Rare Autoimmune Rheumatic Diseases
Debate between Rupa Huq and Jim Shannon(2 weeks ago)
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Jim Shannon
As my hon. Friend often does in these debates, he brings forward a reminder of why this debate is important and why we need to raise awareness. It is about giving confidence to people out there who may have these diseases and may think that they are fighting this battle all on their own, but are not. We need to raise awareness among NHS staff. It is impossible to know about every rare disease, but it is good to recognise the symptoms and to be able to point people in the right direction.
Rare autoimmune rheumatic diseases are a range of chronic, currently incurable conditions in which the body’s immune system damages its own tissues, often in multiple organs throughout the body simultaneously. That is a lot of words but, to use a phrase that we would say back home, it means that they come at a person from all sides. They can lead to tissue or organ damage that, in some cases, can be fatal. We cannot ignore the fact that that can be fatal and the importance of responding in a positive fashion.
At present, the outcomes are not good enough for people living with rare autoimmune rheumatic diseases: they wait too long for a diagnosis, have variable access to specialist care and cannot always access help and support when they need it. In any debate that we have about ill health, we often say that early diagnosis is important, but so is having access to specialist care. It is important that NHS workers are able to notice something that may be unusual and not something that they see every day. It is also important that the care, help and support that people need is available when they need it. Preliminary data from the Rare Autoimmune Rheumatic Disease Alliance’s soon-to-be-released 2024 patient survey found that the average time to diagnose from symptom onset was two and a half years—it is that long before anything happens. In those two and a half years, people suffer, worry themselves sick and wonder, “Am I going to get out the other side?” The data shows that 30% of patients waited five years for a diagnosis from symptom onset.
Rare autoimmune rheumatic diseases impact on around 170,000 people in the United Kingdom of Great Britain and Northern Ireland. Hon. Members may not recognise some of the diseases, but they include Behçet's disease, lupus, myositis, scleroderma, Sjögren’s syndrome and vasculitis. They can affect many parts of the body—the joints, the skin, the lungs, the kidneys or the heart—and often require cross-medical expertise. That is just a small number of the things that come the way of 170,000 people across the United Kingdom. Unlike the vast majority of rare diseases, the conditions occur predominantly in adult life and are predominantly non-genetic. That means that people do not need to have a history of them: they can come out of the blue.
The Rare Autoimmune Rheumatic Disease Alliance, a group made up of clinicians and charities, such as Lupus UK, Vasculitis UK, Scleroderma & Raynaud’s UK and Sjögren’s UK, has set out a number of key solutions to improve care for RAIRDs. They include strengthening existing specialised networks and setting out what good care looks like through a rare disease equality standard. It has also stressed that it is vital that rare disease is not forgotten in upcoming policies such as the NHS’s 10-year plan, which I will refer to later. In that plan, it is really important that we—by which I mean the Government and the Minister—can give hope to people who suffer from those diseases, and it is really important that they do not think they are on their own. The evidential base response from the Minister would give them that assurance, and it is important that the progress made to date by the UK rare diseases framework is built on. That is my first question: is the rare diseases framework part of the NHS 10-year plan?
I want to share an example that has been highlighted to me of someone who has felt the personal impact of rare autoimmune rheumatic disease. Zoi lives with a life-threatening RAIRD, granulomatosis with polyangiitis vasculitis. In her words, she is “lucky” because she had a relatively short journey to diagnosis. When she looks at others, she thinks she is lucky. I would like everybody who suffers from these diseases to have the same luck—if luck is the word. I do not believe in luck; my personal opinion is that everything is predestined. I am interested in how we make it better.
The quick diagnosis came only because Zoi’s GP recognised her symptoms and knew to refer her right away. Does every doctor have that knowledge? I hope they have, but they might not have the personal observation of that doctor. The difference was that he had had a friend who had died of the disease, so he knew what to look out for and red-lighted those symptoms.
Despite Zoi’s positive experience of diagnosis, however, her experience of care since has been variable—that is the second stage. Following diagnosis of the disease, the care system works its way out. She has faced long waits for appointments and poor communication between teams responsible for her care. In one instance, she received a letter from a consultant four months after the date of the appointment. Was that the fault of the Royal Mail? I do not know. It was not Zoi’s fault that she did not know about the appointment until it was too late. It meant that she had been taking a medication unnecessarily for months longer than needed.
