Hansard

Our final new petition is PE2038, which has been lodged by Ehlers-Danlos Support UK and asks that suitable NHS services be commissioned for people with hypermobile Ehlers-Danlos syndrome, or HEDS, and hypermobility spectrum disorders, or HSD. The SPICe briefing explains that Ehlers-Danlos syndromes are a group of rare inherited conditions that affect connective tissues in the body and that there are different types of EDS, including hypermobile EDS. The briefing also outlines other hypermobility spectrum disorders and notes that guidance on and guidelines for managing EDS have not been straightforward, due to some views that the evidence base is insufficient and varied opinions on the best way of managing the conditions. The Scottish Government has outlined that diagnosis and patient care are provided by local and regional rheumatology services with the input of other specialities. Its submission highlights the Scottish rare disease action plan and states that the actions in the plan will address issues around the lack of signposting, referral pathways and overall care co-ordination, including for those living with HEDS and hypermobility spectrum disorders. The petitioner’s written submission disputes the categorisation of HEDS and HSD as rare, stating low diagnosis of the issue and saying that four out of five people to whom it has spoken have not been diagnosed. The submission also refers to a bid made in 2018 by Professor Stuart Ralston for a specialist centre that was supported by consultants, therapists and patients but not by the Scottish Society for Rheumatology. The petitioner highlights concern about access to services through rheumatology, stating its understanding that rheumatologists have been directed not to see people with non-inflammatory conditions. In light of the submissions that we have received in addition to that from the petitioning organisation, do colleagues have any suggestions for action? If not, I suggest that we write to the national services division to ask whether it remains committed to producing a paper highlighting the issues and service gaps that people with EDS and HSD encounter; why the proposal in 2018 by Professor Stuart Ralston for a specialist EDS centre was rejected; and whether it has monitored the delivery of its commitment to encourage regional expertise and services in place of a specialist centre. We might also write to the Government to ask how it intends to engage with people with HEDS and HSD in taking forward actions under the rare disease action plan, either individually or through Ehlers-Danlos Support UK. Are members content to proceed on that basis? Members indicated agreement.