ME Services

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

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Photo of Willie Rennie Willie Rennie Liberal Democrat

I congratulate Sue Webber on leading the debate so well and thank the Government—that is not something that I regularly do—for commissioning the independent review.

A friend told me the story of an encounter this week. He was out campaigning and met a voter on the doors. The voter looked completely drained and utterly exhausted. He went through his usual spiel, but she stopped him mid-flow. She said that she was drained and exhausted, and that she could no longer talk or stand. She could not even take a leaflet because she would not be able to concentrate for long enough to read it. How anybody could resist a Liberal Democrat leaflet with a good bar chart on it is beyond me. However, the inability to concentrate is apparently one of the symptoms of the condition.

That epitomises the all-consuming nature of the condition: it is largely invisible, but it brings down healthy, active people. For too long, they have not been believed, but they are being believed now. We do not have to stand for the current level of services that are in place; we can match our belief in those people with the level of service that they deserve.

One nurse is leading the way. Keith Anderson, who works at the Ladybank clinic in my constituency, provides Scotland’s only specialist nurse-led service for patients with ME/CFS. Keith devises individual management plans for patients, with appropriate therapies that are based on energy conservation, activity management, relaxation techniques, sleep regulation, pain relief, lifting depression and anger and goal setting. He also uses some aspects of cognitive behavioural therapy in some cases.

Those therapies may be given individually or in groups, at home or in a specialist clinic. Keith has links with the social work department for the provision of useful equipment, respite care, home help, personal care and much more. He can refer patients to home and community education services, and to disability advisers at university and college.

Keith also has contacts with the Department for Work and Pensions regarding benefits, welfare rights, jobcentres, occupational health and so much more, including, importantly, with paediatric and family support units, which has led to the development of a care pathway for children and young adults in Fife. He is—quite rightly—praised highly by all his patients; I hear about him in all parts of Fife. That model of care should not, however, be restricted to North East Fife—it should be available everywhere across the country. Nevertheless, it shows what can be done.

We need to know more, we need investment in biomedical research and clinical trials, and we need to be informed by the research priorities that were set out by the James Lind Alliance priority setting partnership for ME in 2022.

We can do so much more, but there are examples of care. Good work has been done. For example, great work is being done in Dumfries and Galloway by the group that Finlay Carson mentioned. Sue Webber is right that funding is required—we need it to improve services, and it needs to be guaranteed for the long term. That funding should be available for people who have been left behind for far too long.