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2023-12-31-accounts

REGISTERED COMPANY NUMBER: 2202260 (England and Wales) REGISTERED CHARITY NUMBER: 327735

REPORT OF THE TRUSTEES AND UNAUDITED FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 DECEMBER 2023

FOR

T.O.F.S.

Lemans 29 Arboretum Street Nottingham NG1 4JA

T.O.F.S CONTENTS OF THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 DECEMBER 2023

Page
Report of the Trustees 1
Independent Examiner’s Report 12
Statement of Financial Activities 13
Balance Sheet 14
Notes to the Financial Statements 16
Detailed Statement of Financial Activities 22

T.O.F.S REPORT OF THE TRUSTEES FOR THE YEAR ENDED 31 DECEMBER 2023

The Trustees, who are also directors of the charity for the purposes of the Companies Act 2006, present their report with the financial statements of the charity for the year ended 31 December 2023. The Trustees have adopted the provisions of the Statement of Recommended Practice (SORP) “Accounting and Reporting by Charities” in preparing the annual report and financial statements of the charity.

The financial statements have been prepared in accordance with the accounting policies set out in the notes to the accounts and comply with the Charity’s governing document, the Charities Act 2011, the Companies Act 2006, the Memorandum and Articles of Association and Accounting and Reporting by Charities: Statement of Recommended Practice applicable to charities preparing their accounts in accordance with the Financial Reporting Standard, applicable in the UK and Republic of Ireland published in October 2019.

REFERENCE AND ADMINISTRATIVE DETAILS

Registered Company number

2202260 (England and Wales)

Registered Charity number 327735

Registered office

St George’s Centre 91 Victoria Road Netherfield Nottingham NG4 2NN

Trustees

Duncan Jackson Chair John Pearce Vice-Chair & Treasurer Drew Bailey (from 20 April 2023) Darrell Hill Clare Johns Sue Lewis-Jones Trace Loffman Secretary Graham Slater Tamasine Swan Katrina Tyler

Chief Executive Officer Diane Stephens

Independent Examiner

K Mealand FCCA Lemans 29 Arboretum Street Nottingham NG1 4JA

Bankers

Caf Bank 25 Kings Hill Avenue Kings Hill West Malling Kent ME19 4JQ

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T.O.F.S REPORT OF THE TRUSTEES FOR THE YEAR ENDED 31 DECEMBER 2023

STRUCTURE, GOVERNANCE AND MANAGEMENT

Objectives and aims

The principal objective of T.O.F.S. is to improve the lives of individuals (hereinafter referred to as “TOF individuals” or “TOFs”) suffering from tracheo-oesophageal fistula (TOF), oesophageal atresia (OA) and oesophageal and related disorders including the VACTERL Association (hereinafter referred to as “oesophageal disorders”), as well as the families of such TOF individuals.

Oesophageal atresia and tracheo-oesophageal fistula (OA/TOF) are rare congenital conditions of the oesophagus (food pipe) and/or trachea (airway) that affect newborn babies. Babies with OA/TOF need to have intensive neonatal care prior to corrective surgery, normally within days of birth. Some children have to undergo additional surgical interventions later on in their lives. It is now recognised that life-long follow up is essential.

Constitution

T.O.F.S. is a charity which was founded in 1982 and established as a ‘Company Limited By Guarantee and not having a Share Capital’ on October 20[th] , 1987. T.O.F.S. is registered both at Companies House and with the Charity Commission.

On May 14th 2016, T.O.F.S. held an Extraordinary General Meeting at which revised Articles of Association were adopted, thus replacing in a single document the original (1987) Memorandum of Association and Articles of Association. This was done with the agreement of the Charity Commission and the revised Articles were lodged in May 2016 with both the Charity Commission and Companies House.

Organisational Structure

The overall direction and management of T.O.F.S. is overseen by the Council of Management of which all Trustees are members, and who are also Directors of the Company. The Council is accountable and legally responsible for the work of the organisation and for ensuring that all aspects of the management and work comply with current legislation. The Council is supported by four members of staff, headed by the CEO, and also by volunteers.

Governance

The Council meets typically four times per year and - as permitted by the Articles of Association - additionally delegates some detail matters to several sub-committees (see also ‘Committee Structure’ paragraph below).

T.O.F.S. is bound by its Articles of Association to hold an AGM. In recent years, as noted above, this was held by videoconference. In addition to the standard agenda items, including presentation of the annual accounts and trustee elections, the opportunity was taken to provide further explanation of T.O.F.S. activities by a series of presentations on key topics (pastoral support, medical liaison, plans for the current year and beyond) to those members who attended. This format was well received and will be retained.

Policies and Documentation

Appropriate policies and procedures are in place to support the effective operation of T.O.F.S. These include, but are not limited to: Governance; Health & Safety; Risk Management; Safeguarding; Financial & Commercial Management; Personnel, Guidance & Training; IT & Data Protection; Communications; Research & Collaboration.

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T.O.F.S REPORT OF THE TRUSTEES FOR THE YEAR ENDED 31 DECEMBER 2023

Risk Management

The Trustees have a duty to identify and review the risks to which the charity is exposed and to ensure appropriate controls are in place to provide reasonable assurance against fraud or error.

Risks are reviewed and mitigated by:

Committee Structure

Since 2019, T.O.F.S. has operated with a revised set of sub-committees, each of which has written terms of reference and authority as delegated by the Trustees, and as permitted by the Articles of Association (specifically paragraphs 110-112.) These sub-committees are formally minuted, and chaired by either a Trustee or the CEO. Membership of the sub-committees is drawn from the Trustees, members of staff and other ‘family’ members of the organisation. At present, there are specific sub-committees and working groups for: Finance; Strategy & Planning; Staff Management & Recruitment; Pastoral Support; Events, Medical Research and Liaison.

Recruitment and Appointment of Trustees

T.O.F.S. welcomes eligible people who have an interest in helping the organisation achieve its objectives by becoming a Trustee. Whilst TOFS members include parents and grandparents of TOF children and Adults born with OA/TOF, T.O.F.S welcomes potential trustees from all walks of life.

