A N N U A L R E V I E W 2 0 2 0 / 2 0 2 1 Foreword 02
Helpline and Information 04
Dedicated Communications 06
...... Wellbeing 08
Youth Services 10 Epilepsy Scotland works with people Fundraising 12 living with epilepsy to ensure their Training 14 voice is heard. Welfare Rights 16 ...... Policy 18
Income and expenditure 20
The Year Ahead 21
Thanks to… 22 MESSAGE FROM OUR CEO
This year has been a year like no other. For Epilepsy Epilepsy Scotland has received vital support from Scotland, it has been a combination of challenging, individual fundraisers, Trust Funds, and corporate busy, and exciting. It has also been a time of organisations over the past year. Without the flexibility of ...... opportunity. The COVID-19 pandemic affected us all all funders, we would have been unable to respond to individually and collectively. Our work and how we do it, the challenges and inevitable changes in the way we our personal lives, and our communities, all impacted by have. Your continued support and adaptability allowed the pandemic in some way. us to continue to provide a high level of support to the epilepsy community, improving the lives of those we However, despite the unprecedented challenges, represent. For all that, I thank you. Epilepsy Scotland swiftly responded and adapted. Our talented team continued to champion epilepsy and Change and challenge is never easy. This year has support people affected by the condition, especially provided change and challenge in abundance. In spite of when the impact of the pandemic was a significant ...... that our dedicated, passionate supporters have been consideration. inspirational in their efforts. Their generosity through volunteering, fundraising, and so very kindly In 2019, we celebrated 65 years of providing support to "Changing remembering us through legacies is hugely appreciated. Lesslie Young those living with epilepsy. Our 2018/19 Annual Review with the CEO highlighted our adaptability, commenting, 'changing with I have already mentioned the Epilepsy Scotland team...... the times is a key to success'. This group of extraordinarily talented, creative, and times is a dedicated individuals work tirelessly to achieve the very As I reflect on the past year, it is clear this sentiment has key to best for those living with epilepsy. Equally, our volunteer never been more fitting. I would add it has never been Board of Trustees who give of their time, knowledge, more important to drive that change. We have success." and expertise do similarly and I thank them all. harnessed this opportunity for change, embracing the ...... digital world brought about by the pandemic. We hope to This report showcases some of Epilepsy Scotland’s offer our services in person and virtually in the future remarkable achievements in the past year. I hope you and our staff will be able to work more flexibly, blending enjoy reading our 2020/21 Annual Review. home and office working.
Although the pandemic posed many challenges, we used the opportunity to review our work, make change where necessary and demonstrate our resilience as individual members of the Epilepsy Scotland team and Lesslie Young as an organisation. We learned valuable lessons, many CEO of which will continue to shape our work in the future.
02 Annual Review 2020/21 HELPLINE AND PUBLICATIONS EVENTS Our Helpline and Information team This year we moved our events online. strives to provide current and reliable Adapting with the restrictions of the INFORMATION information. With the everchanging pandemic, we hosted ten virtual ...... nature of the COVID-19 pandemic, information sessions targeting specific HELPLINE demand for information has only health board areas. . ENQUIRIES increased over the past year. ANSWERED Our Helpline and Information team are .1....,..9.....8.....7...... We also held six virtual coffee mornings at the forefront of our organisation. We have kept our existing factsheets and which provided a more informal setting They offer information and support to guides up to date, including our popular for people to come together, share a wide range of people, across Epilepsy Explained guide. We have also experiences, and ask questions. Scotland and beyond...... expanded our publications, adapting to meet new demands: These online events have proved Whether people are in need of general CHECK-IN SERVICE successful, reaching more information about epilepsy or are In response to COVID-19 and the We have produced a new teen guide, geographically diverse audiences. We struggling with their mental health, the additional challenges people were