||**Trustees' Annual Report**|**Trustees' Annual Report**|**Trustees' Annual Report**|**Trustees' Annual Report**|**Trustees' Annual Report**|**for theperiod**|**for theperiod**|**for theperiod**| |---|---|---|---|---|---|---|---|---| ||**From**|Period start date|||**To**|Period end date||| |||01|01|2022||31|12|2022| ## Section A Reference and administration details |**Charity name**
**Other names charity is known by**
**Registered charity number (if any)**
**Charity's principal address**|
FND Hope UK|
FND Hope UK| |---|---|---| |||| ||
FND|Hope| |||| ||1173607 & SC048333|| |||| ||
21 Chetwode|| ||Banbury|| ||Oxfordshire|| ||**Postcode**|**OX16 1QN**| ## **Names of the charity trustees who manage the charity** |1
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12|**Trustee name**|**Office (if any)**|**Dates acted if not for whole**
**year **|**Name of person (or body) entitled**
**to appoint trustee (ifany)**| |---|---|---|---|---| ||Lucinda Sian
Smulders|Chair||| ||Bridget Danielle
Mildon|Trustee||| ||Abigail Bishop-
Laggett|Trustee||| ||Christopher
Symeon|Trustee||| ||Vincent Smith|Trustee|Resigned: 04.04.2022|| ||Stephen
Betteridge-Sorby|Trustee||| ||Helen Bolter|Trustee||| ||Robert Wilson
Thomas|Trustee|Resigned: 22.06.2022|| ||Joyce Davies|Trustee|Resigned: 12.01.2022|| ||PennyTrayner|Trustee|Appointed: 01.03.2023|| |||||| |||||| ||**Names of the trustees for the charity, if any, (for example, any custodian trustees)**|||| ||**Name**||**Dates acted if not for whole year**|| |||||| |||||| |||||| **TAR** March **2012** 1 ## **Names and addresses of advisers (Optional information)** |**Names and addresses of advisers (Optional information)**|**Names and addresses of advisers (Optional information)**|**Names and addresses of advisers (Optional information)**| |---|---|---| |**Type of adviser**
**Name**
**Address**||| |||| |||| |||| |||| |**Name of chief executive or names of senior staff members (Optional information)**||| |Dawn Golder||| Dawn Golder ## **Section B Structure, governance and management** ## **Description of the charity’s trusts** Constitution of a Charitable Incorporated Organisation whose only voting Type of governing document members are its charity trustees dated 28[th] June 2017 (eg. trust deed, constitution) Charitable Incorporated Organisation (CIO) How the charity is constituted (eg. trust, association, company) Trustees are recruited and appointed under clause 10 of the Constitution Trustee selection methods (eg. appointed by, elected by) (1) Apart from the first trustees, every trustee must be appointed, for a term of [three] years, by a resolution passed at a properly convened meeting of the charity trustees. (2) In selecting individuals for appointment as charity trustees, the charity trustees must have regard to the skills, knowledge and experience needed for the effective administration of the CIO ## **Additional governance issues (Optional information)** - Trustees have undertaken the following online courses, created by VSL - You **may choose** to include Consulting: An Introduction to Safeguarding Children - for Charities, The - additional information, where UK and EU GDPR's - Awareness Training for Charities, and An - relevant, about: Introduction to Safeguarding Adults at Risk - for Charities - • policies and procedures adopted for the induction and FND Hope UK had 39 active volunteers supporting our FND community training of trustees; with Peer Support, Marketing, Social Media, Finance and Grant - • the charity’s organisational Writing/Researching. We are extremely grateful to each and every volunteer who have given their time to help us support and advocate for - structure and any wider our FND community. Our volunteers have also undertaken in completing - network with which the charity the online courses: An Introduction to Safeguarding Children - for - works; Charities, The UK and EU GDPR's - Awareness Training for Charities, and - • relationship with any related An Introduction to Safeguarding Adults at Risk - for Charities - parties; - • trustees’ consideration of major risks and the system and procedures to manage them. ## **Section C Objectives and activities** **TAR** March **2012** 2 FND Hope UK aim to change how functional symptoms are understood and defined within the UK. We work in