It is about early diagnosis, treatment going forward and speed and urgency in the process to make it happen. Zoi works for a charity that supports other people living with vasculitis. She describes it as “heartbreaking” that hers is one of the best diagnostic journeys one will hear of. She has been diagnosed and gone through the NHS process to get out the other side and try to be better. As she says, hers is one of the best diagnostic journeys, but how can the rest be improved?
How do we improve care? Speedy diagnosis should not be down to Zoi’s word “luck”. People such as Zoi living with serious rare diseases should be able to access vital care when they need it. That is why I am calling on the Minister to consider the following recommendations advocated by RAIRDA. It is important to be aware of the issues.
The first recommendation is to ensure that rare diseases are a focus of the NHS 10-year plan. I am always pleased to see the Minister in his place. I mean that genuinely, not to give the Minister a big head. He comes with an understanding that we all greatly appreciate— I do and am sure everybody else does. Will there be a focus in the 10-year plan on rare diseases? I am pretty sure the answer will be yes, but we need confirmation of that in Hansard today. We need to reassure our constituents who are struggling with disease and are unsure what the future means for them.
The UK rare diseases framework, introduced just three years ago in 2021, has been a significant step forward in securing equity of treatment for rare diseases. I welcome that, but sometimes the system does not work as well as it should. It is crucial that the Government do not lose sight of the work done to date to drive change for people living with rare conditions. Good work has been done, and I always like to recognise good work. It is important that we give encouragement to those who are working hard, and it is important sometimes to think, when we are ploughing away, what we are getting for it. Many of us—all of us in this room, for instance—appreciate what our NHS does. The good work that has happened for those with rare conditions needs to continue with the same zest, enthusiasm and fervour as it has done in the past.
It is particularly important that the working groups on the NHS 10-year health plan consider how improvements in rare disease care will be championed in that plan. In addition, it is important that the plan considers how the work plan of the UK rare diseases framework will be continued past the framework’s end point in 2026. That is my second ask. I am sure that within the 10-year plan the Government are committed to that continuation, but I need to personally reassure my constituents and we need to reassure the nation. We need to reassure those 170,000 individuals and their families and friends.
The framework has been an important tool in co-ordinating methods to improve care for rare diseases, and not just in England. I understand that health is a devolved matter, but this is how it works: whatever happens here, health-wise, is the next stage for us back in Northern Ireland, through the Health Minister. I was talking to another Health Minister on the tube coming here, and we were saying how important that co-ordination across all four regions is. It is good to push for that here, and to see it received back home.
The framework has been an important tool in co-ordinating methods to improve care for rare diseases, not just in England but across the United Kingdom of Great Britain and Northern Ireland. The numbers of people suffering in Northern Ireland may seem small numerically, because we are a region of 1.9 million people, but the impact is huge. I am overtly aware that health is a devolved matter, but I am also aware that the standard can and should be UK-wide. The Minister always gives me and those from other parts of this great United Kingdom reassurance on the co-ordination between here and the Northern Ireland Assembly. I know he has met the Health Minister, Mike Nesbitt, and I am sure they will meet again in the foreseeable future.
How do we develop a standard of care? The National Institute for Health and Care Excellence quality standards consist of defined, measurable statements that can be audited to reduce variations in cases throughout the country. A rare disease quality standard would help to incentivise an increased focus on delivering high-quality care and treatment for rare conditions in the NHS, including rare autoimmune rheumatic diseases. That is my third ask: to develop the standard of care we need to have a quality standard, which would help to incentivise all the regions—all the parts of England, Scotland, Wales and Northern Ireland collectively; better together.
Work in this area is already well under way. RAIRDA has been working hard with organisations across the rare disease community to understand what good care looks like for people living with rare disease, and how that should be reflected in quality statements. Has the Minister had the opportunity to talk to the alliance? I am sure he has; I do not doubt that for a second. It would be good to have that liaison to help to bring together the ideas from the alliance and the Government. It is important that the current work to develop quality statements is built on in a timely way, with the swift development of a rare disease quality standard.
