Rare Autoimmune Rheumatic Diseases

Gregory Campbell 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.

Children’s Hospices: Funding

Gregory Campbell Excerpts

Wednesday 30th October 2024 Westminster Hall

[Jim Shannon (Strangford) (DUP)]

I thank the hon. Member for Liverpool West Derby (Ian Byrne) for setting the scene. It is nice see him in his place; he used to be in opposition, and now he is in government. He has been elevated, so well done.

I was saddened to hear about Zoe’s Place in the hon. Gentleman’s constituency having to become a stand-alone charity to encourage investment. There are many children who rely on these services, so it is never nice to hear the sort of news which he has presented today. Our hospices are pivotal within their local communities, so it is great to be here to discuss how to support them further.

It is also a pleasure to see the Minister and the shadow Minister, the hon. Member for Sleaford and North Hykeham (Dr Johnson), and I look forward to their contributions. About a fortnight ago I attended a pop-up hospice charity shop here in Parliament. It was helpful to discuss the funding crisis facing our hospices with other Members and representatives. I also signed an open letter to the Minister of State for Care, and I look forward to hearing his responses in relation to these issues.

Over the years, I have supported the Northern Ireland Children’s Hospice, which holds three or four charitable events in my constituency of Strangford every year. People are very generous and incredibly kind. The money that John and Anne Calvert help to raise through those charity events is something we all appreciate.

To give some background on the situation in Northern Ireland, the Northern Ireland Children’s Hospice is instrumental in providing endless amounts of support for people and is incredibly helpful. Horizon House in Newtownabbey is a seven-bed in-patient centre that aids the local community, including through sibling and bereavement support. It goes beyond what would normally be expected, providing community care alongside hospice at-home and palliative care for 350 babies across Northern Ireland, which is really important.

In February this year, the hospice had to reduce its bed capacity to six due to a reduction in Government funding, with the intention of running six beds from Monday to Friday, and three beds on Saturday and Sunday—a drastic change from the seven beds, seven nights model. Incredibly active fundraisers added a huge £14 million to the four hospice care facilities back home.

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

My hon. Friend is making a fundamental point about the community raising millions of pounds to support hospices, particularly palliative care, across society. Does he agree that that has to be seen, not as a replacement for Government funding, but an addition to it?

[Jim Shannon]

I thank my hon. Friend for that intervention. He is absolutely right. The £14 million raised in Northern Ireland for hospice care is extra money and—I say this very gently to the Minister and those in positions of power—that should not be taken by the Government as, “Well, we can take £14 million off what they’re doing in Northern Ireland because we’ve got £14 million from the volunteers.” That £14 million is vital to ensuring that the care goes forward.

With increasing reports of closures and decreases in some services, there is a clear need for the Department of Health, wholly supported by the Barnett consequentials, to find ways to financially aid our hospice services so that, years down the line, we do not see impending closures. The core priority, I believe, is to protect these vital services that provide so much to families across the United Kingdom of Great Britain and Northern Ireland.

Together for Short Lives revealed that the Northern Ireland’s Children’s Hospice has forecast a budget deficit of £1.46 million for 2023-24. That is due in part to a 6% cut in the hospice’s statutory income. Our hearts— and, most importantly, our thanks—are with the staff of hospice centres who work tirelessly to support those young children and families through that end of life palliative care.

I conclude with this, Mr Twigg—I am trying to keep to time—I strongly sympathise with the hon. Member for Liverpool West Derby and his constituents on what they are going through. I have every hope that the Government can do something to support the devolved nations, and indeed NHS England, in the funding crisis. This is the responsibility of the Department of Health back home, but that must be fully supported by Westminster, right here.

Preventable Baby Loss

Gregory Campbell Excerpts

Wednesday 4th September 2024 Westminster Hall

[Mrs Hodgson]

I absolutely agree. I only realised that the certificates were just for England when we were pulling together my remarks for today. That is remiss; I encourage the devolved nations to follow the example of England and bring the certificates in, because they really make a massive difference to parents suffering early baby loss.

Despite these improvements, we still have a long way to go to provide the care and respect that all families need during such a difficult time, as well as to ensure that we take steps to reduce stillbirth rates. As expressed by Bliss, an organisation that campaigns for change for babies born premature or sick, there has been a concerning increase in the neonatal mortality rate and the pre-term birth rate. It points to a high variation in care as a factor that can be addressed to reduce that worrying increase.

As the MP for Washington and Gateshead South in the north-east, I know just how damaging the impact of inequality can be as we experience the acute end of regional inequality, which can manifest itself through less investment and less access to the resources we need. In relation to baby loss, inequality prevails and, as Bliss highlights, the number of babies lost to mothers from the most deprived areas has increased at a rate twice that of babies lost to mothers living in the least deprived areas.

It would be remiss of me not to mention that neonatal mortality rates are much higher for babies from an ethnic minority. Babies of black ethnicity are twice as likely to be stillborn as babies of white ethnicity. It is a failure of our healthcare system that babies of black and Asian ethnicity continue to have much higher rates of neonatal mortality. Disgracefully, that disparity is also seen in maternal healthcare. Maternal mortality for black women is currently almost four times higher than for white women. As some Members may have heard, the tennis star Serena Williams has spoken in great detail about her awful experience in that regard. I encourage Members to read her article in Elle magazine, which is still available online. Even as a very wealthy and globally recognised figure, Serena’s voice was dismissed during pregnancy and childbirth.

We must ensure that there is the right training and support for healthcare professionals to ensure that all those terrible disparities are addressed. The cases that we have heard today are so traumatic. Crucially, we must centre the voices of patients—usually mothers, but sometimes their partners as well—and listen to what they are saying about their own bodies and experiences. As we have seen with the high level of disparity in neonatal healthcare outcomes, we will fail to achieve change if we are not listening to those at the heart of this crisis.

If we are to effect change, we must also increase our midwifery workforce, as well as increasing the capacity in our NHS to allow the necessary training to be delivered. I am pleased that Labour is taking strong action to get our NHS back on its feet. In our manifesto, we committed to training thousands more midwives as part of the NHS workforce plan. It is also significant that Labour has said that we will ensure that trusts failing on maternity care are robustly supported into rapid improvement, and we will set an explicit target to close the black and Asian maternal mortality gap.

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

Does the hon. Member agree that two points that have emerged from this important debate are that greater resources are required to deal with the problem, and that a greater understanding is needed of the individualistic nature of the problem? No two mothers or families will react to baby loss in exactly the same way, as she and other hon. Members have so passionately outlined. Those are two of the most important issues arising from the debate, and hopefully we can learn from them.

[Mrs Hodgson]

I absolutely agree. The hon. Member makes a very valuable point: resources matter, but it is also about how they are implemented. Human interaction and professional training is so important.

