Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders

Andrew Stephenson Excerpts

Wednesday 22nd May 2024 Westminster Hall

[The Minister for Health and Secondary Care (Andrew Stephenson)]

It is a pleasure to serve under your chairmanship, Mr Dowd. I congratulate my hon. Friend the Member for South West Bedfordshire (Andrew Selous) on securing this debate on such an important issue, underlined by the sheer number of MPs who have attended this 30-minute debate today. He is a tireless campaigner for people living with Ehlers-Danlos. He was right to bring some of them to the House back in November, and he was right to bring campaigners again today to sit in the Gallery to ensure that their voices are heard. I also pay tribute to my hon. Friend the Member for Watford (Dean Russell), who spoke from the heart about his wife’s personal experience.

May is awareness month for EDS, and I thank the outstanding charities that do so much to support people living with the condition all year round, especially Ehlers-Danlos Support UK. My hon. Friend said that many people may not have heard of the condition. As Minister for Health and during my constituency work, I come across many people living with debilitating diseases, but it was difficult for me to read some of the stories collected by Ehlers-Danlos Support UK that are collated on its website. Multiple stories show what can be achieved when the correct support is provided, such as the story of Ellie Ovens, who began using a wheelchair in 2018 but returned to France two years later to ski again. That underlines what the hon. Member for Blaydon (Liz Twist) said about how the conditions affect different people in very different ways.

As has been said, although there is no cure for EDS or HSD, treatment can help an individual to manage their symptoms and prevent the condition from worsening. Early diagnosis is key to ensuring that patients are offered the most appropriate treatments and are supported to make lifestyle changes to improve their outcomes. NHS England commissions a national diagnostic service for certain rare types of EDS that can be diagnosed using a genetic test. We do not yet have a genetic test for every type of EDS or HSD, but as the Minister for life sciences I am hopeful about what the future may bring—a point made powerfully by my hon. Friend the Member for North East Bedfordshire (Richard Fuller).

[John McDonnell (Hayes and Harlington) (Lab)]

I thank the Minister for giving way; I know that he has limited time. May I add to the four requests that were made by the hon. Member for South West Bedfordshire (Andrew Selous)? With other conditions for which the Government have appointed an individual MP as the champion, we have seen some remarkable results because of that focus. Will the Government look at appointing a particular champion? I think we have seen the person who is in line today.

[Andrew Stephenson]

That is certainly the kind of thing we would want to consider, among a whole range of things.

In the limited time available, I will try to respond to the specific points made by my hon. Friend the Member for South West Bedfordshire. At the moment, diagnosis for these conditions is based on signs and symptoms, usually by a GP. As my hon. Friend knows, NHS England recommends care for patients with non-inflammatory but painful conditions, and that should be provided in primary and community care settings. That brings care closer to home for those patients, in line with our ambition to get every patient the right care in the right place.

[Ashley Dalton (West Lancashire) (Lab)]

It is not only about being able to diagnose the condition. Constituents have got in touch with me who have been undiagnosed for more than 40 years. They say that the big issue is not necessarily the inability to get a diagnosis, but the complete lack of awareness among medical professionals, so it is not even considered as an option. Will the Minister commit to increasing awareness of this serious condition across medical services so that this can at least be considered?

[Andrew Stephenson]

The hon. Lady makes a powerful point.

When I was preparing for this debate, I looked at the last time that the issue was debated in Parliament. It was a very long time ago. I strongly pay tribute to my hon. Friend the Member for South West Bedfordshire for leading this debate. There have been others: the hon. Member for Huddersfield (Mr Sheerman), who is now in his place, raised this with me at health orals a few months back. There are parliamentarians who are pushing on this, but this is the first specific debate we have had in a while, so we all have a role to play in raising awareness. Again, I pay tribute to my hon. Friend the Member for South West Bedfordshire for securing today’s debate.

My hon. Friend made a strong case for a nationally commissioned diagnosis and treatment service. In preparation for the debate, I raised the matter with NHS England, which tells me that it does not yet feel that it has good evidence that secondary care services are more appropriate for patients with hypermobility and pain, and that if patients were placed on secondary care waiting lists, it would not necessarily be in their best interests. If clear evidence is brought together that a nationally commissioned service would benefit patients, I will be happy to forward those examples to NHS England and ensure that it looks carefully at them.

My hon. Friend also asked for a meeting between himself, campaigners and me. I am happy to commit to that. Perhaps we can talk through the evidence after that to see what the best way forward is. For now, NHS England takes the view that the majority of patients with EDS and HSD can be managed within the community.

As we know, in many cases diagnosis is challenging. In recent years, we have taken great strides in making diagnosis more effective, giving GPs and physiotherapists comprehensive toolkits developed by healthcare professionals for healthcare professionals. I thank the Royal College of General Practitioners for working hand in hand with Ehlers-Danlos Support UK to get that done.

EDS and HSD are complex, chronic conditions that are frequently associated with other comorbidities. Sufferers may require access to a range of specialists, depending on the person. Integrated care boards are responsible for many of the treatment services for patients with EDS and HSD. They have a statutory responsibility to commission services that meet the needs of people in their area and that are in line with national guidance, including guidance from the National Institute for Health and Care Excellence. As my hon. Friend the Member for South West Bedfordshire will accept, NICE is an independent body and it would be wrong for me or any other Minister to interfere in its decision making, but I know that it follows these proceedings carefully and will have heard what my hon. Friend said in the case he has made for EDS and HSD to be included in its guidelines.

My hon. Friend rightly says that people suffering with the condition should have a co-ordinated, multidisciplinary approach to diagnosis and care. That is why we are rolling out new primary care networks across the NHS in England, which are delivering more proactive, personalised and integrated care through access to multidisciplinary teams of GPs, physiotherapists, nurses, pharmacists, podiatrists, physician associates and psychiatrists. NHS England commissions some specialist services for patients with rarer forms of EDS, and a service for patients who have complex EDS is delivered by centres in Sheffield and London. The “Getting it right first time” national specialty report on rheumatology, published in September 2021, has made important recommendations for rheumatology units to work more closely with primary care and achieve the properly joined-up care that I think we all want to see.

As my hon. Friend notes, patients with the condition frequently have other comorbidities, and the Government are committed to giving every patient proper joined-up care centred around them. That is why we announced last year that we will publish a major conditions strategy. The strategy will outline our approach to tackling six groups of major health conditions that contribute to 60% of morbidity in the UK by creating a health and care system focused on prevention, and proactive and person-centred management of health conditions.

The strategy will focus on the challenges, and on the changes that are needed to make the most significant difference across the six groups of major conditions. However, many of the solutions identified will be applicable beyond just those six major conditions to diseases like EDS. Aligning work across several groups of conditions for the strategy will allow us to focus on where there are similarities in approach and ensure care is better centred around the patient.

I thank my hon. Friend for bringing the matter to my attention. I also thank him and other hon. Members for their insightful contributions today. My door will always be open to him to hear how we can improve the lives of people living with EDS across the country. As I committed to earlier in the debate, I am happy to meet him and other campaigners to see how we can deliver an NHS that is faster, simpler and fairer for all.

Question put and agreed to.

Resolved,

That this House has considered the Major Conditions Strategy and people with Ehlers-Danlos syndrome and hypermobility spectrum disorders.