Dr Jessica Eccles, Reader in Brain-Body Medicine at BSMS was invited to Parliament to brief MPs on hypermobility on Tuesday 21 November.
Dr Eccles was supporting Ehlers-Danlos Support UK, which is calling on the government’s Health and Social Care committee to urgently review the provision of dedicated services in England for people with Hypermobile Ehlers-Danlos syndrome (hEDS) and related conditions known as hypermobility spectrum disorders (HSD). She was joined by Dr Helen Cohen, Dr Emma Reinhold, Dr Manoj Sivan, Dr Vadivelu Saravanan and Dr Hanadi Kazkaz, leading UK hypermobility clinicians and researchers.
A petition earlier in the year by Ehlers-Danlos Support UK asking for dedicated funding for the diagnosis and treatment of hEDS and HSDgained 28,700 signatures in England. The response from the petitions committee was “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 of this strategy states 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.”
Ehlers-Danlos syndrome is a complicated condition with many co-morbidities, including pain, gut issues, nutrition and head and neck issues, and has been increasingly linked to Long Covid. Hypermobility-related conditions are not rare, affecting up to 20% of the population. BSMS research has shown 80% of patients with pain and fatigue have hypermobility-related conditions, which are also a risk factor for the development of anxiety and depression.
During the briefing session, Dr Eccles explained to MPs and parliamentary staff: “Hypermobility conditions are not as rare as thought, you or your family members will no doubt be affected or know someone affected, it’s a question of joining up the dots. Flexible joints are a bit of red herring, it relates to a difference in how the tissues in the body are built which can affect all the systems in the body – respiratory, cardiovascular, neurological, gastrointestinal to name but a few. Seventy percent of those living with anxiety are hypermobile, yet patients suffer in silos and are rarely recognised – this must stop.”
Public involvement work from Dr Eccles and researchers at BSMS has found that patients struggle for years to get an assessment and diagnosis for both mental and physical health problems; feel a strong sense of being dismissed, misbelieved or overlooked when interacting with professionals and institutions; and repeatedly encounter poor understanding with few/no adjustments for their needs within healthcare and educational settings.
Dr Eccles adds: “The research is clear – joint hypermobility goes hand in hand with a number of common conditions – asthma, allergy, IBS, anxiety, pain and fatigue. Many people with this condition are dizzy and prone to fainting due to abnormalities of the flight and fright nervous system, like one patient called Alex, who also addressed MPs. We are actively researching the link between Long Covid and brain fog.”
Susan Booth, Chief Executive, The Ehlers-Danlos Support UK, said: "We were absolutely thrilled to be able to hand in our petition of 28,700 signatures to number 10 Downing Street on 21 November. We have been campaigning for suitable NHS services to be provided for people with hypermobile EDS or hypermobility spectrum disorders in England and for any type of EDS across the UK. The briefing gave us the chance to speak to MPs directly. We were delighted to have more than 24 speakers join us on the day. Our vision is that every person with EDS should have access to the appropriate medical services and care. This was a major step forwards in making that a reality."
The charity MQ Mental Health Research, which, along with Versus Arthritis, have funded Dr Eccles’s work, said: “Thanks to the groundbreaking research of Dr Eccles we know that there are clear links between hypermobility and many mental health conditions, including depression and anxiety. Despite it being very common, symptoms are often overlooked or misdiagnosed, particularly in girls. The evidence shows a real need for targeted support and a ‘whole person’ approach to treatment.”