Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders

Dean Russell Excerpts

Wednesday 22nd May 2024 Westminster Hall

[Dean Russell (Watford) (Con)]

Thank you for your guidance on timing, Mr Dowd; I will be as brief as I can. I deeply thank my hon. Friend the Member for South West Bedfordshire (Andrew Selous) for holding this debate, but I do so with some embarrassment because I feel like I should have done it a long time ago. I will explain why.

I very rarely talk about my personal life in great detail, especially not about my loved ones, but my wife has hypermobility Ehlers-Danlos syndrome. Many of the comments made today, especially in my hon. Friend’s speech, echo very deeply what I have seen from my wife. She has struggled since her mid-teens with gastric issues. As briefly as I can, I will share some of the experiences that she has shared with me, because when she heard about this debate, she urged me to speak.

My wife has had mobility issues for over 15 years now, probably longer. Her experience with the NHS, as wonderful as it can be and as much as I praise it, has not been the greatest. When she has seen GPs, they have questioned what she actually has. A long time ago, they questioned whether it exists. Even when she sees the musculoskeletal unit, she says it has no idea how to deal with her condition. The answer is often physio, but she needs manipulative physio and she does not get that on the NHS. Painkillers will often be thrown in her direction, many of which she has taken, but over time they do not give the same relief. The only thing that has ever worked for her is proper reformer Pilates, but that is not available on the NHS, and water therapy is very difficult for a person with a full-time job who is guided by when it is available.

Many of my points have been made, but the key point I want to get across is that this condition is like an invisible disease. It is almost like a vile torment for those who have it. I have seen my wife in absolute agony from doing the simplest of tasks. There are many times that I have had to apologise when I have gone to events as an MP and people have said, “Is your wife not coming with you?” I try to explain that she cannot come, but the truth is that if she does, she will be in agony for the rest of that evening and the rest of the next day. It is very hard to explain to people what she has. I explain and they say, “Oh, I have never heard of that.”

The condition is like a disability that is not classed as a disability. It affects every part of the body, yet the person is not seen as a whole. Every single aspect of it that I have seen through my wife over the 20-odd years that we have been together is torment for her. From a personal perspective, I love her deeply and I see how strong she is as a woman, yet I see the pain that it causes her. I have deep concern that this issue is just not being looked at. There are lots of holistic therapies and things that can be done, but when only the body parts of a person are being treated—that includes not treating their mental health as well as their physical health—it has a detrimental effect on every part of their life.

I do not want to take up too much time, but I echo the points that have been made. The NHS needs to ensure that the condition is identifiable, and that the training, the guidance and the signposting are there. We need to ensure that holistic therapies such as Pilates, which do work for some, are not just seen as a thing that sounds nice, but are actually used as a pathway for care. This needs to be looked at as a lifelong condition, because we need to make sure that people are looked after as time goes by and they get older, with other conditions coming into play. The key aspect is understanding.

I am really proud of my hon. Friend for hosting this debate—as I say, I am embarrassed that I did not do it myself. If it helps just one or two extra people realise that this is what they need to see their GP about and be forceful, it will make a difference. Thank you for the time, Mr Dowd.