Gathering public experience of Myalgic Encephalomyelitis (ME)


1. Privacy Notice
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Who we are

This survey is by the Scottish Health Council. We are part of Healthcare Improvement Scotland, which sits within NHS Scotland and helps health and social care services to improve. You can contact us or find out more about our work at

Why we are collecting information

Part of our public task is to gather the views and lived experiences of the public and service users. You do not need to take part in the survey, but doing so will help the Scottish Government find out what good care would look like for people with ME.

The survey closes at 5pm on 24 March 2020

We use SmartSurvey to host our online surveys and to collate responses to paper-based surveys. Survey data is held on servers based in the UK and Ireland and is not transferred to any other countries. SmartSurvey is a data processor for the Scottish Health Council and only processes personal information in line with our instructions. For more information, please see SmartSurvey’s privacy policy.

What information we collect

We are looking for information on your experiences of health and social care support for ME. Participants in this work should be adults with lived experience of ME. We are not looking to target children and young people at this stage unless there are young people wishing to take part who would be classed as transitioning from children’s services to adult services.

The survey is anonymous and any personal information you provide will not be reported. There is an option to save your survey to continue at another time, in order to do this an email address is required. Please note your email address will only be used for the purposes of SmartSurvey automatically sending you the unique link to complete your survey response. It will not affect the anonymity of your response.
How we handle information

Your anonymous survey response will be put together with those from other survey participants. We do not focus on individual responses or use any of the information you give for non-survey purposes. We may take some comments and include them in our reports.

Your rights

You have a number of personal data rights, including to request a copy of your information. For more information on how we handle personal data, and how to contact the UK Information Commissioner if you wish to complain about how we handle your personal data, please see our online privacy notice at:

You can also speak to our data protection officer by email at
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