touched on the Langstaff inquiry, but a separate look at what went wrong would be useful and cathartic for the Government, and would help them to shape their duty of candour Bill. I am not here to criticise them, although it sometimes sounds as though I am; I think that they have made a good start with all this, and we are all grateful for the £11.8 billion for the compensation schemes.

I became involved with this issue when a couple of my constituents were caught up in it. I remember those early days when we did not know what was going on, and the letters from the Department of Health made the situation all the more confusing. Over the decades, I have come to know members of the community. Some have come down to the House of Commons, told their story, and asked us to question Ministers. I pay tribute to Haemophilia Scotland and the Scottish Infected Blood Forum, which have made excellent representations on their behalf. The fact that we are discussing the issue now and have been able to see a clear way forward is largely due to the case that they put, and the fact that they were able to confront Members of Parliament, the Government and Ministers, and we should give them due credit for what they have done to bring us here today.

--- Later in debate ---

[Andrew Gwynne]

I hope that I can reassure the hon. Lady that although health is devolved across the four nations, and I can speak only on behalf of the NHS in England on a number of the recommendations, both the Department of Health and Social Care and the Cabinet Office are working closely and collaboratively with Ministers in the devolved Administrations. Indeed, I and my right hon. Friend the Paymaster General recently had a meeting with Ministers from Scotland, Northern Ireland and Wales to talk about how to take forward the recommendations, on a four-nation basis where possible, and with mutual support across the four nations where there are individual recommendations pertinent to the devolved parts of the United Kingdom. I hope that that reassures her that we are working together. Although I cannot comment on the changes that will be needed for health services in Northern Ireland, which are a matter for the Minister of Health in Northern Ireland, Mike Nesbitt, I am quite certain that those services will carefully and closely consider our work here in England, and the work in other parts of the United Kingdom.

We have waited too long for these actions. People have waited too long for compensation. Indeed, right hon. and hon. Members have waited too long for this debate. More than 3,000 people died before they saw justice; families and our country were let down. There was a level of suffering that is so difficult to comprehend, because questions were not asked at the time, institutions did not face up to the failings, and facts were covered up. Now we know the truth. As we reflect, we are making a concerted effort to improve, because that loss need not be in vain.

I will respond to some of the questions raised throughout the debate, and will refer to other questions directly in the relevant part of my contribution. Should I miss anything because of time constraints, I will write to Members. In opening for the official Opposition, the hon. Member for Kingswinford and South Staffordshire talked about destigmatisation of HIV and hepatitis C. I hope that he understands that the Labour party made a clear manifesto commitment to ending HIV transmission in England by 2030. Officials at the Department of Health and Social Care, the UK Health Security Agency, NHS England and a broad range of system partners are now working together to develop a new HIV action plan, which we aim to publish by summer next year, and destigmatisation will be a key part of that plan.

My hon. Friend the Member for Blyth and Ashington asked about psychological support for family and friends. I reassure him that NHS England has established the infected blood psychological support service in England, which supported its first patients in late August. That includes supporting not just the infected, but the families and friends affected.

I want to turn to departmental failings. The report outlines a comprehensive condemnation of the organisation of blood services, licensing decisions, blood safety and patient safety, with harm compounded by the reaction and handling of Government. I again recognise humbly the criticism of the Department that I stand at this Dispatch Box to represent and its predecessors, and I am committed to ensuring that a tragedy such as the infected blood scandal can never happen again. This Government will prioritise patient safety to ensure that the NHS treats people with the high-quality, safe care they deserve.

Repeated inquiries and investigations have highlighted significant issues with patient safety, which has caused a deterioration in public confidence, as we heard from my hon. Friend the Member for Aldershot (Alex Baker) in an earlier intervention. We must absolutely fix that. The Health Secretary has been clear that we will not tolerate NHS managers who silence whistleblowers. A culture of openness and honesty is vital to ensure patient safety. We want NHS staff to have the confidence to speak out, and we will give them that.

The hon. Member for Eastleigh (Liz Jarvis) raised the question of the safety of blood products. While no medical treatment can be completely risk-free, current safety standards for blood donation and transfusion are rigorous, and England’s blood supply is one of the safest in the world. Processes are in place throughout the blood donation journey to ensure the safety of blood and blood products, including the donation safety check form, testing for specific infections, donor deferrals, regulations and informed consent. According to Serious Hazards of Transfusion, the risk of serious harm because of blood transfusion in the United Kingdom is low, at one in 11,000 blood components issued.

