Scotland Parliament debates ME CFS

Scottish Parliament Debates ME/CFS

MSP Sue Webber led a Members' Business Debate, “Scottish Government Commissioned Review of ME Services and Future Action” on 2nd February 2023.

Ten MSPs spoke on the issues before Minister for Public Health, Women's Health and Sport, Maree Todd responded. Watch/Listen the video with subtitles on our You Tube channel below:

Ewan Dale of the MEA covers the debate below and a full transcript can be seen from the button below.

Sue Webber (Lothian) (Con) – In her introductory speech, debate sponsor Sue Webber covered many of the main issues, including the 20 years since the issues were first brought before the Scottish Parliament, the current Cabinet Secretary's statement in September that he wanted to see progress in resolving issues had been achieved over the following 6 months, the harms caused by graded exercise, the assumption of other, behaviourally-weighted diagnoses, the limitation of treatment options to coping advice, etc.

First, among the other 9 MSPs who spoke (plus one intervention), Emma Roddick (Highlands and Islands) (SNP) covered the similarities and incongruities in issues common across the range of disabilities, and all the factors highlighting the need for specialist understanding to lead service improvement.

Donald Cameron (Highlands and Islands) (Con) repeated that last point and added the insecurity facing support provisions, where available to patients at all.

Intervening, Claire Adamson (Motherwell and Wishaw) (SNP) pointed out the issues facing paediatric cases, including lack of adequate educational support.

Jackie Baillie (Dumbarton) (Lab) pointed to the Stakeholder Review commissioned by the Scottish government last year, with it's highlighting the need to start providing and developing effective services. She introduced some of the basic statistics showing the scale of needs and limited provision of service, including the ongoing loss to the economy from benefits, health and care costs, plus the lack of economic productivity from this large patient cohort and many of their carers. She also highlighted the crossover in presentations between ME and CFS, and many with Long COVID, and the need for sharing learning across presentations.

Beatrice Wishart (Shetland Islands) (LD) joined remotely, restating parts of the debate Motion, “that … consideration be given to identifying the most effective approaches to improving GP knowledge, confidence and understanding of ME/CFS through an appropriate education programme” and “that pilot services should be funded in a selection of NHS boards to test the development of specialist services with patient involvement and third sector collaboration embedded in the design”. She pointed out the heterogeneity of patients and presentations, and repeated the need for paediatric services.

Gillian Mackay (Central Scotland) (Green) reported patient experience from last year, where a GP only partly qualified previous assumptions of behavioural causality and active rehabilitation as appropriate for ME, despite current guidance. She highlighted the need to include patient experience in developing suitable service provision.

(To allow time for all MSPs who wished to speak, at this point it was agreed the debate be extended by up to 30 minutes.)

Christine Grahame (Midlothian South, Tweeddale and Lauderdale) (SNP) noted the decades during which ME had been known to exist and the limited progress that had been achieved since the worst prejudices against accepting it's medical nature. Like other speakers, she referred to constituent's experiences, with one illustrating many of the issues faced due to lack of suitable available services and support.

“…When my son was 14, his life changed dramatically. He had been academically gifted, sporty and generally a social and happy boy who enjoyed life. He came down with ‘a bug’ that he never recovered from, and was later diagnosed with CFS/ME. For two years, he was housebound and unable to go further than our back garden, too unwell to attend school and isolated from friends. My son was offered no treatment and support was almost non-existent. I gave up my job to look after him. Everything was a struggle as this condition is hugely misunderstood. CFS/ME is much more than debilitating fatigue. He also suffers muscle aches, stomach pain, headaches, cognitive fog which makes learning very difficult, sleep disturbance and the fatigue affects everything he does. I spend my time caring for him and researching possible treatment or supplements that could help his recovery even a little. We’re now 4 years in and we have no support apart from a private specialist that we fund ourselves. We have spent thousands over the past few years on private consultations, supplements and medications to help his condition. Recovery is slow and costly, isolating and lonely.”

Finlay Carson (Galloway and West Dumfries) (Con) referred to the recommendation in the Stakeholders Review, that, “Pilot services are funded in a selection of NHS boards to test the development of specialist services with patient involvement and third sector collaboration embedded in the design.” He held up his experience of the support group covering his constituency, Dumfries and Galloway ME and Fibromyalgia Network, as an example of self-help capacity among patients able to participate and the value of voluntary contributions given relatively minimal support funding.

Willie Rennie (North East Fife) (LD) spoke of the only specialist nurse service for ME-CFS in Scotland, based in his constituency, and the scope of work that one trained professional can cover within the limits of their remit. He also referred to the need for targetted medical research as highlighted by last year's ME/CFS Priority Setting Partnership report “Defining future ME/CFS research” produced by James Lind Alliance for the National Institute for Health and Care Research (NIHR), Medical Research Council and the Chief Scientist Office for NHS Scotland.

Stephen Kerr (Central Scotland) (Con) completed the MSP contributions with two constituents' experiences, showing again the continuing gulf between the needs of severely affected patients and the availability of any suitable services and support.

Maree Todd, Minister for Public Health, Women's Health and Sport (Caithness, Sutherland and Ross) (SNP) responded for the government, recognising the needs to end stigma and disbelief, to promote current guidance and improve service provision, to include the experience of stakeholders, and to raise awareness of ME/CFS and its impact.

She then referred to the Stakeholder Review and Scotisth Government's general aims to implement its recommendation and to the Neurological Framework strategy to improve neurological services, plus to Scottish Government's involvement with the Westminster Department of Health and Care Services (DHSC)'s Draft Delivery Plan on ME/CFS, and to letters written by the National Clinical Director to all health Authorities, and by herself to the Scottish board for academic medicine.

Next, she confirmed that the short-term update to the NHS Scotland clinical guidance, the Scottish Good Practice Statement on ME/CFS would eventually be published this month, bringing it in line with 2021's NICE Guideline NG206, noting that this guidance would remain open to further review and updating.

Finlay Carson intervened with reference to a book “What is Wrong with ME—A Case of Childhood Myalgic Encephalomyelitis: The Illness and the Controversy” by Merryn Fergusson, widow of former MSP and presiding officer Sir Alex Fergusson, and how little progress had been made in the 20 years since the start of the period covered by the book.

Maree Todd continued, stating government are working with the Royal College of General Practitioners Scotland on how to progress dissemination and promotion of guidance. Referring to calls for specialist service provision, she talked about current health policies in recruiting healthcare personnel, generally developing multidisciplinary teams in primary care, and implementing their policy “Realistic Medicine”.

The government has surveyed Health Boards regarding their care pathways and service provision for ME & CFS patients, and expect to report on the results in May. She indicated the results should help identify locations for piloting aspects of service development.

She referred to the funded promotion of the Learna CPD module on ME/CFS as part of the Neurological Framework, and to NHS Education Scotland (NES) creating a practice-based learning module on ME/CFS for primary care clinicians which she expects to be piloted with GPs.

Chief Scientist Office involvement in the UK Clinical Research Collaboration – (not to be confused with the ME Research Collaborative comprising research charity reps and lead researchers involved with ME) – is the reference she made to advancing clinical research in Scotland. (As yet, the Collaboration has not stated any formal position on promoting or supporting ME research.)

Maree Todd ended by affirming the government's intention to listen to patient experience and involve stakeholders in improvement work, to “maximise quality of life for people with ME/CFS across Scotland”.

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