Trustees. Annual Report for the period P8ri0d start date Peric#J end dat8 From 01 01 2020 31 12 2020 Section A Reference and administration details Charity name FND Hope UK Other names charity is knv*n by FND Hope Registered Gharity number (rf any) 1173607 & SC048333 Charitys principal address 21 Chelwode Banbury OxFordshire Postcode OX16 1QN Names of the charity twstees who manage the charity Trustee nam Offie• (IF any) Nam• of person lor body) èntitlèd to appoint trust8• Matt BIr￿l$tIe Chair Louyse McConnelE- Trevillion Trustee Bridget Danielle Mildon Trustee Lucinda Sian Smulders Trustee Robert Wilson Thomas Trustee Richard Newland Trustee 07.09.2020 07.09.2020 Joyce Davies Abigail Bisho Laggett Christopher Symeon Trustee Trustee 18.11.2020 Trustee 18.11.2020 10 12 Names of the trustees for the charity, If any. (for example. any custodian trustees) Name Dates acted If not for whole TAR M8r¢h 2012 Names and addrosses of advlsers (Opuonal Inforn￿On) e of adviser Name Address Independent Examlner Wamer Wilde Limited 4 Marigold Drive. Bisley. GU24 9SF Nam8 of chlef axocutlv• or names of sonlor staff m•mbor8 {Optlonal Infonnatlon) Dawn Golder Section B Structure. governance and management Description of the charitys trusts Constitution of a Charitable Incorporated Organlsallon whose only votlng members are its charity trustees dated 28° June 2017 Type of goveming d0￿ment How the chadty Is constltuted Charttab￿ In￿rated Organisation (CIO) Trustee selectlon methcAIs Trustees are recruited and appointed under dause 10 of the Constitution (1) Apart from the first trustees, every trusteg must be appolnted [for a tenn of [threel years] by a resolution passed at a properly convened meetiTr3 of the charity trustees. (2> In selecting individuals for appointrnent as charlty trust888. th8 charity trustees. the charlty trustees must have regard lo the skllls. knowledge aThJ experience needed for the effectlve admlnlstratlon of the CIO Addltlonal govornanco Issues Ioptlonal Inforn)atlon) Trustees have undertaken the following courses Online GDPR Awareness for Small Charitiès Course conducted by VSL Training Onllne Safeguardlr¥J Adufts A￿erenesS Course ty Vltal Skllls Online SafeguardiTvJ Child Awareness Course by VSL Consulting You may choose to include additional information, whe relevant. about: policies and procedures adopted for the induction and training of trustees. the charlty's organisational structure and any wder network with which the tharity works., relationship with any reLgted parties: trustees, consideration of major risks and the system and procedures to manage them. Section C Objectives and activities TAR March 2012 FND Hope UK aim to change how functional symptoms are understood and defined within the UK. Summary of the objects of the charity Sot out in its governing document We work in a conc*rted manner to advocate for the Men, Women and Children have had their lives impacted by physical and often debilitating functional S￿ptoms. Our rni5sion is to promote awareness, SUPPK)rt affeded indtviduals, and advance research for the prevention. treatrnent and recovery of FND. The relief of sii*ness arKJ preservation of health of those affected by Functional Neurol(xJical Disorder (FNDI and their families, carers and communities. In particular, but not exclusively by: 1) Raising awareness and understanding of the general public into the nature, c3uses. diagnosis, prevent, treatrftent and recovery of FND through social media. charitable events, medical Conferen￿ and any other edu(zlional means such as leafiets and bLK)klets Summary of the maln activities undertaken for the publ1¢ benefit In relatlon to these objects (include within thls section the statutory declaratlon that trustees havo had regard to the guidance issued by the Charity Commisslon on publlc benefit) 2) Coordinating a voluntsry FND patients register to assist doctors in the advancement of new and ongoing research, prevent, trealment and recovery of FND in partnership wth the Genetic Allrance. 