The Articles of Association state the eligibility of Trustees, which, in summary, state that those eligible must:

To ensure Trustees are fully competent, T.O.F.S. will:

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T.O.F.S REPORT OF THE TRUSTEES FOR THE YEAR ENDED 31 DECEMBER 2023

Staff Recruitment

There was some restructuring of staff roles in the second half of 2023 when T.O.F. S. had vacancies for two parttime positions, previously held by membership support and communications worker Crystal Brook, and event manager and administrator Claire Stewart. Key responsibilities within these part time roles were amalgamated to create one full time position for a membership, communication and events officer. Sarah Winspear (who has a family member born with OA/TOF) was recruited into the role in October 2023.

The charity continues to be supported by administrator Jayne Allitt and digital communications lead, Peter Browne. Out of the small staff team, which includes CEO Diane Stephens, two of the team members have a personal connection with OA/TOF. T.O.F.S. continued to adopt a hybrid working model for employees. This approach allows flexibility and widens the talent pool during recruitment. Employees can work both remotely and in-office, optimising productivity for the benefit of members.

Strategic Direction

In 2023, T.O.F.S. continued with its three-pronged approach to its activities and the benefits delivered to its members, namely:

Delivery of objectives in 2023

Pastoral support and information exchange

Pastoral support and information exchange have traditionally been the core activities of T.O.F.S., and 2023 was no exception. T.O.F.S. continued with a digital service model for events to allow access for as many OA/TOF patients and their families as possible. For the first time since the pandemic, T.O.F.S also organised two in-person information events over the year, one of which was specifically for the OA/TOF adult community. T.O.F.S. continued to supply information and support both to new members and associates, (220 in 2023), and to existing TOF parents/carers, adults born with OA/TOF and health professionals through leaflets, brochures, and postcards. The Adult TOF Working Group (ATWG) and the Pastoral Support Sub-Committee (PS s/c) were closely involved in developing and adding new resources throughout the year.

The T.O.F.S. website continues to be visited on a frequent basis, predominantly from the UK but also from all over the world. The new look website had been built in-house in 2022 and designed to be much more intuitive and userfriendly for those seeking information about the consequences of being born with OA/TOF. 2023 saw a decrease in visitors to the website, with 40,278 visitors (47,313 in 2022). It should be noted that the website moved from using Universal Analytics to Google Analytics 4 in 2023 and in addition, a cookie control system was implemented on the site to allow users to opt-out from tracking so a true comparison of visitor numbers is difficult.

The ATWG oversaw the development of a new resource for patients with other congenital anomalies in the VACTERL association. This booklet was written and produced to provide information for those born with these rare and complex conditions. It sought to assist healthcare providers understand the additional malformations and how they may impact upon one another. The booklet endorsed the need for multi-disciplinary, collaborative care pathways to improve health outcomes and quality of life (in line with the position paper published by T.OFS in 2021). It was launched at a support and information event that T.O.F.S. ran for the adult OA/TOF community in York in July 2023. The booklet was downloaded 83 times in 2023 and there were 40 requests for hard copies.

The ATWG were also responsible for a medical trauma card which was produced and launched at the GOSH seminar in November. The office distributed 18 of these cards in response to member requests over the last few weeks of 2023.

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T.O.F.S. continued to promote the online digital library for healthcare professionals offering free access to downloadable versions of books, along with other relevant publications. This service was requested by 74 health professionals across a range of disciplines. Most were from the UK (55), with four from Australia, four from Ireland, three from the States, two from Canada and single requests from an additional handful of other countries. All members received a Spring and Summer/Autumn edition of the magazine, ‘ Chew ’, written and edited by the CEO and volunteers on the Chew Editorial Board. In a change to the Chew schedule, the work on the Winter edition was complete by Christmas but wasn’t distributed until early 2024.

Office staff continued to signpost and support members via telephone and email with follow-up support calls and emails made to new members who had given permission for the office to do so.

With tremendous support from the OA/TOF community, a successful TOFS Awareness week was held from 26 Feb to 4 March, to coincide with Rare Disease Day.

Seven adults born with OA/TOF submitted their personal story for inclusion in a specially created video resource which was launched and viewed 490 times during Awareness Week and 1616 times over the year. Further videos with full stories of the individuals featured were released in subsequent weeks.

A new digital travel guide was written and made available and downloaded 30 times over the week, and 115 times throughout the year. Members of the ATWG were involved in the publication of a new ‘Health passport’ resource, urging members to ‘Get the facts’ about their surgery they had undergone for the condition. There were 91 requests for these during Awareness Week itself and 146 throughout 2023. A fourth little card was produced as part of the ‘little card’ series, to help support members whilst travelling abroad. There were 64 requests for the little card pack throughout 2023.

Members were asked to bring OA/TOF and our free provision of digital books to the attention of health professionals.

Many members raised the profile of OA/TOF by sharing their stories in regional and national press, and letters were sent to MPs, flagging the need for adequate care at time of transition. OA/TOF-branded car window stickers were made available for members, along with branded bibs and wristbands. There were 109 requests for hard copy resources during 2023 Awareness Week.

Facebook

The T.O.F.S. Facebook group remains a crucial platform for supporting patients and families of those born with OA/TOF. Many members are instrumental in offering the benefit of their experiences to new parents and the Facebook group plays an increasingly supportive and ‘real-time’ role in the exchange of parents’ experiences with their OA/TOF babies and children. The Facebook group gained 294 new members in 2023, bringing its total membership to 4878, with an average of 1401 members active each day.

To better support the Adult TOF community, T.O.F.S. decided several years ago to endorse a Facebook group specifically for Adult and Teen TOFs, which was and still is, run by one of the members of T.O.F.S., and now administrated by one of the Trustees and some of the ATWG members. This provides a useful forum for the growing number of Adult TOF members, whereby they can share information and experiences on issues that continue to affect them. At 31 December 2023, the total membership of this group stood at 829, with an average of 132 members active each day.