On my fourth request, it is clear that we need development in IT capacity in the fight for diagnosis, to ensure that more people can experience a quick diagnosis, like Zoi did. We need to increase funding for research into the diagnostic journey for rare autoimmune rheumatic diseases, to aid the development of diagnostic technology. It is really important that we look towards the next stage on research and development. How do we do that?
To sidestep slightly, today’s paper—I think it was the Express—said that the Government should be doing something to look at dementia as the numbers rise. Although we are talking about rare diseases that will be well down the Government’s to-do list, early diagnosis is important, as is research and development to improve the capacity to find a cure, to lessen the pain and to lengthen the time that people have in this world. Again, any indication of what is happening with research and development would be greatly appreciated.
Investment in research would help to identify blockers to rapid diagnosis, as well as supporting the development of digital tools for faster and more accurate diagnoses. Some months ago my colleague, the hon. and learned Member for North Antrim (Jim Allister), asked the Secretary of State for Health and Social Care a question in the Chamber about the report on the way forward for the NHS. He mentioned the need for digital data tools, and the Secretary of State replied very positively, so I think the Government are looking into this, but it is important that we have the digital tools in place. With better data and more accuracy, we can help to speed up the process and find a better way forward.
Because of their rarity, it is unrealistic to expect every hospital to have clinicians with expert knowledge of rare autoimmune rheumatic diseases. I understand that, as we cannot know everything. Clinicians may have a small portion of knowledge, but this subject requires expert knowledge, so we need another way of doing it. A 2024 survey found that 29% of respondents were not very, or not at all, confident that the specialist healthcare professionals providing their care understood their condition. How do we improve that? I understand that we are in difficult, financially straitened times, and the Government have rightly committed a large sum of money to the NHS and health services—as they should, and I support that entirely—but we need improvement. My fifth ask of the Minister is: how can we do better? If 29% of respondents are not very confident, or not at all confident, we need to address that.
I believe that improvement can be achieved by developing specialised networks for rare autoimmune rheumatic conditions. Such networks would allow health professionals to access the knowledge and expertise of tertiary specialists, while also developing the capability and capacity to provide more care and treatment locally. I feel that would be the answer to my fifth question, and I am interested to hear the Minister’s thoughts.
Networks already exist, with an excellent example being the Eastern Network for Rare Autoimmune Disease, established in 2016. We have a system in place, so let us look at it—not in a judgmental way—to see what it is doing and where improvements can be made. The network was formed to maximise patient access to relevant expertise while keeping their care as close to home as possible. This has been achieved by setting up excellent communication and cascading training to enable much better co-ordination, digital data sharing and contact between specialised centres and local trusts.
The network lead has calculated that the network’s creation has saved the NHS money, so it has to be considered. The network runs at a cost of between £70,000 and £100,000, but it has generated annual savings estimated at between £150,000 and £200,000. That means that for every £1 spent, the NHS has saved £2, over a seven-year period, through a reduction in the use of inappropriate high-cost drugs.
On my sixth ask, networks throughout the country, like ENRAD, are run on the good will of clinicians. That is not sustainable, and it never can be. I respectfully ask the Minister to perhaps look at the ENRAD scheme, which is run on the good will of clinicians and has been very effective in how it responds, to see how such networks can be better helped to expand. If it saves money—if every £1 saves the NHS £2—then the financial equation is clear, and it should be pursued across all of this great United Kingdom of Great Britain and Northern Ireland.
To address this issue, the Government must provide the necessary financial support for networks to be developed and maintained. That funding would enable the creation of vital posts, such as meeting co-ordinators, and allow clinicians to be reimbursed for their time. Again, I feel that would be the right incentive. Good will is good to have, and there is much of it across this great nation, but, at the same time, there may be better ways of doing things. Such support would ensure that benefits for patients, and the NHS’s budget, could be realised throughout the country. With the £25.3 billion committed to the NHS—I think that is the figure, but the Minister will correct me if I am wrong—this is another way to save money in the NHS, and it really should be done.
My last request is about specialist nurses, who can play a crucial role in supporting people living with rare autoimmune rheumatic diseases. The preliminary results from the 2024 survey show that respondents with access to a specialist nurse were more likely to report that they had access to enough information and support about their condition, compared with those who did not have any access to a specialist nurse. But less than three in 10 respondents—some 28%—had accessed information from a specialist nurse, and this varied widely by condition group. Wow: how important is the role of specialist nurses? I would be reassured if the Minister came back to me in respect of the critical role they play, perhaps exclusively. If only 28% of people have access to information from a specialist nurse and it should be more, what can be done to improve that?