a concerted manner to advocate for the Men, Women and **Summary of the objects of the** Children who have had their lives impacted by physical and often **charity set out in its** debilitating functional symptoms. **governing document** Our mission is to promote awareness, support affected individuals, and advance research for the prevention, treatment and recovery of FND. The relief of sickness and preservation of health of those affected by Functional Neurological Disorder (FND) and their families, carers and communities. In particular, but not exclusively by: 1) Raising awareness and understanding of the general public into the nature, causes, diagnosis, prevent, treatment and recovery of FND **Summary of the main** through social media, charitable events, medical conference and any **activities undertaken for the** other educational means such as leaflets and booklets **public benefit in relation to these objects (include within** 2) Coordinating a voluntary FND patients register to assist doctors in the **this section the statutory** advancement of new and ongoing research, prevent, treatment and **declaration that trustees have** recovery of FND in partnership with the Genetic Alliance. **had regard to the guidance issued by the Charity** 3) Working with Medical and Allied Health Professionals to provide a **Commission on public** better understanding of FND, improve medical protocols, and promote **benefit)** ethical standards for FND through personal contact, advocacy and training. ## **Additional details of objectives and activities (Optional information)** You **may choose** to include further statements, where relevant, about: - policy on grantmaking; - policy programme related investment; - contribution made by volunteers. **TAR** March **2012** 3 Section D Achievements and performance Summary of the main achievements of the charity during the year Our mission is to promote awareness of FND, support those affected by the condition and advance knowledge and research for the prevention, treatment and recovery from FND. We are looking forward to a world where FND patients can expect to be treated with the dignity, care and respect they deserve, regardless of the cause of their symptoms. Supporting those affected by FND myFND App - FND Hope UK were grateful to have sponsored the upgraded development of the International myFND App following feedback from service users. The new app was launched on the 4[th] August 2022 following focus groups with the creators BM Inc and service users. - • Development updates included - The ability to create a report to share with healthcare providers - Rewards badges - Ability to select and track multiple symptoms overtime - Improved accessibility features such as dark mode - Lorraine Kelly, Patron for FND Hope UK helped to launch the new app via video, which was played 6,100 times - Since launch, there have been 11,975 downloads Mindfulness for Positive Self Coaching Collaborated with Irene Roura Garcia who has created a Mindfulness for Positive Coaching Course which last 3 weeks, 1.5 hours per session. We launched this in August 2022 and ran 5 courses, with 50 people attending. - During this course our attendees learned/refreshed on some basic concepts and techniques about mindfulness and Cognitive Behavioural Therapy, combining theory and practical exercises. - The course was designed specifically for people experiencing FND, where they learned about mind and body, and techniques to help manage symptoms . DVLA Terminology We contacted the CEO of DVLA (Driving Vehicle Licensing Agency) to update the FEP1 form, specifically the change in terminology from Pseudoseizures and Non Epileptic Attack Disorder to Functional / **TAR** March **2012** 4 Section D Achievements and erformance p Dissociative Seizures. We received a response from the Senior Policy Team Leader on the 22nd September advising that the DVLA Senior Doctor agreed with our request, and the DVLA will now be updating the forms, policies and associated literature over the coming months Scrambled Signals Booklet for our Younger Community We collaborated with two members of our community to create Scrambled Signals. Toni Warrilow and Kirsty-ann Johnstone. The booklet was designed to help our younger community learn and understand FND. Booklets