Ewan Dale, Trustee, ME Association.
Scottish M.E. representatives met with Health Department staff and a Chief Scientist Office manager in St Andrews House, Edinburgh, on Wednesday 28th August to discuss what good healthcare and support might look like for people with M.E.
Representatives from #MEAction Scotland, Action for M.E., the ME Association, ME Research UK, the Scottish ME Coalition, and Tymes Trust met with:
- Staff from the Clinical Priorities & Person Centred Policy teams from the Scottish Health and Social Care Department's Healthcare Quality and Improvement Directorate,
- The lead for Patient Participation Groups from the Scottish Health Council,
- The research manager for Experimental and Translational Research, Precision Medicine, NRS Networks, Research Units & Charity Collaborations in the Chief Scientist Office.
The meeting was primarily the Health Department outlining their support for patient groups to submit a bid for a Scottish Health Council (SHC) backed project to gather patient views on existing services and priorities for improvement.
It resulted from Petition PE01690 initiated by #MEAction Scotland, and the Petitions Committee in Holyrood asking the ministry what they can offer in response.
In preparation, the Clinical Priorities team contacted stakeholders who had submitted information in support of the petition and heard their views of what such a meeting could address – then chose to put off addressing many of them.
While we know what we would like to see happen, without having key medical personnel to take on lead roles and offer practice experience as a useful base for development support from the Health Department, some goals can't be progressed.
Instead, it is essential to develop and disseminate proper education on the diagnosis and treatment of ME/CFS. To this end, in addition to education modules, workshopping the details of assessing the individual patient through diagnosis and selecting symptom treatments, would offer the NHS impetus for promoting real improvements in practice and outcomes.
Concurrently, the 2010 Scottish Good Practice Statement could be updated – first by making it a living document, and adding notes to the existing advice, and then by developing those notes to reflect progress in workshopping diagnosis and treatment.
But Clinical Priorities are fixed on the idea that they should wait for the NICE clinical guideline update to be published first.
However, patient representatives are proceeding with developing the “Gathering Views” bid and waiting for news of the other undertaking made by Clinical Priorities, to update the 2010 Needs Assessment by the Scottish Public Health Network. And we'll keep looking for opportunities to change their thinking.
As a separate part of the meeting, the Chief Scientist Office manager covered the (for our purposes) limited range of research aspects they can fund, which includes the current co-funding (with AfME) of a research post-graduate post.
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