Women’s Health

Rupa Huq Excerpts

Thursday 27th February 2025 Westminster Hall

[Several hon. Members rose—]

[Dr Rupa Huq (in the Chair)]

Everyone who wants to speak should be bobbing, because we will be calculating the time limit depending on how many there are.

[Alice Macdonald (Norwich North) (Lab/Co-op)]

It is a pleasure to serve under your leadership, Dr Huq. I thank my hon. Friend the Member for Hastings and Rye (Helena Dollimore) for securing this important debate. As we have heard for far too long, women have been paying the price of an NHS that simply is not working. Women know that; in a survey that I saw, half of women said that they believed that their health was treated as second class.

Our economy is also paying the price. There are many areas that we could mention, but I want to focus on one in particular: the often very challenging journey that people experience when trying to have a baby. More than 3.5 million people in the UK go through some kind of fertility challenge, and that obviously has a huge impact on women. It can happen for a variety of reasons and is often heartbreaking. There is no one-size-fits-all approach to addressing fertility, but the National Institute for Health and Care Excellence guidelines are clear that, for women under 40 with a clinical diagnosis requiring in vitro fertilisation, or with unexplained infertility for two years, three NHS-funded cycles of IVF should be offered. The guidelines also recommend that women aged between 40 and 42 should be offered one cycle of IVF on the NHS, subject to some conditions.

Yet the reality is a postcode lottery. It is down to local integrated care boards to decide their approach, and only around a quarter of ICBs in England offer a full three cycles. The east of England, where my constituency is, has the lowest proportion of NHS-funded cycles, and my own ICB of Norfolk and Waveney offers two cycles. In other areas—north-east London, for example—the full three cycles are funded, whereas in areas such as Hampshire only one is.

Recent data tells us that fewer than 27% of IVF patients receive NHS funding nationally. When we think about our NHS, that is a huge anomaly. It means that most patients are paying for their treatment. Other factors also come into play: inequalities are stark when it comes to access and outcomes for black and ethnic minority patients, as well as for those in female same-sex relationships.

The postcode lottery needs to end. We must address those inequalities in access to NHS funding. There also needs to be greater education for healthcare professionals around fertility, regarding diagnosis and treatment, and for people themselves, so that patients have the choice and know what to do when it comes to their own fertility.

Beyond medical treatment, there is also not enough support in the workplace. We really need a whole-of-Government approach to this issue. It is not just about the Department of Health and Social Care; there are so many other areas, including, importantly, the Department for Work and Pensions. There is no legal right to time off for fertility treatment and currently, under the Equality and Human Rights Commission’s code of practice, fertility treatment is compared with cosmetic dental surgery. That means that many employers regard fertility treatment as a “nice to have”—an elective choice. Instead, it should be treated as a medical procedure that is needed.

I have heard stories of women losing their jobs simply because they have attended an IVF appointment. That needs to change. That is why I am campaigning, with Fertility Matters at Work and others, for a change in the law, so that people—women, in particular—have a right to paid time off for fertility treatment. I have met the Minister for Employment, my hon. Friend the Member for Birkenhead (Alison McGovern), to discuss the issue, and I welcome the continued engagement with the Government. I hope the Minister will meet us to discuss those demands. Many companies, including Centrica, E.ON and Cadent, already give women time off because they know it makes sense for productivity and happiness at work. Almost one in five people undergoing fertility treatment end up leaving their jobs because of the impact.

I also want to touch on miscarriage, another aspect of the journey; I know that my hon. Friend the Member for Walthamstow (Ms Creasy) will mention it as well. We need a right to time off for miscarriage before 24 weeks. It causes huge trauma, and women do not recover from it straight away. They need to be given time.

In the 30 seconds that I have left, I want to touch on gynaecology in my area of Norfolk. The situation is dire: we have the worst wait for gynaecology treatment in England. We are nowhere near the 92% target of 18 weeks: the figure is 44% in Norfolk and Waveney. Research from the House of Commons Library shows that more than 1,000 patients have been waiting for more than a year in Norfolk and Waveney, and that has a massive impact on women’s health.

I have to stop there. I wanted to talk about women’s health hubs, but I am sure that others will. There are so many issues to discuss, but when it comes to fertility and gynaecology, we simply cannot wait. Our manifesto promised that we will not neglect women’s health again, and I am sure that we will live up to that promise.

[Dr Rupa Huq (in the Chair)]

With a time limit of four minutes—the clock is counting backwards—I call Jim Shannon.

