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2015/16 I M P A C T


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What is MND? Motor Neurone Disease (MND) is a rapidly progressing terminal illness, which stops signals from the brain reaching the muscles. This can cause someone to lose the ability to walk, eat, speak and breathe unaided. About MND Scotland MND Scotland is the only charity in Scotland providing care and support to people affected by MND, as well as funding vital research into finding a cure.

Vision MND Scotland aspires to a world without Motor Neurone Disease.

Mission To reduce the impact of MND on the lives of those affected today and provide hope for a world without MND tomorrow.

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Michael Laycock

Chairman’s note

Our amazing progress as a charity goes on and we go from strength to strength. As I write this, the country is in the middle of an election campaign with our new profile ensuring our own Manifesto is being supported by candidates across the country and the political spectrum. Our services continue to grow and develop bringing support to people affected by MND across the country. I wish to express my sorrow of all those we have lost over the last 12 months to MND. It is for them, their families and friends that the fight goes on. I would also like to express grateful thanks to my fellow Board members for their hard work over the last year. The work of the Board would not have been possible without the excellent support and hard work of Craig Stockton, our Chief Executive and all of our staff. I welcome the new staff who have joined us in the last 12 months, and would like to thank the many volunteers who have assisted over the year in numerous ways. Without you all, we would be a

small fraction of the charity we have grown to be over the years. Your efforts have allowed the charity to continue to provide an excellent service to people affected by MND in Scotland, and their families and provide continuing funding for research to work towards finding a cure. Finally, I wish to take the opportunity to thank everybody who has supported me as Chair for the last 6 years. The AGM in September 2016 will be my final duty as Chair as I step down from the role. I believe the charity is in a strong position and I wish my successor and the Trustees continuing good wishes and my support from a distance. Your efforts have allowed the charity to continue to provide an excellent service to people affected by MND in Scotland and fund research to work towards finding a cure.

Alastair Baillie Chairman MND Scotland Board of Trustees

HRH The Princess Royal MND Scotland Patron “Since being named Scottish Charity of the Year in 2015, it is clear that MND Scotland has continued to provide the excellent care and support that led to them being awarded this honour. 2015/16 has seen continued investment in MND research, success through the Let Me Speak campaign and increased awareness and fundraising. A number of events have taken place not only in Scotland but further afield too, with a team of fundraisers climbing Mount Kilimanjaro and raising almost £200,000 in the process. As Royal Patron of MND Scotland, I was delighted to attend an event at Airth Castle in September to hear more about the excellent work of the charity and to hear first-hand experiences from people affected by the illness. I wish you continued success in your work to support people affected by MND across Scotland.” Page | 3

Direct Services Our Direct Services include welfare benefits advice; counselling; complementary therapies; support groups; education sessions for family, friends, carers and health professionals; an information and library service; equipment loan; communication aids loan; accessible holiday accommodation; and grants which can help with costs associated with the illness. See some of the highlights from this year:

Welfare Benefits

£1,359,568 awarded in welfare benefits



people affected by MND used our welfare and benefits service


sessions of counselling were delivered


people used the counselling service

“Counselling really helped me to come to terms with my husband’s diagnosis. It was an outlet to share my fears and anxieties with someone outside my own family, and help me deal with these head on.” - Vivian Laycock

“MND Scotland’s Welfare & Benefits service has been a lifesaver. They have been so supportive and have helped us fill in complicated forms, which has lifted a huge weight off our shoulders.” - Dawn Morton Page | 4

Complementary Therapy



people were provided with

sessions of complementary therapy

“The massage sessions I received were very relaxing and really eased the tension, especially in my legs and feet. It was a huge benefit to me and I would always have a great night’s sleep afterwards.” - Kay Sinclair Support Groups


people attended our support groups over



“Being able to meet and discuss the illness with others directly involved is very helpful. It brings home that the disease affects everyone differently. There is encouragement to keep going, tips on how to cope with difficulties and reminders that you can get help if necessary.” - Allan Barr Page | 5

