## **Trustees Annual Report** **For the period 1[st] January 2021 to 31[st ] December 2021** **Charity Name:** FND Action **Charity Registered Number:** 1169554 ## **Administration Details:** **Registered Charity Name:** FND Action **Registered Charity Number:** 1169554 **Registered Address:** 5a New Road Avenue Chatham Kent ME4 6BB **Structure:** Governing document: Constitution Constituted as a CIO Trustees selected and appointed by the Board **Trustees:** Kim Hearne (Chair) - Appointed 10[th] October 2016 Eric Rosser – Appointed 17[th] January 2017 Tracey Shea – Appointed 16[th] April 2021 James Shipley – Appointed 3[rd] November 2021 David Rosser – Appointed 3[rd] November 2021 Timothy Nicholson – Appointed 16[th] November 2021 ## **Governance, Structure and Management:** The Constitution was adopted on the 23[rd] September 2016. FND Action is a Charitable Incorporated Organisation (CIO) and was registered with the Charity Commission on the 10[th] October 2016. Trustee selection is undertaken through consensus amongst current trustees for roles which are required to further the charity’s objectives. Trustee meetings are held periodically to discuss and agree the charity’s objectives and activities. In planning the activities of the charity, trustees have considered the guidance on public benefit issued by the charity commission. ## **Objectives:** As per FND Action’s Constitution, our objectives are: The relief of sickness and preservation of health of persons suffering with Functional Neurological Disorder, in particular but not exclusively by: - 1) 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. - 2) 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. - 3) Promoting ongoing research for functional neurological symptoms by encouraging participation through our website and social media, and publishing results. **1 |** 5 ## **Vision and Mission:** FND Action’s vision is to shine a light on Functional Neurological Disorders so that people diagnosed feel heard, supported and empowered. ## Our Mission includes: **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 with functional neurological symptoms in the UK, their families and their caregivers. We recognise that having the chance to chat to other people diagnosed will eliminate isolation, and can have a positive impact on a condition that is still little known about. We 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 a better 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 functional neurological symptoms 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. ## **Activities:** FND Action’s activities continue to be predominately undertaken remotely which allows us to provide support to people across the whole of the UK, and be able to engage in health-related advocacy and forums on a national scale. We have fulfilled our objectives this financial year with the following activities: - Providing support to those diagnosed through the provision of an informative website, online support groups, one-to-one support and signposting. - Assisting with support aids by providing medical alert cards (for seizures), and sunflower lanyards following us joining the Hidden Disabilities Scheme in September. - Raising awareness through the provision of online meetings, forums, steering groups, literature and merchandise to those diagnosed, the healthcare and social sectors, related organisation and charities, and the public. - Ongoing development of our website as a leading resource for those diagnosed, caregivers and people with interest. - Ongoing social media presence on Facebook and Twitter. - Attendance of virtual conferences and events relating to FND and general health. - Providing assistance to researchers and academics at submission and recruitment stage. - Participation of the annual FND Awareness Day UK on the 25[th] March. - Sitting on various steering groups/forums to be a voice for those diagnosed. - Collaborations within the health and social care sector to raise awareness and educate. **2 |** 5 ## **Achievements and Performance:** From being the first registered charity for FND support in the UK in October 2016, FND Action has remained a leading charity supporting people diagnosed 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. We also regularly converse with leading specialists to ensure information provided is current and accurate. Whilst it has been a difficult time through the pandemic for the charity sector, we have still been able to continue to support people remotely and fulfil our objectives. At the start and near the end of our financial year, FND Action underwent some significant changes with the administration of the charity, so for short periods of time future planning was on hold. Day to day activities continued, and by the end of the year future planning was able to resume. Our online support network has continued to grow, and our main group currently has the largest FND charity membership, standing at 6,899 by our year end. Member requests average around 250 a month, which has seen a gradual increase of around 6% over the year. The group continues to be a haven for those diagnosed and their caregivers in the UK, especially for those who have been newly diagnosed given there remains significant issues around accessing treatment and care. Our admin team on the group play a significant role in helping assist people where possible and to keep the group positive. The impact of the pandemic has contributed to a further surge in people contacting us for direct support given the disruptions and backlogs it has caused within the NHS. However, this surge also reflects that FND Action is becoming better known as a charity who can support people diagnosed, and the main avenues for them reaching us is