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[Wera Hobhouse]

I could not agree more. We already have a crisis, which that will only exacerbate, so I thank my hon. Friend for rightly highlighting that issue.

My Bath constituents are at particular risk. A recent report said that appointment waits have doubled since the pandemic—another serious trend that the Government need to look at. A constituent recently reached out to me about the length of time it takes to get an endometriosis diagnosis in the NHS, which has already been mentioned today. That is not only a problem in Bath; far too many women wait far too long. The Government need to look at that.

In better news, the national maternity survey 2024 found that Bath’s Royal United hospital received a top Care Quality Commission rating over its treatment of patients. The survey found that those giving birth felt confidence and trust in staff during their care at the RUH. There was also praise for the dignity and respect people that were treated with. I am grateful to the RUH and all its staff for setting such a brilliant example, and offer them my congratulations.

In such a debate, I cannot, as chair of the eating disorders APPG, leave out eating disorders. Although they affect more women than men, it is not only women who suffer from them. One issue of particular concern is online platforms recommending harmful eating disorder-related content to young users. The Center for Countering Digital Hate, whose representatives I met this week, recently published research on the dangerous eating disorder videos recommended by the YouTube algorithms. It set up an account for a 13-year-old girl searching for body image and dieting content, and found that, of the next videos recommended by the YouTube algorithm, one in four was harmful eating disorder content. That is alarming.

I urge the Government to look into that and to hold these powerful digital platforms to account. In 2025, it is not acceptable that there are continuing disparities in women’s health and, in particular, young women’s health on this issue. I urge the Government to take action.

[Dr Rupa Huq (in the Chair)]

I am sorry to do this, but I am imposing a newly reduced time limit of three and a half minutes.

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[Dr Evans]

I am really sorry; I am tight on time. Question No. 4 is, could the Minister kindly clarify, confirm and commit to that promise? If not, why not?

On the menopause, when the women’s strategy was announced in 2022, the then shadow Health Secretary—now the current Health Secretary—said:

“I challenge the Secretary of State to go further than the proposal he outlined to train incoming medical students and incoming doctors. What plans do the Government have for clinicians who are already practising? We need to upskill the existing workforce, not just the incoming workforce. However, let us be clear: informing clinicians is no good if we do not also improve access to hormone replacement therapy, so where is the action in the strategy to end the postcode lottery for treatment?” —[Official Report, 20 July 2022; Vol. 718, c. 977.]

As we are now eight months into the Labour Government, question No. 5 is, when will the strategy document he talked about be produced and presented to the House? Has he made an assessment since July 2024 of HRT medication access in terms of locality?

Turning to workforce, we know that the demand for women’s services is outstripping the supply of generalist and specialist support. The Royal College of Obstetricians and Gynaecologists has highlighted ongoing problems with maternity workforce staffing and agreed that the NHS long-term workforce plan was a good first step on the way to properly staffed maternity services. Therefore, question No. 6 is this: we know that the Government will be looking at a refresh of the plan this summer, so will the Minister give an undertaking today that women’s health will be a priority in both primary and secondary care? Will she update the House on the obstetrics workforce planning tool, which the DHSC commissioned to help maternity units calculate staffing requirements, and when it will be rolled out across the country?

Given that time is tight, I will close by saying that I have heard it said that a healthy woman means a healthy family, a healthy community and a healthier world. That is hard to dispute that; it is now for the House to deliver it.

[Dr Rupa Huq (in the Chair)]

Finally, for what we think is her first outing as a Minister in Westminster Hall—although she is a veteran of the Chamber already— I call Ashley Dalton.

[The Parliamentary Under-Secretary of State for Health and Social Care (Ashley Dalton)]

It is a pleasure to serve under your chairship, Dr Huq. I congratulate my hon. Friend the Member for Hastings and Rye (Helena Dollimore) on securing this really important debate on women’s health. She and all Members who have participated today have raised a number of important points.

Let me begin by agreeing that reading the Ockenden review is harrowing, and progress on women’s health has been far too slow. I want to address some of the key issues that Members have raised; I will attempt to cover as many as I can, but if I miss anything, please get in touch, and I will endeavour to fill any gaps after the debate.

My hon. Friend the Member for Hastings and Rye raised the story of our very good friend Margaret McDonagh and how her experience feeds into the medical misogyny that has been highlighted on a number of occasions. In addition, it was very powerful to listen to my hon. Friend the Member for Washington and Gateshead South (Mrs Hodgson), who put an important focus on women’s voices and said how important it is that those are heard in this space. Those voices can lead to the important cultural shift that my hon. Friend the Member for Stafford (Leigh Ingham) raised and that underpins all of this.