facing, distributed to Epilepsy Specialist look forward to hosting and attending team have proved to be a vital lifeline to we set up a new service to help combat Nurses, families, and young people more events virtually and in person in many throughout the pandemic. Our loneliness, isolation, anxiety and stress. via our youth services. the future. callers agree… We have created a factsheet on Unlike our anonymous helpline, our COVID-19 and epilepsy which is “Thank you so much for your response Check-in Service, developed at the regularly updated. and doing it so, so quickly! This beginning of the pandemic, allows We have produced factsheets on the new Child Winter Heating Assistance definitely reassures me much more… people to register for a weekly check-in call from one of our Helpline Officers to and Scottish Child Payment to reflect It’s good that we have platforms like check on their wellbeing and talk about the rollout of new benefits across yourselves to be able to come for how the pandemic has been affecting Scotland. advice, really appreciate it so much!” their overall health and epilepsy...... Our publications are available to everyone: people with epilepsy, HELPLINE SERVICE PEOPLE employers, teachers, parents and Our helpline service is designed to be as REGISTERED accessible and inclusive as possible. .1.....2...... professionals. An appreciative Epilepsy Specialist Nurse recently commented, People have the option to access this 12 people have registered with the service via our freephone helpline, by service and we have consistently “Thanks very much for the email, through social media and through received great feedback. consignment of Epilepsy Explained text messaging. Our unique service booklets....most useful for people coming allows people to be anonymous and we “Amazing service that really helps, via the First seizure clinic as they never put a time limit on our calls. extremely supportive and understanding are so comprehensive.” with no pressure. With the situation This year, popular topics have included just now I find it a priceless service services and support, benefits, as it has kept me sane and helps with employment, treatment, mental health seizures.” and emotional support, and COVID-19.
November 2020 01 04 01 Annual Review 2020/21 DEDICATED #EpilepsyIsMoreThanSeizures PURPLE DAY National Epilepsy Week, 20-26 May, saw Purple Day, 26th of March, is an COMMUNICATIONS the launch of our important day for Epilepsy Scotland. It is #EpilepsyIsMoreThanSeizures campaign. a day dedicated to raising awareness of Communicating digitally has been SOCIAL MEDIA epilepsy across the world. vital over the past year. We have used Social media has allowed us to keep up to The campaign raised awareness of the our social media platforms to connect date with our followers, helping us to challenges people living with epilepsy This year we enlisted the help of various with the epilepsy community understand the current issues faced by face, including anxiety, low celebrities, including sports presenter throughout the COVID-19 pandemic. people affected by epilepsy. mood/depression and issues with David Tanner, comedians Jane Godley memory. It also explored ways to stay and Ashley Storrie, actor Manjot Sumal, Throughout the year, we have created We have made extensive use of all our safe with epilepsy and cope with side and Scotland rugby player Rory and shared information about epilepsy social media platforms, engaging with our effects of medication. Sutherland, to share videos to help and our services. followers through various campaigns and promote the day and raise awareness of by sharing important information. The campaign featured real quotes and epilepsy. Our Communications Officer, David stories from people we support, Coates, has worked hard to ensure we illustrating their experiences of how Our supporter James also got in on the remain a trustworthy and reliable source epilepsy affects them and the support action, designing his own Purple Day T- of information, keeping people well- they receive to overcome these shirt and wearing it to school! All our social media channels have seen informed about the fast-changing impacts challenges. an increase in followers (1,533 new of the pandemic. followers), with our website recording over 40,000 new users, and nearly 117,000 We have continuously monitored page views. emerging information about epilepsy and COVID-19, regularly updating and Adapting to the changing world, in June sharing our Keeping Safe and Well we joined TikTok to raise awareness of factsheet. epilepsy to a younger audience.