Turning to timelines, so far more than £1 billion has been paid in interim compensation payments to victims of the infected blood scandal. As we heard earlier, applications opened on 24 October for interim payments of £100,000 to the estates of deceased people whose deaths have not been recognised. Parliament has now approved regulations that give the Infected Blood Compensation Authority the powers necessary to pay compensation through the core route to the infected, both living and deceased. The Infected Blood Compensation Authority has begun to process its first claimants under the infected blood compensation scheme.

[Jim Shannon]

In my intervention on the hon. Member for Perth and Kinross-shire (Pete Wishart), I asked about the siblings who qualify. One sibling seems to be worth more than another sibling, and that seems absolutely wrong. I understand that there has been no reply to that in the Minister’s summing up. Maybe he is coming on to it—if he is, I apologise—but I would love to have a response, because my constituents have asked me to ask that question and ensure that we have a response.

[Andrew Gwynne]

I can assure the hon. Gentleman that the Minister for the Cabinet Office is carefully considering this matter. If the hon. Gentleman would like, the Minister for the Cabinet Office will write to him, but he is considering it.

We expect the Infected Blood Compensation Authority to begin making payments to people who are infected under the infected blood compensation scheme by the end of this year. Payments to the affected are expected to begin in 2025, following a second set of regulations.

Turning to a question raised by the hon. Member for Perth and Kinross-shire about the independence of IBCA, it is rightly operationally independent. Parliament would clearly expect the Government to have oversight of a scheme of this size and for there to be proper management, given the amount of public money going into the scheme. It is true that there are only two non-departmental public bodies that are independent of the Government: one is IBCA and the other is the National Audit Office. It is absolutely right for IBCA to have that independence.

Oral Answers to Questions

Jim Shannon Excerpts

Tuesday 19th November 2024 Commons Chamber

[Wes Streeting]

I am grateful for the steps that my hon. Friend is taking to make representations on behalf of her local children’s hospice, both on the Floor of the House and outside the Chamber. I recognise the pressure she describes. We are determined to help hospices to overcome them.

[Jim Shannon (Strangford) (DUP)]

Can the Secretary of State confirm what assessment has been made of the number of women waiting for endometriosis surgery across the United Kingdom? What has been done to reduce waiting lists?

[Wes Streeting]

As my hon. Friend the Minister for Secondary Care said, the wait for women with common conditions such as endometriosis is far too long. That is why we are taking steps to cut waiting times and stop the merry-go-round of repeat visits to the same clinician to get the same answer, until someone finally listens to what a woman has to say.

Respiratory Health

Jim Shannon Excerpts

Thursday 14th November 2024 Westminster Hall

[Jim Shannon (Strangford) (DUP)]

I beg to move,

That this House has considered respiratory health.

It is a pleasure to serve under your chairship, Mr Rosindell. I look forward to hon. Members’ contributions to this important debate, and I thank the Backbench Business Committee for granting it. I was before the Committee a week ago on Tuesday with three requests, and I was well looked after. This is the first of my three debates; the second is on 28 November in the main Chamber, and I am waiting to hear when the third will be. I hope to get more in after that—I will keep at it.

I declare an interest: I chair the all-party parliamentary group for respiratory health, and it is an issue that has affected my family. I became very aware of respiratory health because of how it affected my son. Did I understand it all? Probably not, but I understood it better from interacting with him. He is now 34 years old and married with two children, but he still has issues with his respiratory health.

I am delighted to be able to raise the issue. I look forward to all the contributions, particularly the response from the Minister for Secondary Care. It is always a pleasure to see her in her place: it makes my day and everybody else’s, I am sure. I know that she has a deep interest in the subject, so I am pretty sure that we will be encouraged by what she tells us. I am also pleased to see the shadow Minister, the hon. Member for Hinckley and Bosworth (Dr Evans), in his place. He and I have discussed the matter on a couple of occasions this week: we focused on what we would love to see come out of the debate.

This debate is not about us as Members; it is about our constituents and those who contact us. It will be on behalf of all the people in this great nation of the United Kingdom of Great Britain and Northern Ireland. As chair of the APPG, I will cover issues around asthma, severe asthma, chronic obstructive pulmonary disease and silicosis. The APPG has been conducting an inquiry on silicosis in particular. We have had meetings, usually on Zoom, with at least 20 contributors; the hon. Member for Blaydon and Consett (Liz Twist) and I have attended those meetings regularly.

