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Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders

Volume 750: debated on Wednesday 22 May 2024

Before I call Andrew Selous to move the motion, I will give a little clarity. As is the convention for a 30-minute debate, there will not be an opportunity for the Member in charge of the debate to wind up, but we have a spare 10 minutes and the previous debate finished a bit early, so there will be a little more flexibility—but do not abuse that. A couple of Members want to intervene or speak, so there is some flexibility, at the discretion of the Member in charge and the Minister, to bear that in mind.

I beg to move,

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

I am delighted to serve under your chairmanship, Mr Dowd. I am extremely grateful to colleagues across the House who have turned up to attend this important debate. We understand that anywhere between 135,000 and up to 300,000 people in the United Kingdom have Ehlers-Danlos syndrome. Those are only the diagnosed ones, and we think that that is the tip of the iceberg. If we take that higher number, in rough terms, that is about 460 per constituency for all of us—that is only those with a known diagnosis.

I am grateful to Dr Emma Reinhold, who is herself a GP no longer able to work because she has EDS. She sent me this quote by Professor Rodney Grahame, who is well respected in the field:

“No other condition in the history of modern medicine has been neglected in such a way as Ehlers-Danlos syndrome.”

Ehlers-Danlos syndrome is a group of 13 genetic disorders in which connective tissue is abnormal. That results in fragile and hyperextensible tissues throughout the body, which can lead to a range of very debilitating symptoms. The effect on the body is widespread and not limited to one body system, as connective tissue is everywhere in our bodies. It is a complicated condition and can come with many comorbidities, which can include pain, gut issues, nutrition, cardiovascular autonomic dysfunction, postural tachycardia syndrome, low blood pressure, mast cell issues, musculoskeletal issues, and head and neck issues. Special considerations for children and women’s health, and anaesthetic and surgical considerations are issues as well. EDS can lead to physical disability and reduced quality of life. Some rarer types can be life-limiting. Hypermobility spectrum disorders have similar symptoms to the most common type of EDS, and are treated in the same way.

I am very grateful to Ehlers-Danlos Support UK; I publicly acknowledge the support it has given me for this debate. It supports people across the United Kingdom who live with Ehlers-Danlos syndrome and hypermobility spectrum disorders. It is a wonderful charity and has been a big driver behind the debate. It wants us to come here and make a difference, and that is my plea to the Minister.

This is an important debate and many people, as my hon. Friend has said, do not know about Ehlers-Danlos syndrome or its diagnosis. Another complication, which he did not mention, is aortic dissection. People with Ehlers-Danlos syndrome can suffer from that and it can be deadly. One of my constituents has Ehlers-Danlos syndrome, but it took 30 years to diagnose. At one point, she was under 11 different consultant teams. Both her sons have the same symptoms, yet they cannot access diagnosis or service. Over those 30 years, there has been no improvement in our care. I hope that when the Minister responds, he will be able to give some hope to the people who suffer from this syndrome.

I am grateful to my hon. Friend, because it is these individual stories that really make the case. My hon. Friend’s constituents had to wait 30 years: that is a very long time indeed.

A constituent of mine suffers from EDS. They make frequent trips to hospital, but every time they go they see a different consultant, who quite often treats the immediate medical emergency rather than taking a holistic approach and view of their condition. Does the hon. Member agree that people with EDS should be given a single point of contact—somebody who can review their condition as a whole, rather than just treating the individual symptom when it occurs?

The hon. Lady makes a sensible point. The four requests that Ehlers-Danlos Support UK wants me to put to the Minister are as follows. The first is a pathway for NHS diagnosis and care for hypermobile Ehlers-Danlos syndrome and hypermobility spectrum disorders in England. Secondly, it wants National Institute for Health and Care Excellence guidelines for Ehlers-Danlos syndrome and hypermobility spectrum disorders. Thirdly, it wants a properly co-ordinated, multidisciplinary approach to diagnosis and care for people with these conditions and their associated comorbidities. Fourthly, it wants support and training for healthcare professionals to deliver this. Those are all reasonable and sensible demands.