Events

T.O.F.S. organised two face-to-face events for members to meet up and gain information and support. The first, in July, was an information seminar specifically for Adults born with OA/TOF and attended by 27 adults. The second, in November, was facilitated by ICH and GOSH, who kindly provided (with no charge) the use of the seminar rooms and refreshments/lunch for attendees. The focus of this information seminar was around improvements in care for OA/TOF patients, and it was attended by 58 members.

The series of online Q&A events giving members the opportunity to hear from leading clinicians and healthcare professionals continued via Zoom. There were five such events, hosted by the Chair of T.O.F.S. Duncan Jackson, along with the CEO or another trustee. Topics covered were mainly paediatric-related: reflux, respiratory, feeding and swallowing issues, physiotherapy in managing respiratory conditions, along with a session for the adult OA/TOF community on GI issues and surgical treatments. T.O.F.S. is very grateful to the expert speakers who gave their

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time freely. These were attended by members mainly from the UK, but also from Australia, USA, South Africa, Argentina, Canada, New Zealand, Italy, States, and Bulgaria. In addition, all of the information sessions were recorded, edited and subtitled and subsequently added to the YouTube channel.

The informal online coffee meet-ups for adults continued and T.O.F.S. facilitated four such meet-ups (in March, April, May and December) with around 29 adults attending over the year.

T.O.F.S. Local Contacts, (TLCs) are a valued group of volunteers, all of whom are experienced TOF parents, who give their valuable time to volunteer for TOFS. In addition to TLC support described below, T.OF.S. facilitated three ‘Talk with TLCs’ events during the year. These ‘Talk with TLC’ sessions offer members the opportunity to engage with each other virtually, in discussion with their peers about various aspects of the OA/TOF condition. Subjects covered included weaning and feeding difficulties, mental health matters and starting nursery, pre-school and school. In total, 30 families were supported by these events, and T.O.F.S. is very grateful to the TLCs who hosted the sessions.

Three TLCs organised local get-togethers in their area, Manchester, South-East of England and Kent. These were attended by 15 families in total. The combination of these events supported a total 260 families and adults over the year.

Finally, all volunteers continue to play an increasingly important role in the support that T.O.F.S. offers new parents, carers and adults. T.O.F.S continues to benefit from the improved co-ordination of volunteers and the associated support activities, and welcomed five new volunteers, either as TLCs, or on sub-committees or working groups. In addition, some existing volunteers took on new additional roles. T.O.F.S would not be the organisation it is without the valuable support from TLCs, and volunteer members who assist in many other ways such as contributing to Chew , sending out birthday cards, contributing to committees, and helping with fundraising.

As well as supporting via TLC events, some TLCs, are involved in hospital liaison and raise awareness of OA/TOF. Our TLC for Scotland, Bruce Rennie, continued to represent T.O.F.S. on the Expert Advisory Group of the Congenital Anomalies and Rare Diseases Registration and Information Service for Scotland (CARDRISS). Naomi Webborn, TLC for South Wales, represented T.O.F.S. at a meeting of the Welsh Diseases Roundtable and at a meeting of the Congenital Anomaly Register and Information Service (CARIS) for Wales in the last quarter of 2023.

There are currently three T.O.F.S. Overseas Contacts (TOCs) one in Jordan, one in Canada and one in New Zealand. All are active in offering support to TOF families within their own country and they share T.O.F.S. knowledge when applicable. This has been mutually beneficial, resulting in translations of some T.O.F.S. leaflets into Arabic. (It should be noted that these Overseas Contacts do not in any legal sense represent T.O.F.S. in these countries; they are - as the name implies - purely our contacts in these countries).

‘ The TOF Book’ , published in November 2016, continues to sell, although understandably not quite at the level of prior years. Nonetheless, there is evidence that a significant proportion of the new members who joined in the year purchased the book, including overseas members. The fully illustrated ‘ Soft Food Recipe book’ , published in December 2020, continued to provide a useful addition to our publications. We continued to make the facility for both books to be purchased directly from ourselves via our website.

Use of Information Technology (IT)

The use of IT continues to be a powerful tool in support of operations. T.O.F.S. continues to evolve its technological landscape, ensuring that our members receive the best possible support and resources.

T.O.F.S. has made significant strides in leveraging technology to enhance member benefits and streamline operations, and appointed a dedicated Digital Lead staff member in 2021 to drive technology adoption within the charity. This strategic move aims to maximise the advantages of digital solutions for members.

In 2022 T.O.F.S. invested in a new, faster website that provides essential information and now includes an online shop. Members can conveniently order leaflets and books through the website, resulting in a more efficient process for administrative staff.

In the Autumn of 2023, the Digital Development Working Group were responsible for adding the ability for members to purchase T.O.F.S. branded merchandise from the online shop. These items are supplied by a third part supplier.

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T.O.F.S. utilises video conferencing systems to offer live Q&A sessions with medical experts. Members can participate from anywhere, fostering knowledge sharing and support. Additionally, virtual meetups provide a valuable channel for volunteers to connect directly with members who need support.

TOFS extends its reach beyond Facebook and maintains an active presence on Instagram, Twitter, Threads, and TikTok, engaging with community and sharing valuable content.

In 2023 T.O.F.S began testing and investigating the use of artificial intelligence (AI) within its operations. While in the early stages, it’s anticipated that AI could enhance efficiency, improve administration and provide personalised experiences for members and T.O.F.S. will closely monitor its impact and adapt accordingly in the future.

Altido Group Ltd of Cheltenham remain our primary bespoke IT service provider and we hereby note our gratitude for their provision of these services at a discounted or free of charge basis. (We note for reasons of transparency that the late Dennis Harvey (who retired as a Trustee during 2022) was the father-in-law of the Altido Managing Director).

Liaison with the medical profession and with the NHS

We continued in our commitment to disseminating information to practitioners from health, education and social care. We continue to be assisted by members in distributing posters to hospitals to display in their local neo-natal wards to increase awareness of T.O.F.S. when new parents and carers most need help.

