Scotland: meeting about NICE Guideline implementation

Scotland: Implementing the NICE Guideline and updating the Good Practice Statement on ME/CFS 

In a meeting on Wednesday with the Directorate for Healthcare Quality and Improvement Clinical Priorities Unit, we finally heard about the plan to update the 2010 Scottish Good Practice Statement (SGPS) to bring it into line with the 2021 NICE Clinical Guideline on ME/CFS. 

This follows the Scottish stakeholder review of the ME/CFS NICE Guideline, and the preceding letter to Scottish Health Service Bodies from National Clinical Director, Jason Leitch and Interim Director, Linda Pollock

At the time the stakeholder review was published (05 July), Maree Todd MSP, Minister for Public Health, Women’s Health and Sport, said: 

“I welcome the report of this Scottish stakeholder review of the NICE guideline on Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS), which was commissioned by Scottish Government and carried out by an independent provider. The publication is an important step towards recognising the views and voices of people affected by ME/CFS and those who care for and support them. I’m grateful to all those who contributed their time and energy to this review. 

“One of the main findings of this report is that there is a visible commitment to supporting the key changes within the NICE guideline, to help end the scepticism and disbelief. It is noted in the NICE guideline that “people with ME/CFS may have experienced prejudice and disbelief and could feel stigmatised by people (including family, friends, health and social care professionals, and teachers) who do not understand their illness”. 

“I want this stigma and disbelief to end. The Scottish Government is fully supportive of the NICE guideline, and the accompanying implementation statement. We have also written to health boards and those providing medical education to highlight the key changes within the NICE guideline. We will continue to work to raise awareness on the condition and ensure the Scottish guidance is updated to reflect these changes.” 

The Clinical Priorities Unit plan to check the content of the 2010 SGPS against the NICE Guideline, update entries as appropriate, and disseminate the updated guidance throughout NHS Scotland. They hope to manage this in a comparatively short time – in several weeks rather than months. 

Any further work on updating the SGPS can then be taken forward in line with any other progress on the aims that were identified in the 2018 Petition (PE01690) from Emma Shorter and MEAction Scotland: Review Treatment of People with ME in Scotland

Disappointingly, we heard little of substance at the meeting about creating a referral network of ME/CFS Specialist Services. These are desperately needed in Scotland and are a key part of the NICE Guideline and something that we have been repeatedly calling for over many years to no avail. It would now seem that until implementation of the NICE Guideline shows demonstrable results in England, further progress in Scotland will be limited.  

The Department of Health and Social Care (DHSC) in Westminster will be briefing the devolved nations on the initiatives that are being pursued in England and this could provide an additional incentive to drive health and social care improvements in Scotland. But we won’t know more until 2023 when the DHSC delivery plan is published.  

In the meantime, campaigners – including the ME Association – will continue demanding health and social care reforms in Scotland. 

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