FND FrieNDs Trustees Report April 2022 – April 2023
To accompany accounts dated to 05/04/2023 Charity No.1176608
## Our Aims and Objectives
The aims and objectives of FND Friends is to provide support to anyone suffering from or affected by Functional Neurological Disorder (FND) in the Southwest of England by such means as the trustees deem appropriate, in particular but not limited to advancing the understanding and knowledge of FND among healthcare workers across the Southwest of England and providing a befriending service to help alleviate the isolation experienced by patients and their families.
The Trustees consider the above objectives to be for the public benefit and have due consideration to the Charity Commission’s guidance on public health.
Summary of the activities within the 12 months between 6[th] April 2022 and 5[th] April 2023.
1. Our continuously growing online (Facebook) community of individuals affected by FND, be they patients, relatives or carers has become a valuable resource for all concerned. The number of members on our Facebook closed support group have grown tremendously. This community encourages peer support, demonstrating that individuals are not alone, regardless of where they are geographically or in their FND journey. Some people find us at the beginning of their journey, around time of diagnosis, others find us years down the line. Wherever an individual is, the knowledge that those with FND are part of a large family is important and can assist in acceptance, achieving remission or making the most of a bad day.
2. Provides a platform for the sharing of ideas, knowledge and experience. Many people gather valuable knowledge about how to live with symptoms, where to look for assistance and how to react to the ideas, thoughts and impressions of others.
3. Provides a way in which people can socialise, reducing the social isolation felt by many but especially for those who are housebound by their symptoms.
4. Provides a pool of individuals whom may be willing to further FND research, either through participation or through the sharing of ideas.
5. Enables people to share both positive and negative experiences of the healthcare system within the Southwest of England. Greater knowledge helps people to understand what they can reasonably expect from a particular appointment type, who they can turn to when appointments go wrong and how to navigate the system to best find the assistance they need.
6. Provides us with a window so that we can see where we need to focus the efforts of FND FrieNDs.
7. Represents a small area of the UK. This allows us to discover other organisations within our area, work out how they might benefit our service users, and identify how we can work together to meet the needs of individuals. It also means that service users are more
likely to find others in a similar situation, making it more likely that they can then benefit from meeting up and all that goes with that.
8. The Twitter account, for the dissemination of information about life with FND, is also proving to be a very useful way of finding those affected by the disorder in the SW of England, as well as a tool by which we can reach NHS communities (including CCG groups and NHS England), carers organisations, publicise events and run awareness days.
9. We are offering a new service, visiting isolated individuals who are desperately in need of advice, advocacy and signposting prior to joining some of our meet-ups or on-line communities. We can also accompany individuals to MDT meetings, discussing their needs and supporting them in any way necessary. These services have been strained this year due to Covid restrictions.
10. Upon request, we visit individuals while they are inpatients in the Rosa Burden Centre at Southmead Hospital, providing emotional and practical support as needed.
11. We are continuing discussions with a number of leading clinicians across the country, which has culminated in some networking that is shaping our current activities. We have been consulted in the writing of an article to appear in the BMJ about the diagnosis of FND, as well as policy making in Scotland (although this is out of area, we are still able to use our experience and share ideas for the benefit of all). We regularly meet with Southwest Hospitals to do area updates.
12. We are compiling an FND friendly Consultant Neurologist database for the whole of the Southwest of England. This will not only help patients find the support that they so desperately want and need, it will also aid other healthcare workers (OTs, Physios etc) to find the most appropriate person to refer their patient to, we have also been receiving direct NHS referrals since March 2022.
13. We are continuing to work with other neurological patient support groups (such as the MS society, Parkinson’s, Headway, MNA etc) based in the Bristol area and further afield to form neurological alliances. We are also part of the FND Network committee. We also joined the FND Society and are networking with other professionals up and down the county.
14. Organised patient support group meet-ups across the Southwest, with regular groups now meeting in Bristol, Swindon, Weston-super-Mare, Gloucester, Taunton, Yeovil. Exeter, Plymouth, Torbay, Bournemouth, Weymouth and St. Austell.
15.
- Our offices continue to grow from strength to strength.