Our Facebook support group has 865 members, providing a space for people to ask questions and find support around On the day, 35 landmarks across #TALKEPILEPSY PODCAST topics related to epilepsy. Scotland lit up purple to raise Our #TalkEpilepsy Podcast provides awareness of epilepsy. This included information and support for people living Edinburgh Castle, the SSE Hydro, and with epilepsy. Over the last year, we Abertay University. produced four podcasts. These were: We also launched a #TalkEpilpesy EPILEPSY AND LEARNING ...... L5ISTE0NS 8 podcast and held a virtual coffee morning...... #..E.p.i.le..p.sy.I.s.M..o.r.e..T.h..a.n.S.e.i.z.u.r.e..s...... LISTENERS FROM: LIVING WITH EPILEPSY PURPLE ...... Scotland, Canada, Argentina, LANDMARKS 35 EPILEPSY AND SPORT Australia, India and the USA ......
06 Annual Review 2020/021 WELLBEING
Our Wellbeing Service aims to support OUR SERVICES AND COVID-19 Feedback from our participants speaks LOOKING TO THE FUTURE the emotional wellbeing of people with This year, more than any other, has for itself. This year we introduced a short 6-12 epilepsy as holistically as possible. presented challenges to our participants’ week Wellbeing programme which we wellbeing. Worries about COVID-19, ...... are piloting with referrals coming directly We recognise a diagnosis of epilepsy can financial pressures and not being able to of our participants found from NHS Lothian Neuropsychology affect someone’s mental health and see family or friends has made us feel 100% the wellbeing support clinics. This is working well and we hope when someone’s mental health is more anxious and stressed than ever ...... helpful...... to continue and expand this model of affected, often too is their epilepsy. before. working in the coming year.
felt it helped their feelings By providing counselling, one-to-one of isolation and anxiety We recognised the pandemic would have ..9...4...%...... In September 2020, we were able to work, information, breathing and a massive impact on our participants and begin to offer a blended service, with relaxation classes and peer support quickly adapted to deliver the majority of felt it helped with their group sessions and one-to-one groups, our service empowers our service digitally. concerns about COVID-19 appointments being held physically and ..7...5...%...... participants to deal with the challenges of virtually. their diagnosis and its impact on their Within two days of the lockdown would not have had any emotional wellbeing. announcement in March 2020, we had other support if the This has worked well for many of our called every one of our participants and 40% Wellbeing support hadn’t participants and has allowed us to We work in a person-centred way with ensured they were well, had the support ...... been...... available...... expand our reach. We are now working participants able to opt in to as many they needed, and had access to their with five times as many people from services as they wish. Many, after a prescriptions and shopping. outside our Glasgow base as we were while, receive training to become a “Thank you for yesterday, it was nice before the pandemic.
Buddy Volunteer, supporting new
By the beginning of April, we were to feel like I was heard. I’m feeling ...... participants when they first join a group offering our one-to-one services, . much more positive – it’s the first and facilitate discussions. breathing and relaxation classes, and positive interaction I’ve had in a long MORE PARTICIPANTS peer support groups virtually and by FROM OUTSIDE
Thanks to the generous support of the time. It’s given me the energy to
telephone. GLASGOW ...... National Lottery Community Fund take issues on head on.” 5x . Scotland, we have been able to provide our Wellbeing Service for the last three “As I have very limited family support As we go into the next year, we will years. – I fear that I would not have been continue to offer this blended model, able to cope – mentally – without the continuing to develop the service to best support from Bruce & the Wellbeing respond to the individual needs of our service at Epilepsy Scotland. Bruce participants. . . . . was extremely supportive and basically ...... helped me through the lockdown. I ...... really don’t know what I would have ...... done without the support. Thank you.” . . . 54 . 1,056 157 . PARTICIPANTS . 1-TO-1 SESSIONS GROUPS HELD . .
