ME Services

Part of the debate – in the Scottish Parliament on 2nd February 2023.

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Photo of Maree Todd Maree Todd Scottish National Party

I absolutely agree that progress has been slow. As we have all articulated, one of the blocks is the level of stigma and disbelief experienced by people with ME, although I believe that we are overcoming that particular hurdle.

We are currently liaising and working with the Royal College of General Practitioners Scotland on how to make progress on the condition, and how to the disseminate and promote the guidance.

We have heard a lot in the debate about the desire for specialist ME/CFS services. ME/CFS can present a broad range of symptoms and we know there is no one-size-fits-all response. We want people to be able to access care in a setting that is appropriate and as close to home as possible.

Our strengthening of Scotland’s primary care workforce through the recruitment of multidisciplinary teams is making it easier for people to access that kind of care and support. We have now recruited more than 3,000 professionals, including community nurses and physiotherapists, with increased funding of £170 million this year to support the further development of multidisciplinary teams in primary care.

By listening to what matters to people with ME/CFS, and using the principles of realistic medicine to involve them in decisions about their care, we can deliver patient-centred support and reduce inappropriate care.

I agree with members who said that there may be lessons that we can learn from long Covid that might be helpful for ME. Following our discussions with stakeholders, we recently surveyed all Scottish health boards to better understand their care pathways and provision for people living with ME/CFS. We plan to publish that data by May this year in a report that will review the boards’ implementation of the updated NICE guidance, highlight areas of good practice and identify where further support is needed to embed the guidance. That data will undoubtedly be helpful in identifying suitable places for pilots.

We have heard calls today for increased medical education and training, and I understand the importance of supporting health and social care professionals in learning about the diagnosis and management of ME/CFS. That is why we have funded the creation and dissemination of an online continuing professional development course on ME/CFS for all GPs and health professionals in Scotland, which has been produced by Action for ME and partners. By September last year the module had been accessed 1,300 times, with evaluation data showing that it significantly improves participants’ ability to diagnose and manage ME/CFS. I am also pleased to report that NHS Education Scotland has created a practice-based learning module on ME/CFS for primary care clinicians. I understand that NES is currently reviewing feedback from the third sector on the module ahead of piloting it with GPs.

We all recognise the importance of research for better understanding of ME/CFS and the development of effective new approaches to the condition. Through the chief scientist’s office, we are inputting to the UK Clinical Research Collaboration’s ME/CFS research group, which is working to increase research capacity and the number and quality of ME/CFS research funding applications.

Presiding Officer, I close by saying that—