I am hopeful for the future and proud of the change that has been made so far. Looking at all colleagues in the Chamber today, I know that together we are a powerful voice that can make such a difference to families during that terrible time and can help to improve outcomes for others, so that fewer people experience this most dreadful loss in future.

Glaucoma and Community Optometry

Gregory Campbell Excerpts

Tuesday 30th April 2024 Westminster Hall

[Jim Shannon]

Thank you for bringing me and us all back to focus, Dame Caroline. The reason why I said that is that the Minister has been to Northern Ireland and always has an interest in health issues, and I know that his journey was to Queen’s University to explore such issues. That is the connection. The fact it is a lovely place is just wonderful, but that is not the reason why we are here.

The approach to making the system more fit for purpose must be UK-wide. Whenever we ask for what we are going to ask for at the end of this debate, I know that the Minister and the shadow Minister will have similar ideas to mine. I understand that health is devolved in all the regions, but it is clear that we need joined-up thinking to a joint problem. That is what I wish to highlight this morning.

Visual impairment and sight loss cost the UK economy some £36 billion each year, yet we allow 22 people to lose their vision to preventable causes each week. That is the thrust behind what I am aiming for today: to stop 22 people losing their eyesight this week. We can work alongside the optometrists and the opticians, and have a partnership whereby people can have their eyesight tests done more often. I will give some examples. Maybe people do not think of having their eyesight tested regularly, but they should. Optometrists in my area have told me that they are happy to work with the NHS or the health and personal social services in Northern Ireland to make that happen.

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

I congratulate my hon. Friend on securing the debate. On the frequency of eye testing, does he agree that the issues we are discussing today are symptomatic of other parts of the health service? People ignore eye problems and get to the point where problems could have been solved had there been earlier detection and more frequent eye testing. Even if nothing else transpires from this debate, if we do a little to try to ensure that people have regular eye tests, we can prevent some of the problems we are discussing from getting worse.

[Jim Shannon]

I thank my hon. Friend for his intervention, and say to the Minister: that is the thrust of this debate. If nothing else comes from this debate but the answer was along those lines, I would be more than happy. That does not mean that I will sit down now, Dame Caroline— I want to give a wee bit more background and a couple of examples.

Visual impairment and sight loss cost the UK economy £36 billion. The loss of sight is the loss of independence and confidence, and for many it is the loss of their life as they know it. If it can be prevented, it must be, so it is about prevention, early diagnosis and checks. This morning my focus—excuse the pun—will mainly be on glaucoma, a group of eye diseases that damage the optic nerve, usually due to changes in pressure inside the eye, or ocular hypertension. Data from Specsavers revealed that there have been some 30,000 referrals for glaucoma in people aged 40 to 60 just in the last year. Many more have been missed, accounting for nearly a third—30%—of all glaucoma referrals.

Some years ago I spoke at an event in Cambridge. I was asked to come along as a health spokesperson to an eyesight and visual impairment event that took place at a university in Cambridge—not the University of Cambridge but one of the other ones. They were doing tests and I got my eyes tested for glaucoma. It was rudimentary, but the guy said, “I don’t want to worry you, but I think you need to go and have your eyes tested when you get home.” Whenever I got home I went to my optician right away. I could not understand it, because I had seen the optician a month before and was sure that my eyesight was okay, but the Cambridge guy had given me a wee graph that seemed to show that there were issues relating to glaucoma that needed to be addressed fairly quickly. Why is that important? Because my father had glaucoma, and they say it needs to be checked because it is hereditary and passes from generation to generation.

When I got home I went to see my optician right away and told her what was going on. I explained the circumstances and took her the graph. She said, “Look, Jim, I checked your eyes. I do not see anything wrong with them, but do you want them checked thoroughly?” I said, “Yes, definitely.” So she sent me to the eye clinic in Belfast’s cathedral quarter and I got my eyes checked. Everything is done there, 24/7—all the eye checks that are humanly possible. For ages after, my eyes were stinging. The guy came out after an hour and said to me, “I have done every possible check on your eyes. There is nothing wrong with them.” That was good news after a very thorough check. Since then, my optician has done a thorough check for glaucoma on my eyes, simply because it is hereditary and to ensure my peace of mind. I tell that story because it worked out well for me, but it does not work out well for everyone.

Typically, there are no symptoms to begin with, as glaucoma develops slowly, affecting the periphery of the vision at first. That means that hundreds of thousands of people in the UK currently have glaucoma. Betty in my office gets an annual eye test because her father had glaucoma and she was aware of the issue. When I asked my younger staff when they had last had their eyes tested they said, “Not since school. I don’t need glasses so why should I get an eye test?” I immediately asked them to book a test, and told them that it is like an MOT that needs to take place. The MOT tells us if our car runs okay and what repairs we need; it is the same when we get our eyes tested. The eyes may be known as the window to the soul, but they are also undoubtedly the window to the view of overall health that can be found in an eye test. Eye tests are imperative for finding an early diagnosis of diabetes, for example, and a host of other health concerns.

I remember two occasions when opticians saved the lives of gentlemen who came to see me in my office. One guy I know well came in and he was a terrible colour. I said, “Are you okay?” and he said, “To tell you the truth, I don’t feel at all well. I have been to the doctor who told me to see an optician, and I’m going there now.” I said, “I hope you’re okay.” He was as grey as a badger and it was really quite worrying to see him. He went straight from the optician, who referred him, just up the road to the Ulster Hospital. He had a tumour close to his eye and brain, which was removed in an urgent operation. The other person, who went to a different optician in Newtownards, had the same problem, was also referred to the hospital and also had a tumour removed.

Tests at the optician’s are incredibly important. They can diagnose not only glaucoma but many other things, so it is important to have them. Optometrists have a key role to play because they can spot the early signs of glaucoma during routine tests. For patients with stable glaucoma, optometrists have a role in monitoring eye health and helping them to manage their condition.

Alarmingly, a fifth of the population—some 21%—still do not know how often they should visit the optician for a routine check-up. The same percentage either cannot remember their last eye examination or have never had one. Opticians in my Strangford constituency, and particularly in Newtownards town, have told me they are anxious and keen to ensure that people have regular tests. It is about how to ensure that can happen. I hope the Minister will respond to requests, including from the shadow Minister, and is able to reassure us on how we can encourage a UK-wide method to help.

For those with glaucoma or suspected glaucoma who are referred to hospital, long NHS waiting lists, exacerbated by the pandemic, remain a problem. Alarming figures show that around 650,000 people are waiting for NHS ophthalmology appointments. Will the Minister indicate the steps that can be taken to reduce that number and help those 650,000 people to retain their eyesight? There are steps that we can and must take. I always try to be constructive; it is important to come with a positive attitude on how to do things better. We should be big enough to accept that changes need to be made, and then we can do it.