The hon. Member for Strangford (Jim Shannon) and my hon. Friend the Member for Cumbernauld and Kirkintilloch (Katrina Murray) spoke about the devolved Governments. We are committed to ensuring that we have closer working between the UK and devolved Governments so that we can share insight and best practice and cut waiting lists right across the UK.

My hon. Friend the Member for Cumbernauld and Kirkintilloch and the hon. Member for Wimbledon (Mr Kohler) raised issues relating to eating disorders and women in online content. The Government inherited a broken NHS, in which patients wait too long for eating disorder treatment. The 10-year plan will overhaul the NHS, and the Online Safety Act 2023 will prevent children from accessing harmful online content on eating disorders.

The hon. Member for Canterbury (Rosie Duffield) raised the differences in heart attack symptoms between men and women. NHS staff can now access guidance through the British Heart Foundation, and there are learning sessions available to support training. NHS England ensures that there is clear messaging on atypical symptoms in women in all public campaigns, and training on heart attacks and the identification of gender and sex are a core part of the cardiology curriculum. The hon. Lady will be aware that the National Institute for Health and Care Research has a very clear definition of sex and gender, which has an important impact on delivering the right healthcare to everybody.

I was really interested to hear from my hon. Friend the Member for Dudley (Sonia Kumar), who has expert knowledge of perinatal pelvic health services, which are being rolled out across England to ensure that women have access to physiotherapy for pelvic health issues during pregnancy and for at least one year after birth. Those services incorporate a range of interventions aimed at improving the prevention and identification of perinatal tears and other perinatal conditions.

The Chair of the Women and Equalities Committee, my hon. Friend the Member for Luton North (Sarah Owen), spoke about the Committee’s recent report, which we welcome and take extremely seriously. We are grateful to everyone who gave their time and expertise to the inquiry, and to the Committee for its thoughtful recommendations. My Department has looked closely at the findings, however chunky they are, and has worked with NHS England to consider the recommendations and develop a Government response. I assure her that it will be published very soon.

The hon. Member for Epsom and Ewell (Helen Maguire) spoke about contraception. Let me make one thing really clear: we are committed to ensuring that the public receive the best possible contraceptive services, which are vital in helping women to manage their gynaecological health. Since 2023, the NHS Pharmacy Contraception Service has allowed pharmacists to issue ongoing supplies of contraception that have been prescribed by GPs and sexual health services. That service was relaunched in December 2023 and will be continued.

We have also talked about fertility issues. Access to fertility treatment across the NHS has been varied across England, and funding decisions are made by integrated care boards, based on the clinical needs of the people they serve. We expect those organisations to commission fertility services in line with the guidelines set by the National Institute for Health and Care Excellence. We recognise that provision is variable across England, and we intend to support ICBs to implement the updated evidence in the revised guidelines to benefit all affected groups.

We recognise the significant physical and psychological consequences of birth trauma and the devastating impact it has on women. I thank hon. Members for their contributions to the report of the APPG on birth trauma—the hon. Member for Canterbury was intrinsic to it. The Government will ensure that lessons are learned from the recent inquiries and investigations, including the APPG report, and that the experiences of women and their families are listened to and woven into our efforts to improve services.

For too long, women have been let down by their healthcare. The system is broken—it does not work for them. This Government are committed to fixing women’s health as a key part of building an NHS fit for the future. As a first step, we have delivered 2 million more appointments since July, in line with our manifesto commitment of delivering 2 million more appointments in the first year. We have achieved that seven months early. That includes appointments for breast cancer care, for gynaecological conditions such as endometriosis and for many other conditions.

However, we are still nowhere near satisfied with the state of women’s healthcare. Kate’s story, which my hon. Friend the Member for Hastings and Rye shared, is testament to that state.

New Hospital Programme

Rupa Huq Excerpts

Wednesday 22nd January 2025 Westminster Hall

[Dr Rupa Huq (in the Chair)]

I will call Dr Kieran Mullan to move the motion, and then I will call the Minister to respond. As is the convention with these 30-minute wonders, there will not be an opportunity for the Member in charge to wind up.

[Dr Kieran Mullan (Bexhill and Battle) (Con)]

I beg to move,

That this House has considered the New Hospital Programme.