In 2023, medical conferences were again held in person. T.O.F.S. attended several, including the BSPGHAN (The British Society of Paediatric Gastroenterology, Hepatology and Nutrition) conference, the ESPGHAN conference (The European Society for Paediatric Gastroenterology Hepatology and Nutrition), and the BTS (British Thoracic Society) conference. We attended a paediatric feeding event organised by the Southern Health and Social Trust in Northern Ireland. We were also invited to participate at a joint meeting of AUGIS and the BAPS ChUGS Special Interest Group to consider treatment pathways for adult patients with serious ingoing gastro-intestinal morbidity.

T.O.F.S. continues in its efforts to increase its profile within the medical community. Since 2016, we have had a Medical Advisory Group, which is intended to provide us with a leading group of medical professionals across all relevant disciplines, who can provide advice and guidance, and support our publications with medically approved input. Its Research sub-group continues to support and guide T.O.F.S.’ engagement with research studies.

The involvement of T.O.F.S. in research programmes into OA reflects the almost mandatory requirement for relevant patient group support to be given to such projects and where relevant for “the patient voice” and patient perspective to be built into the study’s terms of reference. In some instances, this support is characterised purely by endorsement of its relevance and priority to OA patients. In other cases, support may also involve some funding contribution, whilst a research activity may be characterised by more active involvement and/or collaboration with T.O.F.S.

Projects underway or completed and/or published in 2023 that T.O.F.S. is currently supporting and/or endorsing include:

In addition, T.O.F.S. is actively supporting the European Reference Network (ERN) known as ERNICA (ERN for Inherited and Congenital Anomalies) through our membership of EAT ( E sophageal At resia Global Support Groups e.V,) - see also the section below entitled ‘Co-operation with other organisations’.

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T.O.F.S. Trustee Graham Slater was until September 2023 a member of the ERNICA Board and of its Coordination Team, and remains a patient representative on the programme’s Transition & Adult Care project. Two other members of T.O.F.S. are also engaged in the ERNICA programme.

Finally, we note that since January 2021 T.O.F.S. Trustee Graham Slater has been a Patient & Public Voice partner to the NHS England Clinical Reference Group on Specialised Surgery in Children.

Co-operation with other organisations

During 2023, T.O.F.S. continued its engagement with other UK patient organisations to start collaborative action concerning care for adult patients suffering ongoing morbidity as result of being born with congenital malformations such as OA, and/or other rare conditions acquired in childhood. Efforts are ongoing, to jointly approach relevant medical societies and policy-makers in the NHS to address the absence of specialist care - an issue of growing concern as the number of adult patients requiring such care increases each year.

We also increased our engagement with organisations which support other conditions in the VACTERL spectrum which OA/TOF patients can also suffer from. We attended and presented at associated conferences such as that run by Max’s Trust in September and the VACTERL Association Family Event in October.

T.O.F.S. also continued to play a leading role in EAT. This organisation now has member associations in fourteen countries. EAT is a German-registered association, and its involvement is much sought by various international medical working groups, especially those supported by EU funding. As a result, via EAT, T.O.F.S. continues to be actively involved in European collaborative healthcare programmes, and other relevant international initiatives.

EAT’s key successes and activities during 2023 were:

Expenditure, Funding, Financial Management and Governance Expenditure

Total expenditure fell a little in 2023, from the £183,848 of 2022 to £171,700. The Trustees had planned for 2023 expenditure to be very similar to 2022, having previously increased greatly from the £131,983 of 2021, and £92,682 of 2020.

The Trustees concluded some time ago that the most effective way to improve support to members and the general community impacted by OA was by having staff in place to generate better information, make that more accessible, and generally co-ordinate activity better. Staff costs in all amounted to some 70% of total expenditure in 2023, and the administration element of this remains low. Indeed, we are now conducting a high proportion of our video-editing, information-preparation and layout in house and have reduced external cash expenditure commensurately. Staff costs turned out a little lower than planned because two staff decided to leave the charity in mid 2023, and their roles were not satisfactorily replaced for approximately three months.

During the year, we held two half-day seminars for members, as explained elsewhere in this report. We are very grateful to Great Ormond Street Hospital / Institute of Child Health who offered their seminar space to T.O.F.S. at no charge for one of these events. The net external cash cost of these seminars was relatively low and the Trustees plan to perpetuate such seminars, partly because of this. However, a great amount of staff and volunteer effort was put into organising and running each. The charity also continued to offer its members a series of online Questionand-Answer events with medical experts. The external cash cost of these events was almost nothing, but each has involved significant staff effort.

The charity adopted virtual meetings in 2020 and – for most of the staff, most of the time - remote working from home via Zoom and Teams. There does not yet appear to be strong reason to revert to traditional face to face meetings. It is likely that we will continue to use these cost-effective options to a great extent. However, the charity retains its one office as an operating base, from which one staff member works. We have searched without success for a materially cheaper alternative office.

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Much of the time spent by T.O.F.S. on engagement with healthcare professionals, their associations and their initiatives is undertaken by volunteers, including some of the Trustees. The volume, impact and importance of this work is far greater than might be inferred from the relatively low sums which the charity has spent on it.

As noted elsewhere in this report, T.O.F.S. attended several UK medical society events in person, with a small exhibition stand. The cost of attending such events can be material, though travel and subsistence is typically the greatest element. However, expenditure in this category was below that of 2022, because the triennial InoEA conference took place in Cincinnati, USA in 2022, and T.O.F.S. had funded several people to attend that.

In 2023, the charity spent some £4,050 on a feasibility study related to a desired T.O.F.S. mobile-phone App for members’ use. After considerable staff and volunteer effort, the paid-for initial design resulted in a meaningful costing for development and maintenance. The Trustees stopped the project at this stage, as the projected expense turned out to be substantially higher than initially hoped.

However, the charity spent less in 2023 than in 2022 on newsletters and publications. The biggest impact here was that only two issues of our newsletter Chew were paid for in 2023, the costs of the Winter 2023/24 issue having fallen into 2024. Other major new publication resources were added in 2023, but these were made available in soft-copy only and with the preparation work by volunteers and staff at very little external cash cost.

