Spotlight on Multiple System Atrophy Trust
only registered charity in the UK dedicated to providing specialist support to all those affected by MSA: their families, carers and the healthcare professionals they come into contact with. The MSA Trust now has over 6,500 members who benefit from accessing its free services.
Multiple System Atrophy (MSA) is an indiscriminate neurodegenerative disease. Affecting both men and women, its cause is unknown. There is no cure. Over only a small number of years a person with MSA will slowly become trapped in their body, unable to walk, talk or swallow. Neither intellect, nor the ability to feel pain, diminishes in any way. Due to its appalling symptoms, social interaction for both the person with MSA and their carer can be highly restricted and this, coupled with the fact that many people have no knowledge or understanding of MSA, often leads to isolation and depression. Average lifespan from symptom onset is just over seven years, and almost 80 percent of people are disabled within five years.
The MSA Trust is also the UK’s primary funder of medical research to find both the cause of, and cure for, this atrocious disease. They are incredibly conscious that their members need as much information and support as possible, while coping with the financial burdens of a terminal diagnosis. Therefore all services from the MSA Trust are delivered to families with MSA without charge, including the nurse service.
Club Peloton’s involvement with the MSA Trust stems from Peter Murray, Chairman & Co-Founder of New London Architecture. Peter lost his brother to MSA which spurred him on to do a LEJOG and then set up Cycle to Cannes (now Cycle to MIPIM), Club Peloton’s first and original fundraising challenge event, in 2006.
The valued support of Club Peloton over the past 10 years and their incredible fundraising efforts have raised over £350,000 for the charity. This has enabled the MSA Trust to expand its MSA Nurse Specialist scheme: it costs the Trust £231,153 per annum to employ four MSA Nurse Specialists and employ a social welfare specialist.
Supporting the MSA Nurse Specialist Scheme
The majority of members have never heard of MSA when they, or their loved one, is diagnosed. Aside from extreme anxiety caused by the grim prognosis, so many say how they feel isolated and very alone – unable to fully describe what they are going through to their family and friends, let alone more casual acquaintances.
This is where the MSA Nurse Specialists become truly invaluable. They strive to reduce the desperate isolation and uncertainty of living with such a rare disease, and all their members have contact with the nurses, who provide symptom management advice, practical help and reassurance.
Such contact can be as fleeting as one telephone call after initial diagnosis, or more usually, it takes the form of continued support via their regional groups, MSA clinics and regular correspondence.
The MSA Nurse Specialist scheme:
Throughout 2019, the nurses worked under significant pressure and collectively they were able to:
- respond to over 2,400 telephone calls from members seeking guidance and support
- respond to over 10,080 emails: this being increasingly important for members with an MSA diagnosis as they often have little or no speech
- direct over 500 enquiries to their Social Welfare Specialist, to ensure that members with MSA are claiming all benefits they are entitled to
- attend 136 regional support group meetings throughout the UK and Ireland
- deliver 33 training sessions to educate over 900 health and care professionals on MSA symptom management
- present at the Trust’s Health and Care Professionals day in Newcastle
- attend policy meetings in Ireland, Scotland and Northern Ireland, giving the Trust a visible presence in these countries
- attend 95 Movement Disorder Clinics throughout the UK
During 2020 the MSA Trust is looking to expand these services with additional support groups, more Movement Disorder Clinics and faster response times to queries. As the MSA Trust receives no statutory support and relies entirely on donations for its work to continue, they are exceptionally grateful for the ongoing support of Club Peloton.
“To all of the riders, Trustees and members of Club Peloton we salute you, thank you very much.
“Club Peloton have been incredible supporters of the MSA Trust for over 10 years. MSA Trust appreciates the amazing support we receive from riders in all the events they do. Without them MSA Trust would have been unable to develop its services at the rate that we have, increasing year on year the support and help for all those with MSA in the UK and Ireland. We now reach over 80% of newly diagnosed people with MSA. This is an incredible rate for a rare disease charity and is in no small part down to the sterling efforts of Club Peloton. So you have our heartfelt thanks for all that you do to raise funds.”
Karen Walker, Chief Executive MSA Trust