It is a pleasure to serve under your chairmanship, Dr Huq, for a debate that is very timely in the light of the statement of the Secretary of State for Health and Social Care this week. My remarks will focus on three hospitals that serve my constituency as part of the East Sussex healthcare NHS trust: Eastbourne district general hospital and Conquest hospital, which are situated outside my constituency but are major secondary care providers for my constituents, and Bexhill community hospital.

As part of the new hospital programme announced by the previous Government, Eastbourne district general hospital is due to be entirely rebuilt, and Conquest hospital is set to be reorganised and the structure improved to ensure that it is fit for the future. Alongside creating additional in-patient wards and improved parking facilities, the plans include expanding the emergency departments at Eastbourne and Conquest, improving access to cardiology and ophthalmology services, and redeveloping out-patient theatres, endoscopy and diagnostic services.

Plans to upgrade Bexhill community hospital are also included in the programme, equipping it to deliver more services locally. Currently, only 53% of space in the hospital is allocated to clinical space. Once that work is complete, that will increase to 70%. To reflect increasing demand for care, the plans will also increase the number of hospital beds by 13%, the number of single rooms as a proportion of hospital space from 18% to 70%, and the number of out-patient consulting rooms by 28%.

Having worked in the NHS as a doctor in A&E for a number of years before becoming an MP, I know the difficulties that can arise from working in buildings that are in need of improvement. The physical infrastructure of the building is outside the control of frontline staff, so they often have to do whatever it takes to make it work, but it would be better if they did not have to. I think the Minister would agree that despite those circumstances, our healthcare staff work tirelessly, and we owe it to them to deliver better infrastructure.

Whatever the new Government may say, progress on the new hospital programme was being made under the previous Government, despite the challenges presented by the pandemic and the inflationary pressures on construction costs as a result of the war in Ukraine. The programme was incredibly ambitious but remained a significant commitment to investment in hospital infrastructure.

During the 2024 general election, the Labour party committed to delivering the new hospital programme. Candidates up and down the country made pledges to deliver on the programme, but this week, the Health Secretary broke that pledge at the Dispatch Box by moving the goalposts, as a result of which many constituents in Bexhill and Battle will not see the benefits of the programme until 2039 at the earliest.

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[Dr Mullan]

I do not have to let anybody intervene, but I will let you intervene to make a point about your hospitals. If there continues to be a back-and-forth, I will not let anybody intervene—this is my speech and I will make my points.

[Dr Rupa Huq (in the Chair)]

Order. We have had the word “you” a few times, which refers to me as the Chair.

[Dr Mullan]

There is not time for a continual back-and-forth in a 30-minute debate, so I will make some more progress.

When it comes to comparing the record of the NHS, the performance of the NHS under Labour in Wales, across many of the metrics that Labour Members have criticised us for, is actually worse than the record of the NHS elsewhere. That is because across England, Scotland and Wales—this is why I hope we can come to some agreement—we not only had the pandemic but face an increasing demographic challenge.

The SNP, Labour and the Conservatives, in the three areas in which we respectively have responsibility for health, are seeing considerable challenges that all of us are struggling to manage, as the Labour party will now struggle to manage them. As was the case when Labour was last in office, capital spending is often deprioritised when budgets are challenged, and decisions are made that might make sense in the short term but that also create long-term pressures.

The issue that we are debating is nothing new. Members from both sides of the House agree that our hospitals need modernisation, with 42% of the NHS estate having been built before 1985 and 14% of the estate pre-dating the NHS.

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[Perran Moon]

I thank the hon. Member for giving way. I appreciate that he does not want this debate to be political, but so far it has been all about politics. If we want to have a debate about the state of the NHS and how we transform it, it must be a level debate.

In Cornwall, we have one general hospital, but we are very fortunate that it is in the first phase of the programme because it is a women and children’s unit, which we have a desperate need for. It was originally promised by the former Prime Minister, Boris Johnson, more than 10 years ago, but nothing came to fruition. We have been waiting a long, long time for it.

I fully accept that government is about choices. We have had to deal with—whatever we want to say; however we want to position it—a number of different challenges since we came into government—

[Dr Rupa Huq (in the Chair)]

Order. The Clerk is frowning at me, because this is a bit long for an intervention.

[Perran Moon]

Does the hon. Member agree that we now have a coherent programme—however long it is for—to implement those changes?

[Dr Mullan]

That remains to be seen; we will have to see what the Office for Budget Responsibility says in March about the planned public expenditure limits.

