Rewrite the Future

Written by: Elinor Jayne, Policy and Public Affairs Manager - Scotland, Sue Ryder

Published: 25/04/2016

Elinor Jayne writes for us on Sue Ryder's new campaign and the choices facing voters ahead of the Scottish Parliament election.

We at Sue Ryder eagerly await the Scottish Parliament election results in less than two weeks: not for the usual reasons but because we want to know who of those MSPs elected on 5 May support our Rewrite the Future campaign.

We want specialist care and support for people with neurological conditions to be placed squarely on the new political agenda, and we’ve been doing our utmost to secure pledges from all candidates to improve the lives of people living with neurological conditions in Scotland.

The names of many neurological conditions are familiar: Parkinson’s, motor neurone disease, Huntington’s and multiple sclerosis. But unless you have direct experience yourself, it is very difficult to understand the wide-ranging impact these conditions can have. They affect the brain and nervous system and generally progress throughout a person’s life, with a huge impact on day-to-day living and an individual’s physical and mental health, and the lives of their families. The complexities of neurological conditions, including the way in which they progress at varying and inconsistent rates, mean that people need specialist and personalised care and support. This care, however, is often patchy, uncoordinated, and difficult to find.

Our research shows that a worrying 64 per cent of health boards do not have a current three-year plan for the provision of neurological health services to its population, despite the fact that such plans are required to be published and reviewed annually.

Of the health boards that provide specialist neurological services, only 50 per cent provide self management services. Self-management has been shown to improve wellbeing and independence as well as allowing people to live at home for longer with less intensive support from health and social care services. The current lack of self management and other specialist services goes some way to explain why many people with neurological conditions end up in older people’s care homes where they have little or no access to specialist care such as physiotherapy, hydrotherapy and services designed for people with neurological conditions. Imagine being diagnosed with multiple sclerosis in your 30s and realising that not only is this likely to impact on every aspect of your life including work, family and home life, but you may well end up in an older people’s care home surrounded by people in their 70s, 80s and 90s. All for want of specialist care and support.

We want the next Scottish Government to ensure that wherever someone lives, they will be able to have dedicated neurological care and support – whether at home or in a specialist care centre – delivered by specialists who understand these complex conditions.

We are asking voters across Scotland to contact their local election candidates asking them to pledge their support for the campaign: we’ve achieved cross party support and the number of candidates who’ve signed the pledge is continually growing. Not only that, of the political parties to publish their manifestos so far, the SNP has pledged to support care for people with neurological conditions.

We know that our work on driving care for people with neurological conditions up the political agenda isn’t going to end on 5 May. We’ve made some great strides but on 6 May we need to start work to translate this momentum into tangible change. There is much work to be done, but we are confident that, for people living with neurological conditions, this campaign marks the start of a better future.


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