3) Workiw wrth Medical and Allied Health Professionals to provide a better understanding of FND, improve medical protocols, and promote ethir21 staThJards for FND thrO￿h personal conta¢ advocacy and training. Addttlonal detalls of objectives and activibos (Optlonal Infomiation) eer SLJPPOrt Groups Due to the Global COVID Pandemic, we qui(aly had to change our strategy to bring our peer support groups online to still provide the support to our FND communty. With the help and support of our 13 volunteers. together we organised 1 hour vlrtual peer groups uslng our Z￿M platform each moTIth. o London (1° Tuesday of every month) ScollandA* Wednesday of each rnonth) Wales (3 Monday of each month) North East (1° Saturday of each month) o Norfolk (1" w￿nesdaY of each month) Surrey (3 Friday of each month) UK Wide (4 Wednesday of each month) Berkshire (1" Thursday of each month) o BCP (Boumemouth, Christchurch. Pix)le) and Isle of Wight (* Monday of each month) Parent Peer Groups (3 Thursday of each month) This is a vital Sour￿ of support for our FND Community, where they can reath out to peers going through a similar journey. ask questions. and provide support and thce to each other. We have also seen medical professionals join our peer support groups to provide additional support and to answer questions . Dr Christopher S￿90n from th? Wolf8on Rehab March 2012 You may choose to indude further statements, where relevan( about: policy on grantmaking. poIiGy programme related investment; contribution made by volunteers. TAR Unit. London and Dr Jason Pri￿. Middlesborough. We have also pul in pla￿ online training for our peer support workers to complete a Child Safeguarding course and an Adu]t Safeguarding Course supplied by VSL Consulting and Vilal Services. -FND Hope UKis so importantfor those of us with FND to get infomiation ond meet others with the same condition. so as not tofeelso isolated" Lesley Peer e churityis Important to me us living in a rural island. IVS easy tofeel alone but with FND Hope UK lfrelport of u comrnunitrf. Maureen- Serwce User °FND Hope UKts thefirst Ilne ofsupportfvr o condltlon of pondemlc proportions, while Suffere￿ waitfvr &12 months Iminirnurnjfor ufir5t contart support/referralfrom a proftssionol-. Leon- Seryi(e User Section D Achievements and performance Summary ofthe main achievements of tho ¢harlty durlng the year We have stre￿thened our board by re(￿[knng four new additional t*)ard members to increase the skill set and dNersity. joy￿ Davies a master degree in dinical psychology and is also a Neurodtversrty Edu(ztion orricer with the SNP Dr Christopher Symeon who is a Consultant Neuropsychiatrist from the wolfs￿ Rehab Unit as part of St Georges UnNersity Hospital o Richard Ne￿land, a CEO & founder of AIMCommunity a Creative Arts Education and Mentoring charity. indudiry 8 Masters Degree in Youth arKI Community Work. Abigail Bishop-Laggett public relations and govemment affairs professional is eXperien￿d in SUpp￿tIng healthcare organisations raise awareness of complex or lesser-known (x)ndition5. Medl**l FYnar+ r.nmrni•trw We have grovm our UK Medical Expert Committee by inviting Dr Ben Baig - Senior Lecturer in Child and Adole￿nt Psychiatry. St Thornas. Hospital, London o Dr Fiona Summers - Consultant Clinical Neuropsychologist, Aberdeen Royal Infim￿ry (NHS Grampian) We now have a diverse range of medical and allied health professionals. We meet on a quarterly basis via Zoom, and discuss advancing research in both Adults and Young Children. Help to raise awareness of FND, support any Fiublic policy d￿ng9s. We support research requests and survey studies and proactively engage our Ix)mmunity to get involved. °FND Hope UKhas ployedo mojorrole in changing the landscapeforpeople with FND, their corers undfvmilies. TheYh¢7￿ been central to increased TAR Mareth 2012 Section D Achievements and performance awGiene55 ol FND tsnd provide o lot of information undsupport with minimal resource& FND Hope UK also works really closely with health professionals such os myself in o wide var￿ty of clinicol and research project5. 