I will frame my comments around the latest initiatives and the current policy direction, but I first want to say a few thank yous. I am indebted to Sarah Sleet and her wonderful team at Asthma and Lung UK for their outstanding help and ongoing support. They have been enormously helpful to me and the APPG and, I suspect, to other Members present. I welcome their latest report, “A Mission for Lung Health”, which was launched on Tuesday. I was there, as were some Members who are here today and many others who unfortunately cannot be.

I met Dr Jonathan Fuld, the national clinical director for respiratory disease, for the first time to get his expert advice and counsel. I had always seen him on Zoom on a laptop, but on Tuesday I met him in real life: we were able to shake hands and say hello. My thanks also go to Dr Richard Russell of the British Thoracic Society for his insights and opinion, and I pay tribute to the ongoing work of our expert stakeholder groups, which comprise senior clinicians, industry professional bodies and other experts. Whenever we have that vast amount of knowledge, experience and input on a Zoom meeting, we learn quickly: I learned quickly what the issues were.

There have been some very welcome developments in respiratory health recently, including the development of a new guideline for asthma, which is due to be launched soon as a collaboration among the National Institute for Health and Care Excellence, the Scottish Intercollegiate Guidelines Network and the BTS. The seasonal flu and covid vaccination programme appears to have been well planned and is rolling out well this year. Great credit and thanks are due to NHS England for its great work. Back home, where this is a devolved matter, I got two injections in one day: one for covid in the left arm and the ordinary one for flu in the right. It was like a conveyor belt: people were getting it every couple of minutes. It really is wonderful to see how well things can work when things go in the right direction.

The battle with smoking-related respiratory illnesses continues. The Government’s plans on smoking cessation, including through the Tobacco and Vapes Bill, are welcome. I understand that the Bill’s Report stage is coming next week, or certainly the week after. We hope that it will have a big impact in more deprived areas and on outcomes. When we were doing our research, having meetings and doing an inquiry into the matter, it became clear that it was more of an issue in deprived areas and areas of disadvantage. I will say a wee bit more about that later.

I hope that this debate will help to highlight World COPD Day, which falls on 20 November. I am sure that the Minister is well aware of the headline figures on respiratory health in the UK. They are worrying. The reason why this debate is so important is that the evidential base tells us that things are not getting better. That is why I look to the Minister for some succour, support and easement of mind.

Respiratory disease is the third biggest killer in England. In the UK, 7.2 million people have asthma, while 3 million are affected by COPD. These are not just figures; they are people, and their families are affected as well. The UK has a higher death rate due to respiratory illness than the OECD average, and the highest death rate in Europe. My goodness! If that does not scare us, it should. Over the past 10 years, more than 12,000 people have died from asthma. All those deaths were preventable. That is another reason why we are having this debate: because if we can prevent deaths, we should. It is important to put this on the record.

[Chris Bloore (Redditch) (Lab)]

Thank you for your chairmanship, Mr Rosindell. As an asthma sufferer, I know that one of the key elements of ensuring that we get the care we need is an annual survey with a clinician or GP about how our symptoms are either deteriorating or improving. I know many asthma sufferers who are not getting that annual review with their doctor. Some are going years without any sort of review of the deterioration of their symptoms. Given the really concerning number of people who die in this country from asthma attacks, is it not time that we did more to ensure that people get the yearly reviews they really need?

[Jim Shannon]

The hon. Member is absolutely right. If there are deaths of people with asthma that are attributable to not getting regular examinations or appointments with doctors or consultants, that is an issue that must be addressed. I am quite sure that the Minister is taking notes and that her civil servants and her Parliamentary Private Secretary will ensure that information is contributed to the debate.

NHS waiting lists for respiratory care have risen by 263% over the past decade. Poorly controlled respiratory disease results in hospital admissions doubling during the winter period. COPD exacerbations are the second most common cause of emergency hospital admissions. These are worrying figures—as worrying as the issue to which the hon. Member for Redditch (Chris Bloore) refers. New research presented at the European Respiratory Society has shown that the biologics uptake for severe asthma is disastrously poor: the national median for patients in England with severe asthma between 2016 and 2023 is 16%. The uptake varied widely among integrated care boards: it was between 2% and 29% against a target of 50% to 60%. These are worrying figures that indicate an unfortunate trend that should concern us all.

The burden of respiratory disease falls disproportionately on the most deprived. Adults in the poorest 10% of the country are more than two and a half times more likely to have COPD than the most affluent. The 10% most deprived children are four times more likely to require emergency admission to hospital due to asthma than the least deprived. Those figures show a fall-down and a need to focus on those areas.

