Part of the debate – in the Scottish Parliament on 2nd February 2023.
I am pleased to respond to this important motion on behalf of the Government. I hope that, if I speak quickly, I will be able to respond to all the issues that have been raised.
I welcome today’s debate and I am grateful to everyone who has contributed their time and energy to it, and to the members of the public who have joined us in the public gallery. I am particularly grateful for the testimonies that we have heard from those with lived experience. As a minister, it is a powerful experience to hear the voices of the people of Scotland talking directly to Government.
It is clear from the voices that we have heard this afternoon that many people with ME/CFS have felt stigmatised or disbelieved by those who do not understand their condition. Therefore, the first thing that I have to say is that I want that stigma and disbelief to end. We have made a visible commitment to supporting the recent changes to the ME/CFS guidance, and we continue to work to raise awareness of the condition and the impact on those who live with it.
It is also clear that there remains much to do in further co-ordinating the care of people with ME/CFS, and we are working hard to progress that. We want to get it right for people, wherever they are in Scotland. I assure those living with ME/CFS that we are listening, and we hear you.
We know that it is critical that we listen to our stakeholders about what changes would be most impactful. That is why, last summer, we commissioned an independent stakeholder review of the NICE ME/CFS guideline. In doing so, we captured the input of the third sector, lived experience and clinical partners on how we drive forward the implementation of the guideline recommendations in Scotland. We specifically solicited views from parents and carers in that exercise because we absolutely recognise the importance of good-quality care and the right to education for young people living with ME/CFS.
Our neurological care and support framework is a five-year national strategy to improve care for people with neurological conditions, including ME/CFS. Through the framework, we have spent more than £2.1 million over the past two years on improving neurological care across Scotland. We have also continued to work with our UK Government counterparts to explore areas of shared interest on ME/CFS, and have contributed to the production of the UK action plan for ME/CFS, which will be produced shortly.
We are fully supportive of the NICE guideline on ME/CFS, and in order to raise awareness, our national clinical director took the step of writing to all health boards to highlight the guideline and key changes in practice regarding graded exercise therapy and cognitive behavioural therapy. I wrote a similar letter to the Scottish board for academic medicine, which cascaded the information to Scottish medical schools.
I am pleased to say that we have partially updated the Scottish good practice statement on ME/CFS to insert the key changes in practice from the NICE guideline, and we will publish that on the Scottish Government’s website this month.? It is not a comprehensive rewrite but rather a first step in creating a living document that is situated with us and can be further reviewed and updated with partners.