08 01 Annual Review 2020/201 YOUTH YOUTH GROUPS HOLLY'S STORY Our youth groups aim to provide a safe Holly was encouraged to join our youth SERVICES space for young people to meet others services by her mum. Holly had recently who have epilepsy, so they feel less alone been diagnosed with epilepsy and the fear of and can share their experiences. seizures was overwhelming. Her attendance at school dropped and she no longer wanted We strive to create a varied programme of Our dedicated Youth Service provides to socialise with her peer group. Stress was activities, responding to participants’ support and social opportunities to interests and abilities, to build their a big trigger for her seizures. young people with epilepsy in independence and confidence. Scotland. Building a relationship with Holly “She had lost her wee sparkle for months through one-to-one support and It has been a year like no other for our there and I couldn't figure out what providing a space to learn more about Youth Service. At the beginning of 2020 caused her to lose that amount of epilepsy helped ease some of her our Youth Service in Glasgow restarted confidence but over the past few weeks, stresses. Holly developed enough with Shelby Johnston at the helm. This ONE-TO-ONE SUPPORT I can see it, it's back. This group is confidence to attend our youth group now runs alongside our Edinburgh Our one-to-one support is driven by the making such a difference for her. I can which began to break down some of service, led by Kirstyn Cameron. individual’s needs. We focus on all see the sparkle in her again" (Parent her fears and, for the first time aspects of the young person’s life which Feedback) since her diagnosis, she didn’t feel We quickly adapted to the pandemic and may be affected by their epilepsy. Our online activities included scavenger alone. continued to provide support and social Attention is often given to mental health, hunts, quizzes, memory tasks, film nights, opportunities to young people with memory, sleep, learning and friendships. Learning more about epilepsy and epilepsy throughout. We began to deliver escape rooms and cooking. Groups re- started in person towards the end of 2020 having the space to explore it with our one-to-one support and group “It's hard to put into words just how whilst we continued to run online other young people has helped Holly’s sessions online for the first time, grateful I am. [My son] has a plethora of sessions. Activities in these sessions stress and anxiety - she is now 1 year adjusting our work to ensure we provided health conditions and has been through so included making tie dye T-shirts, cycling, seizure free! the much-needed supportive, fun, and much in his life. He's taken everything in tubing, and creating memory boxes. safe service for young people. his stride... until Epilepsy reared its ugly head, that is I have never seen him so “I like that they are so welcoming and GOING FORWARD This year, between April 2020 and March anxious and stressed but his regular chats We set up a new group of Young always make me happy and smile and laugh. 2021, we have supported 83 young with Kirstyn worked absolute wonders- so Ambassadors to help develop our services so I am thankful to have the youth group in people. thank you so much.” and to raise the voice of young people with ...... my life.” ...... epilepsy. In January, the group virtually met YOUNG PEOPLE SUPPORTED In August we took our residential weekend with the Epilepsy Warriors, an organisation of young people thought the 83 online for the first time. A pizza was based in Malawi, and they are currently ...... support had helped them delivered to everyone and we watched a consulting on our Epilepsy Awareness talks 78% increase their confidence. ONE-TO-ONE MEETINGS film together. On the second day we ...... for schools. 595 enjoyed a workshop with a professional ...... of young people had made new animator and then had a murder mystery Looking forward, we are likely to offer some YOUTH GROUPS HELD 84% friends through the groups...... night to finish off the weekend. form of digital support as a permanent 1....5...0...... of young people thought the feature of our services. We have been able We are very grateful for the support from groups had helped them deal Throughout the year we have also to welcome new participants who couldn’t Children in Need, National Lottery, 61% with their worries about COVID- delivered activity packs and letters to travel to our physical groups and hope to Shared Care Scotland, RS MacDonald ...... 1.9...... participants, including those who are continue to expand our reach in the future. and the John Watson Trust. unable to access groups sessions online.