1 hove personally found this invaluoble. The continuedsucce5s of FND Hope UKIS e55entiol to patients with th￿ common but hidden condition os well as the clinicians trying to improve services and researchfor them-. - Pmftssorjon Stone- Pmfessor of Neurokn, Royiil Infimjary Edinknh and member OAFND Hope UK Medicol Expert Commlttee "FND Hope UKplays a cruclal role In raislno i)worene55 of FND a5 well 05 provldlnLI Informatlon andsupport to people wlth the condition. Bv representing those with lived experience of FND. theyploy o vital role In empowering patients ond odvocotingfor better FND services." Dr Bibo Stonton. Neurolo9ls¢ Xln￿ Comege Hospltol -stigma, negative ottitudes and misunderstanding hove hlstorically and continue to surround the intertxtion5 of heolthcore profvssionals with people with FND. FND Hope UKprovides on essential bridge thot allows patient voices to be really heord ond the development of a shored understt7nding of this common and disabling condition. Through this process, research ond clinict71 service developments are immeasurably strengthened. and the prospect of improved care and treatmentforpeople with FND 15 brought significantty closer to realirf. ProfewMorkEdMirds Proftssorof Newology, St Georges Unl¥w51ty Ilospltol #FNDandUS Campaign FND Hope UK w)rked dosely Director Mike Rumsey from Rumsey Fllms where we were able to doGument the insplrfng personal FND joumeys of four of our Servi￿ users. The campalgn vrds launched by our Patron Lcffrain8 Kelly, and IEcame really successful with a total reach of -4 which Is fantastlc and shows just how much awareness we were able to raise on FND. On Twitter our reach was 99,869 and on Facebook and Instsgram 714,875. On our You Tube Chanr￿1 had the following views (fotal 7.445) o Lorraine launch- 1 k o Jetnma- 998 views o Anthony- 612 views Georgia- 763 view5 o Robert- 572 views Full Fllm - 3.5k views TAR Mafth 2012 Section D Achievements and performance Meet our inspiring individuals Robert- Trustee and Legal Advisor for FND Hope UK Jemma - FND Hope UK Peer SuptK)rt Worker o Anthony- FND Hope UK Peer Support Worker Georgia- FND Hope WarTior We were so overwhelmed by the reswns8. that we have agreed to continue with this ￿MpaIgn in 2021 MYFND apD We supp￿￿ the u92tion. providgd feedback. and organised a webinar to launch the new MYFND app created by Dr Christopher Symeon. Professor Mark Edwards, Dr Glenn Nielsen. Dr Mike Dilley. Dr Rah￿1 Dean frINn the Wolfson Rehabilitation Team. The app helps indiwduals to understand their symptoms, track how the symptoms change over time and leam different techniques to help manage Iheir FND symptoms. The webinar has been watched over 700 times, and we have received some positive feedback on the App. Neurolg-' The Èxecutive Director has been vn)rklThJ very closety v￿th The NeurokNJi(31 Allian Supported the Neurol(NJical Allian￿ survey, lrfe with a neurological condition during COVID19 where we were asked to rewew the survey prior to promotK>n 7.61 /0 responses were from the FND ￿MmunIty. The report found that people with neurological conditions had been profoundly impacted by the pandemic, wryth many reporting disruptions to Iheir treatment, care and support. We signed a joint letter wtth many other neurological charities in collaboration with the Neuro Alliance to Sir Simon Stevens to IoK)k at restarting serwce for people wth neurologiGal conditions after the COVID19 pandemic. Our Executive Director has also become a member of the Mental Health Sub Group whith discusses Mental Health licies and how these Izn be chaTYJed, such as the