Rare Autoimmune Rheumatic Diseases

Peter Dowd Excerpts

Tuesday 10th December 2024 Westminster Hall

[Peter Dowd (Bootle) (Lab)]

It is a pleasure to see you in the Chair, Dr Huq. I thank the hon. Member for Strangford (Jim Shannon) for bringing this issue before us today, because it is one of those subjects that does not get the attention that it needs. It is really important to tease out some of the issues, because there is a danger that they could be forgotten if we do not. The hon. Gentleman pushes this matter time and again.

The whole question of rare autoimmune rheumatic disease needs to be set in the context of the wider issue of rare diseases, which are conditions that affect less than one in 2,000 people. There are 7,000 rare diseases, affecting one in 17 people, which is 3.5 million people. They can be of a genetic or non-genetic origin and they affect adults and children. Some 75% of rare diseases affect children and more than 30% of children with a rare disease die before their fifth birthday. That is a sobering statistic.

We have to put the issue into that context: it affects the lives of so many people, not just those who are directly affected by the particular disease, but their family members and friends. A disease can also have an impact on someone’s work-life balance and their job, as well as more broadly. There are challenges, but I thank the Rare Autoimmune Rheumatic Disease Alliance for bringing those groups together to push for this issue. It believes, as we all do, that getting together gives us more strength. I support that, and I have no doubt that the Minister supports that too.

We do not want rare diseases, particularly this type of disease, to be left at the back of the queue. The Government acknowledge that, so I am not pointing the finger at them, or at health professionals. Many people with this type of disease say that they do not get the support they need, but they do not blame individual clinicians, practitioners or healthcare workers; they blame the system in so far as it does not bring those professionals together in, for example, the clinical networks that the hon. Member for Strangford referred to. This is not a finger-pointing exercise, but it is important that where we can identify, and have identified, problems in the system, it is our responsibility to try to fix those problems.

The hon. Gentleman also touched on the need for defined, measurable and identified standards to reduce inequalities in healthcare provision. RAIRDA is working with others to set out key statements that it believes will form the quality standards for the future. It has set out the challenges, such as the challenge of focusing on this issue and the points that the hon. Gentleman raised that the time from symptoms to diagnosis can be from two and a half years to as much as five years, and potentially beyond.

There is also a challenge with access to specialist knowledge and expertise, and the hon. Gentleman’s valid point, which I repeat, about the need for those specialist networks. There is the challenge of getting support out to the people—the professionals—dealing with our constituents in one way fashion or another. I know the UK rare diseases framework, and the England rare diseases action plan in my case, has been trying to help patients to get a diagnosis faster but we need to do more.

There has been a push to raise awareness among professionals, but we need to do more there. We need better co-ordination of care and improved access to specialist care, treatment and drugs. We also need to focus on the needs of the various nations. Although they all face similar problems, it is important to have a focus at a national and potentially regional level.

I support the hon. Gentleman, who made important points. We will no doubt come back to this issue. I know that the Minister will respond, as he always does, constructively and positively, so I look forward to hearing what he and Members from other parties have to say. I will finish by saying to the hon. Gentleman that at no point during my contribution did I mention either Shakespeare or Sophocles.