Multiple System Atrophy Trust 2nd MSA Needs Survey Publication
Multiple System Atrophy (MSA) is a rare progressive neurological condition that affects adult women and men. It is life limiting and causes problems with movement, balance, and autonomic functions of the body such as bladder and blood pressure control.
There are an estimated 240 people living with MSA in Scotland but as diagnosis is complex many will be as yet undiagnosed. Our MSA Nurse Specialist for Scotland is Katie Rigg and she can be contacted by emailing katie.rigg@msatrust.org.uk
The MSA Trust has recently conducted our second MSA Needs Survey looking at the needs and experiences of people affected by MSA.
To capture as many responses and experiences as possible we ran three questionnaires – for people living with MSA, for carers and for people who had previously cared for a loved one with MSA. A total of 520 people responded.
In common with our previous survey, we found that, not surprisingly, MSA has a severe negative impact on quality of life. In addition to being diagnosed with a rare progressive life limiting condition, people’s physical and emotional needs posed severe challenges which were often not sufficiently supported by Health and Social care services.
We looked at issues that reflected the key areas reflected in the National Rare Conditions Strategy. Headlines included:
· Half of people with MSA said it took between 2 to 4 years to get a diagnosis, some reported even longer. Parkinson’s and Ataxia were the most common initial diagnoses. Balance, walking problems and low blood pressure were the top symptoms prompting people to first seek medical help.
· Over half reported that their GP and practice did not understand MSA.
· Care co-ordination was severely lacking with ¾ of respondents saying they had nobody to co-ordinate their care locally. Only one in ten had been offered social care support despite the vast majority of respondents having severe issues with daily living.
· There were varied preferences when asked about face to face or “virtual” appointments with people saying it depended on what the appointment is for. Many faced difficulties in attending face to face, with lack of parking and transport being cited. Only 20% of carers said that their needs were considered at appointments, despite their role often being so pivotal in supporting people with MSA. 85% of people with MSA said they had never been offered MDT support.
Other key findings included the significant strain faced by carers, physically and emotionally, the increasing isolation experienced by families as MSA progresses and the great value of discussions with HCP around end-of-life choices and early palliative care. The full technical report can be found here: https://www.msatrust.org.uk/cause-and-cure/research-news-2/msa-needs-surveys-22/
The results of the MSA Needs Survey will directly influence the MSA Trusts organisational strategy for the next four years. This will include service development, new project work and using evidence for policy work in the wider charity and health and social care sectors.
If you would like more information or would like to speak to us about how you might be able to help improve support for people affected by MSA we would be delighted to hear from you. Please email support@msatrust.org.uk
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