Finally, when developing the NHS workforce plans, will the Minister consider what more can be done to recruit more specialist nurses to support people with rare autoimmune rheumatic diseases? We must always consider the fact that although the chances of getting a rare disease may be one in 10,000, the reality is that the patient deserves all the help we can offer, from diagnosis to treatment and support. I ask the Minister—very kindly, sincerely and humbly—to clarify whether that is this Government’s goal. I believe that it is, but it is not about me today; it is about the people we represent in this House, collectively, together, across this great nation. I believe we have an important role to play.
RAIRDA, with all the clinicians and all the charities, has brought together some positive ideas that can help us together. This is not about blame—it is is never, ever about blame; it is about how we do it better. On behalf of my constituents who have contacted me, and others who will speak shortly, and for the shadow Minister and the Minister, we put forward our case and look forward to support from Government.
Dr Rupa Huq (in the Chair)
I remind Members that they should bob if they want to be called in the debate.
Democracy in Bangladesh
Debate between Rupa Huq and Jim Shannon(3 months, 1 week ago)
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Dr Huq
My hon. Friend always makes excellent points. When we are talking about minorities such as Hindus and Buddhists—there are various minorities—it is interesting to look at who is propagating the stories. There have also been pictures of devout Muslim students from the madrasas in their topi defending Hindu homes. BBC Verify has shown that some of these attacks have been on people associated with the previous regime. Sometimes these things are a bit amplified by people with agendas, but my hon. Friend makes a great point.
Jim Shannon
I commend the hon. Lady for securing this debate. She is absolutely right to highlight the issue. Does she not agree that democracy means the protection of human rights and religious freedom? I declare an interest as the chair of the all-party parliamentary group for international freedom of religion or belief. We stand up for those with Christian faith, those with other faiths and those with no faith, the right to religious freedom and the right to practise faith or to have no faith. There can never be true democracy in Bangladesh until a Government and a system are in place that do not penalise people based on how they worship or where they worship, but that offer protection for people’s differences. That is what society should be like.
Sheep Farming
Debate between Rupa Huq and Jim Shannon(3 months, 2 weeks ago)
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Jim Shannon (Strangford) (DUP)
It is not often I get called first after the introductory speech—so thank you, Dr Huq. It is a real pleasure to serve under your chairship. I commend the hon. Member for Hexham (Joe Morris) on setting the scene so very well. I was at the Adjournment debate with him last night and now we are in Westminster Hall together—we are on a roll, and I wish him well.
As Members who have known me for a longer time will be aware, and perhaps those who are new, I represent a fairly rural constituency where farming is a massive contributor to our local economy. I live in a farm down the Ards peninsula at Greyabbey, and I have been steeped in agricultural activities all my life, so I understand the pressures and challenges faced by the farming industry and our local farmers. It is a pleasure to be here to speak on this issue and to give the Northern Ireland perspective. I am so pleased to see the Minister in his place—well done. I look forward to him responding to our questions as much as he can, although I am ever mindful that farming is a devolved matter; a theme of my speech will be how we can do it together across this United Kingdom of Great Britain and Northern Ireland.
I declare an interest as a member of the Ulster Farmers’ Union. I was also at one time, in a very small way, a hobby farmer of sheep. I enjoyed it, but the workload became so great with other activities that it was impossible to look after the sheep, so I sold them to my neighbour up the road. I have fond memories of lambing times and helping all those ewes to lamb.
Sheep farming is a significant part of the UK agricultural sector, shaping both landscapes and rural economies in the four regions of the United Kingdom. There are some 31.8 million sheep in the UK, down from a recent peak of 34.8 million in 2017. This debate is so important, because there has been a decrease in many such sectors.
