Ehlers-Danlos Syndrome and Craniocervical Instability

Lee Anderson Excerpts

Thursday 26th March 2026 Westminster Hall

[Lee Anderson (Ashfield) (Reform)]

It is a pleasure to serve under your chairship, Ms Furniss. Huge thanks go to the hon. Member for Cannock Chase (Josh Newbury) for securing this debate about Ehlers-Danlos syndrome, a condition I had never heard about until this Session of Parliament.

Just a few months ago, a young lady came to see me in Ashfield. Hannah is 17 years old and has the condition. She asked me to take part in this debate, so I am here to speak up on behalf of Hannah in Ashfield—she is, by the way, not the only person in Ashfield who has contacted me about this condition.

I asked Hannah to make a diary of her typical day, to see how her condition affects her. I know she will be watching this debate. These are her words, and I will read them out exactly as she has printed them:

“Every day I live with pain and joint instability in most areas of my body, especially my back, neck and legs. Painkillers don’t work for me, and I can’t get a physio referral as my whole body is affected and there isn’t a service for what I need as I am still classed as a child. Therefore, I get no support. 

I am fully dependent on others to get around as I can’t self-propel my wheelchair due to frequent shoulder dislocations and lack of grip. I am still waiting to be seen by wheelchair services and have been on the waiting list for 18 months. My chair was brought by my parents but is no longer fit for purpose. I am not eligible for an electric wheelchair as I am classed as an ambulatory user. So, at 17 years old I am reliant on others completely to get around.

Due to my chronic fatigue and POTS I have to pace myself. I cannot go to college as it is too much for me and therefore have to be home educated. Even with pacing I spend a lot of time in bed due to pain and exhaustion. I am probably up and about a few hours a day every other day.

I can’t do much for myself as I have tremors and spasms in my hands, face and legs. I can’t cook safely, I have been refused my provisional driving licence due to my double vision, and I can’t go out independently because I can’t walk far. 

Health services don’t understand EDS and I get dismissed a lot. I fall between the gap of children’s and adult services so get no support. This has an impact on my mental health and wellbeing as I feel overlooked and undervalued. Social care gives me 110 hours per year (2 hours per week) to spend on a support worker to go out, but the payment for this is £84 per month. So, the reality is that this gives me just over 1 hour a week if I was to pay someone the NMW. I am awaiting a review but there is a waiting list which I have been on for 6 months.

I just want to be more independent, in less pain and be able to socialise with my friends but this is impossible. I have a couple of very good friends, but they are busy with their lives doing things that I can’t do. I am very isolated with nothing to help me. My health is deteriorating all the time, and I worry for my future.”

Those are the words of Hannah from Ashfield. As we can see, her main concerns are a lack of wheelchair access, a lack of services and a lack of understanding. She is now on a waiting list for social care support, and she has been told that she will not be contacted until June 2026 to even start the process.

Unfortunately, over the past week, I have heard from a few other constituents; they also asked me to attend this debate, but I am here on behalf of Hannah. She has been let down by a system that we in this room control. We are responsible for that system; we are lawmakers and legislators. If we cannot alter the system to help people like Hannah, we should not be here. My one ask of the Minister today is to give hope to Hannah and the rest of the families in this country who suffer from this awful condition.