16. Designed and printed leaflets that describe what FND is, who we are and what we do. These leaflets have been distributed around our area, handed out at fetes and fayres, posted to those who have asked for them and offered at our local hospitals / Doctors' surgeries.q
17. Raised sufficient funds through fundraising activities, grant writing etc to enable us to perform the above activities.
18. The Bristol office is still up and running but due to Covid we were following Government regulations.
19. We have started the craft days back up in the Bristol office every 2 weeks – new comment.
20. We have launched our new campaign FND Kids Road Show on Awareness Day 25[th] March 2023.
## Optional objectives and activities
1. We are identifying projects that require grant funding and thinking about how and where to apply.
2. We are currently reliant on volunteers for any of the work done by the charity, not just that performed by the Trustees. This work includes fundraising, outreach, publicity, befriending etc.
## Achievements and performance
1. We are the first FND patient support group to work exclusively for people based in the Southwest of England, a population that is traditionally hard to reach and often neglected. We are also the first FND patient support group to offer face – face consultations and discussion groups with invited external speakers.
2. The creation, promotion, and hosting of two Facebook groups: one (closed) group purely for patients and their carers (currently reaching 1,700 members and growing daily) and another (open) group (@functionalsymptoms) available for anyone, including those working with FND patients. Whilst the actual numbers of people in the groups are still fairly low, the impact the organisation has through the Facebook groups is much wider.
3. The creation and continual development of a website (fndfriends.com) which is receiving traffic most days. Through the website, it is not only a way to contact us but we can signpost individuals to different organisations in the Southwest of England and further afield that are intended to help those with disabilities, as well as share ideas, news, research ideas and more.
4. We have a Twitter account (@fndfriendsuk) and Instagram which we use to highlight the plight of patients diagnosed with FND, and to publicise ourselves, the disorder and events to the wider online community.
5. We joined 4 other FND patient support organisations to run a successful online awareness day on 25[th] March 2022 and again 2023. It attracted much attention (using platforms such as Twitter) from major organisations such as multiple NHS groups (such as commissioning groups) and news broadcasters (such as local BBC radio), as well as reaching out to individuals with the condition / blog authors / healthcare professionals who work with FND patients / researchers / and those purely with an interest in the condition. Our Facebook group grew rapidly as a direct result of the awareness day.
6. Encouraged the creation of short stories and poetry, intended for distribution across social media with the #Voices4FND,, as part of FND awareness day UK 2023 and with hashtags #WeCare4FND, #YoungVoices4FND, an invaluable resource not just for patients, but for anyone affected by the condition. For 2023 we focused on kids with FND.
7. The distribution of leaflets to doctor's surgeries, hospitals, chemists, as well as to individuals who have requested help through our Facebook groups.
8. The creation of links between FND FrieNDs and leading medics. This will help us to ensure that patients are being informed of the most up to date thinking, research and ideas, as well as providing us with credibility within the medical world.
9. The development of a feedback service between patients and NHS services provided for patients with FND in the Southwest of England. This enables us to provide a truthful and honest view of the service that is provided.
10. We held several social meet ups on Zoom and MS Teams. We still have not been able to do awareness days in the Hospitals.
11. It is planned that FND Friends starts running training days for trainee and qualified healthcare workers, sharing experiences of what it is like to live with FND, how it can change lives (and not just that of the patient) and how to help people help themselves.
12. We have set up several meetups across the Southwest, but most notably in Taunton, Weymouth, Devon and Cornwall. We are hoping to increase are volunteers' numbers to continue our work in these areas and other areas and to offer more activities and events in the Southwest.
13. We have supported other fundraising ideas, such as sponsored walks, independent markets, and stalls at other events.
14. We have encouraged participation in research opportunities as and when they arise, by raising awareness of specific opportunities through our online communities.
15. Both our offices continues to run successfully as a drop-in centre, where those affected by FND can find help, a friendly ear, or the opportunity to meet similarly affected individuals.
16. We ran a very successful Christmas online zoom party.
17. Other successful fundraising grants from a number of organisations such as Scope and Devon County Council. We have run several online events to raise funds, where the merchandise we have been selling is generally items made and donated by individuals supported by FND FrieNDs. We have also been investigating other funding streams (such as Easyfundraising.com, Amazon Smile, Torbay Lottery and PayPal Giving Fund) and have helped service users to raise money for the charity.