Lung conditions, especially asthma and COPD, cost the NHS £9.6 billion in direct costs this year and every year. That represents 3.4% of total NHS expenditure. Those conditions result in 12.7 million work days being lost every year. The stats indicate a massive problem that needs to be addressed. The illness and premature death associated with them causes reductions in productivity totalling some £4.2 billion a year, and the conditions have an overall impact of £13.8 billion on the English economy.

All these stats tell us that we have a major problem. I ask the Minister that the NHS prioritise the issue. I understand that it was prioritised by the previous Government, but that that was not acted on because of the election, so I ask respectfully that it be prioritised in our strategy for the time ahead. Improving respiratory outcomes will help to achieve the Government’s ambitions to improve the nation’s health, to halve the disparities in health outcomes, to eliminate waiting lists, to break the winter crisis cycle and to enable everyone to live well for longer.

I have a number of questions for the Minister; I think my staff have sent her a draft of my speech and the questions I will ask. Will she confirm that respiratory health will be a priority for the Government? That is my first big ask. The APPG strongly supports the Secretary of State’s three shifts, which were announced following the Darzi report. I very much welcome that report, and the Secretary of State has done extremely well: it was a difficult portfolio to take on, but he has shown that he has the ideas to take it forward strategically. I hope the Minister can provide an idea of how that will happen for those with respiratory health issues.

The Darzi report proposes a shift from analogue to digital. We certainly have to improve the system that is used for our data and for healthcare more broadly, as the Secretary of State has said in the Chamber; I was very encouraged when I heard him talking about that shift. The other two shifts proposed are from hospital to community and from treatment to prevention. Those three should be front and centre, and they all have an important part to play in improving outcomes. The Government are right to highlight the impact of inequalities and deprivation on health. We strongly support their plans to achieve that through the three shifts, with which they have set a strategic course.

The statistics are clear: we have to improve outcomes for the most vulnerable in society. Our No. 1 duty as elected representatives is to look out for our constituents, particularly those who are vulnerable—that is why we are elected representatives. Our duty is to look after those who are less well-off, those who are physically vulnerable, those who are disabled and those who have other issues in their life.

Mortality rates from respiratory disease are higher among disadvantaged groups and areas of social deprivation, higher exposure to air pollution, higher smoking rates, poor housing conditions and exposure to occupational hazards. That has to be a major focus for us all. The trial of neighbourhood health centres could offer a significant shift from hospital to the community; the Government are considering that, and it is a good step in the right direction. We hope that we will enable a better focus for diagnosis and treatment of respiratory health, which could help to reduce inequalities. As the burden of respiratory disease disproportionately affects the most deprived parts of this great country, winter pressures are higher in those areas, so the centres need to be able to match the local challenges. Will the Minister indicate how that will happen?

Part of the challenge relates to the provision of spirometry testing, which is an essential diagnostic tool for asthma and for COPD. Community diagnostic centres currently offer very few spirometry tests; some offer none at all. I ask the Minister to confirm that spirometry will be widely rolled out, especially in deprived areas where we need its use to be widespread in primary care. It would be extremely helpful if spirometry could receive sustainable funding to be equitably delivered. I welcome the Minister’s thoughts.

As the Minister will be aware, the national screening committee has recommended introducing a targeted lung cancer screening programme across the UK. However, the screening programme only explores the possibility of lung cancer; unfortunately, it does not focus on addressing incidental findings of undiagnosed COPD identified during the screening. Including those findings would enable neighbourhood centres to help deliver better care for COPD.

We are aware of some work being undertaken in Hull to roll incidental findings into potential COPD diagnoses. I ask the Minister and NHS England to look closely at the outcomes of that study, which I believe will give some direction on what needs to be done in the United Kingdom. We are deeply grateful to those in Hull who are working on COPD diagnosis.

The national screening committee’s guidance on COPD has not been reviewed since 2019. I ask the Minister whether there are any plans to revisit that and to bring it up to date. It is five years since it was done, and the figures indicate a worrying trend of more disease. We need to have that in place.

Overprescribing of SABA inhalers—short-acting beta agonists—remains a big problem. Guidelines would be of enormous help. I ask the Minister to ensure full support for the NHS to implement new guidelines.