have been created in both Digital and Hard copies and have been distributed to both our community and health care professionals ## FND Patient Booklet Distributed 10,700 booklets in 2022 to our community and Healthcare professionals and 10,000 leaflets to raise awareness of FND. Correspondance Responded to 1143 emails in 2022, from our FND community, parents, carers, friends, and healthcare professionals, which has increased by 50% from 2021 ## Online Support Groups We have a total of 9 Support Groups: England, Scotland, Wales, East of England, North East, London, Parents, Carers and South West. We held a total of 99 support groups via Zoom, with 599 attendees. Online movement and Wellbeing Classes In collaboration with Synergy Dance Outreach, and registered charity which provides innovative dance and yoga activities in schools, leisure centres, outreach centres and care homes. Inclusivity is vital to us. At Synergy, no one is left behind and we were determined lockdown would not stop us making a difference. We offer our community Seated Dance, Seated Yoga and Seated Pilates. We have also collaborated with CREATE (Creative, Reflective, Emotive, Art Therapy for Everyone) to run Art classes and Mindfulness Energy to offer Mindfulness Meditation classes on a weekly basis. **TAR** March **2012** 5 Section D Achievements and erformance p In 2022, held 246 online movement and wellbeing with 2,097 people attending which is a 133% increase from 2021. ## Website We had 116,154 users to our website fndhope.org in 2022 from the United Kingdom - 87,736 England - • 12,774 Scotland • 4,120 Wales • 2,208 Northern Ireland • 905 Not Set - 113 Isle of Man ## Newsletters We sent 10 newsletters in 2022 with 6,328 people reading our news. This enables us to communicate directly with our community, and healthcare professionals and provide invaluable updates on the work FND Hope UK are doing. ## Webinars Collaborated with Irwin Mitchell Solicitors, Kate Hayward – Occupational Therapist, Vocational Rehabilitation Service, The National Hospital for Neurology and Neurosurgery, London and Clare Nicholson – Occupational Therapist, FND Rehabilitation Service, The National Hospital for Neurology and Neurosurgery, London to present a webinar on Reasonable Adjustments in the workplace. ## Telephone Helpline Our pilot with the Brain & Spine Foundation finished in February 2022 after a 3 months study. 106 call-backs were completed, with an average call duration of 21.83 minutes. - 69 call back were in relation to related to supporting people whose diagnosis has an impact on their mental health. 14 people were carers and 88 of the people supported were patients. We also spoke to 14 family members and 2 partners as well as 1 Health Professional. - We captured the location of 99 people out of the 106 and South East was the area that most enquiries came from (20.2%). We also identified in our own member suvey, that whilst our community rated it a useful resource, over 50% had not used the service, we agreed not to continue with this service. ## Advance Research - FND Hope UK have become Patient and Public Involvement where we evaluate and provide feedback on the research projects. • Functional Sensory Symptoms - Glenn Nielsen, St Georges - • – Physio4FMD Study Glenn Nielsen, St Georges **TAR** March **2012** 6 Section D Achievements and erformance p - NEUROADS - Understanding risk factors and symptom triggers in functional neurological disorder: a pilot investigation Study - Dr Susannah Pick, Kings College - Randomised feasibility study of eye movement desensitisation and - reprocessing therapy for functional neurological disorder: Dr Sarah Cope – St Georges - UCLH Functional Seizures Project with Dr Mahinder Y ogarajah and Rachel Dean, from University College Hospital and St Georges. Facilitiated and supported focus groups with Dr Sue McKenzie and High Cunningham on undertaken to better understand the current management of patients with Functional Neurological Disorder (FND) within the NHS Fife catchment area, and if there is any understanding of a path through the healthcare system for the FND patient population within the NHS Fife, which was understaken by Fife Health and Social Care Partnership. Diagnosis & access to treatment Neurological Alliance my Neuro