2021-12-31-accounts

	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	2021		31	12	2021

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 2 3 4 5 6 7 8 9 10 11 12	Trustee name	Office (if any)	Dates acted if not for whole **year **	Name of person (or body) entitled to appoint trustee (ifany)
	Matt Birtwistle	Chair	Resigned 10.03.2021
	Louyse McConnell- Trevillion	Trustee	Resigned 18.02.2021
	Bridget Danielle Mildon	Trustee
	Lucinda Sian Smulders	Chair
	Robert Wilson Thomas	Trustee
	Richard Newland	Trustee	Resigned 19.05.2021
	Joyce Davies	Trustee
	Abigail Bishop- Laggett	Trustee
	Christopher Symeon	Trustee
	Vincent Smith	Trustee	Appointed 27.10.2021
	Stephen Betteridge-Sorby	Trustee	Appointed 27.10.2021
	Helen Bolter	Trustee	Appointed 27.10.2021

Names of the trustees for the charity, if any, (for example, any custodian trustees)

Name Dates acted if not for whole year

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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
Independent Examiner	Warner Wilde Limited	4 Marigold Drive, Bisley. GU24 9SF
Name of chief executive or names of senior staff members (Optional information)
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, 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 and Volunteers have undertaken the following courses You may choose to include • Online GDPR Awareness for Small Charities Course conducted by additional information, where VSL Training relevant, about: • Online Safeguarding Child Awareness Course by VSL Consulting • policies and procedures adopted for the induction and training of trustees; • the charity’s organisational structure and any wider network with which the charity works; • relationship with any related parties; • trustees’ consideration of major risks and the system and procedures to manage them.

Section C Objectives and activities

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Summary of the objects of the charity set out in its governing document Summary of the main activities undertaken for the public benefit in relation to these objects (include within this section the statutory declaration that trustees have had regard to the guidance issued by the Charity Commission on public benefit)

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 Children who have had their lives impacted by physical and often debilitating functional symptoms. 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 through social media, charitable events, medical conference and any other educational means such as leaflets and booklets 2) Coordinating a voluntary FND patients register to assist doctors in the advancement of new and ongoing research, prevent, treatment and recovery of FND in partnership with the Genetic Alliance. 3) Working with Medical and Allied Health Professionals to provide a better understanding of FND, improve medical protocols, and promote ethical standards for FND through personal contact, advocacy and training.

Additional details of objectives and activities (Optional information)

FND Hope UK had 22 active volunteers supporting our FND community with Peer Support, Marketing, Social Media, Finance and Grant Writing/Researching. We are extremely grateful to each and every volunteer who have given their time to help us support and advocate for our FND community.

You may choose to include further statements, where relevant, about:

• policy on grantmaking;

• policy programme related investment;

• contribution made by volunteers.

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Section D Achievements and performance

Summary of the main achievements of the charity during the year

UK Board

• We have strengthened our board by recruiting three new additional board members to increase the skill set and diversity. o Vincent Smith – CEO of Meningitis Research Foundation. Experience of being an international consultant, Chief Operating Officer and Head of Direct Marketing for organisations as diverse as Cancer Research UK and the African Centre for Economic Transformation (Ghana). Charity Strategy experience.

• o Helen Bolter - Studying for a Masters at Edinburgh University in: The Clinical Management of Pain. Completed short courses in Fundraising for Charity (University of Kent) and Business and Strategy for Charity (Directory of Social Change). Undergone NHS Level 2 training in Safeguarding of both children and adults. Previous experience in grant-writing and in teaching at undergraduate and postgraduate level.

• o Stephen Betteridge-Sorby - Carer for FND Partner. Nurse Consultant & Lecturer in Paediatrics. Held Executive positions in the NHS, Department of Health, Education and Charity Sectors. Appointed Medallist of the Order of the British Empire in the 2021 Queen's Birthday Honours list in recognition of his achievements.

Medical Expert Committee

The UK MEC currently comprises of 21 Medical and Allied Health Professionals across the UK

• The UK MEC have undertaken a number of projects during 2021 o Commenced work on understanding the prevalence of FND which has been estimated to be between 50k and 100k adults in the UK

• o Discussions on how Long Covid patients are experiencing functional symptoms. Research is being done within this area

• o Commenced contacting all CCG’s and Health Boards to identify if they are commissioned to treat FND patient, this will run into 2022.

