hEDS-START team engages with policymakers to ‘translate research into change’
Dervil Dockrell and Kathryn Berg, of the hEDS-START team, are taking part in a number of policy engagement activities linked to their report on hypermobile Ehlers-Danlos Syndrome (hEDS) and Hypermobile Spectrum Disorders (HSD) : August 2024
Ehlers Danlos syndrome (EDS) refers to a group of hereditary connective tissue disorders with symptoms including skin hyperelasticity, hypermobility of joints, scarring of the skin and fragility of blood vessels.
There are 13 subtypes of EDS, many of which are extremely rare. The most common form of EDS is hypermobile Ehlers Danlos syndrome (hEDS) which is believed to affect around 1 in 227 people in the United Kingdom. The term Hypermobility Spectrum Disorder (HSD) is given to people who have some clinical features of hEDS but who do not meet the diagnostic criteria for hEDS.
Following a patient engagement event for individuals living with hEDS/HSD earlier this year, Dervil and Kathryn produced a report of their findings examining the patient experience.
Click here to read the 'Translating Research into Change' report
They found that individuals with hEDS/ HSD in Scotland have an average wait of 20 years for a diagnosis, and face barriers to healthcare access and fragmented care, which can have severe mental health implications. They also found high rates of neurodivergent conditions such as Autism in this patient group, and suggest that future work towards an appropriate care strategy for individuals with hEDS/HSD should be informed by this.
As part of their plan to translate this research on patient experiences into practical change, the hEDS-START team has created a working group of interested academics and clinicians who will attend a Round Table at Holyrood next month to discuss the need for an appropriate pathway of care and clinical guidance for hEDS and HSD, ahead of a petition debate on 11 September informed by their research.
They also plan to present the findings of the ‘Translating Research into Change’ report at the Autumn Meeting of the Arthritis and Musculoskeletal Conditions Cross-Party Group in Holyrood.
Alongside EDS UK - the UK’s largest charity supporting those with EDS and HSD -and Versus Arthritis, Dervil and Kathryn are supporting the creation of hEDS/HSD-specific self-management materials, in response to feedback from the patient engagement event. They also continue to advocate for a care pathway for this patient group, and have held meetings with MSPs and MPs to move this forward.
The hEDS-START project was recently awarded the Responsible Engagement and Innovation Award at the University’s inaugural Impact Festival for their work with individuals with hEDS/HSD and for their commitment to inclusive research.
This project has been a labour of love and we feel very fortunate to be contributing to real change for patients with hEDS/HSD. We will continue to work alongside patients and charities to ensure that the results of the hEDS-START project inform a pathway of care which takes into account the lived experiences of individuals living with this condition.
For too long, people with hEDS/HSD have had a ‘raw deal’ in their journey to diagnosis. There are no clinical guidelines to guide healthcare professionals and patients feel as though they are being overlooked and disbelieved. The lengthy time to diagnosis and the impact that this has on physical and mental health needs to be addressed and we will do everything we can to inform future policy and care.
Links
People living with Hypermobile Ehlers-Danlos Syndrome share their experiences