Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders

Sarah Dyke Excerpts

Wednesday 22nd May 2024 Westminster Hall

[Andrew Selous]

I am grateful to my hon. Friend, because it is these individual stories that really make the case. My hon. Friend’s constituents had to wait 30 years: that is a very long time indeed.

[Sarah Dyke (Somerton and Frome) (LD)]

A constituent of mine suffers from EDS. They make frequent trips to hospital, but every time they go they see a different consultant, who quite often treats the immediate medical emergency rather than taking a holistic approach and view of their condition. Does the hon. Member agree that people with EDS should be given a single point of contact—somebody who can review their condition as a whole, rather than just treating the individual symptom when it occurs?

[Andrew Selous]

The hon. Lady makes a sensible point. The four requests that Ehlers-Danlos Support UK wants me to put to the Minister are as follows. The first is a pathway for NHS diagnosis and care for hypermobile Ehlers-Danlos syndrome and hypermobility spectrum disorders in England. Secondly, it wants National Institute for Health and Care Excellence guidelines for Ehlers-Danlos syndrome and hypermobility spectrum disorders. Thirdly, it wants a properly co-ordinated, multidisciplinary approach to diagnosis and care for people with these conditions and their associated comorbidities. Fourthly, it wants support and training for healthcare professionals to deliver this. Those are all reasonable and sensible demands.

To give more background about the condition and the work being done to bring about change, I will say a bit more about the symptoms, as many people are not aware of EDS. Whatever knowledge people have, it is undeniable that there is a widespread lack of awareness, and that is part of the challenge that people living with EDS face in accessing care and in dealing with their condition. Twelve types of EDS are rare and can be genetically tested, but—this is a really important point—there is no test for the most common type of EDS. That has led to multiple reports of people being disbelieved by healthcare professionals and by assessors for personal independence payments. In fact, recent research suggests that those with the condition can wait for up to 20 years for a diagnosis. My hon. Friend the Member for Mid Derbyshire (Mrs Latham) has just told us of her constituent who waited 30 years.

I am grateful to Danielle Humphreys, who researches in this area. She told me that quite a common response from doctors can be “Let me just check Google about this, as I’m not aware of the illness you are talking to me about,” or “Can you spell that?” I have some sympathy for doctors. Two of my children are junior doctors. They have a lot to learn in five or six years in medical school. They cannot know everything, but this is just not good enough. For each of us, the condition affects 500 or more of our constituents, so things need to change. I am pleased to put that on the record.