SearchWales #EnoughIsEnough petition update
- 14 December, 2023
- EDS UK news
In September of 2023, EDS UK’s petition for Wales, campaigning for suitable NHS services for people in Wales with Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD) was discussed in the Senedd Cymru, Welsh Parliament.
In a positive discussion, it was suggested by a member of Parliament, whose family members have EDS, that individual members could write to the Health Board, and as a congregation, Parliament could contact the Health Minister to help push this agenda forward.
It was discussed how in the response to the petition, the Welsh Health Board stated that rheumatology should be seeing patients, when in fact constituents and EDS UK members have explained how they have had referrals rejected and that departments “do not see or treat people with EDS.” Members agreed to take this concern forward.
The Welsh Petitions Committee debated the minister’s response on 11th December. This can be viewed here from 01:53:39-01:55:06. Petitions Committee member Joel James explained how he is supporting the petition as a Senedd member, by writing to the Health Boards, sponsoring a drop-in event in early 2024, and supporting EDS UK by posing its questions to the Health Minister. This had the agreement of the Committee.
We have asked the following questions of the Health Minister:
Will the leads that are to be consulted in the review include experts from other specialties to provide a true reflection of the issues faced by people with EDS in Wales?
How many referrals from GPs to rheumatology are being refused across Wales? Those with EDS/ HSD in Wales are still being routinely denied care under rheumatology. We know from our members that nearly all referrals are bounced back to GPs. Therefore, most people if they can afford it, pay to see a rheumatologist privately. This is the same for physiotherapy and other Musculoskeletal (MSK) services. The Getting It Right First Time Rheumatology report of 2021 recommended that people with non-inflammatory conditions (such as EDS/HSD) are cared for in primary or community care. EDS is not an inflammatory condition, but it is a connective tissue disorder (CTD) and musculoskeletal (MSK) condition causing multi-systemic issues. Both MSK and CTD conditions normally fall under the remit of rheumatology.
How many people in Wales with the rarer types of EDS are being funded to access treatment in England? We know that the types of EDS that have a genetic marker can be referred to specialist centres in Sheffield and London. We would like to know how well this is working and if all GPs in Wales are aware that this is an option.
How will primary and community care be supported in making accurate diagnoses and providing good treatment plans? There is no clear pathway for anyone with any type of EDS in Wales. There are diagnostic difficulties with hEDS/HSD in particular as there is no genetic test for them. Across the UK it is estimated that it takes around 19 years from symptoms beginning to diagnosis, this is being exacerbated by rheumatology refusing to see anyone with hypermobility in Cymru. The only toolkit we are aware of is our own GP toolkit. We want to know if the investigation will include what guidance and advice are in this.
We look forward to updating our Welsh members again in the new year.