MSA Trust Impact Report 2020 - 2021

Impact Report 2020-2021

“There’s nothing easy about living with MSA, but knowing the Trust is always available makes the burden so much lighter.”

Welcome to our Impact report for 2020-2021 W

hat a year we have all had. I hope that all our amazing MSA community have felt supported and helped throughout this difficult time. Here at the Trust, we have been kept very busy. We made lots of adaptations and altered the way we operated to meet the demands of working in a pandemic. We found new ways of keeping in touch with members, their families, their carers and the healthcare professionals, who were working so hard to keep people safe.

During this period, with our partners at the Association of British Neurologists, we successfully recruited a new Clinical Training Research Fellow. We were greatly impressed by our dedicated researchers who received approval for our funding for four new projects just days before the lockdown began. They were all able to confirm that their work was underway by Autumn 2020.

On the following pages we will tell you about the people from our community who helped us to maintain our services, supported us to develop new ones and gave us the financial security to be able to keep our core support operational. We hope you will enjoy reading about what we did and give yourselves a huge ‘pat on the back’ for helping us to achieve as much as we did.

Thank you for all your good wishes and support throughout 2020-21, we could not have managed without your help and words of encouragement. I hope we can continue to meet your needs and respond to your queries throughout this current year.

This report covers almost exactly the period since the first lock down at the end of our last financial year to the end of this financial year, 31st March 2021. I hope you will find it interesting, informative and most of all appreciative of all our incredible supporters who helped the Trust to maintain it’s services and “grasp the new” so well.

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Despite the fact there has been a pandemic , at MSA Trust our core work has carried on.

I truly look forward to reporting on a nonlockdown year next time.

With very best wishes

Karen Walker Chief Executive

Our work in the pandemic

T

he Information and Services Team stayed incredibly busy throughout the year. Initially when everything was still so unknown, and people affected

by MSA were rightly concerned, they provided information on our website about COVID-19. This was regularly updated as the situation changed during the year, informing people where they could get support and guidance.

Digital Support Groups were quickly established, in order to replace the loss of faceto-face meetings.

These proved invaluable to members who are often already isolated and needed mutual support, understanding and friendship in uncertain times.

We continued to produce our MSA News magazine, and ensured this contained relevant information about life with MSA as well as the current pandemic situation.

Our Social Welfare Specialist was instrumental in contacting everyone we knew that was living alone, to ensure they were aware we were available to talk and to support wherever we could.

Our new Information and Services Strategy launched in April 2020. This meant that we dived into developing new services, despite the pandemic, ensuring we consistently expand to meet member needs.

Our Year in Numbers

627

new members

1547

people living with MSA were supported

268 community

107 Volunteers continued to help us

active members on our MSA HealthUnlocked

Our MSA Nurse Specialists Responded to

Attended

calls and 19,442 emails

specialist clinics online

2,163 56

15

Virtual training sessions delivered

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Our Information and Support Services

5

new information materials were published and we gained accreditation to the Patient Information Forum (PIF) Kitemark

Our Social Welfare Specialist supported 268 individuals with care support, adaptations, welfare grants and benefits Working with the National Congenital Anomaly and Rare Disease Registration Service (NCARDRS) to ensure accurate data reporting of people living with MSA

New resources

This year we have begun development on a wealth of new resources. These include: A new website resource to support people in Planning for the Future The launch of our first webinar which covers an Introduction to MSA Support for people and their emotional needs, available on our website A pilot befriending service for people living with MSA and Carers.

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We connected with over 300 people online during our Digital Support Groups, Carers Meetings and Coffee Mornings

38

people recorded their voices with our new Voice banking service through Acapela

83 digital support groups run via Zoom

4,815

enquiries to our MSA Trust office support line

Fundraising in challenging times Our Fundraising Stars have enabled us to continue our vital work, from virtual challenges to collections - they did it all! Here are some highlights :

Head shave for MSAT raised over £10,000.

The 2020 London marathon was cancelled, but that did not stop our 'home-based heroes', who came together for the 2.6 Challenge and raised close to £5,000 through activities such as completing a marathon virtually as a family!

With massparticipation events cancelled, supporters looked to local or virtual events to reach their fundraising goals.

From walks covering 100K in 10 days, to virtual cycling and our very own Miles for MSAT challenge They did so much!

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Well done everyone We had a fantastic response to our BBC Radio 4 Charity Appeal given by our supporters, Paul and Gill Wheeler for our MSA Nurse Specialists. Over £32,000 was raised! Our Big Give Christmas Challenge this year brought in close to £10,000 for our voice banking project.

With funeral services restricted, supporters made donations to online tribute pages, contributed to our memorial event, MSA Candlelight, and raised more than £150,000 to honour loved ones lost to MSA.

As an independent charity we rely entirely on charitable donations to carry out our work. In this time of unprecedented changes and exceptional challenges, we are extremely grateful to our supporting charitable trusts and foundations for their continued generosity, including: T he London Community Response Fund and the City Bridge Trust

T he National Lottery Coronavirus Community Support Fund T he Charities Aid Foundation’s Covid-19 Response Fund The Boshier-Hinton Foundation The Garfield Weston Foundation The Eveson Charitable Trust.

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Research in the time of pandemic

2020-21 has remained a busy year for research in MSA:

4 research projects awarded by the Scientific Advisory Panel in March 2020

A recruitment round with the Association of British Neurologists to find a new Clinical Training Research Fellow

A funding partnership with Manx MSA Trust to support one of the research projects

A presentation on our research study into patient needs at the MSA International virtual Conference in February 2021.

Also presented at the MSA Coalition’s Patient conference in October 2020

An extension to our current research Fellow's contract approved.

A re-design of the Research Hub on MSA Trust’s website www. msatrust.org.uk/ cause-and-cure/ Full of information on current research, past research, the drug pipeline for treatment of MSA, we would urge you to take a look and see what is happening in the world of MSA research.

How we have managed our finances through the pandemic As in previous years the following information is based on the management accounts and not the final audited accounts. These will be available following Trustee Board approval in September 2021 and will be highlighted on the MSA Trust website. We like to keep you informed and ask that these accounts are viewed as they are intended – a guide to our financial activity throughout the year.

Income and Expenditure 2020-2021 (excluding research projects)

7%

13%

21% 26%

15%

Operational Income 2020-2021

11%

Operational Expenditure 2020-2021

20%

2%

5% 11%

28%

41%

Total Operational Income (excluding Legacies)

£800,000

Charitable Trust income Community fundraising Corporate giving Donations Event income Merchandise and Other income

Total Expenditure

(excluding Research projects and Fellow)

£626,500

Governance Admin costs Research general costs Welfare and advocacy Information and support services Frontline support services

To find out more www.msatrust.org.uk 0333 323 4591 support@msatrust.org.uk

www.facebook.com/MSATrust1 twitter.com/MSAtrust www.instagram.com/msatrust

The Multiple System Atrophy Trust is a charity registered in England as a limited company.

Company Registration No: 7302036. Registered Charity No. 1137652 (England & Wales) and SC044535 (Scotland)