Parliamentary Questions: Annabel Goldie in the Scottish Parliament, answers received on 20 June 2011

Annabel Goldie, Conservative MSP for West Scotland, has tabled these questions about ME for answering in the Scottish Parliament.

S4W-00516 Annabel Goldie: To ask the Scottish Executive how health professionals support the parents of adolescents with myalgic encephalopathy (ME) by ensuring a (a) timely diagnosis and (b) treatment plan.

Minister for Public Health Michael Matheson answered on 20 June 2011:

Detailed guidance has been prepared by the Royal College of Paediatrics and Child Health (2004), including an extensive literature review: Evidence Based Guideline for the Management of CFS-ME, which is available at:

RCPCH CFS Guideline.

It is recognised however, that the diagnosis and management of myalgic encephalopathy / chronic fatigue syndrome (ME-CFS) in children and young people is an area which needs to be developed. In the absence of a specific Scottish Good Practice Statement for Children and Young People the Scottish Good Practice Statement (SGPS) on ME-CFS, for use by general practitioners provides interim guidance.

The SGPS has been formally endorsed by the Royal College of General Practitioners Scotland and the Scottish Neurosciences Council, and is expected to help ensure that people of all ages, and their carers, living with ME-CFS get better and more consistent standards of care, including quicker and more reliable diagnosis. The statement and its accompanying documents, a Quick Reference Clinical Guide and a Guide for Patients, can be found at:
www.show.scot.nhs.uk/GoodPracticeStatementonME-CFSforGeneralPractitioners.

S4W-00517 Annabel Goldie: To ask the Scottish Executive which NHS boards have clinicians who specialise in the treatment of myalgic encephalopathy (ME), also broken down by hospital.

Michael Matheson replied on 20 June 2011:

NHS Fife has a dedicated paediatric consultant with an interest in paediatric ME who is based at Forth Park Hospital, Kirkcaldy.

While we are not aware of any other clinicians with a particular specialty in myalgic encephalopathy / chronic fatigue syndrome (ME-CFS), specific services already exist for people living with the condition, including:

The ME-CFS Assessment Clinic in the Regional Infectious Diseases Unit at the Western General Hospital, Edinburgh.

The Wellness Enhancement Learning programme offered at the Centre for Integrative Care in Glasgow which is also open to people with ME-CFS.
Details of the evaluation can be found at: www.thewel.org; The Clinical Nurse Specialist employed by NHS Fife, and The Thistle Foundation Self Management Course in Edinburgh funded by NHS Lothian.

S4W-00518 Annabel Goldie: To ask the Scottish Executive what training on myalgic encephalopathy (ME) (a) GPs, (b) consultants and (c) paediatricians have had in each of the last three years.

Michael Matheson replied on 20 June 2011:

This information is not held centrally.

GPs as independent contractors are responsible for highlighting and addressing their own educational requirements according to the needs of their patients.

In September 2010, we published the Scottish Good Practice Statement on ME-CFS which aims to provide general practitioners with guidance that can be used to assist with the differential diagnosis and clinical management of people living with myalgic encephalopathy / chronic fatigue syndrome (ME-CFS).

The term “Consultant” encapsulates some 60 specialties and 35 subspecialties. Understandably, their training requirements will differ substantially. Reflecting this variety, the training delivered to each consultant, and GP, over the past three years will have been determined by the practitioner themselves and is their own responsibility.

For trainees in general practice and paediatrics, training is determined by the relevant curriculum which is prepared by the college involved and approved by the General Medical Council. Each curriculum is available via the college’s website.

S4W-00519 Annabel Goldie: To ask the Scottish Executive, where there are no locally based specialists, how families obtain an out-of-area referral to a paediatrician specialising in myalgic encephalopathy (ME).

Michael Matheson replied on 20 June 2011:

The Scottish Good Practice Statement (SGPS) on myalgic encephalopathy / chronic fatigue syndrome (ME-CFS), for use by general practitioners recognises that GPs would normally consider ME-CFS in children an area of specialist expertise and people living with suspected ME-CFS should be referred to paediatric services for further assessment.

The general position is that anyone who wishes to receive medical treatment or services outwith their NHS board of residence can discuss it with their GP, or the clinician responsible for their healthcare. Individual cases can be considered on their merits and, if there are sound medical or logistical reasons to do so, the GP or lead clinician can make a referral to another NHS board.

The SGPS also contains an example of a generic care pathway that includes appropriate referral to a specialist clinic or treatment centre, without reference to NHS board boundaries.

The statement and its accompanying documents can be found at:www.show.scot.nhs.uk/GoodPracticeStatementonME-CFSforGeneralPractitioners

S4W-00520 Annabel Goldie: To ask the Scottish Executive whether each NHS board has a named individual whose remit is to ensure that Scottish Intercollegiate Guidelines Network (SIGN) guidelines for the treatment of myalgic encephalopathy (ME) are (a) followed and (b) audited on a regular basis and, if so, who carries out this function for NHS Greater Glasgow and Clyde.

Michael Matheson replied on 20 June 2011:

There is no Scottish Intercollegiate Guidelines Network guideline on myalgic encephalopathy / chronic fatigue syndrome (ME-CFS).

The Scottish Good Practice Statement on ME-CFS, for use by general practitioners is expected to help ensure that people of all ages, and their carers, living with ME-CFS get better and more consistent standards of care, including quicker and more reliable diagnosis.

Implementation of the Health Improvement Scotland (HIS) clinical standards for neurological health services will also support NHS boards with improving services for all neurological conditions, including ME-CFS. The standards are available from the HIS’s website at:
www.healthcareimprovementscotland.org/home.aspx.

NHS HIS is supporting NHS boards in implementing the standards through a two-year implementation and improvement plan.