Ehlers-Danlos Syndrome and Craniocervical Instability

Debate between Jayne Kirkham and Sharon Hodgson

Thursday 26th March 2026 Westminster Hall

[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.