Although optometry services remained open for urgent care during the covid-19 pandemic, the number of sight tests dropped by 4.3 million in 2020—my goodness—which was a 23% decline compared with tests administered in 2019. In respect of that dramatic drop and the need for improvement, perhaps the Minister could suggest methodologies to address and target those who have fallen out of the system. The drop in the number of eye tests resulted in large reductions in referrals from primary care to hospitals. That is where the fall seems to be, and perhaps where it needs to be addressed. As a result, sight loss has increased hugely since the pandemic.

How can we increase referrals from primary care to hospitals? If we do that, we will have moved a long way. I will give some examples from Northern Ireland—not about how nice it is to visit, Dame Caroline, but about the issues of vision and health. In Northern Ireland there are two glaucoma referral and refinement pathways. By contrast to England, they are available at all community practices, as long as clinicians have the right accreditation in glaucoma care. It is fortunate that my GP service and many others have such access. Through the services, patients have their glaucoma tests completed in the community, and the results are then shared securely with the patient’s ophthalmologist. This joined-up approach helps to streamline the experience for the patient and ensures that optometry practices and ophthalmologists work together for the benefit of the patient. I always try to be constructive in my comments and give examples of what we do, because if we do something well, others need to know, and if the Minister does something well here on the mainland, we need to know about that in Northern Ireland as well.

There is also an ocular hypertension monitoring service in the community across Northern Ireland. The scheme allows optometrists to manage in the community patients who would previously have been seen by the hospital eye services. A significant number of patients—some 2,000 to date—have been discharged to the scheme. That is an example of how it is proactively engaging and working. It has helped to free up the capacity in secondary care to manage more complex cases.

Those successful services show that community optometry, alongside other primary care providers, is responsible for delivering the shift from secondary to community care and is able to do so at almost no cost to the taxpayer, given that it uses existing capacity. What we have is an example of how things can be done—and perhaps spread across all of this great United Kingdom—in a better way. Those working alongside optometrists, who wish to ensure that people have their tests regularly, are keen to assist and to make changes. When the Minister speaks to the Association of Optometrists—as he probably already has—I believe he will find that he is pushing at an open door and that the ideas that he and the Department have are ones that optometrists have too.

Overall, Northern Ireland has shown how a model focusing on glaucoma care in the community can be effective. The challenge in Northern Ireland is that these services sit outside the general ophthalmic services—GOS—contract, which means that they rely on non-recurrent funding and are not subject to a regular uplift in fees; indeed, fees have never been reviewed. Given the success of these services, the push in Northern Ireland is for their funding to be put on a more stable, recurring footing and to be subject to the same process for fee uplifts as GOS. I have another ask to put to the Minister, in a constructive fashion: will he see whether the fees in place can be reviewed and how best the system could be used to improve things?

I know that the shadow Minister will make an incredible speech. By the way, I am not giving him a big head; that is what he always does, because he understands these issues incredibly well and brings forward his own ideas and his party’s ideas to this process.

I want briefly to highlight the difficulties arising with cataract surgery. It is wonderful how cataract surgery can improve people’s eyesight. I am a type 2 diabetic, but some years ago, before I was a diabetic, I went to see about surgery, not for cataracts, but to improve short-sightedness. I did not have the surgery, because I was not entirely confident about it, and shortly after, I became a diabetic. I tell that story because a good friend of mine in Greyabbey—I will not mention his name—was a type 1 diabetic and went for some corrective surgery to his eyes. Unfortunately, he ended up losing his eyesight; that is not the fault of anyone, but the diabetes complicated the issue, and he is now registered blind. Again, there are complications in relation to eye surgery for those who are diabetic, just by the nature of what happens.

Cataract surgery is currently the most common NHS elective surgical procedure, accounting for the majority of the large ophthalmic backlog facing the NHS. My mother has had one of her cataracts removed; she has a second one to remove, but I suspect that, unfortunately, her state of health means that the second procedure will not be done. Between 10% and 15% of those with cataracts suffer from concomitant glaucoma, and I am bringing the issue into the debate because cataracts are often treated separately. I suggest that we consider how we could do the two together—the glaucoma and the cataract surgery.

I have been informed by a company named Clarity that there is an opportunity to treat patients for cataracts and glaucoma at the same time. It is obviously more cost-effective, and although I know we should not always dwell on the cost, we cannot ignore it. If there is a way of doing simpler, easier and cheaper surgery more effectively, let us look at that. I am ever mindful that the Minister has four competent members of staff behind him, who will clearly keep him right, so might they be able to do some research on that?

Treating cataracts and glaucoma together expedites patient backlog reduction and helps save people’s sight by preventing the further progression of glaucoma. The treatment is quite innovative, new and effective, and it is important that we should do it. Micro-scale injectable therapies produced by Glaukos can advance existing glaucoma standards of care and improve patient safety by removing the need for invasive secondary surgery and tackling ophthalmic backlogs. So many people wait for their cataract operations and for improvements to their glaucoma. If we catch things early, we can save the sight, and that is a critical factor. Again, can the Minister look at that and ascertain whether the approach I have just referred to could be a cost-effective way forward? I am sure he knows about it, but if he—and indeed the shadow Minister and others—does not, I would be happy to have a response later. The treatment seems to me to be a win-win, so will the Minister confirm whether the Government will initiate it urgently?

Local optometrist services form a vital part of the eye care patient pathway and of directing patients to vital sight-saving medical technologies. It is incredible to live in an age when 50% of all cancer patients can survive and people’s eyesight can be saved if it is checked and their problems with glaucoma are diagnosed. Are we not fortunate to live in this age? Although I am not the oldest person in the room—I suspect that my colleague on the left-hand side, my hon. Friend the Member for East Londonderry (Mr Campbell), might just be a tad ahead of me by a couple of years—I have seen the great advances we have made in medical technology. We are doing great things, and we could do more. Is it not incredible that all we really need is to check? It is not terribly costly, but if we check, we make the difference.

Optometrists are the ones who are properly trained in the pathway. We must ensure that pathways are clear and that funding is available to ensure that, instead of 22 people a week losing their sight in the United Kingdom of Great Britain and Northern Ireland, no one at all loses their sight and their independent life—something that could have been prevented. I know that the Minister shares my goal and that the shadow Minister definitely shares it, as does my hon. Friend the Member for East Londonderry. As a result of today’s debate, I hope we will have a progressive strategy going forward, and I am anxious to hear what the Minister and the shadow Minister have to say, so that we can feel that they understand the path towards achieving this goal and will focus on and direct it.

