HEALTH/POLICY VOLUNTEER FOR THE MSA TRUST (VAUXHALL, LONDON)
The Multiple System Atrophy provides support for people affected by a rare neurodegenerative disease called multiple system atrophy which affects around 3,000 people in the UK. MSA is an indiscriminate and devastating terminal disease, and its rarity means many health and care professionals and public alike have not heard of it until directly affected.
Supporting people with MSA, their families and carers, is a key driver for the Trust and the reason why we fund MSA specialist nurses, provide education to health and care multi-disciplinary team members and offer peer support through the online community, local support group networks and by increasing general awareness of what is, by its nature, an incredibly isolating disease. Our Vision is to one day find a cure for MSA, and for this reason we offer research grant funding and are working closely with the scientific community to prioritise MSA research and build networks.
We are a growing, ambitious charity and now need to build our newly formed Services Committee which is responsible for the development and delivery of the wide range of services provided to people affected by MSA, and to help us find our way through the NHS/political/policy arena.
We are now looking for somebody who:
- Knows their way round the NHS political and policy arena
- Can help us to identify which Government/health policies are relevant to the MSA area and advise us on how to respond
- Can guide us through the commissioning process and how it affects our area
- Is able to attend a minimum of two Services Committee meetings a year in London, and contribute to papers between meetings
- Travelling expenses to meetings will be paid.
If you would like to know more, please call Nickie Roberts, Executive Director on 020 7940 4135. Further details about the Trust and MSA can be found throughout this website.