Intergrated Care Systems and Influence. o The NeurolLYJical Aliance formally asked our ExeGutive Director to become the Vice Chair of the Policy Group where tdicy issues are ralsed and discussed to help support policy changes for all neurolrNJical (x)ndttK)ns such as Long Covid, PIFU (Patient Intliated Follow Up). The Exeartive Director has also been meeting with National Neuro Advtsory Group (NNAG) part of the Neurological AlIsan￿, on the Qptimal FND pathway, which unfortunatety was paused due to the COVID19 pandemic. Work will Commen￿ in 2021. We have started to vA)rk more doseEy ￿ryth the Wales Neurological Allian￿, spectficalty around the lack of FND Services. We have also nnected V*ryth Dr Tanya Edmonds who will be organising a Task & Finish group for FND SeNices in Wales in 2021. N'ei We have started to vlork more closely wtth the Neurological Alllance of Scodand, s ctfical around the lack of FND Services and no March 2012 TAR Section D Achievements and performance mention ol FND on the NHS Inform platform. Our Trustee Robert Wilson Thomas has also joined the Wales Neurological Condltlons A(fvisory Group Coronaunlty Coronaunity is a student led COVID19 organisation to help support charities on consultancy projects. The executive director worked with 6 students on the following projects ial Media Audit of our Social Media Accounts Creation ol a Volunteer Handbook Plan a PR Strategy for the roll out of our #FNDandUS campaign o It was great to work Y￿th some really enthuslastic students. and ￿ were able to identify areas for improvement for our social medra, the new Volunteer Handbook has now been created and the PR strategy helped us to plan arKI Drganise our #FNDandUS campaign Southampton RTC fomally announced us 88 their charlty of the year to help us raise awareness of FND and to help Trmth fundraising. We'd like to thank them for Ihelr help and support. World FND Month Encouraged participation from the general public and our FND community in our 7 Annual #FNDAvRre Awareness Campaign Worfd FND Our patron Lorraine Kelty also got involved In creatlng positive message for our FND cx)mmunity, Nwth over 2.7k vlews on our FND Hope You Tube Channel. -Aprll Is World FND month ond in these unprecedented tirne5 our olm Is to continue to offersupport throughout this pandemic. os we recoqnise that FND doesn't stopfor anythlng. We oll need to ty to remain positive. ond os artive us possible. Remember we are allowed to oo out Into thefresh olrfor exerclse once o day. of course many of us ore in isolotion due to the lockdown, but remember physical so¢iol distoncing does nrtmean emotlonal dlstanring. You can pick up the phone. wrlte a letter, artdi￿n in with some of the actlvities durlng World FND Month. FND Hope UK ore herefvr pvu. Anyfvm? olexercisefor your mind ond body is SO Positive to keep you motivoted. So tryond do what you can. Levs try to look at what we do have this month rother thon what we don't. Positivityis the key when tlmes ore hard. So let s all keep motivated os best we con and help those around us 05 together we've got thls. I m FND Awore are you? Take care andstay well-. Loffaine Kelty CBEPotron o Many more also got involved The t￿￿1 of Trustees gettirKJ involved to share wth our I￿￿M￿nIty th8t Wè arè #FNDAwBTe 1014 pe￿e reached ¢Jn ￿r TAR March 2012 Section D Achievements and performance Clini081 Neuropsychologisl al Ihe John Fiadcliffe Hospitsl in Oxford, Dr Niels Detert. 1li8cu&%es Mindfulness during FND Month 524 vIe￿S on You Tube The Brain Charity ILiverpooll getting In￿%￿d in rdising 8Ware￿$S of FND FNDM¢ntl 872 Fwple Teached on our Open F8(*botsk Page Pembroke Caslje lighting up Blue for Wortd FND Month to support Ihe NHS, photo by Beverfy Thom88 1019 peoF4e reached on wr Open Lauren share her St￿ in the BarkiTrJ and Dagenham Post 1168 people ￿ch on wn u•• IVh•n B5 UablFII 19 loj) EF m2 gn•J byty* ortsyj on D&t• of rov41 ablog 21