Liver Disease and Liver Cancer

Gregory Campbell Excerpts

Thursday 25th April 2024 Westminster Hall

[Navendu Mishra (Stockport) (Lab)]

I beg to move,

That this House has considered health inequalities in liver disease and liver cancer.

It is a pleasure to serve under your chairship, Sir Christopher.

I thank the hon. Member for Glasgow Central (Alison Thewliss), who is covering Front-Bench duties in this debate, and who was kind enough to co-sponsor the application for it with me to the Backbench Business Committee. She is a long-standing champion of public services and better healthcare provision for all.

I am grateful to several organisations, including charities, that have helped me with my speech: the British Liver Trust—several representatives are in the Public Gallery—Liver Cancer UK and the Roger Williams Institute of Hepatology. Alcohol Change UK has also been good. I have met its representatives in the past, although not recently, and it has been a long-standing campaigner on this issue.

Before I start on the main points of my speech, I pay tribute to Bob Blizzard, a former Labour Member of Parliament in Norfolk. He did a lot of work in this House on the Hunting Act 2004 and in the fight for animal rights. His family have been in touch and wanted me to mention him. Sadly, he passed away in 2022, with a rare form of cancer, having been diagnosed with it in December 2020. His family therefore wanted me to mention the work of the Alan Morement Memorial Fund, which helps patients and healthcare workers.

To start on my key points, this is an important debate about health inequalities in liver disease and liver cancer. It is particularly timely, given the shocking new data released this month, which shows that we are facing the worst mortality and hospital admissions rates for liver disease in a generation. Ninety per cent of liver disease is preventable and, if diagnosed early, damage can often be reversed and the liver can recover fully. Tragically, however, premature deaths from liver disease have surged to their highest levels in decades, and hospital admissions due to liver disease have risen by almost 80% over the past decade alone, driven by obesity, alcohol and viral hepatitis.

We have seen more than a decade of cuts under this Government. Successive Conservative Governments have neglected patients and failed to take liver disease seriously. Our most marginalised communities, the most at risk of liver disease, have been silenced, overlooked and left behind. The liver disease crisis is almost entirely preventable and reflects a decade of decline in our nation’s health, widening health inequalities and worsening life expectancy.

Geographical inequalities in health outcomes for patients are stark, and the north of England is disproportionately impacted, accounting for more than a third of premature deaths in liver disease in 2022, or 3,728. New data from the Office for Health Improvement and Disparities highlights that the north-west, my own region, has the highest mortality rate for liver disease in the country, at 35% higher than the national average. The healthy life expectancy in Blackpool is now the same as in Angola, at 54.5 years.

The Government have failed to deliver on their manifesto pledge and levelling-up mission to narrow the gap in healthy life expectancy. They scrapped the promised White Paper on health disparities, repeatedly cut the public health grant and in effect decimated the Office for Health Improvement and Disparities. They have also overlooked liver disease entirely in their major conditions strategy, and U-turned on their commitment to roll out non-invasive liver scans to 100 community diagnostic centres. Our nation’s liver disease effort is faltering, which is costing lives and piling huge, avoidable pressure on to our NHS. Thousands of people die unnecessarily without access to specialist care, because liver services are consistently overlooked and under-resourced.

Risk factors such as obesity, viral hepatitis and alcohol are most prevalent in our most disadvantaged communities, and mortality rates from liver disease in our most deprived communities are now four times higher than in the most affluent.

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

I congratulate the hon. Gentleman and the hon. Member for Glasgow Central (Alison Thewliss) on successfully securing this debate. Does he agree that, in the 21st century, the wider expectation in society is that we need to see improving mortality rates from serious conditions? The concern here is that mortality rates are worsening, as he has correctly outlined. That is something we all need to address as a matter of urgency.

[Navendu Mishra]

I thank the hon. Member for his intervention; he makes an important point. As one of the most advanced economies in the world, we expect our population to have the best healthcare, and we want life expectancy increasing for everyone, not just in certain postcodes, so I agree with his point.

Almost two thirds of adults are overweight or obese, and nearly four in 10 children with obesity—38%—are estimated to have early stage fatty liver disease. Deaths due to alcohol-related liver disease in England have increased by 87% over the last two decades, due a rise in harmful and hazardous drinking.

The cost of living crisis is exacerbating inequalities and the risk factors facing vulnerable families in deprived areas, with cheap junk food and high-strength alcohol being widely available. It is estimated that over 206,000 people in England are living with chronic hepatitis B, the majority of those cases undiagnosed and unlinked to care. Undetected, it can lead to cirrhosis, liver cancer and premature death caused by liver failure.

Liver disease is a silent killer that is often asymptomatic in its early stages. Shockingly, three quarters of people with cirrhosis are diagnosed in hospital when the damage is irreversible and it is too late for effective treatment or intervention. The impact of late diagnosis and crisis-point hospital admissions on our already overstretched NHS frontline services is pushing the hepatology workforce to breaking point, yet pressures are projected to increase at pace.

My own constituents are at the sharp end of this public health emergency. In Stockport, the premature mortality rate for liver disease in women has surged by 80% since the pandemic. In 2020, it was 12.5 per 100,000, and 2022, it was 22.5 per 100,000. In Stockport, the overall premature mortality rate from liver disease between 2020 and 2022—a three-year range—was 16.5% higher than the national average. I was greatly concerned to learn that the British Liver Trust’s “Love Your Liver” roadshow visit to Stockport last year identified that one in four members of the public had elevated fibroscan readings, which are indicative of liver damage.

Ethnic minorities are disproportionately impacted by liver disease. South Asian populations are particularly vulnerable to fatty liver disease, due to genetic and sociocultural factors, while migrants from countries where hepatitis B is endemic are at higher risk of developing liver cancer.

Liver disease patients also face stigma and misconceptions, which is hampering earlier detection and costing lives. Liver disease and liver cancer continue to be falsely labelled as self-inflicted, despite being linked to poverty and social deprivation. Almost half of patients with a liver condition have experienced stigma from healthcare professionals, according to recent surveys by the British Liver Trust.

Everyone at risk of liver disease and cancer should have equal access to faster diagnosis, no matter where they live. Accelerating earlier diagnosis is pivotal to tackling health inequalities and narrowing the gap in healthy life expectancy. Yet new research by the British Liver Trust shows that fewer than one in five integrated care systems in England currently have fully effective pathways in place for the early detection and management of liver disease. Alarmingly, my local ICS—Greater Manchester ICS—reported the highest premature mortality rate for liver disease in the country, but it is yet to implement an optimal pathway.

