FN DAdK¥7 ANNUAL REPORT 31st December 2023 ## **Table of Contents** ## **01** **02** Administration and Governance Our Mission **03** **04** Highlighted Support Activities Highlighted Awareness Activities **06-09** Financial Reporting **05** Highlighted Advocacy Activities ## **Administration & Governance** Registered Charity name: FND Action Registered Charity number: 1169554 Registered address: 5a New Road Avenue, Chatham Kent, ME4 6BB Structure: Constituted as a CIO Trustees: Eric Rosser (appt: 01.2017) Anthony Hunter (appt: 06.2023) James Shipley (appt: 11.2021) Richmond Stace (appt: 10.2023) Timothy Nicholson (appt: 11.2021) Devon Oship (appt: 10.2023) Tom Plender (appt: 08.2022) The constitution was adopted on the 23th September 2016. FND Action is a Charitable Incorporated Organisation (CIO) and was registered with the Charity Commission on the 10th October 2016. Trustee selection is undertaken through consensus amongst currents trustees for roles which are required to further the charity’s objectives and activities. Trustee meetings are held periodically to discuss the structure and management of the charity. In planning activities of the charity, trustees have considered the guidance on public benefit issued by the charity commission. The relief of sickness and preservation of health of persons suffering with Functional Neurological Disorder, in particular but not exclusively by: Raising awareness of functional neurological symptoms through the provision of current information to the general public, health sector, caregivers, and those suffering from these symptoms. Promoting awareness of functional neurological symptoms through charitable events, meetings, social media, online and offline resources, information packs, leaflets, and other educational materials as required for the public benefit. Promoting ongoing research for functional neurological symptoms by encouraging participation through our website and social media, and publishing results. Annual Trustee Report: 31st December 2023 01 ## **Our Mission** ## **Peer support:** We aim to develop our website as a key resource for information, support and signposting through regular updates. We continue to provide online support groups for those diagnosed in the UK, their families and their care givers. We recognise that having the opportunity to chat to other people diagnosed will eliminate isolation, and can have a positive impact on a condition that is still little known about. Our team will also continue to provide a caring hand and experience to be able to offer one-to-one support and guidance. ## **Empowerment:** We aim to encourage and help people to achieve the best quality of life and improved wellbeing. We believe that whilst there is no magic cure, there is a lot that can be done to help towards recovery and/or management of symptoms. ## **Awareness:** We aim to do everything we can to raise awareness of FND amongst the general public, healthcare sector, service providers and other related charities. We already have a strong social media presence, and aim to build on our advocacy work within areas such as education and social care. ## **Collaborations:** We aim to continue to build on relationships with specialist health professionals, related charities and service providers. We understand that effective treatment and care of FND needs to have a holistic approach. We will also continue to assist researchers with project development and recruitment as we believe this is crucial for developing a better understanding of FND. **Our vision is to shine a light on Functional Neurological Disorder so that people diagnosed feel heard, supported and empowered.** Annual Trustee Report: 31st December 2023 02 ## **Highlighted Support Activities** FND Action continue to be a leading charity supporting and representing people living with FND in the UK. Our charity remains patient-led, and is therefore able to provide extensive knowledge of FND and recognition of people’s needs. Regular contact with leading specialists and those who treat FND, and a keen interest in research development, ensures information provided is current and accurate. ## **Supporting those diagnosed, care givers and families** **Providing a website for information and guidance** ## **Membership of the Hidden Disability Scheme** We continued to provide one-to-one support and online support groups. By year end our Facebook groups had grown to 13.2k members, and we continue to help people daily with direct support. FND Action’s Facebook group has helped me because I feel less isolated and able to connect with people who have been through the same journey as me. We continue to encourage and support people to connect with others in their area, in addition to our regional community groups. Our website continued to be a leading resource, for current information of FND, support information for those diagnosed and those who provide medical care. In the region of 168,000 new visitors came to the website by year end, averaging 57,000 page views per month. Visitors were predominantly in the UK, but visits have also been recorded in over 80 other countries. We continue to develop the website in line with the needs of our community. By year end, in the region of 2,900 lanyards had been given out to people within the community, totalling around 8,000 since joining the scheme in August 2021. Being part of the scheme has enabled us to be able to aid people with having the confidence and safety being out in public and assist with mental wellbeing due to isolation. Seizure medical alert cards also remain available. Annual Trustee Report: 31st December 2023 03 ## **Highlighted Awareness Activities** FND Action raise awareness through public campaigns and education. We organize awareness events, provide educational materials, and advocate for better policies and research funding. Additionally, we have fostered a supportive community where patients and families share their experiences, helping to reduce stigma and improve understanding of FND among both the public and medical professionals ## **Activities on social media** **FND Awareness Day UK - 25th March** **#InformTheDoctor** ## **campaign** We continued to use our social media platforms to inform on developments of FND, provide supporting information, and share posts from people in our community. At year end, our public social platforms had in excess of 19,000 followers, with continued engagement from the public. The 25th March marks FND awareness day across the UK. Each year we join the charity’s FND Dimensions and FND Friends to host an online event. Social media continues to play the key role of the day, by sharing stories and infographics to help raise awareness of FND. In 2022, we started a campaign to help people share current information relating to FND with their doctors. The 4-page downloadable information sheet was designed to provide current information in order to tackle outdated understanding of the condition, reduce stigma and also inform professionals about the latest research. The campaign has continued and has been distributed to many GP surgeries across the UK. Annual Trustee Report: 31st December 2023 04 ## **Highlighted Advocacy Activities** With FND Action’s several years of the knowledge, we remain equipped with being able to identify and prioritise areas where better understanding of FND is needed among clinical settings, social care and the public. This in turn identifies critical areas across the UK that need priority focus on. Through campaigns, education, and policy efforts, we work to reduce stigma, improve care, and promote research to enhance the lives of those affected. ## **Attendance as Maximum’s annual conference.** **Assisting research development and recruitment** **Collaborations with allianced forums to be the #Voices4FND** During the year, FND Action were invited to present at Maximus’s annual conference. Maximus provide health assessments for DWP, and it was a critical opportunity that our CEO was able to presented to over 1,000 health assessors and doctors across the country. Presenting at the conference was a vital opportunity to raise awareness about the challenges FND patients face. It helped foster a better understanding of the condition, promoting more informed and compassionate assessments. Kim Hearne, CEO Given our extensive knowledge of FND and the needs of this patient community, we were often invited to contribute to research through PPI engagement. This acknowledgement was also recognised by being asked on several occasions to get involved with helping put together research grants. We continue to assist with recruitment for research projects through our online support groups and community connections. We continued to engage with related forums and alliances across the UK. We are members of/allied with several clinical and social forums, and had the opportunity to be able to present at various seminars and workshops, such as the FND Masterclass hosted at Kings College, London and events hosted by Medway Neurological Network. 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