The APPG has been looking at the impact of inequality for some time. We highlighted that at our COPD event in the House at the end of last year. It was a well-attended event with constructive comments. As we always do in the APPG, off the back of that, we are looking forward more strategically, with a number of asks. We intend to hold regional events to enable local clinicians to inform us what more needs to be done. There is nothing better than asking clinicians the best way forward. They know. They deal with patients daily, and we deal regularly with constituents, and that helps us to focus attention, specifically on prevention.

The number of asthma deaths is far too high. They are worryingly high, as the hon. Member for Redditch mentioned. It has to be a priority for us all to reduce deaths as quickly as possible and for that to be an integral marker in the 10-year plan. The Secretary of State is giving us a 10-year plan. Perhaps the Minister can tell us today where the asthma and respiratory health focus is in that 10-year plan. It needs to have that focus, and I hope we get that response from the Minister today.

We are 10 years on from the national review of asthma deaths report and very little has changed in terms of asthma outcomes. A recent study showed that people on lower incomes reported greater use of oral corticosteroids than people on higher incomes. These findings highlight that there may be an increase in OCS prescriptions for people with asthma and COPD in more deprived areas. The study results are similar to those reported in the 2019 survey by Asthma and Lung UK. I again urge the Minister to keep an eye on that study, to see what lessons we can learn. I know the Minister is committed to making things better and we support her in her quest to do so, but I believe there are many who have helpful contributions on how that can be done.

The APPG also welcomes improvements in inhaler technology, specifically the move to combination inhalers, which will ultimately eliminate the use of twin inhalers. That should benefit both asthma and COPD patients and will contribute to the NHS’s net zero targets. There are lots of things that have to be done. We all subscribe to the net zero targets—they need to be addressed—and this is a way of achieving two goals in one.

We welcome the Government’s commitment to increasing the NHS workforce. That is very good news as well. We will see how that looks in the workforce plan next year. I ask the Minister to ensure that with a significant increase in staffing levels in primary care, we will see an end to untrained staff undertaking annual asthma reviews. I do not want to be too critical—that is not in my nature —but when there is an anomaly we have to address, it has to be said.

The APPG warmly welcomes the promise of the outcomes of the 10-year plan, and we will submit our response to the consultation. To have any real impact on respiratory health, though, we believe the plan has to be disease specific and contain suitable outcome measures for respiratory health. Will the Minister confirm whether the plan will include disease-specific measures for respiratory health? Again, I ask the Minister to benchmark metrics at the start of the plan and to factor in regular outcome updates at three, seven and 10 years. If we do that at those points, we can chart the progress, or perhaps the lack of progress, and make improvements. The metrics could include fewer asthma deaths; reduced hospital admissions for asthma and COPD, especially winter admissions; prescription data; and reduced incidence of asthma and COPD in the most deprived areas. Interim data outcomes will enable us to determine whether the plan is on track to deliver the outcomes we all want to see.

The use of biologics is of particular concern to the APPG and features regularly in our meetings. I am sorry to say that figures on the use of biologics in England are simply dreadful. The national median by patients with severe asthma in England between 2016 and 2023 sat at 16%, and the uptake varied widely among ICBs at between 2% and 29% against an uptake expectation within the clinical community of 50% to 60%. It just does not seem to be working. Biologics treatment has been described by our clinical advisers as life-saving for severe asthma patients. There is both wide regional variation in access, and unacceptable delays to the start of treatment. Many patients who need urgent treatment have to wait years to get access to the services that will prescribe biologics to them. That is an inefficient use of NHS resource and means that the health of patients is deteriorating while they wait for the right treatment. I do not want to see that, hon. Members do not want to see that, and I know the Minister does not want to see that either.

We need more easily accessible severe asthma services. Again, I would be much obliged if the Minister could meet us to look at how we can provide better asthma care for those with the highest burden of disease. I hope that the NHS innovation and adoption strategy will put forward solutions to tackle low and variable uptake and the access to innovative treatments, such as severe asthma biologics. The APPG would like to see a funded transformation with the health innovation networks and clinical leadership on the implementation of NICE guidance on respiratory health at neighbourhood level and on the delivery of biologics.

We are being constructive—the Minister knows that I will always be constructive because I believe we need to move forward together and ask the questions. I note the Secretary of State’s recent remarks on data sharing and the call by Asthma and Lung UK for greater data sharing in its report, which urges the Government to

“Improve data collection and analysis across the care pathway to bring together primary and secondary data, and make high quality, publicly available data which will help ICSs target care where it is needed and ensure accountability”.