through social prescribing and easily finding our website online. We on average received around 100 enquiries each month, all of which we were able to help directly or signpost. FND Action continue to be a member of the Neurological Alliance, which is a collaboration of 70+ neurological charities that unite to advocate directly to the NHS/Public Health for better care and awareness of neurological conditions in England and Wales. We also play an active role as a member of the Medway Neurological Network, which is again a collaboration with local neurological charities with focus on improving local services, ongoing wellbeing and holding events to raise awareness of neurological conditions. FND Action continue to be a community partner organisation of the International Functional Neurological Disorder Society and the UKFNForum. This allows us the opportunity to help towards influencing changes in medical care, and also be kept up to date with latest developments such as with treatment. The 25[th] March marked the 5[th] annual FND UK awareness day and was again very successful with raising much needed awareness. Activities included people sharing self-lived experiences of FND and we collaborated with other FND charities to host online activities people could get involved in. Social media once again played a key role in spreading awareness, especially given the current lockdown rules. With inclusion of fundraising events that took place for the day, £3,000 was donated to the AMH Neurosciences Research Foundation to support free education for AHO’s working with people with FND. In August FND Action joined the Hidden Disabilities Scheme as it was recognised that some people were being poorly treated out in public, and that many were isolated given their fear of being judged. The scheme entails us providing sunflower lanyards, free of charge, to people diagnosed with FND, and are recognised as being a discrete way of letting the public and businesses know that the wearer **3 |** 5 may need some additional support. By year end (3 month period) we distributed in the region of 2,500 lanyards, and received many messages of gratitude. In September FND Action was able to reach another milestone by establishing its first office in Chatham, Kent, which acts as the registered address for the charity. This will allow the administration of the charity to be run more efficiently, as well as acting a base for us to benchmark the development of FND Community Groups across the UK. In October the FND Drop-in Café was re-opened in Rochester Kent, which is held every 4[th] Friday of the month in conjunction with Medway Neurological Network. The attendance thereon has increased each month. The café forms part of the FND community group being benchmarked in Kent. FND Action played an active role throughout the year in assisting researchers and academics in delivering studies into FND, including helping with initial applications and recruitment of participants. In Wales there is currently no care pathways for FND. We were extremely grateful to have the opportunity to work with Health Technology Wales in putting forward a call for change to NHS Wales. In alignment with growth, the charity has continued to develop strong links across the UK with a variety of medical professionals, other related charities and service providers within the health and social care sector. There was a significant increase in contact within social care and education, which we plan to engage in further moving forward. ## **Financial Review:** **Reserves:** On the 31st December 2021 the sum of £45,680 was held in reserve to spend on charitable activities. The charities policy is that the reserves will not fall below £1,000 without full agreement of the board of trustees. **In deficit:** None. ## **Further Information:** Due to the generosity of fundraisers and donors, we raised £23,554 during the year. Expenditure supporting and delivering the charity’s objectives has increased this year to £23,377. The majority of this was accounted for in the following areas of activity: 1. £7,000 on lanyards distributed to those diagnosed after becoming a member of the Hidden Disability Scheme. 2. £3,000 donated to the AMH Neurosciences Research Foundation. 3. £5,144 on office expenditure. We remain in a strong financial position which will enable the charity to continue in achieving its goals during the coming year. **4 |** 5 ## **The trustees declare that they have approved the trustees’ report above.** **Signed on behalf of the charity’s trustees:** **Kim Hearne** **Chair of Trustees of the Board: FND Action** **Date: 14.06.2022** **5 |** 5 CHARITY COMMISSION FOR ENGLAND AND WALES 1169S54 Receipts and payments accounts CC16a For the ￿rIOd JM. 31-12-21 To Section A Receipts and payments Unrestrfcted Restrtcted fund• Endowmènt funds Total funds Last ygar A1 Recel DONATIONS AWAREP4ESS IAERCHINDL8E 18.688 SI￿ total(Grass MKome for ARJ A2 A•••t •nd Invmtmonl •o1••, 184• table). 18.262 Sub to 18.2S2 A3Pa ACTMTIES EXPENSE$A)FF￿E STATIONARYIPOSTAGE INSURANCE MEMBERSHIP BWE OTHER 1Q121 4144 10,121 5.114 1.170 279 700 100 S23 3.531 23,377 1398 A4 A••ot •nd Inve•trn•nt urchas￿, 80? table 23J7T 23 3.396 Plet olrnceipW(poynwrts) t77 177 14.856 A6 Cash lund8 last Y￿rend 45,503 45,503 30.647 45.503 CCXX Rl accounts ISSI Section B Statement of assets and liabilities at the end of the period Unrestricted Restricted Endowment funds to nearest£ aie9ories B1 Cash funds PAYPAL 1.267 funds fund¥ funds Dp.tails FuThl lOt*tJch Cufyont ¥•lu• Cwalls to YNch Curforrt volu• rJ•l*ll B4 As8•t• r•taITr￿ for th• eharlty'8 own u Furyl tOf*thlch AMO￿nI W￿Tr du• Details B6 Llobllltt•• SwJnEd by om or trust•os behaw of all the tmt D81e of int Name ERIC ROSSER Klkl HEARNE CCXX R2 acc¥Junts ISS)