Ehlers-Danlos Syndrome and Craniocervical Instability

Jayne Kirkham Excerpts

Thursday 26th March 2026 Westminster Hall

[Jayne Kirkham (Truro and Falmouth) (Lab/Co-op)]

It is a pleasure to serve with you in the Chair, Ms Furniss. I thank my hon. Friend the Member for Cannock Chase (Josh Newbury) for securing this debate, which I have been asked by a number of constituents to attend. I would like to talk specifically about what it is like to live with Ehlers-Danlos syndrome in Cornwall, a rural and coastal area with the sea on three sides and only one acute hospital, which is in my constituency.

One constituent described moving from Kent to Cornwall a few years ago and finding that the services for patients with EDS in Cornwall were “virtually non-existent”. They were initially able to access care at the dysautonomia clinic in Derriford in Devon, but that has since closed with no successor. That has meant that my constituent has spent nearly £1,000 since December on appointments and travel to see private consultants. Many constituents told me that physiotherapy has helped them, but they have experienced long waits and found that there is a shortage of professionals experienced in the condition in the duchy. One told me that because of the lack of occupational therapists in Cornwall, he can have an OT appointment only every six months. Another said that they simply could not get treatment by a physio equipped to deal with EDS.

That lack of service leads patients in Cornwall to rely on their GPs, who may have patchy knowledge of the condition and are not necessarily equipped to deal with such complex issues. The lack of provision for EDS patients in Cornwall has even led some to move or consider moving up-country.

Our peripherality does not help with diagnosis times either, which is the second thing I want to touch on. Many constituents have written to me describing years of misdiagnosis and missed opportunities. One woman waited 10 years from the start of her symptoms and was finally diagnosed in London. A constituent with CCI was diagnosed by surgeons as far away as Spain and New York. A third constituent was diagnosed at 48 after many years of unexplained symptoms. Echoing what we heard from my hon. Friend the Member for Cannock Chase, she said:

“Over the years it took to get my diagnosis I felt that I was viewed as a hypochondriac or overanxious patient. The combination of multiple GP visits and not being believed had a…detrimental effect on my wellbeing and mental health. Even after diagnosis I continue to be frustrated by trying to engage with a…system that doesn’t work for people with this condition”.

A key issue highlighted was disjointed care. As EDS is a multi-system condition, every time a new body system develops an issue, the patient needs a new referral. As there is no care pathway for EDS and patients generally do not have access to a specialist, who could consider their symptoms as a whole and provide a joined-up treatment plan, that means multiple referrals, extra appointments, more travelling and more time off work—and therefore, more patients seeking private care.

My constituent Carley, who has EDS and CCI, had to fundraise and take out loans for her private surgery to relieve the pressure in her brain that was forcing the back of her cerebellum to herniate down into her spinal canal. She had been experiencing severe and progressive neurological symptoms, but was unable to access appropriate assessment and treatment through current NHS pathways. In her words:

“I developed intense pain in my head and neck that would make me physically sick, trouble standing, walking, swallowing, breathing, I was losing my vision. I was choking on food…as it was getting stuck in my throat due to my swallow reflex being affected. When I tried to lay down my skull would slide backward, and I would stop breathing. It was terrifying. I was getting intermittent body paralysis and many more equally terrifying symptoms. My bladder and bowels were not working properly & in most cases this condition then leads on to seizures. Nobody knew what it was or how to help me.”

I want to show a picture of the operation Carley had to secure her spine, because it is so shocking.

It would help all of my constituents considerably if the Department looked at developing a clear, accessible and appropriate pathway for patients. Does the Minister accept that patients with EDS and suspected CCI are in reality unable to access appropriate assessment or treatment through current NHS pathways? Will the Department commit to developing a clear, accessible and clinically appropriate pathway for those patients?

--- Later in debate ---

[Mrs Hodgson]

I am happy to recommend that international best practice is looked at, and I will take that on board. I will also come to the suggestion from my hon. Friend the Member for Blaydon and Consett about the international best practice that we can learn from in Wales.

