Needs Survey

Focusing on the Rare Disease Framework we held our second Needs Survey. We share some of the important findings below.

The results will directly influence the Trusts organisational strategy for the next four years. This will include service development, new project work and impact on policy work in the wider charity and health and social care sectors.

Needs Survey Respondents

People living with MSA

Current carers

People who had previously cared for someone with MSA

We received 520 responses to our second MSA Needs Survey of which 41% were people living with MSA.

The results indicate that the majority of people (73%) say that MSA severely impacts their quality of life but the support they receive is very limited.

49% of people living with MSA said it took between two to four years after experiencing symptoms to get their diagnosis. Some reported even longer.

“ Every time we talk/see the doctor we have to explain again about MSA symptoms and the disease, it is very frustrating.”

Increasing awareness of rare diseases such as MSA, amongst healthcare professionals.

41% of respondents were not given any information about what to expect from living with the condition on the day they were diagnosed.

Improving access to specialist care, treatment, and drugs

82% of people living with MSA felt the MSA Nurse Specialists provide them with valuable support.

Better coordination of care.

Over

Three Quarters

of respondents with MSA stated that no-one coordinates their care locally.

Having the Trust to help is very reassuring, knowing you have always got a nurse specialist who will be able to help you and advise, and the Zoom calls are excellent.

44% of respondents felt help for their physical needs was poor or very poor

For the full results of the MSA Needs Survey 2022, please go to our website or scan the code.

“ I feel that more timely discussions need to be held between health professionals and families about palliative care and end of life care. I planned these and discussed my wife’s wishes. I feel that health officials stay clear of such discussions for their own emotional well-being.”

Sessions focused on the latest basic science and clinical research into MSA:

Other Research News

We awarded almost £448,000 from our Research Fund to four projects, the details of which are on our website, www.msatrust.org.uk/cause-andcure/research-strategy/msa-trustresearch-grant-programme/#tab3

This year we awarded funding to two science based research projects and two clinical projects. If successful this will help to improve services for people with MSA in speech and language and develop a clinical care pathway in dysphagia.

We were incredibly grateful to our researchers, in particular the Principal Investigators who helped us to provide the necessary information to the Medical Research Council. This enabled an award of £237,604 to support the early career researchers working on our projects.