We fully support that, and I do not think there is anybody in this room who would not support that, because it is absolutely the way forward.

We are also looking closely at the recent increase in silicosis cases around the country, especially in relation to engineered stone. It is something that maybe not everybody is aware of, although I suspect those in this room are. There is a real threat that the rise in what are entirely preventable cases may add considerably to local health pressures. The Secretary of State has been clear that we need to address the waiting lists and take more action to prevent cases, and that is something I have suggested needs to be done as well. There are a number of recommendations in our silicosis report, and a key recommendation concerns wider data sharing between primary and secondary care.

The APPG will hold a roundtable in the new year to ensure a timely discussion to inform the 10-year plan. I ask the Minister if she would be most kind and put it in her diary and come along. We are not here to give the Minister a hard time, but to take her contribution and help us to move forward together. The Parliamentary Private Secretary, the hon. Member for Aylesbury (Laura Kyrke-Smith), is not nodding because she cannot do that for the Minister, but she is indicating—I will send over the date, if that is okay.

Since 2015, 250 to 300 patients have been diagnosed with CF each year. Despite medical advances in recent years, in 2022 the median age of death for those with CF was just 33. Wow—think about that.

The Cystic Fibrosis Trust has called for greater financial support for people with cystic fibrosis for a number of years. In 2023, a University of Bristol study reported that a typical family with cystic fibrosis loses £6,800 a year due to the extra costs of living with that condition. The CF Trust has multiple requests, including for the Government to explore additional innovative market-incentive options to encourage the industry and others to fund research and trials for new antibiotics because of current antibiotic resistance.

I believe we have seen a good and positive contribution to research and development, but we are probably at a cusp where a bit more investment and help would get us over the line. We need to prioritise diagnostics for antimicrobial-resistant infections to prevent further lung damage. The Trust’s final request is to implement an early warning alert system on pollution for people with respiratory conditions.

I am looking forward to hearing what others have to say. The fact of the matter is that we have an opportunity this time because we have a Government who are spending £22 billion on the NHS. That is a massive amount of money. Every person in this great United Kingdom recognises what that means. It is the time to get it right. The Secretary of State has indicated that he is of that mind, and I know the Minister is also of that mind, so we have an opportunity to make effective change to the lives of people throughout this great United Kingdom of Great Britain and Northern Ireland. Some of the £22 billion will come to us in Northern Ireland through the Barnett consequentials, which is good news as well. It means that everybody gains across this great nation.

I believe now is the time to act. We in the APPG want to do all in our power to inform, support and guide the Minister and her Department in effecting change and improving quality of life for those with respiratory health issues.

--- Later in debate ---

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

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

[Jim Shannon]

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

[Liz Twist]

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

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

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

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

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

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

--- Later in debate ---

[Jim Shannon]

I thank everyone for their incredibly helpful contributions. It is no secret that I always look for a consensual debate, because that is more positive. That is what we have had today.

We have had the opportunity to discuss many issues. With your indulgence, Mr Rosindell, I will speak to each. Since coming to this House, the hon. Member for Newcastle-upon-Lyme—

[Adam Jogee]

On a point of order, Mr Rosindell. My constituency is Newcastle-under-Lyme, not Newcastle-upon-Lyme as several colleagues have called it.

[Andrew Rosindell (in the Chair)]

That will be on the record.

[Jim Shannon]

I will never get it wrong again. I thank the hon. Member for Newcastle-under-Lyme (Adam Jogee) for his contribution. Air quality has been a massive issue for him since he came to this House; he has reiterated that over and over again. I am hopeful that he will have the success for which he hopes. He referred to deprivation and low incomes as factors. Priority for respiratory health is needed, as the Minister confirmed. The hon. Member for Redditch (Chris Bloore) rightly referred to the need for regular asthma check-ups.

It is always a pleasure to work alongside the hon. Member for Blaydon and Consett (Liz Twist). She and I have talked about this issue over the past five or six years. It was a pleasure to hear her contribution, which included first-hand evidence from her surgery. I agree that we need improved access to diagnostics and medical help.

I thank the hon. Member for Sherwood Forest (Michelle Welsh) for her personal contribution; nothing tells a story better than a personal contribution. As the Minister says, we hope that her family members are able to deal with their issues in a positive fashion, and hopefully the medical care will be there as well. The hon. Lady referred to how the disease drastically changes lives, with some people being unable to walk. She also focused on charity work, which is really important.

