#MEAction Scotland’s latest community call took place on Wednesday, 23rd November.
People with ME from across Scotland joined four volunteers to catch up on what #MEAction Scotland has been doing since the summer.
First up was feedback on a very successful #MillionsMissing event at the end of September. The main focus of that event was to engage with MSPs, asking them to attend to meet with and show their support for people with ME. As a result of a widespread and powerful email campaign by the community, at least 20 MSPs (a huge number for an event like this) joined us and signed our pledge undertaking to support #MEAction Scotland’s call for everyone with ME to have access to ME specialist services. Speakers on the day included volunteers, people with ME and MSPs.
Following a meeting with #MEAction Scotland volunteers the previous week, Humza Yousaf, Cabinet Secretary for Health and Social Care, came out and spoke and thanks to the stellar efforts of our volunteer press team we received widespread press coverage, both locally and nationally.
Other recent developments include meetings with MSPs Jeremy Balfour, Emma Roddick, Jackie Baillie and Sue Webber. Sue Webber has put forward a motion about ME, which has the support of 59 MSPs – again thanks largely to a sustained email campaign by community members. The motion is due to be debated in February 2023 and there will be more details available of how you can get involved in the new year. #MEAction Scotland also joined the recent Scottish Government debate on neurological conditions (which mentioned ME) and continues to build partnerships with Long Covid organisations and consider joint campaigns.
Developments expected soon include the Scottish Government publishing an updated Scottish Good Practice Statement, which has been reviewed in light of the revised NICE guideline and we have been invited to review a Practice Based Small Group Learning (PBSGL) module on ME from NHS Education for Scotland (NES). PBSGL is predominantly accessed by GPs, Pharmacists, Pharmacy Technicians and Nurses working in general practice/primary care.
#MEAction Scotland also plans, in partnership with Action for ME, to conduct a survey of the community’s experience of healthcare services in Scotland, to provide up-to-date information which we can use in our continuing discussions with politicians.
After hearing from the volunteers about what had been going on behind the scenes, there was an opportunity for questions and discussion. A question was asked about the likelihood of the Cabinet Secretary announcing funding for ME at the debate in February. This led to a general discussion on the need for funding versus the difficulty of obtaining it, concluding that meantime, while we will keep asking, we will carry on doing what we can within current systems without additional funding (e.g., healthcare education). Another person shared a recent experience of a poor response from a GP. Sadly, we know this is a widespread issue and the sharing of experiences like this helps underline the continuing urgent need for medical education on ME.
We hope that the quarterly community calls make it easier for a wider cross-section of the community to connect with the volunteers at #MEAction Scotland and keep in touch with what we’re working on. We also appreciate just how much energy it takes to take part in a call and we are constantly humbled by the sacrifices people make in order to attend. The next call is expected to take place in February.
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