• UK MEC and FND Hope UK co-signed a letter addressed to the Health Minister in response to a petition which reach over 10k signatures.

• o Support in answering questions raised by our community o Discussions on NHS Choices and how we can separate FND from the Medically Unexplained Symptoms.

myFND app

• myFND is a mobile application which aims to enable users to understand and self-manage symptoms of Functional Neurological Disorder (FND). First released in May 2020, we now want to fund updates to the myFND app to make it easier to use, more engaging, and better positioned to help people affected by FND.

• The myFND app supports patients who need it most. It enables them to better understand their condition, recognise how their symptoms change, and learn how they can begin to self manage the disorder.

• • The project to create the app was led by Dr Chris Symeon, Consultant Neuropsychiatrist, and the multidisciplinary team at The Wolfson Neurorehabilitation Service, St George’s University Hospitals NHS Foundation Trust. Throughout the development, the team

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Section D Achievements and erformance p

consulted with clinicians and service users, along with getting input and evaluation from FND Hope UK and clinical and academic experts in the field. We also solicited support and guidance from DigitalHealth.London and NHS Digital.

• So far, the project has been funded by St George’s Hospital Charity and Dr Chris Symeon was seeking further funding to expand the app’s functionality and integration in line with direct user feedback.

• The next update of the myFND app will include accessibility improvements, such as additional font size control and dark mode, the ability to track multiple symptoms and push notifications. We will also incorporate additional strategies for self-management techniques and enhance the instructional and resource aspects of the app with an Info Hub website. The instructional/educational content will be searchable and users will be able to apply filters.

• FND Hope UK agreed to support and invest (Nov 2021) in updating the myFND App.

Online Movement and Wellbeing Programs

We wanted to continue to support those affected by Functional Neurological Disorder (FND) through real-time online programming. FND Hope UK collaborates with Synergy Dance © Outreach to deliver accessible yoga, dance, and Pilates sessions, as well as Art Journalling for Wellbeing and Mindfulness / Meditation sessions. We offer five free interactive sessions every week, providing a low-barrier way to connect with others of all ages and improve physical, emotional, and mental health.

All classes are suitable for all ages and abilities, allowing everyone within our community to take part — even those who are bedbound or in a wheelchair. The sessions are held via Zoom, which is free for participants and platform-inclusive.

We continue to publicise our online programming through our existing channels, including Twitter, Facebook groups, our Peer Support network, and our monthly newsletter.

125 Movement Classes held in 2021 via Zoom (Yoga, Dance, Pilates, Mindfulness Meditation and Art Journalling for Wellbeing ) providing activities for our community.

Peer Support Groups

We offered 80 peer support groups during 2021. With over 150 people attending between September 2021 and December 2021 to keep our community safe during COVID. With the help and support of 13 volunteers, we organised 1 hour virtual peer groups using our Zoom platform each month in the following areas

• Wales

• • England • Parents • Ireland / Northern Ireland • Carers • East of England

• • London

“Talking to people who understand what it is like will make a difference.”

Servicer User

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“I appreciate other people's experience and how to cope.” Service User

Between September 2021 and December 2021 close to 600 people attended our Online Movement/Wellbeing Classes and Peer Groups.

Collaboration with The Brain & Spine Foundation

FND Hope UK was delighted to be collaborating with the Brain and Spine Foundation to offer an appointment-based telephone helpline service for our FND community. The service would enable our FND community to speak directly with the Brain and Spine Foundation nurses bringing together two charity organisations specialising in FND who would provide support in a trusted environment.

We agreed to a 3 month pilot period starting on the 2[nd] December 2021 and finishing on 24[th] February 2022.

In collabration with the Brain and Spine Foundation 52 call-backs were completed between 2nd December and 23rd December with an average call length of 21.27 mins.

Pilot to continue until February 2022.

Videos released by FND Hope UK during 2021 via the FND Hope You Tube Channel for our #FNDandUS Campaign and FND Awareness Videos reached 94.7k views with over 978 subscribers

#FNDandUS Campaign

• FND Hope UK continued to work closely with Director Mike Rumsey from Rumsey Films where we were able to document the inspiring personal FND journeys of six of our service users. The campaign was a continuation of our successful launch in 2020.