Information and Education

120 information enquiries responded to


education sessions delivered to 765 people

“MND Scotland is a great hub of information – they have leaflets and lots on their website, and I’ve been to an information session. I was able to find out about my dad’s illness, get hints and tips and read about the services provided across the country in one easy place.” - Graham Bryce

Accessible Holiday Accommodation

“It is very difficult to find accommodation that is adapted for someone with a disability and it was really nice to get the chance to have a break away from home, knowing that things were in place at the caravan to let us enjoy quality time away as a couple.” - Jim Grant Page | 6

32 people affected by MND stayed in our accessible caravan in Fife

63 people affected by MND took a break at our accessible chalet in Oban

Equipment Loans


items of equipment loaned to 59 people


people borrowed communications equipment

“Eye Gaze has allowed me to stay in employment and keep in touch with family and friends through social media and email. Without this communications equipment I would be cut off from normal daily life.” - Mark Craig




people received a grant with a total of

“This was a very helpful service and one that we all appreciated. It allowed us to spend quality time together as a family.” - Time Out Grant

“The grant made a massive difference. Without it, Brian would still be sleeping on a mattress on the floor. As he now has to sleep with his head raised he is getting better quality sleep.” – Equipment and Adaptations Grant

being awarded

“It gives me peace of mind knowing our dog is being walked regularly and is having fun, like we had together in the old days.” - Small Grant used for professional dog walker

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Campaigns and Awareness MND Scotland strives to give a voice to those affected by MND who would otherwise not be heard, to raise awareness of the disease and to promote an understanding of the issues they face. This year’s highlights were: Let Me Speak In June 2015, we launched our Let Me Speak campaign, which highlighted the need for a statutory duty to supply communications equipment to those who need it. This would mean people with MND who have lost their ability to speak or write could rely on the NHS to provide communications equipment rather than having to buy it themselves or borrow it from MND Scotland. As a result of our campaign, with the backing of the First Minister and other party leaders, the right to receive communications equipment became law in March 2016.

“Having access to a communications aid will give people with MND their voice back. What has really set me free is the use of my phone and iPad to speak through voice Apps. I was always a chatterbox so being able to communicate with my family and friends has been a real life-line for me.” – Liz Ogg

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Manifesto for People Affected by MND

Highlights include:

We produced our Manifesto for People Affected by MND and sent it to political parties asking them to consider it in their own manifesto development for the 2016 Scottish Parliament elections.




the main parties included aspects of our manifesto into their own

MND research PhD studentships

Our four key asks were: • Prioritise research into MND • Ensure the needs of those affected by MND are met now • Support carers • Alleviate the financial burden of MND


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The SNP, Scottish Government, committed to funding

More than


candidates pledged their support, of which, half were elected

“MND Scotland’s Manifesto for People Affected by MND ensures that all MSPs, new or returning, have a greater understanding of MND, the needs of people affected by the illness and what they can do, as politicians, to help improve their lives.” – Christina McKelvie, MSP

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Supporting people affected by Motor Neurone Disease

Awareness raised Since the Ice Bucket Challenge in 2014, awareness of MND has increased dramatically. During 2015/16 we sustained this heightened awareness and here are some highlights:



printed and online press articles...


Facebook posts...

...potentially seen

300,000,000 times

...actively engaged with over

200,000 times

750 Tweets...

33,000 people visited the MND Scotland website

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...actively engaged with

30,000 times

...who viewed the website pages

145,000 times

“When I tell people I have MND, I no longer need to explain it in the way I used to. I think because of the recent increased awareness, people already have a bit of an understanding of the illness.” – Lucy Lintott

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“It makes me immensely proud to know that research is happening today, as we speak, that simply would not have been possible without vital funds to MND Scotland. Together we have brought forward the day we live in a world free from MND. It might be too late for me, but by investing in research we can, we must and we will find a cure for future generations.” – Gordon Aikman, MND campaigner and MND Scotland Trustee

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Research MND Scotland funds research across the UK to help take us a step closer to finding a cure. Over £400,000 was invested into 4 cutting edge research projects:

MND Clinical Research Fellowship

Scottish MND Register

Future MND

The Edinburgh Motor Assessment Scale (EMAS) Validation study

“It is a very exciting time to be involved in MND research. New discoveries give hope to our research teams and we want people with MND in Scotland to be able to share this hope. I am extremely grateful to everyone who has raised funds for MND Scotland – your continued help and support underpins all our work.” – Danielle Leighton, MND Clinical Research Fellow

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Fundraising This year, for every penny spent to support MND Scotland fundraising activities, we received 5.5 times as much back.

