Scottish good practice statement

Scottish good practice statement

On Wednesday 1st March 2023, Scottish Government published their interim update to 2010’s Scottish Good Practice Statement on ME-CFS (SGPS), intended to show the elements of NICE guideline NG206 “Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management” which updated the clinical practice guidance in the SGPS.

This update to the SGPS was originally announced by National Clinical Director of the Scottish Government, Jason Leitch, in his letter of 14 June 2022 to NHS Boards and other service and professional leads across Scotland.

While we acknowledge that this publication is intended to be temporary, we can’t help but be disappointed by the interim update, which inserts the most important points from NG206 as information ‘text-boxes’ alongside the original text, and without clear indication of what is superseded.  

Elsewhere, there is the occasional ‘Note’ inserted into the text without making it clear which is new text, and there are footnotes referring to NG206 as the current reference or source of guidance where some other references in the original text have been superseded. 

That does not make for an easily read source of guidance by a practitioner dealing with any aspect of their patient’s case, unless they were already familiar with the SGPS. And as a resource tool for any level of medical education, it could raise confusion. 

Also, we are concerned over just how long this temporary document could remain the NHS Scotland guidance for recognising, properly diagnosing and effectively treating ME and CFS. 

Main update insertions show the Diagnostic Criteria from NG206, then updates to the Section 4 on “Interventions, management and rehabilitation”, particularly dealing with physical functioning and the use of energy management, CBT if appropriate, and managing fluctuation and relapse.  

In the section for children, the guidance added to NG206 on particular issues with a severely affected child or a case where safeguarding has to be considered, is introduced here also. 

In the section on severely affected patients’ needs, the Severity Scale from NG206 is inserted. 

Further on, the transfer of some Benefits administration to the Scottish Government is noted, and in the Appendix 1, updates on available resources that were produced in cooperation with the ME Charities are shown.

Extract from Interim Update

What works for one patient may not work for another and therefore it is crucial to tailor interventions to the needs and circumstances of the individual patient. A standard approach to management will involve:

  • It is important to give advice and support from the outset, even in the absence of a firm diagnosis.
  • Acknowledge the reality of the patient’s symptoms and the impact on their life.
  • Share decision-making with the patient.
  • Be explicit about diagnosis and co-morbidity (if relevant).
  • Explain the possible causes, nature and fluctuating course of the illness, together with possible management options (benefits/risks), taking account of the person’s age and the stage, severity and variability of their illness.
  • Explore the range of management options that can be utilised, as appropriate to the particular patient’s condition.
  • Offer information on other sources of support (e.g. national charities, local groups and services).

Following the unsatisfactory NICE guideline NG.53 in 2007, approaches were made to Scottish Health Bodies about creating a better from of guidance in Scotland. The Scottish Intercollegiate Guideline Network did a preliminary review of their criteria and judged that there was not enough research evidence to meet their standard. So, an alternative form of clinical guidance was developed, using the occasional format of a Good Practice Statement. 

Dr Gregor Purdie led much of the development, but the process ran into difficulties getting some medical professional bodies to ‘sign off’ on the document. Luckily Dr Purdie managed to get support from a judicious senior practitioner, Dr Lewis Richie, Mackenzie Professor of General Practice at Aberdeen University. 

In a comparatively short time, Prof Richie and Dr Purdie saw the SGPS through a range of examination and adjustment, maintaining much of the original version despite the involvement of professional stakeholders previously opposed to full recognition of ME and CFS. 

The 2010 SGPS was of course a compromise to some extent, but a great improvement on the preceding NICE guideline. It’s concentration on practical clinical diagnosis and treatment, without much consideration of policy on service provision and development, avoided much of the negative arguments that continue to be faced when trying to get Health Authorities to provide support for individual practitioners who are addressing patients’ needs. 

Yet, despite a letter to practitioners from the Chief Medical Officer for Scotland, the SGPS was largely ignored, although it was supported by a contemporary Health Needs Assessment, and was later refreshed in 2015. 

This interim update was carried out largely in-house by the Clinical Priorities unit of the Healthcare Quality and Improvement Directorate. Despite the range of experience and abilities in the CP team, this task may have been a bit much of a challenge, given the background issues and the lack of NHS Scotland expertise for them to turn to. 

Of course, the MEA feels that we could have effectively contributed more widely to produce a better interim update, as do the other ME charities, but our greater participation could have raised objections from some medical quarters. 

Meanwhile, we will have to try to make the best use of the situation as part of our continuing campaigning to engage more doctors, allied health professionals and students in medical education to improve their diagnostic and treatment skills for ME. 

Of course, part of making good progress for ME remains development of expertise to lead wider practice development. In Scotland we have been aiming to approach engaging government, NHS Scotland, professional bodies and medical schools in identifying anyone with suitable skills and related interests, rather than facing off with service provision administrators and political parsimony. 

And as our contacts with Clinical Priorities are central to our wider opportunities for achieving progress in Scotland, while we have to face the challenges raised by these circumstances, alongside our partner ME Charities, we want to retain the constructive working relationship despite any hiatus raised by the shortcomings of this interim update.  

Immediate discussions on the issues with this update and the opportunities for addressing these as part of moving forward will tend to determine next steps for all parties, and we hope to get past difficulties with this update as quickly and effectively as possible. 

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