• Our #FNDandUS Campaign saw over 800k video views (Facebook, Twitter, Instagram and You Tube) to raise awareness of FND between July 2021 and December 2021 - Ellie, Andy, Summer, Alex, Leah and Brian

World FND Month

• Encouraged participation from the general public and our FND community in our 9[th] Annual #FNDAware Awareness Campaign World FND Month

• I’m Still Me FND Awareness Video

• Our FND Community, Patron, Medical and Allied Health Professionals, Friends, Families, and Carers have all come together in this video to help raise awareness of Functional Neurological Disorder. We would particularly like to thank Alison Newland our Peer Support Worker and Volunteer for writing and producing the song shown in the video called "I'm still me".

• This had a reach of over 42,000 views on Facebook, 1,200 views on You Tube

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FND Awareness Videos by Professor Mark Edwards as part of World FND Month

Professor Mark Edwards, Professor of Neurology, St Georges University Hospital alongside Mike Rumsey from Rumsey Films, created 9 different videos to help raise awareness of FND for the general public, FND Community and Medical Community.

With over 6,500 video views on FND Hope You Tube channel, 228,199 impressions on Twitter, and 160,166 reach on Facebook and Instagram.

• What is FND

• FND Pathway

• Impact of FND

• Patient Organisations

• FND and Children

• FND Symptoms

• FND Diagnosis Part 1 and Part 2

• FND Treatment Services

Advocacy and Support

• We responded to over 900 emails from our community to support them with questions, identifying FND specialists, sign-posting them to resources we have on our website.

FND Patient Booklets and Leaflets

• During 2021, we distributed 3,287 FND Patient Booklets to our FND community, Carers, Parents, Medical and Allied Health Professionals.

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Patient
Carers
Medical
Professionals
Parents
Other
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Keeping our community informed

9 Virtual Newsletters sent with over 5,000 people opening and reading our newsletters during 2021.

Research

• Provided a platform via the Research Committee to review research projects and recruit accordingly. FND Hope UK supported 12 UK specific Research Projects.

Neurological Alliance

• FND Hope UK has been working very closely with the Neurological Alliance and the National Neuro Advisory Group (NNAG) following

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the Mental Health and Neuroscience Leaders away day in 2019. NNAG, along with Professor Mark Edwards, Dr Mike Dilley and our Executive Director and other stakeholders groups came together to discuss Functional Neurological Disorder. The outcome of the breakout session identified challenges in accessing appropriate care, support and treatment across the UK so together we developed an Optimal FND Care Pathway. FND Hope UK organised three focus groups with our service users to provide an overview of the pathway, and to obtain feedback. We were joined by members of the Neurological Alliance and Professor Mark Edwards.

• We supported the advertising of the new NeuroLifeNow app which was created by The Brain & Spine Foundation and the Neurological Alliance.

• The Executive Director was part of the working group for the My Neuro Survey which is run by the Neurological Alliance every two years. The aim of the survey is to understand the patient experience in all neurological conditions. The survey ran from October 2021 to Jan 2022 with FND being in the top 5 reported neurological conditions.

• The Executive Director remains co-chair of the policy group which is run every quarter.

Neurological Alliance of Scotland

• We have started to work more closely with the Neurological Alliance of Scotland, specifically around the lack of FND Services and no mention of FND on the NHS Inform platform.

Social Media

• Our social media presence is increasing year on year

• 19,600 people follow our news on Instagram, Facebook and Twitter.

Grants

FND Hope UK was successful in obtaining a Grant from Versus Arthritis for £4680.00 to enable us to continue to offer our online movements classes: Yoga, Dance and Pilates to our FND community free of charge for a 6 month period. The award was granted to start from 1st October 2021 to 31st March 2022.

Organising Focus Group for FND Education for Health Care Professionals

FND Hope UK in collaboration with Dr Ania Crawshaw a Neurology Registrar and Clinical Lecturer at St George’s University London who is working together with Professor Mark Edwards to develop an online FND education module for healthcare professionals organised focus groups with the FND community to obtain their ideas on developing the project to ensure that patient priorities are included and reflected in the course content. The module is intended to include information about FND (including definition, current understanding about mechanisms, clinical features, positive diagnostic signs and management) and a section focusing on communication skills and language that can be helpful in consultations with patients who have FND.