survey - Supported the creation and distribution of the My Neuro Survey to give a picture of the experience of care, treatment and support for people affected by neurological conditions. Over 8,500 people took part `o` 849 Adults and 64 Young Adults and Children took part with a diagnosis of Functional Neurological Disorder Optimal FND Carepathway We continued to collaborate on the Optimal FND Care pathway with the Neurological Alliance, National Neuro Advisory Group, Professor Mark Edwards and Dr Mike Dilley. We were actively engaged in the public consultation to gather input, view and experience from people with neurological conditions and wider stakeholders **TAR** March **2012** 7 Section D Achievements and erformance p Neurological Alliance Policy Group Our FND Hope UK Executive Director is the Vice chair to the Neurological Alliance Policy Group to support the Neurological Alliance’s Policy Group in identifying opportunities to influence national public policy in the interests of the one in six people in England with a neurological condition. FND Education Module for Healthcare Professionals Supported, facilitated and arranged focus groups, with Dr Ania Crawshaw from St Georges, with the FND community to discuss the development of an online FND educational module for Healthcare professionals to ensure patient priorities reflected in the course. The course is now on the FutureLearn website. Freedom of Information Project In 2022, we surveyed, though a Freedom of Information request, all of the Clinical Commissioning Groups and Health Board in the UK as to their current provision of multidisciplinary rehabilitation for people with FND, as well as if they had active plans for developing or expanding services. We found that: - 50% of UK health boards / CCGs had no specific agreement to treat FND or did not treat FND, and almost 10% say that they do not accept referrals for treatment - Between 14% (England), 21% (Scotland) and 43% (Wales) of services said that they did not accept physiotherapy referrals or provide physio for FND. Less than half (43%) said they had neurological physiotherapy services which would accept people with FND. - Between 22% (England), 21% (Scotland) and 43% (Wales) of services said that they did not accept occupations therapy referrals or provide occupations health for FND and less than half (41%) said they had neurology based occupational therapy services which would accept people with FND. - • Between 17% (England), 14% (Scotland) and 43% (Wales) of services said that they did not accept speech and **TAR** March **2012** 8 Section D Achievements and erformance p - language therapy referrals or provide speech and language for FND and only 39% said they had neurology-based speech and language therapy services which would accept people with FND. - Between 16% (England), 29% (Scotland) and 43% (Wales) of services said that they did not accept psychology referrals or provide psychological therapy for FND, whilst 42% said they would accept people with FND. - Only 35% said they had plans to improve their services for people with FND and only 35% said they were potentially interested in accessing further education or support to improve services. This survey highlights the current patchy and inequitable provision of rehabilitative services for people with one of the commonest causes of neurological disability. ## Raising awareness in the general & medical communities ## Conventions To help raise awareness in our medical communities, we attended the Neuro Convention (our 3[rd] year running) which is an exhibition for healthcare professionals working in neuro rehabilitation. We also attended Therapy Expo which is an educational event for physiotherapists, sports therapists, osteopaths, chiropractors, and neuro therapists. We also arranged for Glenn Nielsen to do a presentation on FND with 56 attendees learning more about FND **TAR** March **2012** 9 Section D Achievements and erformance p ## Impact Report We created our very first charity impact report which was distributed to our community, healthcare professionals, carers, friends and families and also shared with funders and supporters. ## World FND Month Supported the annual World FND Month in April 2022 to continue to raise awareness of FND to our community, general