The evidence is overwhelming. We can and must do more to support liver disease and liver cancer patients across the UK. The next Labour Government will have a relentless focus on prevention and earlier diagnosis to turn the tide of this epidemic of preventable deaths. When the previous Labour Government first asked Professor Marmot to review health inequalities, then Prime Minister Gordon Brown said that

“the health inequalities we are talking about are not only unjust, condemning millions of men, women and children to avoidable ill-health, they also limit the development and the prosperity of communities, whole nations and even continents.”

Since then, we have had over a decade of austerity and deep cuts to public health, which have caused improvements in life expectancy to slow and even reverse. Health inequalities are widening and a growing number of people live a greater proportion of their lives in ill health.

We need to look upstream, which is why the next Labour Government will be committed to taking bold action to halt the promotion of junk food targeted at children that is high in fat, salt and sugar.

We also need to talk about early detection. To build an NHS fit for the future, Labour is committed to hitting all NHS cancer waiting time and early diagnosis targets within five years. Recently, I tabled a number of written parliamentary questions on this matter, and the answers do not fill me with confidence about the healthcare that my constituents are receiving. We also need to accelerate earlier detection by doubling the number of CT and MRI scanners in hospitals in England.

I urge the Minister to mirror this upstream focus on early detection by committing sustainable funding in the next spending review for new technology, in order to improve the early detection of liver disease in primary and community care. I also call on the Minister to introduce a new nationally endorsed pathology pathway to improve early diagnosis of liver disease and to ensure that every community diagnostic centre has an assessment for fibrosis.

Liver cancer is the fastest rising cause of cancer death in the UK. As one of the six least-survivable cancers, it has a shockingly poor five-year survival rate of just 13%. Yet public awareness remains very low, and liver cancer patients are overwhelmingly diagnosed at a later stage. Outcomes for many types of cancer have seen huge improvements over recent decades, yet deaths from liver cancer in the UK have increased by 40% in the last decade alone, hampered by the lack of funding, research and innovation.

Before I come to the end of my speech, I want to mention a couple of staggering points provided to me by Alcohol Change UK. Sadly, it is a fact that harm caused by alcohol is on the rise. The pandemic has had a serious impact on alcohol consumption in England. People are drinking at harmful levels and increasing their drinking. One in five people in the UK is drinking above the recommended weekly amount; many want to cut down. Alcohol causes the majority of liver disease, and drinking alcohol increases the risk of liver cancer.

Alcohol has become the leading risk factor for death and ill health among those aged 15 to 49 in England. Alcohol Change UK found, only this week, that alcohol-specific deaths in the UK are the worst on record— 32.8% higher than in 2019. In 2022, 76% of alcohol-specific deaths were caused by liver disease.

This is an extremely serious topic. I am grateful to the Backbench Business Committee for allocating time for the debate and I am grateful to everyone who has turned up in the Public Gallery, as well as to the Back-Bench MPs who have come to support the debate.

Access to Migraine Treatment

Gregory Campbell Excerpts

Wednesday 20th March 2024 Westminster Hall

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

I congratulate the hon. Lady on securing the debate. On making the blockers more widely available, does she agree that, as well as the requests that she has put to the Minister, there should be discussion and consultation with the devolved institutions, so that people right across the United Kingdom can avail themselves of the same?

[Dehenna Davison]

I completely agree with the hon. Gentleman. As I said, migraine is a condition that does not discriminate. Roughly one in seven people in the world live with migraine, so it is as relevant in the devolved authorities as it is anywhere else. We want to ensure that migraine patients across the whole of the UK have access to the best possible treatment.

For those who cannot access CGRP blockers or alternative treatments through their local NHS trust, or who simply cannot bear the extensive waiting lists to see specialists, drugs bought privately can be incredibly expensive. For example, rimegepant is around £270 per month when taken as a preventive, Botox injections for migraine are around £700 every 12 weeks and Vyepti infusions are around £600 every 12 weeks, and that does not include the cost of seeing specialists and having the prescriptions written, which of course means an additional fee. For those on low incomes, those options are completely inaccessible without NHS treatment, yet some are unable to access them regardless because of the decisions of their local NHS trusts. One survey respondent said:

“I had to spend £8,000 on CGRP treatment privately before moving to a hospital who would fund me under the NHS.”

Nobody should be priced out of quality healthcare, particularly when that healthcare can be truly life changing.

In all, I have outlined a number of tangible steps that could be taken and which would have a real and positive impact on those living with migraine, but let us return to Mollie’s story because, sadly, her experience is an example of how the current system does not always work for patients. In her words:

“Four and a half years later, there is not one second of any day in which I am not in pain. My pain is an average of 7/10 a day, and it soars up to 10/10 at least ten times a day...When it reaches these levels on a daily basis, every single day, you simply cannot live life normally anymore. I can no longer work, see my friends, or do any of the hobbies I used to enjoy. Every single thing that brings me pleasure is now impossible for me.”

For those living with severe chronic migraine, the huge detrimental impact on day-to-day life should not be understated. I have reached the point where I get anxious making plans, either for work or with family and friends, for fear that a severe attack may mean that I have to cancel at the last minute. With attacks seemingly getting more and more frequent, it feels increasingly like cancellation is an inevitability. This may sound really silly to some, but it is a really human example for me. I am a lifelong Swiftie and I managed to achieve the holy grail of getting Taylor Swift tickets for the Eras tour, but I am petrified that on the day a migraine attack might hit and take away my opportunity to see her live, because I would be devastated. Some might say that that is a silly example, but it is one of the things that are on my mind. If someone is living healthily, they do not have to have those sorts of considerations when making plans.

Many survey respondents reported similar concerns. One said:

“Migraine has impacted every job, social occasion and holiday over the last 15 years...It’s caused me countless days of agony. Migraine is a curse I wouldn’t wish on my worst enemy.”

Another said:

“I can’t make plans with people due to migraines making me cancel them last minute. I missed an expensive, once in a lifetime concert opportunity that I had been waiting 12 years for as I had a migraine that day. I had to leave a friend’s funeral early and not attend his wake due to a five-day migraine.”

One said:

“I have missed many family gatherings—New Years, Anniversaries etc. I have also missed events that I have purchased tickets to as I have been too unwell, losing out on both money and experiences.”

Another said:

“I gave up working 14 years ago, stopped socialising and even dread going on holiday, and travel was the thing I always most looked forward to.”

I received an email yesterday from June about her daughter. She is 35 and her migraine attacks are so severe that, in June’s words,

“she can no longer look after her children. At this moment in time,”

she

“cannot complete a simple jigsaw with her two-year-old daughter. This is my daughter who gained a first in her degree...She is upset about missing out on so much of her children’s lives, aged 5 and 2.”

I raise these examples to show that migraine has more than just a trivial impact on the individuals who are suffering; it has a real impact on them and on their loved ones and wider circle.

