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Scottish National Action Plan consultation - our response

February 13, 2019

Action for M.E. has submitted a response to the Scottish Government’s consultation on the National Action Plan on Neurological Conditions. Our response highlights several areas of concern and we remain disappointed that it does not build on the results of the ‘Lived Experience Survey’ where 33% of respondents were people living with M.E/CFS. As this plan was developed following this survey, it should better reflect the current situation faced by thousands of people across Scotland with M.E./CFS who have no access to specialist services.

Our response highlighted:

  • The gaps that exist in provision across Scotland with very few specialist services
  • lack of training in the medical profession with no M.E./CFS lead in Scotland. The Lived Experience survey demonstrated that people with M.E. feel that their Health professional does not understand the condition. Currently the plan does not address this
  • that there is no prevalence data for M.E./CFS in Scotland as this will affect the development of services.

The National Action Plan for Neurological Conditions will set out the vision for improving diagnosis, treatment and care for people in Scotland. We therefore feel that they need to take into consideration the current position of people with M.E., highlighted by the response to the Lived Experience survey. The consultation has now closed and we will look for other ways to engage with Ministers and the National Institute for Health in the meantime to ensure people with M.E./CFS are considered by this plan.