Ehlers-Danlos Syndrome and Craniocervical Instability

Jim Shannon Excerpts

Thursday 26th March 2026 Westminster Hall

[Jim Shannon (Strangford) (DUP)]

It is a pleasure to serve under your chairship, Ms Furniss. I thank the hon. Member for Cannock Chase (Josh Newbury) for leading the debate. In the short time that he has been in Parliament, he has made a name for himself as an assiduous MP who works hard on behalf of his constituents. They should all be very proud of what he does for them. We welcome his speech today, and I wish him well in what he does.

I am also keen to speak in this debate due to my role as the Democratic Unionist party’s health spokesperson. Through that role, I always fight for more funding for the study and research of rare diseases. I have always had an interest in rare diseases, going back to my time in the Assembly—I was an Assembly Member for 12 years—and during all my years here as a Member of Parliament since 2010. There are some ladies in my constituency who have a deep interest in rare diseases. I had discussions with one family in particular just last week.

In Northern Ireland, conditions like Ehlers-Danlos syndrome and related issues, such as craniocervical instability, sit within a wider set of challenges around rare diseases, diagnosis and access to specialist care. The figures for Northern Ireland are limited and, unfortunately, Northern Ireland does not publish detailed prevalence data for EDS or CCI. Those conditions are often underdiagnosed and not consistently coded in health data systems. We have a lot to do in relation to data. Data is one of the things that always comes up when we talk about diseases, especially rare ones, because we need the data to know what the problems are and how to deal with them.

The Minister is certainly earning her money this week—I think this is her third or fourth debate in Westminster Hall. We are privileged to see her in her place, and I look forward to her contribution. She has a good heart, which she expresses through her responses to our questions.

It is estimated that one in 5,000 people have EDS. That suggests that 10,000 to 15,000 people are officially diagnosed, but that is an underestimate. My first question to the Minister is: do we have a better idea of the numbers in relation to EDS, and, if we do not, how can we get them? Furthermore, some 80% to 90% of diagnosed patients are female, as women are more likely to be diagnosed and more likely to present with chronic pain and joint issues. The hon. Members for Cannock Chase and for Truro and Falmouth (Jayne Kirkham) illustrated that with examples from their own constituencies.

One of the most prevalent issues is diagnostic times, because it takes five to 10 years to be diagnosed. Many people will see multiple specialists and they can also initially be misdiagnosed. For example, they might be told that they have fibromyalgia, anxiety or joint hypermobility. Specialist care is important for conditions such as EDS, especially regarding rheumatology, neurology and pain management, for which waiting lists are already extensive. Delayed recognition and treatment of physical symptoms can significantly affect mental wellbeing—the impact on people’s mental wellbeing as their bodies deteriorate cannot be ignored.

Prolonged uncertainty, unmanaged pain and reduced quality of life often contribute to anxiety, depression and wider psychological distress. More must be done to ensure that we do not allow it to get to that stage, and investigations should be carried out in a timely fashion. I ask the Minister, in relation to doctors and their diagnoses, does something need to be done with our GPs, our A&Es, our surgeons and those people who patients interact with first?

This debate highlights the urgent need to do more for those living with complex and often overlooked conditions. Too many patients face long delays, inconsistent pathways and a lack of specialist support. We owe it to patients to ensure that their symptoms are taken seriously, their diagnoses are not delayed and their care is not determined by their postcode. By investing in better data, stronger specialist services and greater awareness, we can move towards a system that delivers timely, fair and effective healthcare for all.

I have one more question for the Minister: she knows that research is incredibly important—it seems to have popped up in every debate that there has been this week. What is being done, through universities and partnerships with medical companies, to ensure that we chase up that cure for EDS and ensure that any patient, wherever they are in the United Kingdom of Great Britain and Northern Ireland, have the care and treatment they want, and have it now?

--- Later in debate ---

[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.