David Torrance (Kirkcaldy) (Scottish National Party): To ask the Scottish Executive what progress it has made on (a) offering day-to-day assistance to people with myalgic encephalopathy (ME) and (b) providing funding for research into this condition.
The Cabinet Secretary for Health, Wellbeing and Cities Strategy, Nicola Sturgeon, replied:
In September 2010, we published a Scottish Good Practice Statement (SGPS) on ME-CFS, for use by General Practitioners, as part of the process of ensuring that people get better and more consistent standards of care, including quicker and more reliable diagnosis. The Statement provides GPs with an algorithm setting out the generic care pathway. The Statement and its accompanying documents – a Quick Reference Clinical Guide and a Guide for Patients – can be found at: http://www.show.scot.nhs.uk/GoodPracticeStatementonME-CFSforGeneralPractitioners.
Healthcare Improvement Scotland (formally NHS QIS), launched the Clinical Standards for Neurological Health Services on 21 January 2010. The standards are in part generic, dealing with the early part of the patient journey, including access to specialist neurological services and the quality of the patient experience. The generic standards are applicable to people living with all neurological conditions including ME- CFS and Healthcare Improvement Scotland is supporting NHS Boards in implementing the standards through its 2-year implementation and improvement plan.
The Chief Scientist Office (CSO) within the Scottish Government Health Directorates has responsibility for encouraging and supporting research into health and health care needs in Scotland. CSO primarily responds to requests for funding research proposals initiated by the research community in Scotland and this role is well known and advertised throughout the healthcare and academic community.
CSO is not currently funding any research into ME-CFS, but would be pleased to consider research proposals, of a sufficiently high standard, for innovative studies to treat Myalgic Encephalopathy/Chronic Fatigue Syndrome. These would be subject to the usual peer and committee review.
My MP recently wrote to Nicola Sturgeon on my behalf about the state of ME – no pun intended – in Scotland. The reply came from Michael Matheson MSP, Minister for Public Health. I was pleased that Michael Matheson assured me that the ‘Scottish Government recognises ME-CFS as a serious neurological illness, and that we are committed to providing the best care possible for people living with the condition.’
However, needless to say, I was demoralised and disappointed when he invoked the PACE trial as an encouraging example of research into ME (partially funded by CSO, by the way). I emailed him explaining politely that the PACE trial was useless for PWME. I never received a reply. I felt he was just cutting and pasting the usual paragraphs that are cut and pasted when constituents – across the UK – express concerns about ME, without any true understanding or insight into what is going on. He also told me about the MRC £1.5 million (!) and the Scottish Good Practice Statement. I told him I already knew about both and that I had been disturbed by the presence of a neuropsychiatrist and Dr Gerada (Prof Wessely’s wife) on the SGPS panel. I am very glad I am not newly diagnosed with ME as I am not sure what kind of medical support I would get, living in Scotland (I believe Michael Sharpe was/is the main ME man in Edinburgh, not sure if this is still the case). In the 80s in Glasgow, as ME patients, we were referred by our GPs to neurologists and virologists – I know that is certainly no longer the case! Having been ill for so long, I can manage my own illness, I know what works and what doesn’t, I do not ‘urgently’ require specialist input – though if there was a decent specialist ME clinic here I would certainly attend…
I have no reason not to think that Nicola Sturgeon will not do her best, she has been receptive on the few occasions I have tweeted her and she seems willing to engage with others on the subject of ME. I also sent my MP ‘The State of Me’ and asked him to pass it on to her when he was finished.