The Scottish Parliament has held a debate on Sue Webber MSP‘s Motion centred on ME, its symptoms, and in particular the findings of the yet to be implemented 5 July 2022 ‘Report on a Scottish stakeholder review of the Myalgic Encephalomyelitis/Chronic Fatigue Syndrome NICE guideline’. As the debate followed immediately after First Minister’s Questions, it took advantage of the large numbers of MSP’s who normally attend FMQ but, as 61 MSPs from across the political spectrum signed the Motion, interest was high in any event. So many MSPs wished to speak – either in the Chamber or attending remotely – that an additional half hour was allocated by the Deputy Presiding Officer.
Opening the debate, Sue Webber described ME as “Scotland’s forgotten illness” and, akin to other contributors, informed the Chamber of personal testimonies from constituents which gave real-life experiences of the realities of living with the disease and the lack of empathy and knowledge exhibited by healthcare professionals. Donald Cameron MSP summarised the themes arising from his constituents: ME is a legitimate and debilitating illness but is not yet understood fully; the lack of access to services; and that more investment is needed to find a cure. He urged simply that this debate is seen as the “start of a change” in Scotland.
Jackie Baillie MSP gave useful background to the situation in Scotland in that there is no specialist consultant and only a single specialist nurse, despite the fact that in a typical GP practice of 10,000 patients between 20 and 40 will have an ME/CFS diagnosis. Nevertheless, a survey of GPs showed that 70% of respondents felt that the illness was ‘rare’ and 13% that the illness was psychological. Despite an estimated cost to the Scottish economy of £360m, (c£17,000 per patient), the Scottish government has funded only 2 projects in the past decade, with the most recent being a co-funded PhD place. The place cost £45,000 to which the Scottish government’s contribution equates to approximately £1 per person in Scotland diagnosed with the illness.
In answer, and on behalf of the Scottish Government, Maree Todd (Minister for Public Health, Women’s Health and Sport) stated emphatically that
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.
before narrating actions in train to improve care, partially as part of a national neurological care plan but the most significant being a still-to-be published partial update of the Scottish Good Practice Statement as the Scottish Government supported fully the changes in diagnosis and care reflected in the 2021 NICE guideline.
Contact, she said, has been made with Scottish NHS Health Boards over the use of CBT and GET and also with universities to update medical education to take the new NICE guideline into account. The Minister further assured MSPs that the government was 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. In fact, she alluded to the success of a CDP module for healthcare professions and that NHS Education Scotland has created a practice-based learning module on ME/CFS for primary care clinicians.
Ms Todd revealed that the Scottish Government was surveying all Health Boards to assess care pathways with a view to identifying good practice and to gauge where support was needed to implement best practice – with the report to be available in May 2023.
She continued by stating that the government was working with the UK government to produce a Delivery Plan for ME with the Chief Scientist Office involved in the process.
On research, apart from the Delivery Plan’s aspects looking at ways to improve the number and quality of research applications, the Minister was disappointingly silent.
A timely intervention was made by Findlay Carson MSP who reminded the Chamber of former Presiding Officer, Sir Alex Fergusson, whose wife, Merryn’s book looked at problems and misunderstandings around ME going back to the 1930s.
Little progress has been made since that book was written. When does the minister expect fit-for-purpose care pathways to be in place in every health board in Scotland to ensure that we do not leave people behind and so that they get the treatment that they need?