Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders

Richard Fuller Excerpts

Wednesday 22nd May 2024 Westminster Hall

[Andrew Selous]

I agree with the hon. Lady, and I have experience of assisting constituents through the PIP process, which is tortuous for those with EDS so I am very grateful to her for putting that important point on the record.

The 13th type of EDS is not rare and cannot be tested for, which is really significant. Recent studies have shown that the diagnosed prevalence of the most common type can be as high as one in 227 people, although most are not diagnosed. Those with the most common type are twice as likely to use hospital services, and there is evidence that the cost of secondary care for them is an additional 29%. This places a significant burden on the NHS, so if we understood and could diagnose it earlier, we could take some of the strain off hospitals. That is another important reason why we must make progress.

[Richard Fuller (North East Bedfordshire) (Con)]

I thank my hon. Friend for giving voice in Parliament to those suffering from this disease. We have heard from a number of fellow MPs about their constituents. A constituent has contacted me to say that she, her mother and her children all suffer from this condition. She is so grateful that Parliament is finally taking some notice of it, and a daughter of a very close friend of mine is also affected.

The fact that this condition is not diagnosed early leaves parents scared—petrified about what is happening to their loved one and not knowing what the answer is. Does my hon. Friend agree, and perhaps the Minister will also talk about this, that progress in analysing health service data about certain conditions—so-called big data and AI—could play a role in assisting doctors? As my hon. Friend has said, doctors cannot learn everything during their training, so maybe technology can provide them with some assistance.

[Andrew Selous]

I am not surprised that my hon. Friend and county neighbour makes such an astute point. He is absolutely right about the power of technology to help the NHS get this right, and I am grateful to him for putting that on the record.

Ehlers-Danlos Support UK, a wonderful charity that we are so lucky to have, called on the Government last year to provide urgently needed NHS services for those with the most common type of EDS and HSD. Its petition secured 28,700 signatures in England, although I have to say that it was disappointed by the response from the Government:

“There are no plans for a national service for diagnosis or treatment of hEDS and HSD. Our plans for musculoskeletal conditions will be outlined in the major conditions strategy.”

The draft strategy stated that people will be supported in primary care and that

“GPs and expert physiotherapists…are being empowered to identify and diagnose hEDS and HSD through the use of validated approved clinical guidelines and toolkits.”

When the Minister responds, perhaps he will tell us a bit more about what “empowered” means in this context. The only toolkit for diagnosing and managing hypermobile EDS is the one created by Ehlers-Danlos Support UK. There are no validated and approved clinical guidelines or genetic tests to use to diagnose, and in the past EDS UK has always been told that physiotherapists cannot diagnose EDS or HSD.

We need to do better. We need a proper multidisciplinary approach to diagnosing and managing hEDS and HSD, for two reasons. First, hEDS is a common type of EDS —it is the most prevalent—and is therefore not covered by the rare diseases action plan. Secondly, it does not fit solely into the category of musculoskeletal conditions and accordingly will not be covered by the major conditions strategy.

Like virtually all hon. Members in the Chamber, I am grateful to my constituents, one of whom, Alex Akitici, is here with us this afternoon. She has been to see me a number of times, and when she came to my constituency advice surgery in January, I could tell that something was not right. The colour of her face was giving me cause for concern, and when she got up at the end of the meeting, she collapsed flat on the floor and fainted in front of me. That was just a small example of what this group of people, whom we are all here this afternoon trying to help, have to deal with.

This is not just a musculoskeletal condition, because musculoskeletal conditions do not necessarily cause people to faint, but that is what happened to my constituent Alex. She has had to pay privately for a diagnosis—not everyone can afford to do that—and for her treatment and care. She and her husband have had to spend money adapting their home to make it safe as her collapses are frequent and unanticipated, as I witnessed. She lives in constant pain and has had an issue with personal independence payments, which were raised by the hon. Member for Blaydon (Liz Twist).

My constituent’s experience is common. Many people with EDS are also fighting to stay in work, but due to delays in diagnosis and a lack of appropriate care, they end up in a position where they can no longer stay in work.

I want to mention some people with EDS who are constituents of MPs who cannot be here today. As Under-Secretary of State for Culture, Media and Sport, my right hon. Friend the Member for Pudsey (Stuart Andrew) is not allowed to speak in this debate, but he contacted me ahead of it to tell me about his constituent Fran Heley, who has a connective tissue disorder. She has had to spend thousands of pounds on private healthcare, and she walked from Leeds to Parliament to draw attention to the condition. She has also undertaken a coast-to-coast walk across the north to raise awareness of the condition. What a brave campaigning lady! I thank her.

My right hon. Friend the Member for Calder Valley (Craig Whittaker) asked me to give a shout-out to his constituent Karen Huntley from Healthwatch Calderdale and Huddersfield, who works tirelessly to highlight the need for a Government strategy. I thank Karen Huntley for what she does.

The hon. Member for North Shropshire (Helen Morgan) contacted me before the debate with details of her constituent who has just had a battle royal to deal with her condition and get appropriate care and recognition for it. And one of my constituents contacted me earlier this week and said:

“Both my daughters and grandson have the condition”,

but they did not realise until the older daughter was “quite old”. Other hon. Members have made exactly that point. So we can see that the condition is widespread across the UK and that the same issues come up time and again.

I want to draw the Minister’s attention to what is happening across the United Kingdom. In Wales, Members of the Senedd have resolved as follows:

“The National Clinical Lead for Musculoskeletal Conditions is working with EDS UK and Community Health Pathways to develop a nationally agreed pathway for hypermobility in children and adults. This will support healthcare professionals to have informed conversations with patients and to provide access to the right specialist teams.”

That is a major step forward. If it is good enough for the Welsh, it is good enough for the English.

I am told that in the Scottish Parliament there will be a roundtable debate at the end of this month, which, by the way, is Ehlers-Danlos Syndromes Awareness Month. In Scotland, they want to try to understand how they can improve diagnosis and care there. A recent study launched in Holyrood included a recommendation to develop a pathway and NICE guidelines—a request I made to the Minister earlier—with lived experience as evidence of the need.

I hope that the Minister will reassure us that he and his officials are looking around the world at best practice, the best research and the best care. I stumbled across the Ehlers-Danlos Society of the United States of America today. Lots of clinicians involved in that do a lot on research. I hope that we are up on what is happening globally, so that we do not miss out here. Departments needs to look internationally to get best practice in the United Kingdom.

On Ehlers-Danlos support, I mentioned the four points: the pathway for diagnosis; NICE guidelines; a co-ordinated multidisciplinary approach; and support and training for healthcare professionals. I ask the Minister to really push for that in the Department. I know that he is a good man and that he has to get that through NHS England, but, frankly, the time really has come to make progress. I would like a meeting, if possible, with him and Ehlers-Danlos Support UK, which does so much in this space, so that we can take the matter forward.

I am grateful to colleagues who have attended the debate. With your permission, Mr Dowd, I am happy for my hon. Friend the Member for Watford (Dean Russell) to speak briefly.