Some years ago, the Trustees decided to designate £20,000 in all to pay for sponsorship of relevant medical research and activities of similar long term “scientific” benefit to the OA/TOF community over several years. The Trustees decided to transfer another £20,000 from general funds to this designated research fund in 2021.

We had expected to pay the last tranche of support for the OCELOT project in 2023, but we were not asked to do so and now anticipate that payment will be made in 2024.

Income

The charity has no ongoing committed income such as grants, etc. The public sector makes no contribution to our work other than Gift Aid on donations from UK-based individuals. Around half of the charity’s income arises because of fundraising undertaken by our members and the wider community impacted by OA. Most of the remainder arises because a member has directly donated it in one way or another or most typically encouraged others to do so. This high degree of engagement with members and the OA community is vital to T.O.F.S. and the Trustees are very grateful for it.

The Trustees had feared that the cost-of-living crisis and substantial inflation of 2023 might lead to a reduction in the charity’s income. However, underlying income in 2023 ended up very similar to the 2022 level, which has been a pleasant surprise.

In 2023, underlying income reached a record level of £145,943. For reference, underlying income has varied between £111,337 and £142,268 (excluding the exceptional Martin and Pretious legacies and the Forrester Trust donation) over the previous five years. Total income in 2023 included a legacy from the estate of the late Judith Bland, a longterm active supporter and volunteer for T.O.F.S.

The value of donations from companies, clubs and societies such as Rotary clubs, sports clubs, Freemasons’ lodges and local faith groups grew significantly in 2023. As a group, the Freemasons are particularly significant supporters of T.O.F.S. In almost every case, such corporate / club donations arise because a member has nominated T.O.F.S. to their employer / club / society.

Several company supporters made donations in 2023 having donated in 2022 or previous years, and the Trustees are very grateful for this. Our most material new supporter was the MJL Golf Day, which donated some £20,000 to T.O.F.S. in 2023, and has promised to donate again in 2024. The Trustees are very grateful to Mandy Larner for deciding to donate some of the net proceeds of her annual charity Golf Day to the charity.

T.O.F.S. asks members to make a donation in respect of their membership, and many do so, especially upon joining. A significant number make regular monthly donations, and for this, we are very grateful.

The London Marathon remains the largest fundraising event for T.O.F.S., and in 2023 we had seven people raise money for us in this marathon. The leading fundraiser was Ioannis Koletakis who raised a little over £3,000, with four others each raising over £2,000.

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The Great North Run has been a fixture on the T.O.F.S. calendar for some time. In 2023, our five entrants raised an excellent combined total of just over £4,600. For a second year, T.O.F.S. had places in the Ride London-Essex 100 cycle ride. Our three cyclists raised an excellent combined total approaching £3,800.

Many of our younger members took part with their mums and/or dads in our third annual Teddy Toddle, which raised an excellent almost £6,000 in 2023.

The Trustees are most grateful to the people who put so much effort into training for and completing all of the above events, and into raising a great deal of money for the charity.

More traditional fundraising activity, organised by members themselves, raised a little under £30,000. The Trustees are especially grateful to members who organise and undertake so many small-scale events and raise so much for T.O.F.S. We continue to offer them support with fundraising packs, items such as T.O.F.S. branded running vests and a fundraising guide with hints and tips.

The charity continues to take part in “Your Charity Lottery”, which is run by a licenced third party operator, with approximately 160 people playing on a weekly basis to benefit T.O.F.S.. We also repeated our self-organised large online raffle which was held close to Easter, using (mostly) donated prizes.

Income from the sale of the two books published by T.O.F.S. has remained at a useful level. The charity’s online shop has been expanded to offer the books with relatively little administrative load, and also to allow members to easily order the many free-of-charge leaflets, badges, etc. Late in 2023, the T.O.F.S. online shop started to offer various items of T.O.F.S. branded merchandise via partner company Printfull. It is expected that a small margin will result.

Lastly, we note e-cards. In 2023 for the third time, TOFS offered members the chance to send one of a range of selected TOFS electronic Christmas Cards – and to donate to TOFS. The amount raised during Winter 2023-2024 rose to approximately £1100, we are hopeful of further growth in future.

Financial Management

The Trustees have delegated most of the charity’s financial management to the Treasurer, who works with a Financial Sub-Committee (FSC). The FSC had held its normal half-yearly meetings in 2023, to review expenditure and incomes, to monitor progress against budgets and to recommend budgets for ratification by the whole Council of Management of T.O.F.S..

On a day-to-day basis, the charity uses a commercial book-keeping system and produces monthly internal updates. The Treasurer and FSC normally produce reports for the Trustees several times per year, typically quarterly. The Fundraising Working Group meets much more frequently than the FSC and reports to the FSC.

Financial Review and Reserves policy

Like other charities, T.O.F.S. requires reserves in order to operate in the short term and to satisfy legal obligations in the event of the end of funding, a major reduction of funding or a delay in further funding becoming available. In the event of having to close the charity, the reserves would enable proper notice to be given to the beneficiaries and staff and for all legally due payments to be made to staff, volunteers and the organisations with which we do business. In view of the great uncertainties arising from the COVID-19 pandemic, in 2020 the Trustees raised the minimum level of reserves to an amount sufficient to cover all normal operating expenses for a full year. The reserves policy has not been changed since. At the end of 2023, T.O.F.S. has significantly more in reserves than our policy demands, however the apparent excess is very likely to reduce as it is expected that expenditure will exceed the income that can reasonably be anticipated for the next couple of years.

Investment policy and objectives:

T.O.F.S. continues to hold current bank accounts with Lloyds Bank Ltd and CAF Bank Ltd (a part of the Charities Aid Foundation.) For accepting payments and donations it also has accounts with PayPal, Amazon Smile (which closed during 2023), Facebook (which started to make payments to TOFS via Paypal rather than directly during 2023), Just Giving, Peoples’ Fundraising, BOPP, and most recently Givestar. TOFS also has an account with “In memoriam” donations website Much Loved.