18. We have been working alongside Dr Mallam from Bristol Southmead hospital and Dr Leo Russel to build on our services and the Hospital services throughout the Southwest and building better relationships with all the Hospitals throughout the southwest. This has come with a huge positive affect and has seen most of the Hospitals now referring patients to us after diagnosis and giving out our Website for information.
## Financial Review
1. The charity prepares its annual financial records using the Receipts and Payments accounting method, permitted to unincorporated charities with income of less than £250,000.
2. At the end of the reporting period, the charity held unrestricted cash reserves of £20,707 (2022 - £19,637).
3. The charity will need to retain £10,000 in their account to cover the cost of the next 12 months for core cost such as both offices and activities and therapies sessions. Our Funding can vary as it can be hard applying for grants when more and more charities are applying for the same grants. We will continue to apply for grants for funding and continue with our fundraising events.
4. The charity Trustees believe the charity to still be a going concern and has a busy but productive 12 months ahead of us. We are looking at supporting new service users with all our activities and therapies that we provide.
## Structure, Governance and Management
1. The charity is governed by its CIO Foundation Document dated 10 January 2018 and amended on 11 February 2021 and is constitutes a CIO.
2. The Trustees will continue to recruit Volunteers for current positions available across the southwest. The Charity uses social media to advertise for new staff as well as on
their website. The Charity appoints new trustees from our current volunteers at our AGM through a voting and nomination system.
## Reference and Administrative details
1. Charity registered name – FND FrieNDs
2. Registered number – 1176608
3. Principal address – Bradbury House, Wheatfield Drive, Bradley Stoke, BRISTOL BS32 9D21B
4. Trustees
1. Amanda Hall
2. Caroline Martin
3. Daniel Browne
4. Jessica Edden-Thomson
5. Amy Reeves
6. Hannah Padley (appointed 2023) 7. Suzanna Groves (appointed 2023)
In February 2023 Hannah Padley and Suzanna Groves became a Trustee and in March 2023 Clara Edden-Thomson stepped down from being a trustee.
Approved on behalf of the board of Trustees
Amanda Hall
Chair of the board of Trustees: FND FrieNDs
Date: 27.09.23
**Charity Name No (if any) �FND FRIENDS 1176608 Receipts and payments accounts**
## **CC16a**
|**For the period**
**from**|06-Apr-22
Period start date|**To**|05-Apr-23
Period end date|
|---|---|---|---|
## **Section A Receipts and payments**
**Unrestricted Restricted Endowment Total funds Last year funds funds funds to the nearest £ to the nearest £ to the nearest £ to the nearest £ to the nearest £**
## **A1 Receipts**
|DONATIONS|**977**||**-**||**-**||**977**|||**1,520**|
|---|---|---|---|---|---|---|---|---|---|---|
|GRANTS RECEIVED|**14,205**||**1,165**||**-**||**15,370**|||**10,500**|
|FUNDRAISING|**388**||**-**||**-**||**388**|||**2,184**|
|BANK INTEREST|**--**||**-**||**-**|||||**-**|
|PAYPAL|**3,472**||**-**||**-**||**3,472**|||**7,800**|
|MERCHANDISE|**71**||**-**||**-**||**71**|||**-**|
|REFUNDS|**1,013**||**-**||**-**||**1,013**|||**8,359**|
|LOTTERY|**193**||||||**193**||||
|Misc|**28**||**-**||**-**||**28**||**-**||
|**_Sub total_**_(Gross income for_
_AR)_|**20,347**||**1,165**||**-**||**21,512**|||**30,363**|
|**A2 Asset and investment sales,**||||||||||
|---|---|---|---|---|---|---|---|---|---|