The hon. Member for Winchester (Dr Chambers) referred to air pollution, as his party has done for many years. He underlined the problems and the impact on children, and he referred to our old housing stock. These are critical issues. We sometimes forget about farmer’s lung, but those who live in the countryside do not, because it is a big issue. He also referred to RSV, the impact on pregnant women and the importance of vaccination.

The shadow Minister, the hon. Member for Hinckley and Bosworth (Dr Evans), reminded us that his first job related to this issue. That has allowed him to make an incredible input into the debate: we thank him for everything that he has put forward. It is fair to say that the last Government had a plan, but a more holistic approach is needed. I thank him for his role on the APPG. Prevention is absolutely the way to go, and data is important. He also mentioned spirometry.

The Minister responded in excellent fashion. I wrote down all the things she said. I thank her for committing to a meeting. I am sure that her colleague the hon. Member for Gorton and Denton (Andrew Gwynne) will be watching the debate and will respond. She referred to her former job and vocation, in which she had dealings with COPD directly. I am also grateful for the roundtable commitment. The Government have committed to a smoke-free society, on which a Bill is pending: that will be important in preventing lung cancer, especially for children. She also referred to damp in homes, an incredibly important issue that comes up all the time in the main Chamber.

The Minister responded very positively, if I may say so, to all the issues on which we required answers, including vaccinations, energy efficiency and fuel poverty. The respiratory network across the nation deals with COPD and major contributors to respiratory health issues, and the Government are committed to it. Respiratory health and biologics are priorities for the Government. It is not often that we have a debate with so much input from everyone, and yet we have a Minister who answers all the questions.

Question put and agreed to.

Resolved,

That this House has considered respiratory health.

National Insurance Contributions: Healthcare

Jim Shannon Excerpts

Thursday 14th November 2024 Commons Chamber

[Madam Deputy Speaker (Ms Nusrat Ghani)]

I call Jim Shannon.

[Jim Shannon (Strangford) (DUP)]

Thank you, Madam Deputy Speaker. As Members know, I am the last person —when I am called, the debate is almost over.

Will the Minister confirm whether consideration has been given to the fact that the rise in national insurance contributions will not affect the NHS as a whole, as the block grant for us in Northern Ireland will cover it? However, GP practices in my constituency of Strangford will suffer, and unlike high street businesses or manufacturing, they cannot increase prices to cover that impending rise, leaving practices with no option other than to reduce hours in order to stay solvent. Does the Minister agree that this is the last thing already overstretched GP practices need, and will she commit to take this issue back to the Treasury for reconsideration as it relates to healthcare businesses such as GPs, dentists and pharmacies?

[Karin Smyth]

As the hon. Gentleman knows, health and social care is a devolved issue. We will continue to work closely with all the devolved areas, because we think that that is important, unlike the last Labour Government—the last Conservative Government. [Laughter.] I slipped there—I almost got through.

We absolutely understand the precarious nature of general practice and, in particular, I understand the really serious issues around health and social care in Northern Ireland. The hon. Gentleman knows that, and he makes a good case for the sector. We want to ensure that it supports people in Northern Ireland with the good primary and community care they deserve.

Infant Formula Regulations

Jim Shannon Excerpts

Wednesday 13th November 2024 Commons Chamber

[Chris Webb]

I agree. We know from recent studies by the Jamie Oliver Food Foundation and others that this is a serious issue that must be considered urgently.

Last week, the Competition and Markets Authority published its long-awaited interim report on infant formula. The report outlines its concerns about the market, all of which appear to be contributing to parents paying over the odds.

The regulations on the advertising and labelling of infant formula are rightly designed to protect parents and encourage breastfeeding. UK law is informed by, but not identical to, the World Health Organisation’s international code of marketing of breast milk substitutes. Our regulations cover only infant formula intended for babies under six months old. That loophole in UK regulation permits hidden marketing through carelines and the widespread legal advertising of follow-on milk—an unnecessary product that does little more than promote higher sales of a brand’s infant formula. I urge the Government to consider strengthening UK regulations to close the loophole on the marketing of breast milk substitutes, in line with the WHO code.

