Ehlers-Danlos Syndrome and Craniocervical Instability

Gill Furniss Excerpts

Thursday 26th March 2026 Westminster Hall

[Several hon. Members rose—]

[Gill Furniss (in the Chair)]

Order. I remind Members that they should bob if they wish to be called in the debate. We are hoping to give everyone five minutes, but we will see how we go.

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[Uma Kumaran (Stratford and Bow) (Lab)]

It is a pleasure to serve under your chairship, Ms Furniss. I thank my hon. Friend the Member for Cannock Chase (Josh Newbury) for setting out so powerfully why this debate is needed. I pay particular tribute to his point that the last time we had this debate, an early election was called soon afterwards. I also take this opportunity to welcome the Minister to her place. It is fitting that she is in the role, and I know she will bring her unparalleled empathy and care to it.

I am here on behalf of my constituent Rebekah and all those residents of Stratford and Bow who wrote to me to show their support for those affected by Ehlers-Danlos syndromes. As my hon. Friend the Member for Cannock Chase said, EDSs are complex genetic tissue disorders that are lifelong, incurable and chronically under-recognised. So-called rare diseases such as EDSs are in fact common in the UK: one in 17 of us will be affected by a rare condition at some point in our lifetimes. I would like to pay tribute to my mother’s sister, Chandra Ratharanjithan, who passed away last night due to a rare cancer. She fought it with grace and dignity.

Even when people access diagnosis, they do not always get the right care. For those with EDSs, these lifelong conditions will have a different impact over time. Symptoms change and develop, and we need to do more to ensure that those with chronic complex conditions are able to get the right care—responsive, joined-up care that is accessible to them and near their homes.

I am pleased to say that such work is already happening in Stratford and Bow. North-east London has one of the fastest-growing populations in the country. Although funding is not keeping pace with that change, east London is still taking innovative approaches to ensure that we can support patients with the complexities of lifelong conditions. Hospitals and research institutions in our part of the world are developing neighbourhood-based multidisciplinary teams that can be more proactive and that are more integrated in primary care. That is alongside local hospitals focusing on proactive community outreach for those with complex conditions. I extend an invitation to the Minister to come and see that fantastic work in person.

There is so much more to do to ensure that such care reaches every person in the United Kingdom who needs it, with a shift to a system of prevention, early diagnosis and swifter treatment. Those are all essential to make sure our health system finally delivers for not only those living with EDSs but everyone living with chronic or lifelong conditions.

I hope the Minister will set out how the Government’s 10-year health plan will support improved access to the kind of joined-up multidisciplinary care that is so beneficial to those with multi-system conditions and symptoms. For Rebekah and everyone else affected by EDSs, these powerful conditions can impact every single aspect of their lives. They also impact not only the person living with the condition but their families and all those who love them. We owe it to them to deliver change in this Parliament.

[Gill Furniss (in the Chair)]

We are doing quite well for time, but we need to finish Back-Bench speeches by 2.28 pm so that we can—as I am sure we want to—get the winding-up speeches and the Minister in.

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[Mrs Hodgson]

I did touch on research, but I did not specifically mention universities. I am pleased that the hon. Member got in another plug for the wonderful Queen’s University Belfast—he did that when we were in this Chamber the other day—and I will take his point on board. I thank him for that.

In closing, I return to the people at the heart of this debate: those living with EDS and CCI. Connor, Jo, Rebekah, Carley, Hannah, Stevie and Natasha have been named by their MPs today. They and their testimonies, as we have heard, are just examples of the many more people across the UK and Northern Ireland suffering from these terrible conditions. They are not asking for miracles; they are asking for clarity, consistency, safe care and to be treated with respect. They are asking for a system that joins up around them, rather than leaving them to piece it together alone. That is a reasonable ask, and one that we should meet.

Again, I thank my hon. Friend the Member for Cannock Chase for securing this very important debate. I look forward to working with NHS partners, clinicians and patient groups to ensure that people living with these complex conditions receive the timely, safe and compassionate support and care that they deserve.

[Gill Furniss (in the Chair)]

I call Josh Newbury, with two minutes to wind up.