P-06-1348 Commission suitable NHS services in Wales for people with EDS or hypermobility spectrum disorders
P-06-1348 Commission suitable NHS services in Wales for people with EDS or hypermobility spectrum disorders
This
petition was submitted by Natasha Evans-Jones, having collected a total of
1,125 signatures.
Text of Petition:
Historically those showing
signs of Ehlers-Danlos syndromes (EDS) or HSD have been referred to
rheumatology departments. In 2021, they were directed to stop seeing these
patients in favour of their diagnosis and management in primary care, which is
not currently equipped for this role. A unique tertiary service in England has
also closed to out of area patients. This situation has led to inequalities in
access to healthcare for those with EDS and HSD in Wales resulting in
unacceptable suffering.
Additional Information:
Ehlers-Danlos syndromes
are genetic connective tissue disorders with body-wide symptoms which can be
disabling, affecting all aspects of life. One type is life-threatening.
Symptoms of most types include musculoskeletal problems, chronic pain and
fatigue, gastrointestinal disturbance, fragile skin, pelvic and bladder
problems, autonomic dysfunction and anxiety. Twelve of the 13 classified types
can be diagnosed via genetic testing. There is no single test for the most
common type (hEDS) or for the related hypermobility spectrum disorders (HSD)
which makes diagnosis challenging. Together, hEDS and HSD are fairly common. A
study in 2019 using data from Welsh hospitals and GP records found that 1 in
500 people are affected (Demmler et al, https://bmjopen.bmj.com/content/9/11/e031365).
The situation in Wales is
causing suffering for those waiting for diagnosis, those on inappropriate
treatment pathways, and their families.
Senedd Constituency and Region
- Vale
of Clwyd
- North
Wales
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Business type: Petition
Reason considered: Senedd Business;
Status: For consideration
First published: 07/07/2023