10 Annual Review 2020/21 FUNDRAISING OUR KILTED HEROES COMMUNITY FUNDRAISING Our dedicated supporter Jennifer While most of us were hibernating at the Our fundraisers were hugely CHARITABLE TRUSTS Henderson came on board in 2016. beginning of 2021, Scott Ashworth was encouraged by the determination of We are extremely grateful to all the Jennifer was proud to represent Epilepsy gathering people from all over the world to Epilepsy Scotland supporters who charitable trusts and foundations that have Scotland at the Edinburgh Kiltwalk. When tune in for his online open-mic nights. continued to fundraise, take on supported our work over the course of this asked how she found the challenge, she Scott told us: challenges, and host their own virtual turbulent year. Thanks to the kindness and told us: events throughout lockdown. We are understanding, flexibility, help and support “I have been doing live feeds so grateful for your support. offered by funders, we are in a good "I was doing it for my girls and throughout the COVID-19 situation, position to confidently continue to deliver Epilepsy Scotland, that got me and decided to do this one slightly 2020 was a challenging year for our our services and be there for people powering on!" different - rather than people just fundraisers. We really missed being out affected by epilepsy. making general donations, this time they in the community, meeting people at The Kiltwalk is now a permanent feature could request a song for a minimum collections and events. We know how Your support has helped us learn, adapt, in Jennifer’s calendar. Even a lockdown donation of £1/$1 with it stated that much supporters of Epilepsy Scotland and maintain our vital services and, didn’t put her off – instead it encouraged all donations would go to Epilepsy look forward to events like the Kiltwalk, importantly, continue to support people her to get her husband Neil and two girls Scotland.” Edinburgh Marathon Festival and our with epilepsy, their families, carers, and Caitlin and Emily to join the 2020 virtual own fire walk and we are excited to return friends from across the wider community. challenge. Jennifer told us it was great to With the hope of raising at least £200, he bigger and better when it is safe to do so. As always, we can’t thank you enough. get the entire family walking with her. was overwhelmed to raise £1,127! Amazing idea and fantastic fundraising! The pandemic also presented many We are always overwhelmed by opportunities for our fundraising team, Jennifer’s dedication to raising Thank you to everyone who attended the like the chance to embrace virtual awareness and funds to help support the live Facebook event, we really appreciate fundraising, coming up with new ideas for work of our charity. people to get involved in. Many of these all these amazing ideas our supporters virtual fundraising activities will continue keep coming up with! alongside in person events in the future, allowing us to connect with even more new supporters from further afield.
FUNDRAISING DURING COVID-19 After being diagnosed with epilepsy three years ago, eleven-year-old Olivia decided she wanted to raise £2019 in the year 2019. Plans ended up being put on hold with a new arrival in the family but in 2020, with the help of her sisters, Hannah, Rebecca and Noa, SOMETHING A LITTLE DIFFERENT the girls set about creating and selling personalised hand sanitisers in their local area. In September 2020, the Moffat Country Fair’s annual tractor road run took place with a parade of over 40 vintage tractors weaving through the countryside. Their popular venture raised an amazing £2,100, meaning Olivia smashed her target! We love how Olivia adapted with the times and put some fun and sparkle into what is now a Organiser David Paton kindly chose Epilepsy Scotland to receive donations from the day, pocket essential. with the run raising a fantastic £750 through bucket collections and sponsorship.
12 Annual Review 2020/21 EPILEPSY THE BENEFITS OF DIGITAL Moving our courses online has allowed TRAINING us to extend our geographical reach, training individuals from Orkney, Sierra Leone, Malawi, Singapore and Alaska.