Many also spoke about the impacts of migraine on their working life. Mollie had just embarked on her dream internship when migraine hit, so she was unable to complete that internship and has struggled to work since. She is not alone. Many here will know that I gave up my ministerial role, as migraine meant that I could not keep up with the additional demands of government. Research by the Migraine Trust found that 29% of people with migraine had to move from full-time to part-time work and 25% had left a job altogether. One survey respondent said:

“I have been at risk of losing my job in the past due to having to take time off for migraines.”

Another said:

“I recently lost my job due to the number of migraine related absences I had.”

Oral Answers to Questions

Gregory Campbell Excerpts

Tuesday 5th March 2024 Commons Chamber

[Dame Andrea Leadsom]

I am very happy to discuss that matter with my hon. Friend, who is a huge advocate for her constituency. It is always disappointing when a community pharmacy closes, but she will know that the launch of Pharmacy First on 31 January expanded the value and contribution of all our community pharmacies. It has been met with a £645 million investment over this year and next.

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

On access to primary care provision, will the Secretary of State assure the House that she will liaise with Health Ministers in the devolved Departments to ensure that rural communities do not lose out because of their isolated locations?

[Victoria Atkins]

I am very happy to give that assurance. I was delighted to meet Minister Swann yesterday to discuss his plans for Northern Ireland healthcare, including access to primary care.

Oral Answers to Questions

Gregory Campbell Excerpts

Tuesday 23rd January 2024 Commons Chamber

[Helen Whately]

I thank my hon. Friend for his invitation. He has been a tireless campaigner on this issue on behalf of his constituents. The future of healthcare is about getting people the care that they need, where they need it and when they need it, and Rugby is no different. New local NHS services are bringing care closer to home in his area, such as the new imaging unit at the Hospital of St Cross that opened in September.

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

Access to urgent and emergency care can be greater facilitated when greater protection is offered to staff, particularly the many who suffer attacks in emergency departments at hospitals across the United Kingdom—often by people who are intoxicated.

[Helen Whately]

The hon. Member makes an important point. The safety of our staff in the national health service is important, including those in urgent and emergency care departments, as well as the ambulance services. He is absolutely right to point that out, and it is never acceptable for anyone, including patients, to be violent towards staff.

Oral Answers to Questions

Gregory Campbell Excerpts

Tuesday 11th July 2023 Commons Chamber

[Neil O'Brien]

My right hon. Friend is completely correct. That £645 million, of course, comes on top of the £100 million that we have already put in. We have grown the pharmacy workforce hugely—there are 82% more pharmacists now than in 2010—and we are also enabling those people with their high-end skills to do more by reforming regulations. That is not just the blister packs issue; we are enabling them to do convenient things such as hand out bagged medicines even if the pharmacist is not present.

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

Will the Minister undertake to liaise closely with local community pharmacy representative groups to ensure that the excellent work they have been doing can be maximised, particularly given that the NHS is under severe pressure at the moment?

[Neil O’Brien]

Absolutely, and I always try to learn lessons from right across the UK. In fact, some of the ideas for reforms have come from listening to local partners. For example, our reforms to enable modern ways of working, hub-and-spoke dispensing and empowering pharmacy technicians have come from talking to those local partners.

Pancreatic Cancer Awareness Month

Gregory Campbell Excerpts

Tuesday 8th November 2022 Westminster Hall

[Jim Shannon (Strangford) (DUP)]

I beg to move,

That this House has considered pancreatic cancer awareness month.

It is good to see everyone here. I thank Members for attending and look forward to their contributions, especially those from the shadow Ministers. In particular, I look forward to the contribution from the Minister, who is back in post again. I wish her well and look forward to her summing up of the debate.

It is a pleasure to speak on the subject and I declare an interest as chair of the all-party parliamentary group on pancreatic cancer. I am pleased that my application to the Backbench Business Committee for a debate was successful, and I have a number of asks. I pay special tribute to the hon. Member for East Dunbartonshire (Amy Callaghan), who is sitting to my right. She was chair of the APPG, and when her health was not the best, she asked me whether I would take it over. That seemed to be the unanimous opinion of the members of the group, so I was pleased to do so.

I owe the hon. Lady a special thanks. She is the lady, as she always is, who presented the issue and pushed it, and I just follow in her footsteps. That is a fact. I am pleased to see her getting back to health and strength, and look forward to her contribution, which I am sure will be factual and helpful to the debate.

With pancreatic cancer, silence is deadly. That is where we are—very much conscious of pancreatic cancer and what it does. It is a disease that gets too little attention and too little funding. That is one of my asks of the Minister, and I prepare her for it in advance. Later, I will refer to some stats and figures, which will reinforce the issue. Thousands of people die of pancreatic cancer every year, so it is critical that we secure early diagnosis and ensure that the funding for research is there. Ultimately, we must raise awareness of the disease—for example, through today’s debate.

Pancreatic cancer is the deadliest common cancer of all, which underlines the importance of the debate, and the stats surrounding it are truly shocking: 10,000 people across the United Kingdom of Great Britain and Northern Ireland are diagnosed with the disease every year, and half the people diagnosed die within three months of their diagnosis. That is alarming, and I want to present some evidence about how the disease affects people, particularly those in my constituency.

Sadly, only 7% of those who are diagnosed survive five years, and even fewer survive longer than that. The five-year survival rate for pancreatic cancer in Northern Ireland is one of the worst in the world at 4.9%, and it puts us 32nd out of 36 countries in the survival charts. That tells us all about where we are. The Minister is not responsible for health in Northern Ireland because health is a devolved matter, but I want to use the debate to highlight the issue and to show where we can push for the improvements that we would like to see and wish we could have. Back home, I have been pushing the Minister of Health on that for a long time, and I want us to have such a strategy on the UK mainland in the hope that we can do the same in turn in Northern Ireland.

When I am in my constituency office, my heart sinks when people come in for help with their personal independence payment form and inform me that their illness is pancreatic cancer. I feel my stomach sinking and my heart dropping, and I take a deep breath, because I know that I am looking across the counter at someone—man or woman—who, unfortunately, has limited time left in this world. Much more often than not, pancreatic cancer is a death sentence. My office helps people with benefits, PIP forms and universal credit, which eases them through the financial issues. There is a health burden, but the other burden is finance—when someone can no longer earn the money that they need to pay the bills and get through.

November is many things, but we are here because it is Pancreatic Cancer Awareness Month. All around the United Kingdom of Great Britain and Northern Ireland, people have been lighting up their homes and local landmarks purple, holding fundraising events for charities such as Pancreatic Cancer UK, and having conversations. It is so important to have conversations to raise awareness of the deadliest common cancer of all.

