Spotlight on: Multiple System Atrophy (MSA) Trust

Report - 1 February 2019

The Multiple System Atrophy Trust is the UK’s leading charity supporting people affected by multiple system atrophy (MSA) – a rare neurological disease with no known cause or cure. We spoke with a support group to hear their stories and experiences.

The Trust’s Vision is a world free of MSA. Their Mission is to find the cause and, ultimately, cure for MSA. Until that day, they do all they can to support people affected by MSA and strive to ensure that they are not alone on their individual journeys.

The Sussex Support Group covers both East and West Sussex and hold free meetings
quarterly at Worthing Quaker Meeting House Worthing BN11 5DR.

The key topics people from the MSA support group chose to speak to Healthwatch about were:

  • Understanding the MSA services
  • Difficulties in accessing condition specific GP’s and local Parkinson’s Nurse Specialist
  • Unclear communication by health care professionals
  • Support for Carers

The insight from each person was collated and anonymised and forms part of the insight and evidence that Healthwatch gather to identify common themes around what works and doesn’t work for local people.

Downloads

Spotlight on MSA Trust
Download (PDF 222 KB)

If you are setting up or would like to share news of a similar project
we would be interested to hear from you. Please contact Cheryl Berry,
Partnership Co-ordinator

 cheryl.berry@healthwatchwestsussex.co.uk

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