Epilepsy Scotland is one of the TRAINING IN LOCKDOWN biggest epilepsy training providers in In March, due to the pandemic, our EUROPE - AFRICA Scotland. We have a dynamic team of training diary emptied overnight. We epilepsy trainers who have extensive worked hard to ensure our clients could knowledge and experience of continue to receive epilepsy training and epilepsy. certification and set about converting our courses into online packages. Our trainers provide a vital service, working with clients to improve Despite the immediate challenges of the understanding and awareness of pandemic, we only paused training epilepsy. We provide training which delivery for two weeks. We created new ASIA - NORTH AMERICA covers seizures, diagnosis, treatment, materials and started by launching our impact and emergency medication Understanding Epilepsy and It has also helped us to support the delivery. Our courses include: Administration of Midazolam course newly formed Malawi Warriors online. This continues to be our most Foundation, training their Board, CEO popular course...... and nursing associates in Epilepsy ...... E.P..IL.E..P.S..Y. .A..W..A..R.E..N.E..S.S...... Awareness and Rescue Medication. "Informative, well-presented, accessible, ADMINISTRATION OF friendly, experienced and knowledgeable Next steps involve developing Train the ....E..M..E..R.G..E..N.C..Y. ..M..E.D..IC..A..T.I.O..N...... trainer. Appreciated the level of detail Trainer resources so the organisation compared to previous courses on this can continue to share this knowledge BENEFITS AWARENESS subject that I have been on. across Malawi and the wider continent...... Encouraged and praised interaction, SEIZURE SYNDROMES ...... encouraged critical thinking, responded to all questions, some group work, Our trainers consistently receive great which was good given the Zoom feedback, with participants especially format. Enjoyed hearing from and GOING FORWARD liking our enthusiasm and relatable speaking to the other trainees/experts Throughout the year, all our courses were reconfigured into online versions and we now examples. too. Excellent training." turn our attention to the workshops.
"The content was all very clearly ...... In 2021, we intend to take our School’s Awareness Workshop online and hope to ensure explained, and contained a wide range that schools can access the expertise of our Youth Workers. of interesting theory and information on the topic, with particularly interesting 1,500 We will also launch an online workshop for people who have been newly diagnosed and links between epilepsy, and mental ...... TRAINEES THIS YEAR their family and friends, to help spread awareness and coach caregivers through the health and wellbeing. It was very correct first aid procedures. engaging and informative."
November 2020 01 14 Annual Review 2020/21 WELFARE RIGHTS
In a year when so many of us have OUR CLIENT WORK ...... LOOKING TO THE FUTURE faced financial challenges, the work of ...... Going forward, we will continue to build a our dedicated Welfare Rights service £ CLIENTS 1,191,008.50 case law library applicable to epilepsy has never been in more demand. SUPPORTED GENERATED IN CLIENT FINANCIAL and associated conditions. This will be .1....6.....4...... GAIN THIS YEAR used by our Welfare Rights Officers in The team quickly adapted to remote appeals and will help us to design and working and continued to provide a Our Welfare Rights service supports deliver training and awareness sessions holistic service throughout this people with epilepsy and their family ...... to other organisations for the benefit of challenging period. members to maximise their household people affected by epilepsy. income through welfare benefits, offering After the retirement of Frances Brown in guidance through the entire application OUR WIDER WORK We have already provided a telephone April, our new Welfare Rights Officer, to award process. Scotland is in the process of developing information session to Lanarkshire Jamie Hannah, joined the team allowing a new social security system. Part of this Epilepsy’s support group on preparing us to develop our service even further. This also involves supporting clients new system will be the Adult Disability written evidence which will best support through their anxiety about the process, Payment for disabled people of working their clients’ claims and influence best None of this work would be possible advising them on what to expect at age in Scotland. outcomes. without the generous funding from the medical assessments and providing Bank of Scotland Foundation. We are information on tribunal hearing process Our Welfare Rights Officers have been With our second Welfare Rights Officer extremely grateful for their ongoing and procedure. closely following this development. now firmly established, we look forward support in improving the financial Together with our Policy Team, we have to developing more information and wellbeing of our clients. "Thank you for all your support and provided a full response to the Scottish training sessions and hope to start hard work. I’d have probably not been Government’s consultation on The delivering them to medical professionals Disability Assistance for Working Age and other welfare rights organisations awarded anything if it wasn’t for you. People (Scotland) Regulations. soon. You do a fantastic job and Epilepsy Scotland is a great support to lots of We are also participating in the design of families affected by epilepsy." the new Adult Disability Payment claim form, sharing our expertise to create a new and fairer form which better reflects the needs of the claimant......
65 . 2,279 . 8 . .
FORMS COMPLETED . TOTAL CONTACTS . HEARINGS ATTENDED ......
