Hansard

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 Scottish Government’s response provides information about its engagement work with individuals living with Ehlers-Danlos syndrome and hypermobility spectrum disorders. The submission highlights the Government’s work on the rare disease action plan and states that officials would be happy to meet the petitioner to discuss that work further. The national services division’s submission explains that a short-life working group that it facilitated found that “there was a need for specific specialist expertise in Scotland to improve patient care” but one of the reasons why that work has not progressed is that the national specialist services committee determined that “care might be better delivered through the development of a set of clinical guidelines, a patient pathway of care or a networked community of practice.” The response from the petitioner—Ehlers-Danlos Support UK—states: “This is exactly what we are trying to achieve”, but it has been informed by Healthcare Improvement Scotland that there is “not enough evidence” to support the creation of guidelines from the Scottish intercollegiate guidelines network. The petitioner has shared that NHS Wales has now “committed to co-creating a hypermobility pathway for primary care to help GPs diagnose and manage these conditions.” The petitioner also outlines statistics to support its view that Ehlers-Danlos syndrome and hypermobility spectrum disorders are not necessarily rare disorders, as they often go undiagnosed. We have received a written submission from our colleague Emma Roddick, who is unable to attend the meeting. Her submission, which is available on the committee’s website, touches on her experience of living with chronic pain and the value of meeting other people who have similar experiences to her own. She acknowledges that doctors “cannot be expected to know everything”, but she believes that there should be “a nationally agreed standard for pain pathways to ensure that people do not fall through the cracks”. Before we consider what we might do next, I invite Michael Marra to speak to the committee. 09:45