Discussions with MPs

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FND Hope UK wrote too many MP’s to invite them along to discuss FND to help raise awareness and to inform them of the issues being experiencing by our FND community.

We were able to get the following Parliamentary Questions raised with responses

• 'To ask the Secretary of State for Health and Social Care, what plans he is putting in place to ensure consistent guidance and definition for the neurological condition ‘Functional Neurological Disorder’ across the NHS'. Dr Lisa Cameron, SNP and Chair of the APPG for Disability

Answered 29.04.2021 - People with functional neurological disorder (FND) are likely to be diagnosed under a local clinical commissioning group care pathway and therefore any data would only be collected a local level. There are presently no specific plans to further ensure the collection of data on the number of patients with FND.

• ' To ask the Secretary of State for Health and Social Care,

• pursuant to the Answer of 29 April 2021 to Question 184486 on Functional Neurological Disorder, what plans are in place to ensure consistent coding and recording among CCGs and Health Boards of Functional Neurological Disorder through a nationally agreed data code and definition'? Dr Lisa Cameron – SNP and Chair of the APPG for Disability Answered 20 May 2021 - There are currently no specific plans to do so. The Department is currently funding research projects into functional neurological disorder through the National Institute for Health Research, which will improve understanding of the condition

• 'To ask the Secretary of State for Health and Social Care, what plans are in place to fund and deliver a national NHS care pathway for functional neurological disorder'? By Peter Dowd, Labour Answered 20 May 2021 - The National Neuro Advisory Group (NNAG), which includes NHS England and NHS Improvement, Public Health England, expert bodies, clinicians, academics, and patient voice organisations, develops and coordinates the national programme of neurology service improvement. The NNAG has a priority in their work plan for 2021/2022 to support development of a clinical pathway for functional neurological conditions, including functional neurological disorder.

• 'To ask the Secretary of State for Health and Social Care, what assessment he has made of the need for specific NICE guidance for the diagnosis and treatment of functional neurological disorder'? By Peter Dowd, Labour

Answered 24 May 2021 - The National Institute for Health and Care Excellence (NICE) has guidance in place to support clinicians in the diagnosis of functional neurological disorder. The ‘Suspected neurological conditions: recognition and referral’’ guideline published in 2019 covers the initial assessment of symptoms and signs that might indicate a neurological condition. It helps healthcare professionals to identify people more quickly who should be offered referral for specialist investigation and includes recommendations for people w ho have previously been diagnosed with functional neurological disorder. The guideline is available at the following link: www.nice.org.uk/guidance/ng127(opens in a new tab)

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Neuro Convention at the NEC

FND Hope UK attended the Neuro Convention on the 15th and 16th September 2021 to help raise awareness of Functional Neurological Disorder. We held discussions with Occupational Therapists, Physiotherapists, Charities, members of our community and many other Allied Health Professionals highlighting the great work we are doing, how we support our community and much more. Partnership with Irwin Mitchell FND Hope UK partnered with Irwin Mitchell Solicitors to organise a Financial Wellbeing Webinar on Monday 13th August 2021 The webinar consisted of discussing • Cashflow planning • Pensions

• Managing income and expenditure

• Dealing with debt

• Navigating these tools in exceptional circumstances.

• •

• The webinar also explored how our community can ensure DWP understands how their condition affects them on a day-to-day basis, including: • Understanding the DWP Criteria

• • Knowing when to apply for benefits

• What medical evidence is relevant to support the application

• • General tips on how to complete benefit application forms.

Section E Financial review

The charity has agreed a reserve policy for the following: Brief statement of the £10,000.00 for the distribution and printing of Patient Packs charity’s policy on reserves £5000.00 for the organisation of additional Peer Support Groups within the UK Reserves are higher because we did not have the opportunity to spend due to COVID 19 Details of any funds materially in deficit Further financial review details (Optional information)

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For this period the Charity can report You may choose to include additional information, where Revenue: £71,463 relevant about: Net Surplus: £8,520

• the charity’s principal sources of funds (including Total Funds: £78,720 any fundraising);

• how expenditure has supported the key objectives of the charity;

• investment policy and objectives including any ethical investment policy adopted.