However, strong regulation should not hinder affordable access to infant milk. Parents are worse off because the current regulations mean that food bank vouchers, loyalty points and store gift cards cannot be used to buy infant milk, and food banks are prohibited from stocking it. As a volunteer for Blackpool food bank for over seven years, I have witnessed at first hand how urgently it is needed. For too long, the third sector and charitable individuals have been desperately scrambling to fill the gap that the previous Government left wide open and allowed families to fall into. When it comes to infant formula, even that safety net has been removed. I recently met Richard Walker, the chairman of Iceland Foods, who shares my commitment to ensuring there is a fair price for formula for parents. Along with over 100,000 signatories to the Metro and Feed UK’s “Formula for Change” campaign, I support the call to allow parents to use food bank vouchers to buy infant milk.

[Jim Shannon (Strangford) (DUP)]

In the last Parliament, I was a member of the APPG on infant feeding and inequalities alongside Alison Thewliss, a former Scots Nats Member. I am very pleased that this issue is being debated, and I congratulate the hon. Member for Blackpool South (Chris Webb) on securing the debate. Does he agree that, while we can all acknowledge the well-documented benefits of breastfeeding, it simply does not work for some mothers, and sometimes the baby does not put on weight? While breast is undoubtedly best, we need to ensure that formula is available and is highly regulated, but not highly costly, in order to provide the best possible alternative. That means not pretending that formula does not exist, but doing all we can to ensure it is the best that we can offer when breastfeeding fails.

[Chris Webb]

I completely agree with the hon. Member. I have seen that with my own son, who would not take to breastfeeding, so we had to resort to infant formula. We need to make sure that all parents have the best product available for their children to ensure they have the healthiest start to their lives.

I ask the Government to examine the fact that food bank vouchers cannot be used to buy infant milk, to ensure the regulations do not punish the very people they are designed to protect.

The CMA report recommends potentially relaxing regulations to permit promotions and price reductions and incentivise competition. However, although discounts would benefit parents in the short term, there needs to be a sustainable solution to permanently lower the price of formula. The infant milk market in the UK is highly concentrated, with just three manufacturers accounting for over 90% of supply. Formula manufacturers have blamed rising costs, but profit margins have inflated beyond them. Those firms pass responsibility to the retailers, who they say ultimately set prices. This is not just passing the buck, but taking it from the pockets of struggling parents to line those of monopolistic multinational conglomerates whose combined annual profits are £15 billion.

Retailers do have their part to play, though. They must do their bit to protect families by capping their prices in line with the CMA report’s recommendations. In the coming weeks, I will meet with three major supermarkets to encourage them to cap prices and follow the lead of Aldi and Lidl in developing a reasonably priced own-brand infant formula. The cost to parents of buying the most expensive brand can add up to £1,000 a year—more than twice as much as using an own-brand infant formula. That is despite the fact that strict regulations ensure that these products are nutritionally equivalent.

Parents naturally want to do the best for their baby, and decisions about feeding are inevitably made at a time when mothers and fathers are at their most vulnerable. The CMA report points out that this can lead to them actively choosing a more expensive product, assuming incorrectly that a higher price means better quality. That assumption is not based on price tag alone, but on decades of brand-building by manufacturers trying to claim the superiority of their products. The important public health message that all infant formula meets a baby’s nutritional needs must be more effectively communicated. The Government must also consider the CMA’s recommendation that they procure infant formula themselves, providing it to parents at a lower price point while putting downward pressure on other manufacturers’ prices.

Prices remain unjustifiably high, but Iceland’s leadership in this campaign has led to a welcome reduction in prices across the sector. Since February, there has been a positive shift, and there are now three formula products available in supermarkets that are affordable with the Government’s weekly Healthy Start vouchers, but those supermarkets are not accessible to everyone. Blackpool has the fourth highest uptake of the Healthy Start scheme, but around 150,000 families nationally who are entitled to access it still do not. There is a clear need for us to ensure that all those who are entitled to Healthy Start vouchers access them, while simultaneously increasing their value from £8.50.

This is a matter of huge importance, and I am pleased to have been given the opportunity to raise it in the House. I urge the Government to consider my points and to work with me and stakeholders to ensure that accessibility and affordability are at the heart of the Government’s policy on infant formula. We must examine the comprehensive recommendations in the CMA’s report and the views of those in public health and the third sector, who understand the urgency of this debate. I invite Ministers to consider the voices of parents in Blackpool, who are at the sharp end of this price crisis, but who are brilliantly supported by our local infant feeding support team.

Raising a child is one of the most challenging and demanding things we will do in our adult lives. The Government’s policy must lighten the load on parents to ensure that it can be one of the most rewarding things we do. We must ensure that every child in this country has a healthy start to life; we cannot allow children in constituencies such as mine to be failed before they have even taken their first step.