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2025-04-05-accounts

FND FrieNDs Trustees Report April 2024 – April 2025

To accompany accounts dated to 05/04/2024 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 2024 and 5[th] April 2025.

  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

  8. 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.

  9. 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.

  10. 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.

  11. Upon request, we visit individuals while they are inpatients in the Rosa Burden Centre at Southmead Hospital, providing emotional and practical support as needed.

  12. 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 regularly meet with Southwest Hospitals to do area updates.

  13. 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.

  14. We are continuing to work with other neurological patient support groups (such as the MS society, Parkinson’s, Headway, MNA, Health Watch across the Southwest etc). We are also part of the FND Network committee. The Neuro Alliance and the FND Society and are networking with other professionals up and down the county.

  15. Organised patient support group meet-ups across the Southwest, with regular groups now meeting in Bristol, Swindon, Weston-super-Mare, Gloucester, Taunton, Yeovil. North Devon, Exeter, Plymouth, Torbay, Bournemouth, Weymouth, Minehead and St. Austell and Launceston.

  16. Our offices continue to grow from strength to strength.

  17. 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.

  18. Raised sufficient funds through fundraising activities, grant writing etc to enable us to perform the above activities.

  19. We have started the craft days back up in the Bristol office every 2 weeks. We have started craft sessions in Taunton once a month and Seated Pilates in Yeovil once a week. And a new pain monthly pain cafe in our Devon office.

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.

  3. We have started online exercise classes once a week which have been going very well

and have also done Stress & Anxiety workshops.

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 2900 members and growing daily) and another Young FND Friends Under 25, 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 held our first in person regional conference in March 2025 which was a huge success.

  6. We joined 4 other FND patient support organisations to run a successful online awareness day on 25[th] March 2024 and again 2025. 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, we also had a talk from Dr Jon Stone. Our Facebook group grew rapidly as a direct result of the awareness day.

  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 are now starting to do Awareness Days in Hospitals with one being done on March 2025 in Musgrove Hospital, Taunton and then on 12[th] August at Yeovil District Hospital, Yeovil.

  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.

  1. We have supported other fundraising ideas, such as sponsored walks, independent markets, and stalls at other events.

  2. We have encouraged participation in research opportunities as and when they arise, by raising awareness of specific opportunities through our online communities.

  3. 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.

  4. Other successful fundraising grants from a number of organisations such as 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, Torbay Lottery, Teignbridge Lottery and PayPal Giving Fund) and have helped service users to raise money for the charity.

  5. 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 £5,129 (2024 - £7,472).

  3. The charity will need to retain £5,500? 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 – Suite 5 Bridge House, Courtenay Street, Newton Abbot, Devon, TQ12 2QS

  4. Trustees

  5. Amanda Hall

  6. Caroline Martin

  7. Jessica Edden-Thomson

  8. Lucy Burrows (appointed 2024)

In 2024 Lucy Burrows became a trustee and in January 2025 Emma Laskey became a trustee.

Approved on behalf of the board of Trustees

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eves
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Amanda Hall

Chair of the board of Trustees: FND FrieNDs

Date: 27.11.25

FND FRIENDS
Charity Name
FND FRIENDS
Charity Name
FND FRIENDS
Charity Name
1176608
No (if any)
For the period
from
6-Apr-24
Period start date
To 5-Apr-25
Period end date
Section A Receipts and payments Section A Receipts and payments Section A Receipts and payments
A1 Receipts Unrestricted
funds
to the nearest
£
Restricted
funds
to the nearest £
Endowment
funds
to the nearest £
Total funds
to the nearest £
Last year
to the nearest £
DONATIONS 2,284







- - 2,284 1,320
GRANTS RECEIVED 6,310 1,500 - 7,810 10
FUNDRAISING 2,692 - - 2,692 1,375
Sponsorship 200 - - -
PAYPAL 2,604 - - 2,604 500
MERCHANDISE 5 - - 5 118
REFUNDS 1,739 - - 1,739 372
LOTTERY 128 128 277
Misc 2,575 - - 2,575 229
Sub total(Gross income for
AR)
18,537 1,500 - 19,837 4,201
-
-
-
18,537
5,272
371
1,180
4,025
228
29
298
-
-
3,481
169
-
-
-
-
-
-
1,500
1,000
-
-
-
200
-
-
-
-
-
-
-
-
-
-
-
-
-
-
-
-
-
-
-
-
-
-
-
-
19,837
6,272
371
1,180
4,025
228
229
298
-
-
3,481
169
-
-
-
A2 Asset and investment sales,
(see table).
-
- -
Sub total - -
Total receipts
A3 Payments
4,201
RENT 5,272 1,000 - 6,272 7,193
INSURANCE 371 - - 371 344
OFFICE COSTS 1,180 - - 1,180 1,119
PRINT,POST AND IT COSTS 4,025 - 4,025 3,295
Tesco Grant 228 - - 228 -
CRAFT SUPPLIES 29 200 - 229 218
Sponsorship 298 - - 298 -
TRAINING - - - - -
TRAVEL - - - - -
EXPENSES 3,481 - 3,481 2,055
FUNDRAISING COSTS 169 - - 169 -
LOTTERY - - - - -
SUBSCRIPTIONS - - -
STORAGE - - -

CCXX R1 accounts (SS)

11/27/2025

1

OTHER MISC COSTS 7,091 300 - 7,391 3,844
MERCHANDISE - - - 616
**Sub total ** 22,144 1,500 - 23,644 18,684
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
18,684
- 3,607 - 3,607 - 14,483
- - -
7,599 - 20,565
3,992.00 5,492 6,082

CCXX R2 accounts (SS)

11/27/2025

2

Section B Statement of assets and liabilities at Section B Statement of assets and liabilities at the end of the period 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
Unrestricted
funds
4,353
776
5,129.00
Agreement Error
Unrestricted
funds
to nearest £
-
-
-
-
-
-
Fund to which
asset belongs
Fund to which
asset belongs
Restricted
funds
-
-
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
- -
- -
- -
- -
- -

CCXX R3 accounts (SS)

11/27/2025

3

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
Amanda Hall
Date of
approval
Amanda Hall 27.11.25

CCXX R4 accounts (SS)

11/27/2025

4