public and healthcare professionals. Our Patron, Lorraine Kelly created some short videos, explaining what FND is, and asking our community to get involved in our #FNDaware campaign by sharing the #FNDaware poster. ## Social Media Presence Our social media presence is increasing year on year. In 2021 we had a total of 19,600 people follow us on our social medial channels Facebook, Twitter, and Instagram. In 2022 this increased to 24,740 followers. ## BPS DoN Position Statement FND Hope UK were asked to be part of the BPS DoN Position Statement on the role of clinical neuropsychology in the management of children and adults with functional neurological disorders as experts by experience and representing the FND community. **TAR** March **2012** 10 Section D Achievements and erformance p Study Days FND Hope UK were asked to attend a number of FND study days organised by different organisations, to provide a patient perspective on FND and how FND Hope UK supports and advocates for the FND Community - Royal College of Emergency Medicine study day - • Speech and Language FND study day through the East Midlands Progressive Neurology Clinical Excellence Network - Cygnet Health - Royal National Orthopedic Hopsital Hidden Disabilities We collaborated with Hidden Disabilities on creating a Podcast, along side Dr Chris Symeon on what FND is and a personal FND journey, including creating an FND Sunflower card for our community. ## **Finances** - We secured Grants of £16,144, including: • The National Lottery Community Fund £8,169.00 - • Versus Arthritus on behalf of Sports England £4,500.00 - D’Oyle Carte Charitable Trust £2475.00 - Girdlers Company £500.00 ## **Fundraising/Donations** Thank you to our FND community, friends, family and healthcare professionals, we raised a total of £76,022. **TAR** March **2012** 11 Section E Financial review The cllarity has agreed an Unrestri￿ reserves p)licy of £14.700.(KI. whth covers crf 6 months. of thine mOvw￿nt and vftklbeing dasses. irtsurance. fflemberships aTrJ subs(wti'ons. ReseT¥es ￿Trenty exceed th￿ arnou￿ because the (*barity is Wa￿ng for FND lntematW￿ to send the shared services invoices for 2022. TTUStees are also Ic￿1[¥j to re(zuit fu14ime staff as the tharity is grthving arvj h&s been 1￿% volunteer led SIn￿ its (j)nceptI￿ on the 28th June 2017. In addition, the chaiity is lookn'ng to wte Educatic￿al Modul8S to supwt the education of Sd￿lS, Universitses. H8althcare Professionals Brief statement of the charl￿$ policy on reserves D•talls ol any funds MatOr￿ty in deficit Further flnanclal rgviow details {Oplion¥l Inforni￿OnI You may choose to indude tditional wrfomation. Yther8 relevant aboutr. the char￿S wniipal sources of ftjnds (induding any fundrnising).. hthv 8xp8nditure has support￿1 the key ot4'ectives of the charity.. investment polw arKI objectives induding any ethical inveslrnent FKJlicy adopted. Rev8nue: £76,022 Net Pr￿. £24,739 Total Funts: £103.459 Section F Other optional information We a r8gistered tharity in E￿land & Wales 1173607 and Scot1￿ SC048333 Section G Declaration Slgned on bohaff of tho chartvg trustees Slwatur•(s) Full nanWs) Posltlon (eg Secretary. Chair. etc Dabyn Golder ucnda Smulders cIGf l ?C'i ts TAR 12 2012 **Independent examiner's report on the accounts** ## **Section A Independent Examiner’s Report** |**Report to the trustees/**
**members of**
**On accounts for the year**
**ended**
**Set out on pages**
**Responsibilities and**
**basis of report**|Charity Name
FND Hope UK|Charity Name
FND Hope UK|Charity Name
FND Hope UK| |---|---|---|---| ||||| ||31 December 2022|**Charity no**
**(if any)**|1173607 and
SC048333| ||||| ||1 - 2
(remember to include the page numbers of additional sheets)||| ||I report to the trustees on my examination of the accounts of the above
charity (“the Trust”) for the year ended 31 December 2022.
As the charity trustees of the Trust, you are responsible for the preparation
of the accounts in accordance with the requirements of the Charities and
Trustee Investment (Scotland) Act 2005 (the 2005 Act), the Charities
Accounts (Scotland) Regulations 2006 (as amended) and the Charities Act
