Ehlers-Danlos Syndrome and Craniocervical Instability

(Limited Text - Ministerial Extracts only)

Thursday 26th March 2026 Westminster Hall

[The Parliamentary Under-Secretary of State for Health and Social Care (Mrs Sharon Hodgson)]

It is a pleasure to serve under your chairmanship, Ms Furniss. I thank my hon. Friend the Member for Cannock Chase (Josh Newbury) for securing this very important debate and for his excellent opening speech, in which he took great care to set the scene for us. I appreciate that.

My hon. Friend has been instrumental in bringing national attention to the challenges faced by people living with Ehlers-Danlos syndrome and craniocervical instability. Last year my predecessor in my role, my hon. Friend the Member for West Lancashire (Ashley Dalton), met him and his constituent, Connor Edwards, who has suffered greatly, as we have heard, from the impact of these devastating conditions. Connor has faced immense physical and emotional hardship as he has tried to navigate symptoms linked to EDS and CCI, enduring pain, uncertainty and long waits for answers, as we have heard. His experience reflects what too many patients and families have told us: that the system can feel fragmented, that they are often left to join up their own care, and that the lack of clear pathways can add to an already overwhelming burden. I want to assure Connor and others in his position that their voices have been heard.

[Dr Neil Hudson (Epping Forest) (Con)]

I thank the hon. Member for Cannock Chase (Josh Newbury) for securing this important debate. I apologise, Ms Furniss, that I was not in the Chamber for the beginning of it; my shadow ministerial role in relation to the Department for Environment, Food and Rural Affairs meant that I had to be in the main Chamber at the start of this debate.

Will the Minister join me in paying tribute to patients with Ehlers-Danlos syndrome and craniocervical instability—including my constituent in Epping Forest, Natasha Little—for their bravery and their advocacy in calling for the Government and the NHS to recognise the needs of people with these conditions, in terms of diagnosis, treatment and long-term support? Hopefully, this debate can be a catalyst for change.

[Mrs Hodgson]

I thank the hon. Gentleman on behalf of his constituent, Natasha, and I will make sure that I include her name later when I come on to name everyone referred to during the debate. I also thank him for managing to juggle and spin all the plates that we have to deal with as Members by making time to come along to this debate.

I also thank all the other hon. Members who managed to make it to this very important debate. We heard contributions from my hon. Friends the Members for Hitchin (Alistair Strathern), for Glasgow West (Patricia Ferguson), for West Dunbartonshire (Douglas McAllister), and for Stratford and Bow (Uma Kumaran); from my right hon. Friend the Member for Hayes and Harlington (John McDonnell); from my hon. Friend the Member for Truro and Falmouth (Jayne Kirkham); from the hon. Members for Strangford (Jim Shannon) and for Ashfield (Lee Anderson); from my hon. Friend the Member for Blaydon and Consett (Liz Twist); from the hon. Member for Tiverton and Minehead (Rachel Gilmour); from my hon. Friend the Member for Bury St Edmunds and Stowmarket (Peter Prinsley); from the hon. Members for Winchester (Dr Chambers) and for Epping Forest (Dr Hudson); and from the spokesperson for the Conservatives, the hon. Member for Fylde (Mr Snowden).

I also thank the hon. Member for Fylde for sharing his learnings from the experience of his sister, Kimberley, on her journey in treatment for epilepsy. As he explained, epilepsy is a well-known condition, especially in comparison with the conditions that we are discussing today. That was a very strong point, which I thank him for making.

I will not repeat the detailed clinical descriptions of Ehlers-Danlos syndrome and craniocervical instability that other hon. Members have already set out very clearly, but I do want to recognise the real and often profound challenges that people living with these conditions, and their families, face every day. I want those individuals to know that I hear them, and that I recognise the challenges they face and the uncertainty and distress that many describe. Their experiences will shape the Department’s ongoing work as we consider how services can better meet the needs of people living with these complex conditions.

NHS England continues to strengthen clinically led pathways for people with hypermobility-related disorders, with an emphasis on non-surgical management, co-ordinated physiotherapy, and pain management and rehabilitation, as is consistent with the best available evidence.

In response to the question from the hon. Member for Strangford about the number of people affected by these conditions, the Getting It Right First Time programme is supporting more consistent assessment and management of complex joint and spine conditions, and assessment of the number of people affected, helping to reduce the unwarranted variation in treatment that particularly affects people with EDS. The programme has a strong emphasis on robust, evidence-based and personalised pathways. Through RightCare, integrated care systems are supported to commission evidence-based pathways for long-term and complex conditions, including improved access to community-based musculoskeletal care, which many people with EDS rely upon.

My hon. Friend the Member for Blaydon and Consett mentioned some numbers in her contribution, quoting a ratio of one in 250 and saying that between 1% and 4% of the population are affected. I would imagine that those are the ballpark figures, but the Getting It Right First Time and RightCare programmes, which I have just mentioned, will look into that in more detail.

How can we facilitate better care and support? We need better clinical education, clearer referral routes and a stronger emphasis on shared decision making. We also need to recognise the burden of chronic pain and fatigue that comes with these conditions, and ensure that people can access appropriate services, even when a definitive single diagnosis may still be evolving. Where the evidence is established, the NHS should provide timely, appropriate care. Where evidence is uncertain, we have a responsibility to be transparent about what is known, what is not known and what options are supported by clinical consensus.

Patient safety must always be paramount, and decisions about invasive treatments must be made within appropriate specialist teams, with robust clinical governance, multidisciplinary review and clear plans to follow up. EDS illustrates why integrated care matters. Pathways must connect primary care, community therapy services and specialist support so that patients do not have to tell their story over and over again, or navigate multiple disconnected services.

Stronger evidence is also imperative. The Government support health research through the National Institute for Health and Care Research, and we want to see well-designed studies that can inform future guidance and reduce unwarranted variation.

[Josh Newbury]

One thing that we have come across consistently is that a huge amount of research has been done internationally and, as many hon. Members have outlined, constituents are funding themselves to go abroad for treatment and surgery. As part of that work with the NIHR, would the Minister be willing to look at international best practice in this area, so that we can draw on the experiences of many other countries as they work out how best to treat this group of patients?

[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.

[Josh Newbury]

I thank the Minister for her words, but I would add one point to her list, if I may, which is aftercare for people who have travelled abroad to have surgery. I understand that that is a tricky issue for the NHS, but we have heard consistently from several hon. Members today that their constituents have been rejected for any meaningful aftercare once they have come home, despite having a clear clinical need for it. Could she add that to her list to take back her officials?

[Mrs Hodgson]

I will commit to looking into that for my hon. Friend. Obviously, aftercare for surgery abroad is tricky—not for conditions such as this, but often for beauty related purposes—but I will take that on board and take it back to the Department.

[Jim Shannon]

I apologise if I missed the answer, but I asked about research and how we can create partnerships with universities, which are very keen to do that—Queen’s University Belfast is one example, but there are many others across the United Kingdom—and with medical companies that want to pursue cures, as we all want to see them do. The Minister may not have an answer today, but I would be very happy if she would come back to me, and to all of us, to show that we are pursuing that research opportunity to find the cure and help people if we can.

[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.