Sheep are predominantly, but not exclusively, found in the north and west of the United Kingdom. I will share some figures to give a Northern Ireland perspective. The value of output from sheep decreased by 0.5% to £109 million in 2023. The total number of sheep slaughtered increased by 4% in 2023, whereas the average carcase weight decreased by 2% to 22 kg. I have to say that I owe all these stats to the Ulster Farmers’ Union; I thank it for making them available. The volume of sheepmeat produced increased some 2% in 2023, and the 2023 sheep census showed that there were approximately 2 million sheep in Northern Ireland, including almost 1 million breeding ewes. Thirty-eight per cent of farmers in Northern Ireland—quite a large number—have sheep, and the value of the sheep industry output in 2022 was £106 million, so sheep farming plays a critical part in the farming community in which I live and in the Ards peninsula.
Strangford has numerous sheep farmers who farm sheep for meat and wool. Wool has not been getting much of a price over the last few years, but it is all part of farmers’ revenue, albeit a small one, in rural villages like Carrowdore, Ballywalter, Greyabbey—where I live—Kircubbin and Portaferry, across the whole peninsula, across Ards and indeed further out to Comber and Ballygowan in the new constituency, which takes in more of South Down, down as far as the Quoile bridge in Downpatrick. There are numerous sheep farmers there too; countless farmers contribute to the local agricultural economy.
Farming is a huge aspect of the local economy of Strangford. Our sheep and lamb farmers provide high-quality meat to subsidiaries for retail purposes. Numerous local farm shops, such as McKee’s in Newtownards and Harrisons in Greyabbey, provide a farm-to-fork service, showcasing the locality and local restaurants. Doing farm to fork means that the shops get all the revenue from the breeding of the lambs, their sale and ultimately the eating. For McKee’s and Harrisons, it is quite productive.
The United Kingdom imports sheep products under new free trade agreements signed since we exited the EU. The hon. Member for Monmouthshire (Catherine Fookes) spoke about the price of legs of lamb from here and from New Zealand. Agreements include tariff concessions for a range of products, such as lamb meat.
The previous Government set out their priorities for England in the 2023 environmental improvement plan, including the need for more environmentally friendly farming to meet further targets. Although I appreciate that farming is devolved, I believe the UK Government and the Minister here have a responsibility to ensure the United Kingdom of Great Britain and Northern Ireland as a collective has a joint policy on promoting sheep farming and protecting our family industries through future trade deals. The hon. Member for Hexham referred to trade deals, as did the hon. Members for Monmouthshire and for Westmorland and Lonsdale (Tim Farron). They have an effect on farming back home and on farmers in my constituency.
There are environmental factors that will ultimately impact the future of farming. Steps must be taken to protect our sheep numbers through adequate funding. We often come here to ask for funding, but the fact is that sheep farming is such an integral part of my constituency and, indeed, of Northern Ireland. It makes a £106 million contribution to the economy, which is quite significant and cannot be ignored. We sometimes overlook the number of jobs involved and the families that live on those incomes.
When the hon. Members for North Antrim (Jim Allister) and for South Antrim (Robin Swann) speak, they will give their perspectives. There will be three contributions from Northern Ireland, and we will all say the same thing about the importance of sheep farming. The point is that we are here to represent our constituents.
The Ulster Farmers’ Union has called for a sheep scheme in Northern Ireland to improve the welfare of sheep and increase the sustainability of sheep businesses. With the Northern Ireland sheep industry taskforce, it will continue to lobby for a sheep scheme. I therefore urge the Government to engage with officials back home from the Department of Agriculture, Environment and Rural Affairs, including Minister Andrew Muir, to ensure the long-term sustainability of the Northern Ireland sheep industry. If the Minister is not able to tell us today what discussions he has had with Minister Muir, perhaps he can come back to us. I understand the Minister has met him, on probably more than one occasion, so I would be interested to hear what discussions have been had and what that means.
Our farming sector is such an important aspect of our economic success. In this case we are talking about lamb and sheep, but it is also about dairy, beef, poultry and cereals; they are all part of the massive jigsaw that contributes to the economy. What we are debating today is an integral part, and we must do more to promote and expand it. I look forward to seeing the plans of the Minister and our Labour Government, and I have hope that the devolved institutions can play a significant role in our agricultural success.
The Minister told me that he had been in Northern Ireland in my constituency—I was unable to be there at the time. He was there before he was elected as Minister, and I told him, “Minister, last time you were here, you were asking questions; the next time you come back, you’ll have to answer them.” Today, Minister, questions have to be answered.
Dr Rupa Huq (in the Chair)
If Members could keep to within seven and a half minutes each, everyone will get in.