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Neurological care and support in Scotland update

February 03, 2020

Last month the Scottish Government launched the Neurological care and support: Framework for action 2020-2025. This framework sets out their vision for driving improvement in the care and support for those with neurological conditions, including M.E./CFS, in Scotland.

During the consultation, Action for M.E. raised concerns over the limited benefit this plan will have for people with M.E. due to the lack of current services and support and, while the framework has a number of positive points, we remain concerned. Until there are more specialist M.E./CFS services in Scotland, people with M.E. continue to receive generalised care from healthcare professionals who lack detailed understanding of this complex condition and how it affects them.

The framework does set out 17 commitments which, if delivered may lead to improved support and a more joined-up healthcare experience. These include:

  • steps to improve the recording of neurological conditions
  • supporting shared-decision making and personalised models of care and support
  • ensuring high standards of effective, person-centred, and safe care and support
  • ensuring equitable and timely access to care and support across Scotland.

We are working with others to look closely at the framework’s 17 commitments and identify potential opportunities to make meaningful changes for people with M.E.A budget of £4.5 million over five years has been announced to support the frameworks implementation, and we will be working with and supporting others, to ensure that the Scottish Government receives quality proposals, endorsed by the M.E. community in Scotland.

We are encouraged by the Scottish Government’s decision to commission two further pieces of work. The first is updating the 2011 M.E./CFS Public Health Needs Assessment, to understand current practices and provisions for adults and children in Scotland. The second will see the Scottish Health Council consult with people affected M.E. on what appropriate and effective services should look like.

The Cabinet Secretary for Health and Sport, Jeane Freeman, confirmed these arrangements at the petitions committee meeting in December, when she also spoke about the value of the framework for people with M.E.

We are supporting this work, alongside other stakeholders in Scotland including #MEAction Scotland and the M.E. Association. We also hope to input into the subsequent Short Life Working Group that will be convened to examine the outcomes. This will include what practical steps might be taken in advance of the publication of the revised NICE guideline for M.E./CFS in December (which could potentially trigger a review of the its equivalent guidance, the Scottish Good Practice Statement).