Time for neurological conditions to take the limelight

Written by: Audrey Birt, Associate Director, the ALLIANCE
and Rebecca Duff, Chair, Neurological Alliance of Scotland
Picture of a hand holding a megaphone, with a speech bubble saying

Audrey and Rebecca encourage people to share their views on what's needed to transform care for people living with neurological conditions.

Now is the time for neurological conditions to take the limelight. While lots of work has gone on behind the scenes, it was only in 2017 that the First Minister announced the production of Scotland’s first ever Action Plan for Neurology. Alongside this, the Clinical Standards for Neurological Conditions are also being revised.

There are many different elements contributing to the development of the Action Plan; including prevalence data gathering and neurological service mapping. Essential to this work is gathering the views of people living with neurological conditions, and their experiences of services across Scotland.

The ALLIANCE is delighted to be leading a programme of consultation, in collaboration with the Neurological Alliance of Scotland, to gather and leverage the powerful voice of the neurological community in Scotland.

Together we plan to develop recommendations and priorities for the future of neurological services, based on the voice of people with lived experience of these conditions. We are therefore using a number of ways to capture that voice, ensuring we understand the experiences of people with neurological conditions accessing services and their shared priorities. In order to do this, a mixed methods approach is being taken in order to get a breadth and depth of views. A review of existing information about experiences of accessing neurological services has been undertaken, a number of focus groups held and now a survey is being launched (this link will take you away from our website).

Broad themes emerged from the initial research that address systemic challenges people face in accessing the services that they need and many of the reports begun to suggest how people would like the system to respond to these challenges. Therefore, with each ‘emergent theme’, this report captures ‘aspirations’ for improved neurological services and for how the system could change to suit their needs and improve their care.

The survey is based on the themes emergent from the research and following the focus groups further themes were included.

Those themes are familiar to those of us working in this field; including issues like clear care pathways and care coordination, improved communication, education and support for carers. What has stood out as well though is support for people to live well, for rehabilitation or enablement services and for information and advice on a wide range of issues.

The focus groups also raised the need for support though transitions of care; especially from children’s to adult services and also the impact of stigma and disability on social isolation and loneliness. These are all huge themes, some of which reach way beyond the scope of this work but are a crucial part of people’s wellbeing.

The survey-which launches this-week, seeks to more fully understand these themes and importantly what needs to happen if we are to really transform the future for people living with neurological conditions.

We need you! Please share this survey with your members, colleagues, friends so we can capture the views of as many people as possible. This is an ambitious programme where your voice will really make a difference.

If you would like to find out more, please email audrey.birt@alliance-scotland.org.uk.