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Scottish Health Council survey of M.E. in Scotland

February 14, 2020

The Scottish Health Council (SHC) has launched a survey to gather the views and lived experience of people with M.E./CFS in Scotland. The survey was commissioned in response to questions raised by a petition to the Scottish Government and the feedback from the M.E. community about the draft neurological framework.

The focus on this survey is what good care and support should look like. While the SHC will not make recommendations, they will summarise their findings which will then be reviewed by a working group to consider the next steps. Download the SHC's information sheet to find out more.

To take part in the survey you must be over 18, live in Scotland and have personal experience of M.E./CFS. Questions cover:

  • health and social care support that makes, or would make, a difference to your life
  • health and social care professionals that are, or you would like to see, involved in your care
  • how health and social care for other conditions or illness you live meets, or could meet, your needs relating to M.E.

This is a survey for individuals so, while we are not submitting an organisational response, we encourage people with M.E./CFS across Scotland to take part. Our team in Scotland are attending SHC events in a supportive capacity, and helping to promote the survey among our networks. Theresa Burns, our Project Co-ordinator in Scotland, says:

“It is so important that the Scottish Government hear from as many people with M.E. as possible to ensure they understand the range and details of the issues they are facing. We will be assisting local officers to reach people in different areas, so please get in touch if you want to know what is happening in your local area or if you need any assistance to engage."

Beverley Collins, Local Officer, Healthcare Improvement Scotland, told us: "Surveys can also be sent out by post, telephone or face to face interviews can be made available too upon request." For further information, please contact the local office, Scottish Health Council Fife.

The survey closes at 5pm, Tuesday 24 March.