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Section F Other optional information
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We are registered charity in England & Wales 1173607 and Scotland SC048333

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Section G Declaration
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The trustees declare that they have approved the trustees’ report above.

Signed on behalf of the charity’s trustees

Signature(s)

Cindy Smulders Full name(s) Dawn Golder Position (eg Secretary, Executive Director Chair Chair, etc) Date

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CHARITY COMMISSION FOR ENGLAND AND WALES Independent examiner's report on the accounts Section A Independent Examinerfs Report Report to the trusteesl mèmbers of FND Hope UK On accounts for tha year ended 31 December 2021 Charlty no (If any) 1173607 & SC048333 Set out on pagos 1to2 I report to the trustees on my examination of the accounts of the above charity fthe Trusf) for the year erKlgd 3111212021. Respon8lbllltlo• and As the charlty trustees of the Trust. you are responsible for the preparatlon basls of report of the a¢￿Unts in accordance with the raquiremonts of Ihe Charltles Act 2011 ('the Acr). I report In respect of my 8xamlnatlon of the Trusvs accounts carried ¢￿t under section 145 of the 2011 Act and in carykng out my examinatlon, I have followed the applicable Dlrectlon8 glven by tha Charty Commlsslon under section 14q5Xb) of the Act. I have completed my examlnatlon. I confirm that no materfal matters hav8 me to my attention In connectK>n with the examlnallon which giv8s me cause to believe that In, any material r8sped: accounting r￿ordS were not kepl in accordance with section 130 of the Act the attounts do not acc(xd wllh the accountlng record8 Independent oxamlner's statement I have no rnncems and have come across no other matters In connection with Ihe examination lo which attention should be dravm In order to enable proper understsndirvJ of the accounts io be reached. Slgned: Dale: i JU Io Name: Frances Julle Vlllde Rolovant prof•sslonal qualffi¢atlon(s) or body (If any): FCC& DChA Address: 4 Marigold Drive Bisley GU24 9SF IER October 2018

	FND Hope UK	FND Hope UK	FND Hope UK	1173607 & SC048333	1173607 & SC048333	1173607 & SC048333	CC16a
	For the period from	01/01/2021	To		31/12/2021
Section A Receipts and payments
A1 Receipts	Unrestricted funds to the nearest £ 66,783 - - - - - - 66,783 - - - 66,783 24,499 8,448 1,969 3,466 6,086 612 869 823 844 821 10,000 66 58,503 - - - 58,503 8,280 - 70,200 78,480	Restricted funds to the nearest £ 4,680 - - - - - - 4,680 - - - 4,680 2,940 - 1,500 - - - - - - 4,440 - - - 4,440 240 - - 240	Endowment funds to the nearest £ - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - -		Total funds to the nearest £ 66,783 4,680 - - - - - - 71,463 - - - 71,463 27,439 8,448 3,469 3,466 6,086 612 869 823 844 821 10,000 66 62,943 - - - 62,943 8,520		Last year to the nearest £
Donations and Legacies	66,783						43,099
Grants							-
	-						-
	-						-
	-						-
	-						-
	-						-
	-						-
Sub total(Gross income for AR)	66,783						43,099
A2 Asset and investment sales, (see table).
	-
	-						-
Sub total	-						-
Total receipts A3 Payments
							43,099
Charitable activities	24,499						1,660
Marketingand brochures	8,448						11,735
Trainingcosts	1,969						791
Office costs	3,466						4,505
Legal andprofessional fees	6,086						1,537
Accountancy	612						600
Subscriptions	869						678
Venue hire,hotel and accommodation	823						372
Insurance	844						986
Bank charges and interest	821						-
Grants returned	10,000						-
Sundryexpenses	66						-
**Sub total **	58,503						22,864
A4 Asset and investment purchases, (see table)
	-
	-
**Sub total **	-						-
Total payments Net of receipts/(payments) A5 Transfers between funds A6 Cash funds last year end Cash funds this year end
							22,864
	8,280	240	-		8,520		20,235
	-	-	-		-		-
	70,200	-	-		70,200		49,965
	78,480	240	-		78,720		70,200

CCXX R1 accounts (SS)

30/06/2022

1

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