Page 10

T.O.F.S REPORT OF THE TRUSTEES FOR THE YEAR ENDED 31 DECEMBER 2023

The current “investment” policy was adopted in February 2018. This enables (but does not commit) T.O.F.S. to invest up to approximately half of its apparently-excess reserves in risky assets – in pursuit of a meaningful return – via vehicles such as charity-specific diversified pooled investment funds with reputable financial institutions. However (in view of the uncertain/troubling investment horizon), the Trustees decided upon the recommendation of the FSC to continue to hold all reserves as cash in FSCS-protected savings accounts. For the whole of 2023, T.O.F.S. has had savings accounts with Cambridge and Counties Bank, Mansfield Building Society, Hampshire Trust Bank, Redwood Bank and Virgin Money.

This report has been prepared in accordance with the special provisions of Part 15 of the Companies Act 2006 relating to small companies.

Approved by order of the Council on 18 April 2024 and signed on its behalf by:

D Jackson (Chair)

Page 11

INDEPENDENT EXAMINER’S REPORT TO THE TRUSTEES OF T.O.F.S.

I report to the Charity Trustees on my examination of the accounts of the company, for the year ended 31 December 2023 set out on pages 13 to 21.

Responsibilities and basis of report

As the Charity Trustees of the company, (and also its directors for the purposes of company law) you are responsible for the preparation of the accounts in accordance with the requirements of the Companies Act 2006 (‘the 2006 Act’).

Having satisfied myself that the accounts of the company are not required to be audited under Part 16 of the 2006 Act and are eligible for independent examination, I report in respect of my examination of your company’s accounts as carried out under section 145 of the Charities Act 2011 (‘the 2011 Act’). In carrying out my examination I have followed the Directions given by the Charity Commission under section 145(5)(b) of the 2011 Act.

Independent examiner’s statement

I have completed my examination. I confirm that no matters have come to my attention in connection with the examination giving me cause to believe that in any material respect:

  1. Accounting records were not kept in respect of the company as required by section 386 of the 2006 Act; or

  2. The accounts do not accord with those records; or

  3. The accounts do not comply with the accounting requirements of section 396 of the 2006 Act other than any requirement that the accounts give a ‘true and fair view’ which is not a matter considered as part of an independent examination; or

  4. The accounts have not been prepared in accordance with the methods and principles of the Statement of Recommended Practice for accounting and reporting by charities [applicable to charities preparing their accounts in accordance with the Financial Reporting Standard applicable in the UK and Republic of Ireland (FRS 102)]

I have no concerns and have come across no other matters in connection with the examinations to which attention should be drawn in this report, in order to enable a proper understanding of the accounts to be reached.

K Mealand FCCA Lemans 29 Arboretum Street Nottingham NG1 4JA

April 2024

Page 12

T.O.F.S. STATEMENT OF FINANCIAL ACTIVITIES (INCORPORATING AN INCOME AND EXPENDITURE ACCOUNT) FOR THE YEAR ENDED 31 DECEMBER 2023

Year
Unrestricted funds
Ended
31.12.23
General Designated
Total
fund
funds
funds
£
£
£
Notes
INCOME AND ENDOWMENTS FROM:
Donations and legacies
2
125,617
-
125,617
Other trading activities
3
14,846
-
14,846
Investments
4
9,302
-
9,302
_

Total income and endowments
149,765
-
149,765
EXPENDITURE ON:
Raising funds
5
1,811
-
1,811
Charitable activities
6
167,080
-
167,080
Other
7
2,809
-
2,809
 __
______
Total expenditure
171,700
-
171,700
__ ___
______
NET (EXPENDITURE)
(21,935)
-
(21,935)
Transfers between funds
-
-
-
______
_____
______
Net movement in funds
(21,935)
-
(21,935)
Reconciliation of funds
TOTAL FUNDS BROUGHT FORWARD
292,748
14,726
307,474
______
_____
______
TOTAL FUNDS CARRIED FORWARD
270,813
14,726
285,539

 Year
Ended
31.12.22
Total
funds
£
135,789
13,175
2,815
__
151,779
5,134
175,938
2,776
____
183,848
______
(32,069)
-
______
(32,069)

339,543
______
307,474

The notes form part of these financial statements

Page 13

T.O.F.S. – COMPANY NUMBER 2202260 BALANCE SHEET AT 31 DECEMBER 2023

Unrestricted funds
General
Designated
fund
funds
Notes
£
£
FIXED ASSETS
Tangible assets
12
-
-
Investments
14
-
-

_
-
-
CURRENT ASSETS
Stock
6,980
-
Debtors: amounts falling due within one year
13
13,555
-
Investments
14
238,167
-
Cash at bank
18,766
14,726


277,468
14,726
CREDITORS
Amounts falling due within one year
15
6,655
-

___
NET CURRENT ASSETS
270,813
14,726
______
______
TOTAL ASSETS LESS CURRENT
LIABILITIES
270,813
14,726
______
______
NET ASSETS
270,813
14,726
FUNDS
16
General fund
Designated funds
TOTAL FUNDS
 Year
Year
Ended
Ended
31.12.23
31.12.22
Total
Total
funds
funds
£
£
-
-
-
50,000

_
-
50,000

6,980
4,044
13,555
7,114
238,167 197,051
33,492
53,761


292,194 261,970
6,655
4,496


285,539 257,474
______
______
285,539 307,474
______
______
285,539 307,474
270,813 292,748
14,726
14,726

___
285,539 307,474

The notes form part of these financial statements

Page 14

T.O.F.S. – COMPANY NUMBER 2202260 BALANCE SHEET - CONTINUED AT 31 DECEMBER 2023

The charitable company is entitled to exemption from audit under Section 477 of the Companies Act 2006 for the year ended 31 December 2023.

The trustees have not required the charitable company to obtain an audit of its financial statements for the year ended 31 December 2023 in accordance with Section 476 of the Companies Act 2006.

