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.
Our research and reports
1. NAoS Carer's Centre Mapping Project (2023) presents the findings of how our member charities work in with Carer's Centres across Scotland and which Carer's centres have information regarding neurological conditions and refer individuals and families towards individual charities.
As a result of our report, we are working to implement some short, medium and long term goals in order to strengthen relationships between charities and carer's centres across Scotland.
Mental Health Awareness Week 2023
by Alice Struthers, Programme Director, Neurological Alliance of Scotland
This Mental Health Awareness Week (15 – 21 May 2023) we want to focus on everyone who lives with a neurological condition, many of whom struggle with their mental health.
There are an estimated 600 neurological conditions, many of which are rare and difficult to diagnose. Some, like multiple sclerosis, epilepsy and ME are fluctuating, so people live with a sense of not knowing when they might have a relapse or have a seizure, or if they are in a relapse, when they might start to feel better. Some neurological conditions are life-long, like cerebral palsy, spina bifida and muscular dystrophy, all of which cause disabilities that also have a huge impact on families and care givers. Some, like dementia, Motor Neurone Disease and Parkinson’s are degenerative and rob the person of their independence, mobility and mental cognition over time.
Raising Awareness and support for those with Multiple System Atrophy (MSA)
Multiple System Atrophy (MSA) is a relatively rare neurodegenerative condition that may affect anyone from the age of 30 years old, though most commonly people are in their mid-50s when diagnosed. There are thought to be around 4000 people at any point in time across the UK and Ireland who have MSA.
Scottish Parliament debate led by Alexander Burnett
The Neurological Alliance of Scotland with colleagues visited the Scottish Parliament on Tuesday 15th November 2022 as Alexander Burnett led the debate for Improving Outcomes for People with Neurological Conditions and highlighting the 1 in 6 report.
See the link to watch the debate in full.
And the transcript of the meeting is in the link below.
Meeting of the Parliament: 15/11/2022 | Scottish Parliament Website
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