|**(see table).**||||||||||
||**-**||**-**||**-**||**-**|||
||**-**||**-**||**-**||**-**||**-**|
|**_Sub total_**|**-**||**-**||**-**||**-**||**-**|
|||||||||||
|**_Total receipts_ **|**20,347**||**1,165**||**-**||**-**||**30,363**|
|||||||||||
## **A3 Payments**
|RENT|**8,177**||**-**||**-**||**8,177**||**7,703**|
|---|---|---|---|---|---|---|---|---|---|
|INSURANCE|**324**||**-**||**-**||**324**||**325**|
|OFFICE COSTS|**1,212**||**-**||**-**||**1,212**||**531**|
|PRINT, POST AND IT COSTS|**2,214**||**-**||**-**||**2,214**||**6,246**|
|WAGES|**-**||**-**||**-**||**-**||**-**|
|CRAFT SUPPLIES|**148**||**-**||**-**||**148**||**113**|
|PULICITY AND AWARENESS|**-**||**-**||**-**||**-**||**553**|
|TRAINING|**-**||**-**||**-**||**-**||**10**|
|TRAVEL|||**60**||**-**||**60**||**-**|
|EXPENSES|**3,758**||**-**||**-**||**3,758**||**3,940**|
|FUNDRAISING COSTS|**84**||**-**||**-**||**84**||**-**|
|LOTTERY|**-**||**-**||**-**||**-**||**3,139**|
|SUBSCRIPTIONS|**-**||||||**-**||**194**|
|STORAGE|**-**||||||**-**||**795**|
|OTHER MISC COSTS|**3,430**||**417**
1||**-**||**3,847**||**3,234**|
CCXX R1 accounts (SS)
12/01/2024
|MERCHANDISE|**181**||**-**||**-**||**181**||**-**|
|---|---|---|---|---|---|---|---|---|---|
|**_Sub total_ **|**19,528**||**477**||**-**||**20,005**||**26,783**|
|||||||||||
|**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_**||||||||||
||||||||||**26,783**|
|||||||||||
||**819**||||||**819**||**3,580**|
||**-**||||||**-**||**-**|
||**19,637**||||||**-**||**22,826**|
||**20,456.00**||||||**20,456**||**26,406**|
CCXX R2 accounts (SS)
12/01/2024
2
## **Section B Statement of assets and liabilities at the end of the period**
|**Categories**
**B1 Cash funds**
**B2 Other monetary assets**
**B4 Assets retained for the**
**charity’s own use**
**B3 Investment assets**|Bank account
Savings account
Paypal
**Details**
**_Total cash funds_**
(agree balances with receipts and payments
account(s))
NONE
**Details**
**Details**
NONE
**Details**
COMPUTERS
3|**Unrestricted**
**funds**
**19,894**
**813**
**20,707.00**
Agreement Error
**Unrestricted**
**funds**
**to nearest £**
**-**
**-**
**-**
**-**
**-**
**-**
**Fund to which**
**asset belongs**
**Fund to which**
**asset belongs**|**Restricted**
**funds**
**688**
**-**
**688**
Agreement Error
**Restricted**
**funds**
**to nearest £**
**-**
**-**
**-**
**-**
**-**
**-**
**Cost (optional)**
**-**
**-**
**-**
**-**
**-**
**Cost (optional)**
**-**
**1,500**
**-**
**-**
**-**
**-**
**-**|**Endowment**
**funds**
**to nearest £**|
|---|---|---|---|---|
|||||**-**|
|||||**-**|
|||||**-**|
|||||**-**|
|||||OK|
|||||**Endowment**
**funds**
**to nearest £**|
|||||**-**|
|||||**-**|
|||||**-**|
|||||**-**|
|||||**-**|
|||||**-**|
|||||**Current value**
**(optional)**|
|||||**-**|
|||||**-**|
|||||**-**|
|||||**-**|
|||||**-**|
|||||**Current value**
**(optional)**|
||||**-**|**-**|
||COMPUTERS||**1,500**|**1,000**|
||||**-**|**-**|
||||**-**|**-**|
||||**-**|**-**|
||||**-**|**-**|
||3||**-**|**-**|
CCXX R3 accounts (SS)
12/01/2024
## **B5 Liabilities**
Signed by one or two trustees on behalf of all the trustees
||||||||**-**|||**-**|
|---|---|---|---|---|---|---|---|---|---|---|
||||||||**-**|||**-**|
|||||**Fund to which**||**Amount due**|||**When due**||
||**Details**|||**liability relates**||**(optional)**|||**(optional)**||
||||||||**-**||||
||NONE||||||**-**||||
||||||||**-**||||
||||||||**-**||||
||||||||**-**||||
|||Signature||Print|Name||||Date of
approval||
|||||Amanda Hall|||||27.09.23||
||||||||||||
CCXX R4 accounts (SS)
12/01/2024
4