The trustees acknowledge their responsibilities for

The financial statements have been prepared in accordance with the provisions applicable to charitable companies subject to the small companies’ regime.

The financial statements were approved by the Council of Management on 18 April 2024 and were signed on its behalf by:

D Jackson (Chair) – Trustee

J Pearce (Vice-Chair & Treasurer) – Trustee

T Loffman (Company Secretary) - Trustee

The notes form part of these financial statements

Page 15

T.O.F.S. NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 DECEMBER 2023

1. ACCOUNTING POLICIES

Basis of preparing the financial statements and assessment of going concern

TOFS is a private charitable company limited by guarantee incorporated in England within the UK. In the event of the charity being wound up, the liability in respect of the guarantee is limited to £1 per member of the charity. The address of the registered office is given in the charity information on page 1 of these financial statements. The nature of the charity’s operations and principal activities are stated on page 2 of these financial statements.

The charity constitutes a public benefit entity as defined by FRS102. The financial statements have been prepared in accordance with Accounting and Reporting by Charities: Statement of Recommended Practice applicable to charities preparing their accounts in accordance with the Financial Reporting Standard applicable in the UK and Republic of Ireland issued in October 2019, the Financial Reporting Standard applicable in the United Kingdom and Republic of Ireland (FRS102), the Charities Act 2011, the Companies Act 2006 and UK Generally Accepted Practice.

The financial statements are prepared on a going concern basis under the historical cost convention. The financial statements are presented in sterling which is the functional currency of the charity and rounded to the nearest £. The significant accounting policies applied in the preparation of these financial statements are set out below. These policies have been consistently applied to all years presented unless otherwise stated.

Income

Voluntary income is received by way of donation and gifts and is included in full in the Statement of Financial Activities when received. The value of services provided by volunteers has not been included.

Expenditure

Expenditure is accounted for on an accruals basis and has been classified under headings that aggregate all cost related to the category. Where costs cannot be directly attributed to particular headings, they have been allocated to activities on a basis consistent with the use of resources.

Tangible Fixed Assets

Depreciation is provided at the following annual rate to write off each asset over its estimated useful life:

Office equipment 33% on cost

From January 2012, the Trustees decided to write off the cost of office equipment in full in the year of purchase

Stocks

Stock is valued at the lower of cost and estimated selling price.

Current asset investments

The charity holds cash on deposit for investment purposes, in order to obtain a better rate of return, thereby increasing their income enabling them to meet their objects.

Taxation

The charity is exempt from corporation tax on its charitable activities.

Debtors and Creditors

Debtors and Creditors receivable and payable within one year are recorded at transaction price.

Cash at Bank

The charity holds sufficient funds in order to meet its short-term cash commitments as they fall due.

Fund accounting

Unrestricted funds can be used in accordance with the charitable objectives at the discretion of the trustees. Restricted funds can only be used for particular restricted purposes within the objects of the charity. Restrictions arise when specified by the donor or when funds are raised for particular restricted purposes.

Further explanation of the nature and purpose of each fund is included in the notes to the financial statements.

Page 16

T.O.F.S. NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 DECEMBER 2023

2. DONATIONS AND LEGACIES

DONATIONS AND LEGACIES
2023 2022
Donations:
Charitable Trusts, Clubs and Corporations 32,508 23,834
Individuals 2,632 8,810
In Memoria 8,801 1,724
Members and Friends 28,463 30,261
London Marathon/Great North Run/Teddy Toddle/Ride London 100 29,717 45,850
Other 23,496 25,310
______ ______
125,617 135,789

3. INCOME FROM OTHER TRADING ACTIVITIES

Sale of TOFS goods
TOFS fundraisers and raffles
4. INVESTMENT INCOME
Interest receivable
5. COSTS OF RAISING FUNDS
Opening stock
Purchases
Closing stock
Just Giving subscription
London Marathon / Great North Run/ Ride London		 2023
6,027
8,819
_

14,846


9,302
_

9,302

4,044
769
(6,980)


(2,167)
216
3,762
_
1,811		 2022
5,969
7,206
_
13,175


2,815
_
2,815
6,182
-
(4,044)
_

2,138
216
2,780
_
5,134

Page 17

T.O.F.S. NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 DECEMBER 2023

6. CHARITABLE ACTIVITIES

CHARITABLE ACTIVITIES
2023 2022
Pastoral support and information exchange:
Newsletters 7,771
12,091
Gifts and entertaining children -
785
Event costs 2,859
-
Telecommunications 1,860
1,699
Printing, postage, stationery, fundraising costs
and publicity 8,331
7,598
Support costs (note 8) 109,700
111,686
______
______
130,521 133,859
Medical liaison, research and co-operation:
Projects - Medics to INoEA / Medical and Hospital Liaison 3,100
5,913
Research costs -
10,249
Awareness week and other 70
326
Support costs 32,770
24,518
Projects European Collaboration / EAT 619
1,073
______
______
36,559 42,079
_____ _____
167,080
 175,938
OTHER COSTS 2023
2022
Accountancy and professional fees 2,809
2,776
_____

7. OTHER COSTS

8. SUPPORT COSTS

SUPPORT COSTS
Pastoral Medical
support & liaison
information research and 2023 2022
exchange co-operation TOTAL TOTAL
Wages 98,119 29,308 127,427 123,085
Finance 91 29 120 243
Information Technology 6,685 1,997 8,682 5,079
Office accommodation 4,201 1,255 5,456 5,398
Travel and sundry 604 181 785 2,399
______ _____ ______ ______
109,700 32,770 142,470 136,204

Support costs have been allocated to the activities based on time spent.

9. NET INCOMING RESOURCES
NET INCOMING RESOURCES 2023 2022
Net resources are stated after charging:
Independent examiner’s fees 1,914 1,950
Payroll Administration 571 523

Page 18

T.O.F.S. NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 DECEMBER 2023

10. TRUSTEES’ REMUNERATION AND BENEFITS

There were no trustees’ remuneration or other benefits for the year ended 31 December 2023 nor for the year ended 31 December 2022.