To be clear about taking interventions, I am very happy to debate things, but this is a 30-minute debate in which the primary focus is on the person who secured the debate. The Minister will get a chance to make those repeated points, so I will not let anyone else make another intervention. I was happy to let people make interventions, because I am keen for you all to champion your local hospitals, but if you are not willing to play ball with me—

[Dr Rupa Huq (in the Chair)]

Order. Avoid the word “you”—that is one to steer clear of.

Rare Autoimmune Rheumatic Diseases

Rupa Huq Excerpts

Tuesday 10th December 2024 Westminster Hall

[Jim Shannon]

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

[Dr Rupa Huq (in the Chair)]

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

--- Later in debate ---

[Alison Bennett (Mid Sussex) (LD)]

It is a pleasure to serve under your chairmanship, Dr Huq. I thank the hon. Member for Strangford (Jim Shannon) for bringing forward this debate on a subject that all too often does not get enough attention, but that is important and affects millions of people. I also thank the hon. Member for Bootle (Peter Dowd) for his contribution.

More than 160,000 people in the UK live with rare autoimmune rheumatic diseases. Identifying, treating and caring for those people is complex. Yesterday, my constituent Carrie told me about her experience. She suffers from a number of conditions and has done since she was diagnosed 30 years ago. Interestingly, for someone who has carried those conditions for 30 years, she considers herself fortunate to have been diagnosed with Raynaud’s and lupus at a young age, because it allowed her to start treatment early and receive consistent care. She knows from experience that early diagnosis and treatment makes a real difference, a point that has already been made by hon. Members.

While Carrie believes that she has been lucky and has received good care, she stressed that many people face years of misdiagnosis or dismissal, and poor or almost non-existent care. Those failures only exacerbate their symptoms further down the line. Sadly, one of those less fortunate than Carrie is her own mother, who lives not in Sussex but in Yorkshire, and also has multiple autoimmune conditions. Contrastingly, however, she has always been made to feel like a hypochondriac—not an unusual experience for those seeking help with rare autoimmune rheumatic diseases.

Carrie’s mother was eventually diagnosed after many unnecessary years of suffering. She suffered for longer and to a greater degree simply because no one believed her or was able to diagnose her. Carrie told me that a postcode lottery exists in the quality of care for those with these conditions. It really is down to the specific medics and practitioners who an individual meets as to how well their condition is identified and whether treatment can begin.

Carrie’s Raynaud’s is particularly debilitating in winter. She told me that more awareness of the issues around the conditions and how symptoms can be alleviated is vital. Often, solutions can be as simple as helping with buying things such as thermal gloves or socks.

Another major challenge has been the impact of her autoimmune conditions on her teeth, particularly with the Sjögren’s that she suffers from. Carrie has spent thousands and thousands of pounds on private dental care over the years—the only option as NHS treatment was not available. Despite that money, Carrie now thinks that it is not long until she will have very few teeth left.

Carrie thinks that the current system is disjointed, with her dentist not understanding the issues surrounding her conditions, and her rheumatologist likewise not understanding the impact her conditions have on her dental health. She believes that a more co-ordinated, multidisciplinary approach to treating the conditions would help. It is clear from my conversation with Carrie that we simply must do better on this issue.

We must tackle the postcode lottery, exemplified by Carrie and her mother at opposite ends of the country; build a more joined-up system; and take rare autoimmune rheumatic diseases seriously so that we can start diagnosing earlier and more consistently. While the problems seem daunting, I believe that by collaborating—for example, with organisations such as RAIRDA—we can find solutions to the problems that Carrie told me about.

It is already Liberal Democrat policy to ensure that everyone with long-term health conditions has access to a named GP. We must also do better on dentistry, both generally, by sorting out the NHS contract and ensuring that we have a proper workforce plan for dentistry, and specifically, for people with those rare diseases that have a massive impact on dental health. As well as having access to a named GP, the Liberal Democrats are campaigning for the Medicines and Healthcare products Regulatory Agency to have greater capacity, which would help to speed up the process by which new treatments reach patients—a potential game changer for those suffering with such conditions.

We need change so that we can help the people living with those complex, long-term and debilitating conditions. The diseases may be complex, but I believe the solutions need not be. I am encouraged by the words of hon. Members today, and together, we can effect the change that Carrie, her mother and so many others need and deserve.

[Dr Rupa Huq (in the Chair)]

I call the shadow Minister, the hon. Member for Hinckley and Bosworth (Dr Evans), to speak for His Majesty’s loyal Opposition.