2011 (“the Act”).||| I report in respect of my examination of the Trust’s accounts carried out under section 44 (1) ( c) of the 2005 Act and section 145 of the 2011 Act and in carrying out my examination, I have followed the applicable Directions given by the Charity Commission under section 145(5)(b) of the Act. **Independent** I have completed my examination. I confirm that no material matters have **examiner's statement** come to my attention in connection with the examination which gives me cause to believe that in, any material respect: - accounting records were not kept in accordance with section 44 (1) (a) of the 2005 Act and Regulation 4 of the Charities Accounts (Scotland) Regulations 2006 (as amended) and section 130 of the Act or - the accounts do not accord with the accounting records I have no concerns and have come across no other matters in connection with the examination to which attention should be drawn in order to enable a proper understanding of the accounts to be reached. |**Signed:**
**Name:**
**Relevant professional**
**qualification(s) or body**
**(if any):**
**Address:**

||05/09/2023| |---|---|---| |||| ||Linda Dunford|| |||| ||FCCA CTA|| |||| ||4 Marigold Drive|| ||Bisley|| ||GU24 9SF|| **October 2018** 1 **IER** **Charity Name No (if any) FND Hope UK 1173607 & SC048333 Receipts and payments accounts CC16a For the period** Period start date Period end date **To from** 01/01/2022 31/12/2022 |**Section A Receipts and payments**|**Section A Receipts and payments**|||||||||||| |---|---|---|---|---|---|---|---|---|---|---|---|---| ||**Unrestricted**
**funds**||**Restricted**
**funds**|||**Endowment**
**funds**|||**Total funds**||**Last year**|| ||**to the nearest**
**£**||**to the nearest**|**£**||**to the nearest**|**£**||**to the nearest £**||**to the nearest**|**£**| |**A1 Receipts**||||||||||||| |Donations and Legacies|**59,878**|||**-**|||**-**||**59,878**||**66,783**|| |Grants|**9,169**||**6,975**||||**-**||**16,144**||**4,680**|| |||||**-**|||**-**||**-**|||**-**| ||**-**|||**-**|||**-**||**-**|||**-**| ||**-**|||**-**|||**-**||**-**|||**-**| ||**-**|||**-**|||**-**||**-**|||**-**| ||**-**|||**-**|||**-**||**-**|||**-**| ||**-**|||**-**|||**-**||**-**|||**-**| |**_Sub total_**_(Gross income for_
_AR)_|**69,047**||**6,975**||||**-**||**76,022**||**71,463**|| |**A2 Asset and investment sales,**||||||||||| |---|---|---|---|---|---|---|---|---|---|---| |**(see table).**||||||||||| ||**-**||**-**|||**-**||**-**||| ||**-**||**-**|||**-**||**-**||**-**| |**_Sub total_**|**-**||**-**|||**-**||**-**||**-**| |||||||||||| |**_Total receipts_ **|**69,047**||**6,975**|||**-**||**76,022**||**71,463**| |**A3 Payments**||||||||||| |Charitable activities|**13,366**||**240**||**-**|||**13,606**||**27,439**| |Marketingand brochures|**21,191**||**-**||**-**|||**21,191**||**8,448**| |Trainingcosts|**803**||**-**||**-**|||**803**||**3,469**| |Office costs|**3,322**||**-**||**-**|||**3,322**||**3,466**| |Legal andprofessional fees|**5,733**||**-**||**-**|||**5,733**||**6,086**| |Accountancy|**666**||**-**||**-**|||**666**||**612**| |Subscriptions|**1,196**||**-**||**-**|||**1,196**||**869**| |Venue hire,hotel and accommodation|**1,242**||**-**||**-**|||**1,242**||**823**| |Insurance|**837**||**-**||**-**|||**837**||**844**| |Bank charges and interest|**1,611**||**-**||**-**|||**1,611**||**821**| |Travel|**415**|||||||**415**||**-**| |Grants returned|**-**||**-**||**-**|||**-**||**10,000**| |Sundryexpenses|**661**||**-**||**-**|||**661**||**66**| |**_Sub total_ **|**51,043**||**240**||**-**|||**51,283**||**62,943**| |||||||||||| |**A4 Asset and investment**||||||||||| |---|---|---|---|---|---|---|---|---|---|---| |**purchases, (see table)**||||||||||| ||**-**||**-**|||**-**||**-**||| ||**-**||**-**|||**-**||**-**||| |**_Sub total_ **|**-**||**-**|||**-**||**-**||**-**| |||||||||||| |**_Total payments_ **|**51,043**||**240**|||**-**||**51,283**||**62,943**| |**_Net of receipts/(payments)_**|**18,004**||**6,735**|||**-**||**24,739**||**8,520**| |**A5 Transfers between funds**|**-**||**-**||**-**|||**-**||**-**| |**A6 Cash funds last year end**|**78,480**||**240**||**-**|||**78,720**||**70,200**| |**_Cash funds this year end_**|**96,484**||**6,975**|||**-**||**103,459**||**78,720**| Section B Statement of assets and liabilities at the end of the period nds funds lo M•re•t£ B1 Cash funds 1&17S 97$ nds B4 Ass•ts ratain￿ forth• charws oym use BS Uabllltles SpJi*ire Date of roval eslL,ZS So lo?