Rare Autoimmune Rheumatic Diseases

Alison Bennett Excerpts

Tuesday 10th December 2024 Westminster Hall

[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.