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

I congratulate my hon. Friend on securing the debate and on the work that he is doing in the all-party parliamentary group. He is highlighting the importance of November being Pancreatic Cancer Awareness Month. Does he agree that early detection is key? Unfortunately, at the moment pancreatic cancer has the lowest survival rate of all common cancers. Awareness is critical in assisting people, moving toward early detection and trying to get those figures down.

[Jim Shannon]

I totally agree with my hon. Friend. I will give an example and mention a lady’s name; I have her permission to do so. I am pretty sure that the hon. Member for East Dunbartonshire knows this lady, and others may also know her story, which illustrates where early detection and diagnosis can make all the difference. We need to focus on the three symptoms to look out for, which can lead to the early detection and diagnosis that are so important.

Pancreatic cancer is a brutal illness, and there is no better way of understanding how brutal it is than by hearing how it impacts an individual and their family. To that end, I will take the opportunity to share the story of Rebecca Buggs, who is the face of the Pancreatic Cancer UK campaign this Pancreatic Cancer Awareness Month. She is a nurse, who looked after pancreatic cancer patients and was well aware of the symptoms. Ultimately, her awareness of those symptoms saved her life.

The Pancreatic Cancer UK campaign is called “No Time to Wait”, and there is no time to wait. There must be an instantaneous response to symptoms—my hon. Friend the Member for East Londonderry (Mr Campbell) mentioned the importance of that—because for patients with pancreatic cancer, delay means disaster. Rebecca, who is 43, knows that all too well. She has been a nurse for 21 years, and over the course of her career she has prepared many patients for the Whipple procedure—the only operation that provides a possible cure for pancreatic cancer. When Members hear her story, they will understand the importance of that.

On Christmas day last year, almost 11 months ago, Rebecca began to feel very unwell. She believed it was just a covid-19 infection, as many do; if someone is not well, they think it must be covid, because covid has been prevalent for the last two and a half years. Three days later, her husband noticed that she was jaundiced and said, “Becki, you look like a Minion”—not because that is a derogatory term, but because Minions all have yellow faces. After contacting the on-call registrar, whom she fortunately knew because of her role as a nurse, she was told to head straight to her hospital for blood tests and scans.

On 4 January this year, 10 days after her symptoms began, Rebecca was told the devastating news that she had pancreatic cancer. Luckily, her cancer was caught early enough for her to have the Whipple procedure, for which she had prepared many patients over all those years in her job. For most patients, it is far too late; only 10% of people are able to access that surgery. One of the things I will ask the Minister about is access to surgery; I know that she will have an answer to our queries, as she always does.

In the campaign, Rebecca talks incredibly powerfully about how this time was for her and her family. It is not just about the impact on the person who has the disease; it is about the impact, in this case, on her husband, her children, her mum and dad, and everyone else. She talks about how scary it was to be the one on the operating table after preparing so many for the procedure herself, highlighting the experience of so many with this devastating cancer. She said:

“These were the hardest 11 days of my life. I was away from my children, Jacob who’s 9 and Georgia who’s 8, and they couldn’t come and visit me because of COVID.”

It is vital that we drive improvements so that more people like Rebecca can get access to life-saving treatment for this cancer. That is why Pancreatic Cancer UK’s “No Time to Wait” campaign is vital. We need to ensure that people can get a diagnosis and treatment or surgery—whichever is the case—as soon as possible in order to give them the best chance of survival. I share Rebecca’s concern that so many people are struggling to get GP appointments or referrals for the right tests when they have concerning symptoms such as stomach ache, backache and indigestion. As Rebecca says,

“they become so ill and jaundiced that they get admitted to A&E and by then it’s too late.”

When the symptoms and the diagnosis are there and the tests are done, access to surgeons and surgery is so important.

Rebecca’s point about people with pancreatic cancer being diagnosed in A&E is particularly important. We often think in this day and age that if someone receives a cancer diagnosis, that will happen in a quiet consultation room in a hospital or perhaps in their local GP surgery, but more often than not it happens in a crowded room. More often than not—I say this with respect to doctors and GPs—it may become repetitive for GPs to tell patients that they have a diagnosis of whatever it may be, but that is a life-changing statement for the patient.

A person came to see me this week and told me that his wife had been diagnosed with cancer, albeit not pancreatic cancer. The doctor had told her very matter-of-factly that she had it, and she was absolutely devastated. What the doctor perhaps could have done was told her husband, who could then have conveyed the news to his wife in a way that would not have been such a shock.

People might expect that the doctor will give them their diagnosis and follow that up with a clear treatment plan for how they will treat and beat their cancer. In 2022, we expect that there will be a clear path to a cure and a good chance that, eventually, the person will be given the all-clear. But with pancreatic cancer, that just is not the case. More than 60% of patients with pancreatic cancer get diagnosed only in an emergency setting. I think that if anything at all indicates pancreatic cancer, the doctors and those who are aware of it need to prioritise it immediately, because speed is of the essence. Some 70% of people do not receive any active treatment at all, because they are too unwell by the time they are diagnosed; it is almost too late for them. Let that sink in. Imagine receiving a pancreatic cancer diagnosis and then immediately being told, “By the way, there is no possible treatment plan or cure.” That is devastating.

We have to improve; we have to make the situation better. We have to try to respond in such a way that we add comfort, compassion and understanding—and, more importantly, the opportunity for surgery. It bears repeating that more than half of people who receive a pancreatic cancer diagnosis will die within three months. Wow—that is another blinder of a statement. It really underlines the seriousness of the matter. For people with pancreatic cancer, there really is no time to wait.

What is the reason behind my saying all this? Primarily, it is that people with pancreatic cancer are being diagnosed far too late. We are all familiar with the fact that the earlier someone is diagnosed, the better their chances of survival. But some things are needed before people can get that crucial early diagnosis. I will outline some of them, and I hope that the Minister will be able to respond in a way that is helpful.

First, we all need to spread awareness of the symptoms of this cancer, which are stomach and back pain, indigestion, unexplained weight loss, and jaundice. The colour caused by jaundice would obviously be noticeable right away, but all the other things are more difficult. Someone might have a bit of backache and a bit of indigestion now and again. People should always look out for any weight loss, and sometimes even weight gain. Of course, it is striking how common the symptoms on that list are. We would not naturally associate them with pancreatic cancer, but it is vital that people get checks if they experience those symptoms with no explanation. It might not be just backache or a bit of indigestion; it might be more.

Secondly and simply, there needs to be a test. It is all well and good going to the GP with these types of symptoms, but we also need to equip GPs with the tools that they need to start ruling things out. Will the Minister tell us how we can help our GPs to have all the equipment in place to make early diagnoses, and to refer people for the right test as soon as possible if they have even a minute suspicion that a person might be facing pancreatic cancer? Currently, there is no such test, but research is ongoing to try to create one, which could make a huge difference by allowing people to be diagnosed at an early stage.

