Committee
Citizen Participation and Public Petitions Committee 09 October 2024
09 Oct 2024 · S6 · Citizen Participation and Public Petitions Committee
Item of business
Continued Petitions
People with Hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders (PE2038)
We should keep the petition open and, as well as doing what Mr Marra suggested, write to the Scottish Government to ask whether it accepts the petitioner’s view that Ehlers-Danlos syndrome and hypermobility spectrum disorders are not necessarily rare diseases, as they are often undiagnosed. In the light of that, we should ask what action is being taken, beyond the rare disease action plan, to improve diagnostic services. We should also highlight the commitment by NHS Wales to co-produce a hypermobility pathway for primary care and ask whether a similar exercise could be undertaken in Scotland.
In the same item of business
The Convener
Con
PE2038 calls on the Scottish Parliament to urge the Scottish Government to commission suitable NHS services for people with hypermobile Ehlers-Danlos syndrom...
Michael Marra (North East Scotland) (Lab)
Lab
Good morning, convener.
The Convener
Con
We previously considered the petition on 4 October last year, when we agreed to write to the Scottish Government and the national services division. The Scot...
Michael Marra
Lab
I greatly appreciate being afforded the opportunity to address the committee. This is the first time that I have spoken to the committee about the petition, ...
The Convener
Con
Thank you very much. There were a couple of good suggestions in there.
Foysol Choudhury
Lab
We should keep the petition open and, as well as doing what Mr Marra suggested, write to the Scottish Government to ask whether it accepts the petitioner’s v...
The Convener
Con
I note that, in addition to Mr Marra and Emma Roddick, a number of our colleagues—Bob Doris, Angela Constance, Bill Kidd, Pauline McNeill, Màiri McAllan, Dan...