Campaign by Story
Why we need your support
Our most recent Needs Survey revealed alarming gaps in the support and understanding of MSA
• 56% of people said their GP and practice did not understand MSA
• 41% felt that on the day they were diagnosed they were not given any information about what to expect when living with MSA
• 80% of carers felt their needs were not considered during clinic appointments
• 34% of people were not referred to any specialist palliative care or hospice support
Every time we talk/see the doctor we have to explain again about MSA symptoms and the disease, it is very frustrating.
No support about what to expect and limited advice on all aspects.”
These figures show a pressing need: HCP’s must receive better training and awareness to effectively support people with MSA and their carers.
What we are doing
Thanks to generous supporters, the Trust already provides education and training sessions for health and social care professionals, delivered by our expert MSA Health Care Specialists.
Thank you for putting on the event. I think it makes a big difference having something like this. As a professional working with people with MSA it is not always easy finding information that is relevant. The MSA Trust offers such a good resource.
I think I can honestly say this has been the best, most informative, insightful and well-run course I have ever attended. I arrived with so little knowledge but am feeling empowered and well informed. Thank you so much.
Just great, my patient was so happy I was doing this and looking forward to me giving her an update.
But we want to do more. Next year, we are launching a new online training module alongside the Neurology Academy. This will help doctors, nurses and other professionals understand MSA’s complexities and impact.
Why it matters
MSA is a rare, complex condition that many professionals will not have encountered before. Without training, people with MSA and their families often face delays in diagnosis and their care and the added stress of having to explain their condition repeatedly.
For people with MSA and their families timely, informed care can make an enormous difference.
• Robust training ensures HCP's can provide timely support, tailored to the needs of those living with MSA.
• Better awareness means more sensitive and knowledgeable consultations.
• Earlier, compassionate conversations lead to improved planning and emotional support.
It was amazing to be able to hear from someone who understood the issues my mother was having with MSA when so many doctors didn’t have a clue about the condition.
This pack was so helpful when my husband was in hospital. I put it in the same folder as his hospital notes so they could be seen several times a day. It helped the staff to understand what MSA is and make allowances for it.
How you can help
• A gift of £10 can help develop and pilot the new training module.
• £25 can fund workshops for healthcare professionals across the UK and Ireland
• Any amount helps fund the continuation of our HCP training and awareness programme.
This Christmas, your generosity can transform MSA care. You can help ensure every interaction between HCP’s, people affected by MSA, and their carers is more informed and compassionate.