We often speak about research and development. I probably mention it in every health debate—not to be repetitive, but because it is a real issue. Research and development is so important to find a cure and a way to help patients. Will the Minister tell us what can be done to increase research and development in this area? I will give a shocking figure that underlines the importance of research, which is the third key to unlocking earlier diagnosis. Currently, pancreatic cancer is the fifth most common cause of cancer death, but it receives just 1.4% of cancer research funding in the UK. Without sustained investment in innovative research, we will not be able to improve survival rates at the pace that we must.

To date, Pancreatic Cancer UK has invested over £10 million in pancreatic cancer research, including research that aims to develop a simple test for the cancer, but it is a charity, so its funds are limited. Will the Minister tell us what can be done to help pancreatic cancer research and development? It is sometimes easy to say this, but I genuinely believe in my heart that the Government have to step in and help, because pancreatic cancer is so brutal and singular, and it ends life very quickly. Can we please have some direction on what can be done to help?

To achieve major breakthroughs, we need the research and development upgraded. We need extra money spent, well above the 1.4% of cancer research funding that pancreatic cancer receives at the moment. I say with respect that if Pancreatic Cancer UK can raise some £10 million, which is quite a bit for a small charity, the Government need to match that and do a wee bit better. Despite everything we have heard today, we need the charity’s ambition and spend to be matched by the Government and other national research funders.

In addition to driving crucial research breakthroughs, the Government must ensure that they take action to improve outcomes for people with pancreatic cancer. I know that lots of cancers are deadly, but pancreatic cancer is the deadliest. Because of that, it needs a wee bit of extra assistance. That is particularly important at the moment, as we are heading into what will be a very challenging winter for the NHS, with the pandemic, staff shortages and underfunding pushing it to breaking point. By its very nature, the press is quite negative, and it is sometimes hard to be positive about all the different news that we hear in the media, on TV and in the papers, but we need to have pancreatic cancer research and development, and response, at the centre of our cancer strategy.

Without action, there is a risk that things will get even worse for people with pancreatic cancer, as any additional delays to vital appointments, tests and treatments—the three things we need, along with an assurance on the speed of response—will have an adverse impact on people who have no time to wait. There has been inaction on pancreatic cancer for too long, but together we can change that. Indeed, I believe it is our duty to push for better for those who are faced with this deadly cancer.

We need to see urgent action, and there are things that the Government could do now to start shifting the dial. First, they must publish the 10-year cancer plan as soon as possible. Back in January, the then Health and Social Care Secretary, the right hon. Member for Bromsgrove (Sajid Javid), committed to publishing a 10-year cancer plan that would transform this country into a world-leading force for cancer care and treatment. Our previous Prime Minister recommitted to doing that, but we have since had silence—I say this with respect—from the new Prime Minister, who has had plenty on his plate, and the new Health and Social Care Secretary. Pancreatic cancer has been neglected by successive Governments, as have cancer plans. As a result, survival rates have not improved in decades. There has been a lack of action over time on pancreatic cancer, and we really need to ensure that work is put in place.

A funded and ambitious cancer plan would be a real step in the right direction, demonstrating our national ambition. I am proud to be British and proud to have a Government that lead. We need to lead on this, and we need to do so very quickly. That will give us something to aim for in driving up outcomes and survival, and it will help us to give people hope. That hope has not been there for years, and it needs to be there now. I say this very politely but sincerely and firmly: currently, we are a rudderless ship, and a cancer plan would give us direction and hope. The World Health Organisation advises that all nations need a cancer strategy to give this killer disease the attention it deserves. Through this debate, through our Minister and through our Government, let us become a country that can do better and does not fail to meet that standard.

To make a real difference, the cancer plan must have a specific focus on less survivable cancers, including pancreatic cancer—the ones that kill the most and kill the earliest. Unfortunately, it is possible to receive a diagnosis of pancreatic cancer and, within three months, to be no longer in this world. The plan must include investment in the workforce so that everyone can have a diagnosis and treatment plan within 21 days. That is the best practice that Pancreatic Cancer UK and clinical experts believe should be the reality everywhere. I make a special request for the Minister to address that. I say this often, but it does not lessen the issue, because it is important: I am proud of being in this Parliament of the United Kingdom of Great Britain and Northern Ireland, but we need to share what we have done regionally in Scotland, Wales, Northern Ireland and England in order to do things better. There may even be a necessity for a UK-wide policy and strategy.

Getting a diagnosis quickly is crucial in ensuring people can get the treatment they need as soon as possible. In addition, the cancer plan must deliver the funding needed to enable specialist cancer nurses to support everyone with pancreatic cancer as soon as possible after their diagnosis, helping them manage their symptoms and maintain a good quality of life. We must ensure that, when the family and financial pressures are gathering around someone and they sometimes feel like it is just them fighting the disease, that is not the case. We need to wrap our arms around people and tell them that they are not on their own.

I hope the Government will commit today to publishing the cancer plan. That is critical; it is at the core of the issue, and we need it. I encourage the Minister to meet Pancreatic Cancer UK and people affected by this awful disease to find out more about the “No Time to Wait” campaign and how the 10-year cancer plan can finally shift the dial. I know the answer will be yes but, for the purpose of having it in Hansard, will she commit to having that meeting, which I think will enable Pancreatic Cancer UK to press, push, emphasise and raise awareness of the matter?

There has been silence around pancreatic cancer for too long, but through this debate, together—collectively as MPs, with the Minister and regionally—we can change that attitude. We need to speak up and demand immediate change on behalf of those who have already lost their lives and the families left to grieve, those who are living with pancreatic cancer right now, and those who face a diagnosis in the coming months. We want to give them hope. We want them to know that if they get the disease, their treatment will be prioritised through A&E, their diagnosis will be quick, the response will be equally quick, and surgery will follow.

We have work to do in Northern Ireland, and I understand that—the figures I gave earlier emphasise it only too well—but we also have work to do across this great United Kingdom. I am asking for attention to be paid UK-wide in the form of a pancreatic cancer strategy, with information and guidance shared in every area of this United Kingdom of Great Britain and Northern Ireland.

I am conscious that others want to contribute and I very much look forward to their contributions, including those of the shadow Ministers and, in particular, the Minister. I know that she, along with all of us, will want to do all she can to save lives. I look forward to her response, and I thank the Backbench Business Committee for giving me the opportunity to speak on this subject.

In Pancreatic Cancer Awareness Month we have a duty as elected representatives in this House to deliver a message. With respect, we hope that the Minister and the Government will respond centrally, with a pancreatic cancer strategy that we can all look up to, so that when people with pancreatic cancer come to my office, as they often do, to fill in PIP forms, I can then tell them that there is some hope and show them what they need to do.