36 Claim Forms ~ 10 Mandatory Reconsideration Requests ~ 7 SSCS1 Appeal Forms
16 Annual Review 2020/21 POLICY THE POLICY TEAM OUR WIDER REACH Anissa Tonberg, our Policy and External We continue to Chair Epilepsy Consortium Affairs Manager, was approached to Scotland and hold the Secretariat of the undertake a secondment as Senior Policy Cross-Party Group on Epilepsy at the Epilepsy Scotland’s dedicated policy OUR POLICY WORK Manager in the Clinical Priorities Team at Scottish Parliament. team works to improve the lives of Throughout the pandemic we have never the Scottish Government. She is leading people with epilepsy by influencing wavered in ensuring the experiences of on work which will improve policy for In the last year we have held meetings on policy and decision makers. people with epilepsy are heard by people living with neurological conditions learning disability deaths, social security decision makers. across Scotland. During her secondment, and vCreateNeuro. We are pleased to Rona Johnson is acting up as Interim have delivered the meetings virtually and COVID-19 AND OUR WORK Following several months of lobbying Policy and Communications Manager have found the attendance has diversified Our work over the past year has been and talks with the Dumfries and and Anna Telfer has joined the team as without the need to travel to Edinburgh. widely influenced by COVID-19. We Galloway Health Board, we secured a Policy and Campaigns Assistant. quickly adapted to working from home children’s epilepsy and complex needs The Cross-Party Group continues to be an and focussed our approach on nurse in the area. Prior to this, children Rona succeeded Anissa as Chair of the important platform to raise and discuss monitoring and responding to how the with epilepsy in Dumfries and Galloway Epilepsy Consortium Scotland and Vice issues facing people with epilepsy. We will pandemic was impacting people with had no access to epilepsy nursing Chair of the Neurological Alliance of continue with this work once the epilepsy. advice. Scotland (NAoS). Through her work with Parliament is reconvened after the NAoS, Rona sits on the Scottish Scottish Parliament election. We stayed in touch with clinical We are delighted this post has been filled Government’s National Advisory stakeholders throughout, monitoring and we are pleased Epilepsy Scotland Committee for Neurological Conditions. changes to epilepsy services and was able to financially support the Through these platforms, the Epilepsy offering support where possible. epilepsy training for the nurse. We would Scotland policy team directly influence like to offer a particular thanks to Joan and shape policy affecting people with This included writing a position statement McAlpine MSP and her team for their neurological conditions, including on Learning Disability and COVID-19 support in getting this nurse in post. epilepsy. which was covered in the National 2021 newspaper and our main ask, to ensure SCOTTISH all people with learning disabilities were ...... PARLIAMENT included in priority group six for people with epilepsy MANIFESTO vaccination, was met by the Scottish surveyed during the 6 asks for the 6th Scottish Parliament election Government one week later. 125 COVID-19 pandemic ...... 2021 SCOTTISH PARLIAMENT MANIFESTO We also surveyed 125 people with saw an increase in seizures At the beginning of 2021, we launched Epilepsy Scotland’s Manifesto for the 2021 epilepsy to inform our COVID-19 and 40% during the pandemic Scottish Parliament Election. epilepsy report. This report was shared ...... with MSPs and the Scottish Government had speicalist appointments As this was the sixth Scottish Parliament election, we decided to make six asks of the to ensure the experiences of people with 36% cancelled next group of elected MSPs and Scottish Government. epilepsy were considered in emerging ...... policy. These six asks will form the foundation of our policy work over the next five years. We have already received excellent engagement from parties across the political spectrum and are looking forward to positively influencing policy which better represents people with epilepsy. Our manifesto was also featured in The National!
