2024 Annual Report Annual Report: Oct 2023 - Oct 2024 Executive Summary In 2024, Say Aphasia made significant strides in our mission to reach and support more people with aphasia. As well as grow the number of groups and improve governance across our organisation. This included rationalising and improving our systems and processes to ensure the overall direction, effectiveness, supervision and accountability of each group. With the generous support of our donors and community partners, we have hired a charity coordinator and successfully acquired 15 new volunteers. Changes improved: our DBS process, group safety, our volunteer recruitment process, volunteer support, attaining aphasia friendly documents and communications. Say Aphasia have acquired 3 new groups - Gloucester, Barnstaple, Bishop Auckland. Our USP still stands; we are the only aphasia charity in the UK which is run predominantly by people with aphasia. Say Aphasia celebrated their 8th anniversary during this year. Mission and Vision Say Aphasia’s Vision: To offer peer-led groups that support people to live positively with aphasia in the UK. Say Aphasia’s Mission: Say Aphasia will have a network of peer led support groups across the UK. We will identify the best locations for aphasia support groups, focusing on areas with potential peer leaders, active Speech and Language Therapy teams, and/or other partners such as Headway, Stroke Association, and/or other relevant aphasia groups. These partnerships will help us build strong links and gain referrals. Each group will follow Say Aphasia's clear, consistent protocols. Peer leaders with aphasia will run the groups, supported by a structured team, ensuring the charity becomes an important part of local care for people with aphasia. Aims of support groups: To bring people with aphasia or other acquired communication disability together. To help people with aphasia feel less isolated, and feel positive and more confident living with aphasia. To provide a safe place where aphasia is understood. To provide a supportive community for people with aphasia to have conversations and socialise. Key Achievements Many of our peer leaders with aphasia have stepped out of their comfort zone and made many media appearances! TV appearances! We are incredibly proud of our Peer Leaders with aphasia who have taken the initiative to contact local journalists / news departments to raise awareness of aphasia. To watch the news segments, visit: sayaphasia.org/press News articles! We had several articles published in local newspapers and magazines to promote our Brighton Half Marathon fundraising or to attract new volunteers. Here is one article we had in the Sussex Exclusive. Radio appearances! In July, our Trustee, Barbara, and Service Manager, Lauren spoke on the Bournemouth local radio, Hope FM. Podcast appearances! A good friend of our support group in Devon has created a podcast about aphasia. John Hirons speaks with our Trustee Barbara, as well as a few of our Peer Leaders. You can listen to the podcast here. Colin speaks on The Brainy Speech Therapist podcast. Presentations: Colin and Howard spoke at the first Sussex NHS Stroke Conference. Say Aphasia ran a workshop for about 50 people, to raise awareness about the charity and Colin’s and Howard’s lives living with aphasia. Lots of people were asking for more information and were keen to learn more. Colin was part of the steering committee to plan the first conference. Presentations: Pete, our Darlington peer leader, regularly presents to local brain injury and stroke wards, as well as local bank branches to raise awareness and understanding of aphasia. Colin and Howard - Took part in The Big Conversation partnership event. An event focused on developing a new Trust strategy for University hospitals in Sussex, to meet the needs of patients and communities over the next 5 years. The meeting in Brighton talked about what could be improved, and what has already been implemented and is working well. Skipton art exhibitions: Clarke Foley Community Hub in Ilkley. Kala Sangam arts venue in Bradford. With a visit from actress / comedian Jessica Knappet. Impact Stories Testimonial from Keith Chandler - Say Aphasia Hove member: I was recovering from brain surgery in 2016 and was being supported by Kirsty Maguire, my Speech and Language Therapist. She suggested I went along to the ’Say Aphasia’ Hove group for people with aphasia. I had difficulty with expressive language and word finding. It was quite a daunting prospect to go to an unfamiliar environment with strangers but I made that giant step and I’m really glad I did. They were welcoming and it felt like a safe, non –judgemental place. It made me realise I was not alone. People with different challenges can empathise and support each other. As well as coffee and cake we have enjoyed a wide range of activities, entertainment and informative sessions. Friendships have been made and extend beyond the coffee group. My speech and confidence have improved, and I was invited to become an aphasia befriender for the NHS. Befrienders support people with aphasia in the community who are housebound. I would never have had the confidence to do this if it wasn’t for the Hove Say Aphasia group. Say Aphasia is so inclusive, they invite members like me to join in “Aphasia Awareness in the community” by going to different events and fundraising. Say Aphasia is more than a cup of coffee and a game of chess. It is the reason to get up and out and face the world and enjoy social interaction. It is the difference between isolation and being part of the Say Aphasia family. Cherri Gillam - Carer and wife of Hove member, Anthony Gillam: My husband has been attending the group for 2 years. He had his stroke in lockdown and suffers with aphasia and dyspraxia and is probably one of the worse affected within his group of friends. The volunteers, who have also been through aphasia of some sort, are inviting and supportive and make the 2 hours go so quickly with the activities and laughter, that there almost needs to be another session. Colin and Paul are so inviting and welcomed us into their group with open arms. With the comradery and leg pulling it makes for such an entertaining group, that is good for Gilly’s soul and makes him smile, which he struggles to do on some days. The other volunteers who make the coffee, do the chairs etc, are all aware of Aphasia, this makes the group so approachable and invaluable to every single member. Say Aphasia has given Gilly hope and has shown him that you can live with Aphasia. It has shown him that there are