Ehlers-Danlos Syndrome and Craniocervical Instability

Danny Chambers Excerpts

Thursday 26th March 2026 Westminster Hall

[Dr Danny Chambers (Winchester) (LD)]

It is an honour to serve under your chairship, Ms Furniss. I thank the hon. Member for Cannock Chase (Josh Newbury) for securing this important debate. Many people have to come watch in the Public Gallery, and I do not underestimate how much effort that will have taken some of them. We really do appreciate them being here today. We have heard from everyone the frustration of having a relatively rare disease with non-specific clinical signs, meaning that so many patients have been waiting years and years, in awful situations, even to get a diagnosis. What we are equally upset about is that once they have a diagnosis, the support is not available to ensure that they live the most fulfilled life possible or even, in many cases, get the most basic care that they require. On that note, I commend the hard work of EDS UK in supporting and providing training for clinicians and healthcare professionals and campaigning for standardised guidance, improved NHS services and clinical pathways to meet the needs of EDS patients.

The lack of national policy has left a postcode lottery for EDS patients across the country. This is another NHS area suffering the frustratingly long diagnostic delays and lack of joined-up, multidisciplinary care that we see for certain conditions. That means that people are battling with the unexplained symptoms and pain of EDS all through childhood, and that those patients have often been told repeatedly that their tests are normal and their symptoms must be psychosomatic. It means waiting decades for an overarching diagnosis for multiple complaints and being stuck in a system that incorrectly believes that EDS is a very rare condition rather than a realistic possibility. I was interested to hear my friend the hon. Member for Bury St Edmunds and Stowmarket (Peter Prinsley) acknowledge that he probably has treated patients with this disease, having not recognised it, which is something that we are all guilty of sometimes with rarer diseases.

Diagnosis is only the first step. Care is too often fragmented or non-existent, and patients struggle to get a GP appointment in the usual 8 am scramble. As a result of fragmented care, those with EDS are left to manage their own symptoms, unable to access a holistic and collaborative point of care. For many, a huge part of the burden of living with EDS comes from the lack of awareness of the condition. Unlike the situation for more visible disabilities, employers, schools and even friends and family are too often unaware of the debilitating and changing nature of this condition. Negotiating accommodations or seeking disability benefits for a condition that is little understood and largely invisible presents a huge challenge.

People with EDS and those around them need clear guidance on the nature of the condition. A constituent of mine in Winchester, Dr Emma Reinhold, worked as a GP in the local community, where she became increasingly aware of EDS, with its commonly associated conditions, and how they were overlooked. That led to her development of the EDS toolkit, written in conjunction with the Royal College of General Practitioners and funded by EDS UK. That toolkit is incredible and has been shared all over the world. I first heard about it when I was knocking on doors and she popped her head out of her upstairs window to say hello. We spoke about the toolkit for about 20 minutes—me on the street and her up in her bedroom. She had been a GP in Winchester for many years and then she became seriously unwell with EDS, which was why she was at home. That was at the age of just 42. Like so many others, she had to stop working; eventually, she had no option but to take ill health retirement, so the NHS lost another GP far too soon.

One patient who Dr Reinhold told me about—I think it was through that window conversation—was a woman who was in her 70s when she finally got the diagnosis that she had been looking for over many years to explain her symptoms. This is a genetic condition that she had had since birth, but it took 70 years to ensure that she got the answers that she deserved and appropriate support for her many symptoms.

Emma’s open access toolkit on EDS—for anyone who is interested, it is worth googling—ought to be promoted enthusiastically by the Government as a means of promoting greater awareness on the part of all medical professionals, as well as better understanding and sensitivity on the part of everyone, so that we can ensure that all those with EDS and other hidden disabilities remain welcomed and cared for in education, the workplace and their day-to-day lives. Dr Reinhold explains that we need a co-ordinated, holistic approach to multisystem conditions such as EDS, rather than the current disjointed care that facilitates diagnosis falling into gaps between specialists, who do not always have the collective training to spot connections between apparently unrelated symptoms.

Patients need national leadership, so we urge the Government to address the policy gap by working towards joined-up, multidisciplinary care across primary and secondary services, as well as supporting and promoting the existing training for staff, to ensure that those with EDS can access the care that they deserve. EDS and HSD must be integrated into NHS service specifications and long-term condition strategies as a matter of urgency.

The Liberal Democrats want everyone with a chronic illness, including EDS, to have a named GP. That would improve their quality of care and allow better join-up between the range of services that they can access. We must champion the work of the Overlapping Illness Alliance and EDS UK to raise awareness of these often hidden conditions so that those in need of support are able to access it.

Before the last general election, Ministers from the former Government offered to meet EDS UK, and then the election was called so the meeting never happened. Will the Minister commit to meeting EDS UK and patients, including Dr Reinhold, to better understand what would be helpful to improve their outcomes?