Guidance matters too, and clinical guidelines and service specifications help reduce variation and improve quality. My hon. Friend the Member for Blaydon and Consett asked about NICE guidance. Where NICE guidance exists, the NHS is expected to take it into account, and where it does not, we should consider what other guidance can support clinicians and patients in the interim. I commit to asking the NICE prioritisation board, chaired by its chief medical officer, if it will look at the Wales pathways that she suggested when it considers updating NICE guidance.

My hon. Friend also asked about multidisciplinary teams. NHS England, along with the neurosurgery and spinal surgery clinical reference group, has not currently identified a need for an MDT. NHS England has established clinical networks for spinal surgery and neurosurgery, and we expect those networks to work closely to ensure that both cranial and spinal pathways are optimised.

I was also asked about a pathway by my hon. Friend the Member for Truro and Falmouth. There is currently no separate national diagnostic or treatment pathway for CCI because it is not recognised as a distinct NHS diagnosis, and there is no agreed national definition, validated imaging criteria or robust evidence base to support creating one. However, the Department recognises the concerns that patients have raised, and we are working with NHS England, clinical networks and patients’ organisations to improve pathway consistency by strengthening the existing framework, so we will look further into that.

[Jayne Kirkham]

I understand that the Department will be looking at it further, but will it be looking at it further with the intention to create a pathway for CCI?

[Mrs Hodgson]

Yes, I would imagine that if the Department looks at it and it is deemed necessary, that is what will happen. I am sure that my hon. Friend can follow up on that as time progresses.

I will cover the last couple of questions from hon. Members. My hon. Friend the Member for Truro and Falmouth, the hon. Member for Ashfield and my hon. Friend the Member for Stratford and Bow made points about access to care and ensuring that people do not fall through the cracks. EDS and CCI often require input from rheumatology, neurology, pain services, physiotherapy, genetics and primary care, and the 10-year health plan’s emphasis on integrated multidisciplinary care models will help to join up those pathways for the first time. That will reduce repeat referrals and conflicting advice, and patients feeling that they must be the ones to join up the system. We will hopefully see progress on that through the 10-year plan.

The hon. Member for Ashfield also asked about wheelchair services. In England, they are commissioned locally by ICBs and eligibility is determined by functional need, lifestyle and clinical assessment, not by whether a patient has a specific condition such as EDS or CCI. NHS England has developed a model service specification for wheelchair and posture services that sets clear expectations for timely assessment, appropriate prescribing and user-centred provision. That specification enables commissioners to organise consistent, high-quality services that meet individual mobility needs, including those arising from complex conditions such as EDS and CCI, so I was keen to give the hon. Member an answer to that particular question.

The 10-year health plan sets a clear direction for improving outcomes for people with EDS and those experiencing symptoms associated with CCI. The plan prioritises earlier diagnosis, better co-ordinated care and stronger multidisciplinary working across primary, community and specialist services, which are key issues consistently raised by patients and families. It promotes integrated, personalised support closer to home, reducing the burden of navigating multiple services. The plan also expands the use of digital tools, remote monitoring and personalised care planning to help people manage complex, fluctuating symptoms more effectively. Importantly, it commits to strengthening research, clinical education and system-wide awareness of overlapping, multi-system conditions, helping to ensure that people with EDS and CCI receive more consistent, compassionate and joined-up care.

Let me clear about what I can commit to as the Minister today. I will ensure that the concerns that have been raised are shared with NHS England to help identify where guidance, pathways, referral routes or clinical advice could be clearer and where good practice is already emerging internationally—as well as in Wales—that could be spread more consistently. Meaningful engagement with those directly affected must sit at the heart of our approach. Departmental officials are already in discussions with patient groups, and that ongoing engagement will be invaluable in shaping our understanding and ensuring that future policy is grounded in the reality of patients’ lives.

We will be asking the NIHR to consider how best to encourage further quality research in this area. It is already expanding its work on conditions with overlapping symptom profiles, including myalgic encephalomyelitis and chronic fatigue syndrome, and post-viral syndromes, and we want to ensure that future research programmes recognise the clear need for better evidence on diagnosis, management and outcomes for people with EDS and suspected CCI. I commit to continuing to press for a culture that is compassionate and evidence-based—one that listens to patients, avoids dismissal and false certainty, and supports shared decision-making.