people out there that understand his daily frustrations and can tell a story about when the exact same thing has happened to them, and how it is ok to be different. Through the speech therapists who attend the group, we have found out about tools that are available and useful to support Gilly’s daily living and have made life more bearable for him and as a family. We are forever grateful for the help to encourage Gilly to lead a nearly normal life. Aphasia is the worst disability of Gilly’s stroke, he can mobilise with a stick and attends stroke gym weekly and can build up his physical ability, but Aphasia is so frustrating and debilitating for him, he will often cry. But never on a Friday – the atmosphere at the group and friends he has made, show him that life is liveable with Aphasia and the group is a very important part of Gilly’s ongoing rehabilitation, which to us as a family make the group a priceless lifeline. This group would be a worthy recipient of this award and the recognition that comes with it will help the Brighton and Hove Aphasia community to thrive and hopefully spread the learning to other groups within Sussex. To say this group is invaluable to my husband’s mental health and wellbeing is an understatement. Friday is a day that I don’t have to encourage Gilly (Anthony) to get out of bed and get ready. Jez Hodgkinson, Winchester peer leader: My skills being a Peer leader have been improved both in doing new things (media, organising and planning the meeting, supporting members, helping members etc.), and resurrecting my original skills (from pre-stroke) – speaking, planning, leading, etc. Click here to see our video testimonials from members with aphasia. Click here to see a video testimonial from Sussex Speech and Language Therapist, Kirsty Maguire. Service Overview Service 1: Support Groups Current number of groups: 17 Total number of service users with aphasia who attend our drop-in groups: 282 (between October 2023 - October 2024) Current number of volunteers with aphasia: 16 Current number of volunteers without aphasia: 31 Current number of speech and language therapists who actively refer patients to our groups: 21 Service 2: Exeter Home Befrienders Current number of service users: 6 Current number of volunteers: 6 Total number of volunteers this year: 9 Financial Overview Income Sources: Donations: £15,150 Grants: £16,400 Fundraising events: £14,565 Gift Aid claims: £3639 Bank interest: £407 Total: £50,161 Expenses: Support group service: £20,969 Administrative, including staff: £29,554 Fundraising: £8,243 Marketing: £7,474 Unrestricted cash funds at Year-End: £20,428 Restricted funds at Year-End: £15,000 (The Fore - To be spent on service expansion). Successful Grant Funds The Fore: £30,000 over 2 years Devon Community Foundation: £4,200 Barchester Charitable Fund: £900 Fundraising and Donation Acknowledgments Nigel Cheffers-Heard, a member of Say Aphasia Exeter, raised £1360 with his 100 mile bike ride challenge from Ilfracombe to Plymouth. Sue Raffil, one of our volunteers, set herself the 100 mile bike ride challenge and raised £875. Richard Brannan, a friend of Say Aphasia Hove, raised £635 with his 36 mile walk across Sussex Downs Link trail. Which resulted in a generous £635 match funding from Care UK. Jez Hodgkinson, our peer leader in Winchester, set his group a walking challenge and together they raised £1,055. We had 50 runners for the Brighton Half Marathon raise £10,538. One runner, Tommy Rowlingson, alone raised £1,600. Woodingdean Community Association donated £300. Donor Spotlight Worthing Masons at Ordinges Lodge raised a whopping £4,600 with their Masons ladies night gala. The Ordinges Lodge President chose Say Aphasia charity after his mum was diagnosed with Aphasia. Winchester member, Peter Young made an incredible £1000 donation Several families of loved ones who died this year very generously raised money at their funerals and, this year have collectively donated £2000. Challenges and lessons learned Taking action on recruiting more staff to help us grow. Acknowledging that we need more training for our volunteers especially around communicating with someone with aphasia, and how to support our members with communication. Aphasia Communication Training to be developed in 2025. Accepting that we will always have recurring communication obstacles to overcome when running a charity which is peer led by people with aphasia. Due to the fact that aphasia is complex and varied, and so our support also needs to be varied, as well as flexible. Memory and processing issues are common symptoms of brain injury and so we have to take this into account with everything we do when managing and supporting a charity run by people with brain injury and aphasia. This year we have witnessed the importance of consistency with our processes and procedures. Especially with how we start up a new group and train our new volunteers and peer leaders. By offering face-to-face support by visiting our groups, we have learned how impactful this in-person support is for our peer leaders and volunteers. Future Goals To grow the groups by at least 2 a year. To apply for the National Lottery Grant. To recruit help with marketing. To develop and implement aphasia conversation training for all volunteers. To continue to reach and support more people with aphasia. Collaborations Aphasia Alliance Aphasia New Music Group UCL Research London City University research: COMSTAR PROJECT DARA PROJECT For management to attend groups regularly to offer in-person support. Ending Note As we reflect on the past year, we are filled with gratitude for the generous support we have received. Together, we can continue to make a difference in the lives of those we serve. Thank you for being a vital part of our journey! Thank you to our peer leaders who volunteer for Say Aphasia. Thank you to our long running volunteers, you know who you are. And a final thank you to our trustees: Martin Hall, Barbara Chalk, Ian Lyall and Kate Swinburn. To help keep this charity going, please donate today. Lauren Leake, Service Manager. “As we approach the end of the year, I'd like to thank our supporters. It's been another amazing year for fundraising and grants. But we also have 17 support groups with brilliant volunteers as well. Next year we’ll have at least another four support groups, so we will need to be mindful that our policies and procedures are always in check to provide safe and well-run groups. Our strength is that the people who run our groups are people with Aphasia.” Colin Lyall, Founder. Manage Cookie Preferences