To give more background about the condition and the work being done to bring about change, I will say a bit more about the symptoms, as many people are not aware of EDS. Whatever knowledge people have, it is undeniable that there is a widespread lack of awareness, and that is part of the challenge that people living with EDS face in accessing care and in dealing with their condition. Twelve types of EDS are rare and can be genetically tested, but—this is a really important point—there is no test for the most common type of EDS. That has led to multiple reports of people being disbelieved by healthcare professionals and by assessors for personal independence payments. In fact, recent research suggests that those with the condition can wait for up to 20 years for a diagnosis. My hon. Friend the Member for Mid Derbyshire (Mrs Latham) has just told us of her constituent who waited 30 years.

I am grateful to Danielle Humphreys, who researches in this area. She told me that quite a common response from doctors can be “Let me just check Google about this, as I’m not aware of the illness you are talking to me about,” or “Can you spell that?” I have some sympathy for doctors. Two of my children are junior doctors. They have a lot to learn in five or six years in medical school. They cannot know everything, but this is just not good enough. For each of us, the condition affects 500 or more of our constituents, so things need to change. I am pleased to put that on the record.

Constituents have been in touch with me about this. A member of my staff has been in touch with me as well. They tell me just how difficult life is with EDS. As one person put it,

“these are horrendous afflictions to live with, and some people can work and live with it, but some can’t. Any Personal Independence Payments that are received are spent on transport to and from appointments, medications and private treatments just to make life bearable.”

Does the hon. Gentleman agree that we must do everything we can not only to improve standards of healthcare, but to make sure that the welfare system can continue to support them?

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.

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.

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.

Thank you for your guidance on timing, Mr Dowd; I will be as brief as I can. I deeply thank my hon. Friend the Member for South West Bedfordshire (Andrew Selous) for holding this debate, but I do so with some embarrassment because I feel like I should have done it a long time ago. I will explain why.

I very rarely talk about my personal life in great detail, especially not about my loved ones, but my wife has hypermobility Ehlers-Danlos syndrome. Many of the comments made today, especially in my hon. Friend’s speech, echo very deeply what I have seen from my wife. She has struggled since her mid-teens with gastric issues. As briefly as I can, I will share some of the experiences that she has shared with me, because when she heard about this debate, she urged me to speak.

My wife has had mobility issues for over 15 years now, probably longer. Her experience with the NHS, as wonderful as it can be and as much as I praise it, has not been the greatest. When she has seen GPs, they have questioned what she actually has. A long time ago, they questioned whether it exists. Even when she sees the musculoskeletal unit, she says it has no idea how to deal with her condition. The answer is often physio, but she needs manipulative physio and she does not get that on the NHS. Painkillers will often be thrown in her direction, many of which she has taken, but over time they do not give the same relief. The only thing that has ever worked for her is proper reformer Pilates, but that is not available on the NHS, and water therapy is very difficult for a person with a full-time job who is guided by when it is available.

Many of my points have been made, but the key point I want to get across is that this condition is like an invisible disease. It is almost like a vile torment for those who have it. I have seen my wife in absolute agony from doing the simplest of tasks. There are many times that I have had to apologise when I have gone to events as an MP and people have said, “Is your wife not coming with you?” I try to explain that she cannot come, but the truth is that if she does, she will be in agony for the rest of that evening and the rest of the next day. It is very hard to explain to people what she has. I explain and they say, “Oh, I have never heard of that.”

The condition is like a disability that is not classed as a disability. It affects every part of the body, yet the person is not seen as a whole. Every single aspect of it that I have seen through my wife over the 20-odd years that we have been together is torment for her. From a personal perspective, I love her deeply and I see how strong she is as a woman, yet I see the pain that it causes her. I have deep concern that this issue is just not being looked at. There are lots of holistic therapies and things that can be done, but when only the body parts of a person are being treated—that includes not treating their mental health as well as their physical health—it has a detrimental effect on every part of their life.

I do not want to take up too much time, but I echo the points that have been made. The NHS needs to ensure that the condition is identifiable, and that the training, the guidance and the signposting are there. We need to ensure that holistic therapies such as Pilates, which do work for some, are not just seen as a thing that sounds nice, but are actually used as a pathway for care. This needs to be looked at as a lifelong condition, because we need to make sure that people are looked after as time goes by and they get older, with other conditions coming into play. The key aspect is understanding.

I am really proud of my hon. Friend for hosting this debate—as I say, I am embarrassed that I did not do it myself. If it helps just one or two extra people realise that this is what they need to see their GP about and be forceful, it will make a difference. Thank you for the time, Mr Dowd.

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).

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.

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.

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?

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.


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