Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders

John McDonnell Excerpts

Wednesday 22nd May 2024 Westminster Hall

[The Minister for Health and Secondary Care (Andrew Stephenson)]

It is a pleasure to serve under your chairmanship, Mr Dowd. I congratulate my hon. Friend the Member for South West Bedfordshire (Andrew Selous) on securing this debate on such an important issue, underlined by the sheer number of MPs who have attended this 30-minute debate today. He is a tireless campaigner for people living with Ehlers-Danlos. He was right to bring some of them to the House back in November, and he was right to bring campaigners again today to sit in the Gallery to ensure that their voices are heard. I also pay tribute to my hon. Friend the Member for Watford (Dean Russell), who spoke from the heart about his wife’s personal experience.

May is awareness month for EDS, and I thank the outstanding charities that do so much to support people living with the condition all year round, especially Ehlers-Danlos Support UK. My hon. Friend said that many people may not have heard of the condition. As Minister for Health and during my constituency work, I come across many people living with debilitating diseases, but it was difficult for me to read some of the stories collected by Ehlers-Danlos Support UK that are collated on its website. Multiple stories show what can be achieved when the correct support is provided, such as the story of Ellie Ovens, who began using a wheelchair in 2018 but returned to France two years later to ski again. That underlines what the hon. Member for Blaydon (Liz Twist) said about how the conditions affect different people in very different ways.

As has been said, although there is no cure for EDS or HSD, treatment can help an individual to manage their symptoms and prevent the condition from worsening. Early diagnosis is key to ensuring that patients are offered the most appropriate treatments and are supported to make lifestyle changes to improve their outcomes. NHS England commissions a national diagnostic service for certain rare types of EDS that can be diagnosed using a genetic test. We do not yet have a genetic test for every type of EDS or HSD, but as the Minister for life sciences I am hopeful about what the future may bring—a point made powerfully by my hon. Friend the Member for North East Bedfordshire (Richard Fuller).

[John McDonnell (Hayes and Harlington) (Lab)]

I thank the Minister for giving way; I know that he has limited time. May I add to the four requests that were made by the hon. Member for South West Bedfordshire (Andrew Selous)? With other conditions for which the Government have appointed an individual MP as the champion, we have seen some remarkable results because of that focus. Will the Government look at appointing a particular champion? I think we have seen the person who is in line today.

[Andrew Stephenson]

That is certainly the kind of thing we would want to consider, among a whole range of things.

In the limited time available, I will try to respond to the specific points made by my hon. Friend the Member for South West Bedfordshire. At the moment, diagnosis for these conditions is based on signs and symptoms, usually by a GP. As my hon. Friend knows, NHS England recommends care for patients with non-inflammatory but painful conditions, and that should be provided in primary and community care settings. That brings care closer to home for those patients, in line with our ambition to get every patient the right care in the right place.