Oral Answers to Questions

Gregory Campbell Excerpts

Tuesday 7th January 2025 Commons Chamber

[Karin Smyth]

My hon. Friend is right that confidence is the key word in the huge agenda that the CQC has to deliver. Dr Dash and Professor Mike Richards highlighted serious failings that need to be re-addressed. As one of our predecessors said, priorities are our language. Currently, a review of one or two-word ratings is not a priority, but it will be kept under review.

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

Is the Minister indicating today that there will be a new start in the Care Quality Commission, and that things will change for both staff and the recipients of care?

[Karin Smyth]

The hon. Gentleman makes an excellent point, particularly with regard to staff, who need support to continue their important work. A new start with new leadership is what they need, as well as implementation of the recommendations.

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.