413 events

Income spent:

2,701 fundraisers

ÂŁ922,144 raised

Sources of income:

Holyrood Fun Run

Direct Care Services Grants to Individuals Research Grants Direct Information Services

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Donations Trust Membership Legacies Rental Income

Fundraising Corporate Grant Income Education Income Tax Reclaimed

Bank Interest

Other Income

Melissa Robertson

“I have seen first-hand the devastating effects of MND. My husband, Mark, was diagnosed with MND when he was 38 years old and since then I have been fundraising for MND Scotland. Knowing that the money I have raised has gone towards funding essential services for people affected by MND and research to find a cure means everything to me.” - Charlene Craig, MND Scotland fundraiser

Trusts and Foundations Trust funders remained a key source of income in 2015/16 and we extend our warmest thanks to all those listed below: • Albert Hunt Trust • Andrew Paton’s Charitable Trust • Appletree Trust • Bank of Scotland Foundation • Broughton Charitable Trust • Cruden Foundation • DWT Cargill Fund • David Stevenson Trust • Dunclay Charitable Trust • Evelyn Drysdale Charitable Trust • Gamma Trust • Heather Hoy Charitable Trust

• • • • • • • • • • • • • •

IBB Trust J & J R Wilson Trust J K Young Endowment Trust JMA Trust JTH Charitable Trust James Wood Bequest Fund Leng Charitable Trust Lynn Foundation Mrs M A Black’s Charitable Trust M V HillhouseTrust Margaret Murdoch Charitable Trust Martin Connell Mary Leishman Foundation Mickel Fund

• • • • • • • • • • • • • •

Netherdale Trust Northwood Charitable Trust P F Charitable Trust Peter Brough Bequest Fund Princess Anne’s Charities Trust R J Larg Family Trust Ronald Miller Foundation St Katharine’s Fund Sir Iain Stewart Foundation Sir James Miller Edinburgh Trust Souter Charitable Trust Talteg Limited Tay Charitable Trust Templeton Goodwill Trust Page | 15

Team Kilimanjaro 2015

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Kilimanjaro In September 2015, our team of

28 fundraisers...

...climbed the world’s highest freestanding peak at

5,895m... ...with

6 days

of back to back climbing, sub-zero temperatures and very thin air.

An incredible


was raised, and we are truly grateful to everyone who took part in this.

“The day my dad died was the day I saw the advert for Kilimanjaro and I signed up straight away. I had climbed Ben Nevis a while before this to raise money for MND Scotland and my dad thought that was an amazing achievement, so I just wanted to do something even bigger in his memory. “My brother and I were heavily involved in my dad’s care, so training and fundraising for Kilimanjaro became a way to fill that void and still feel like I was doing something to help. The experience itself was unbelievable. It was challenging, there is no doubt about that, but I have made some friends for life and will never forget it. When it was over it felt like closure on everything we had gone through.” - Niki Johnstone (pictured left)

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Accounts table A summarised statement of MND Scotland’s financial activities for the year ended 31st March 2016:

2016 Income: Donations & legacies Fundraising activites Investment income Gain on fixed asset disposal Total Income Expenditure: Raising funds Charitable activities Total Expenditure

Net Income/ (Expenditure)

2015 £






















For a full copy of MND Scotland’s accounts please visit or email Page | 18

Jim Brown

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2nd Floor, City View, 6 Eagle Street, Glasgow, G4 9XA

Founder: John Macleod


Royal Patron: HRH Princess Royal

0141 332 3903


Designed by

Company limited by guarantee, registered in Scotland. Company number SC217735. Scottish Charity number SC002662.

MND Scotland Impact Report 2015-16