18 01 Annual Review 2020/21 INCOME & THE YEAR EXPENDITURE AHEAD
...... The past year has posed unprecedented challenges. In March 2020, we, like many other organisations, closed the doors to our offices and commenced remote working, adapting TOTAL INCOME AND GAINS our services to meet the demands of the changing world. Despite the challenging circumstances, our team have not only risen to the challenge but have thrived, and we are very proud of that. £ 820,484 The adaptability of our services and the resilience of the Epilepsy Scotland team have been a testament to the strength of our organisation...... As we look forward to the coming year, we await change with eager anticipation. We will take the learnings from the pandemic and use them to plan for the future. TOTAL EXPENDITURE We are excited to implement our blended working model, giving our staff the flexibility of working from home and the office. We have a new-found enthusiasm for our in-person £885,763 services and non-virtual fundraising events. We will integrate our newly formed digital services into our traditional structures, allowing us to support more people, in more areas ...... of Scotland, than ever before. We will commit to the digital revolution brought on by the pandemic by remodelling our NET MOVEMENT IN FUNDS website, making it more accessible to better support people affected by epilepsy.
We will build on the work of our 2021 Scottish Parliament Election campaign and develop £ relationships with MSPs to ensure policy is put in place to better meet the needs of - 65,279 people living with epilepsy in Scotland...... As we reach the end of an unimaginable year, we are stepping into 2021/22 with optimism, excitement, and a strong commitment to supporting people affected by DONATIONS, LEGACIES AND FUNDRAISING epilepsy.
£607,020 ...... Adaptability Resilience Strength
20 Annual Review 2020/21 THANKS SCOTLAND’S INSTITUTE OF DIRECTORS To those who helped make all of this happen
OUR FUNDERS SCOTLAND’S INSTITUTE OF DIRECTORS A special thank you to funders who helped us innovate and support the wellbeing of A special thanks to Scotland’s Institute of Directors who have chosen to people with epilepsy of all ages this year. Epilepsy Scotland as their ‘Charity of the Year’ again in 2021...... A.M. Pilkington Charitable Trust R S Macdonald Charitable Trust OUR CORPORATE SUPPORTERS Ann Jane Green Trust Scottish Children's Lottery A huge thank you to the companies and staff who have supported us this year. As well as making donations, many of these companies have taken steps to make sure that their Bank of Scotland Foundation Scottish Council for Voluntary workplace is more ‘Epilepsy Friendly’, something that is hugely important to ensure Cecil Rosen Foundation Organisations people with epilepsy are supported in the community and at work. Children in Need Scottish Government Connecting Scotland Screwfix Foundation ...... Corra Foundation The Alchemy Foundation akp Scotland Ltd JP Dunn D’Oyly Carte Charitable Trust The James Inglis Testamentary Trust Amazon Smile Legal Rooms Engage Renfrewshire The JTH Charitable Trust (James T Aviva Community Fund M&S Dumbarton Foundation Scotland Howat) BAE Benevolent Fund MacKenzie, Kenneth, Mr Glasgow Nursing and Medical Relief The Meikle Foundation Co-Operative Community Fund Neighbourly Community Fund Association The Robertson Charitable Trust Cruden Foundation Limited Paypal Hugh Fraser Foundation The St Katharine's Fund easyfundraising R3 IoT Limited John Watson's Trust The Templeton Goodwill Trust Eisai Europe Limited Reach Shared Services Miss E. C. Hendry's Charitable Trust Thistledown Trust EPIC Standard Life Mrs M A Black Charitable Trust The Hayward Sanderson Trust Glasgow Credit Union Tesco Charity Trust National Lottery Community Fund MEB Charitable Trust Institute of Directors Northwood Charitable Trust Shared Care Scotland ......
OUR BOARD A final thank you to the dedicated volunteer members of the Epilepsy Scotland Board. OUR LEGACY DONORS Susan Duncan Caroline Barnett Thank you to those who have left a legacy to us or fundraised to remember Kirsty Lynch Bryan Hislop a loved one this year. Donations in memory are a heart-warming way to Richard Roberts Ross Bennet remember someone and a vital source of income to help us to achieve the Ricky Murray Kevin Roger charity aims. Celia Brand
2A2nnual Review 2020/21 Annual Review 2020/2011 TEAM
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