Trustees’ Expenses

Six (2022 – 2) of the trustees received reimbursed expenses in the period of £4,129 (2022- £2,017). The expense reimbursements were dominated by the cost £2,081 (2022 £903) of two computers and associated items purchased by a Trustee for use by our staff. £94 (2022 – £458) of their travel expenses were donated back to TOFS by the Trustees.

11. STAFF COSTS

The average number of full time equivalent employees during the period was 3.59 (2022 – 3.7)

No employee received total employee benefits of more than £60,000.

The total staff costs and employee benefits were as follows:

Wages and Salaries
Social Security Costs
Pension Costs


12. TANGIBLE FIXED ASSETS
COST
At 1 January 2023
Additions/(Disposals)
At 31 December 2023
DEPRECIATION
At 1 January 2023
Charge for the year
At 31 December 2023
NET BOOK VALUE
At 31 December 2023
At 31 December 2022		 31.12.23
£
115,266
5,088
7,073
______
127,427
__

31.12.22
£
112,692
4,921
5,472
__
123,085

Office
Equipment
£
3,944
-
__
3,944
_
3,944
-
__
3,944
_____
-

-
 31.12.22
£
112,692
4,921
5,472
__
123,085

Office
Equipment
£
3,944
-
__
3,944
_
3,944
-
__
3,944
_____
-

-

£
3,944
-
__
3,944
_
3,944
-
__
3,944
_____
-

-

Page 19

T.O.F.S. NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 DECEMBER 2023

13. DEBTORS: AMOUNTS FALLING DUE WITHIN ONE YEAR
2023
£
Accounts receivable
-
Prepayments and other debtors
11,541
Gift Aid
2,014
_
13,555
_
2023
14. CASH HELD FOR INVESTMENTS
Current asset investments
238,167
Fixed asset investments
-
238,167

15. CREDITORS: AMOUNTS FALLING DUE WITHIN ONE YEAR
Accountancy
1,914
Social Security & other taxes
2,831
Accruals
1,910

6,655
16. MOVEMENT IN FUNDS
At 1.1.23
Net Movement
in funds
£
£
Unrestricted funds
General Fund
292,748
(21,935)
Designated Fund - Medical research
14,726
-
Projects & resources
-
-

__
TOTAL FUNDS
307,474
(21,935)


Net movement in funds, included in the above are as follows:
Incoming
Resources
resources
expended
Unrestricted funds
General Fund
149,765
171,700
Designated Fund – Medical research
-
-
Projects and resources
-
-
__ ____
TOTAL FUNDS
149,765 171,700		 2022
£
-
4,029
3,085
_
7,114
__
2022
197,051
50,000

247,051

1,950
2,347
199

4,496

Transfers
At 31.12.23
between funds
£
£
-
270,813
-
14,726
-
-
__
__
-
285,539


Gains and Movement
losses
in funds
- (21,935)
- -
- -

___
- (21,935)

Page 20

T.O.F.S. NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 DECEMBER 2023

16. MOVEMENT IN FUNDS CONTINUED….

At 1.1.22
£
Unrestricted funds
General Fund
312,629
Designated Fund – Medical research
24,975
Projects & resources 1,939
______
TOTAL FUNDS
339,543
 Net Movement
in funds
£
(19,881)
(10,249)
(1,939)
_____
(32,069)
 Transfers
between funds
£
-
-
-
_____
-
 At 31.12.22
£
292,748
14,726
-
______
307,474

Net movement in funds, included in the above are as follows:

Incoming Resources Gains and Movement Gains and Movement
resources expended losses in funds
Unrestricted funds
General Fund 151,779 171,660 - (19,881)
Designated Funds – Medical research - 10,249 - (10,249)
Projects and resources
-		 1,939 - (1,939)
______ ______ _____ _____
TOTAL FUNDS 151,779 183,848 - (32,069)

The research designated fund was created in 2013. The Trustees added to this in 2014. A total of £40,000 of reserves has now been designated to support relevant medical research work, over several years. In 2019 the Trustees created an additional designated fund for “Projects and Additional Resources” – to cover principally additional staff costs over the subsequent couple of years. The trustees closed this latter fund during 2022.

17. RELATED PARTY TRANSACTIONS.

During the year, TOFS has bought IT services amounting to £1,228 (2022 - £3,059) from Altido (formerly CRM Labs). The managing director of this firm is the son-in-law of the late Dennis Harvey, who served as a Trustee until March 2022.

During this year, some of the expenses reimbursed to Trustees were donated back to the Charity, which totalled £94 (2022 - £458).

18. PENSION CONTRIBUTIONS

The charity operates a defined contribution scheme. The assets are managed independently of the charity and contributions are charged to the Statement of Financial Activities in the period they are made. The charge for the year was £7,073 (2022 - £5,472).

Page 21

T.O.F.S. DETAILED STATEMENT OF FINANCIAL ACTIVITIES (INCLUDING INCOME AND EXPENDITURE ACCOUNT) FOR THE YEAR ENDED 31 DECEMBER 2023

Year Ended Year Ended 31.12.2023 31.12.2022

£ £ £ £
Donations
Charitable Trusts, Clubs and
Corporations 32,508 23,834
Individuals 2,632 8,810
In Memoria 8,801 1,724
Members and Friends 28,463 30,261
London Marathon, Great North Run,
Teddy Toddle and Ride London 100 29,717 45,850
Other 23,496 25,310
_____ ______
125,617 135,789
Other income
Sale of TOFS Goods 6,027 5,969
Interest 9,302 2,815
TOFS Fundraisers and raffles 8,819 7,206
______ ______
24,148 15,990
______ ______
Total Income 149,765 151,779
Cost of TOFS Goods Sold
Opening stock 4,044 6,182
Purchases 769 -
Closing stock (6,980) (4,044)
_____ _____
(2,167) 2,138
Just Giving subscription 216 216
London Marathon / Great North Run / Ride London 3,762 2,780
____ ____
1,811 5,134
Fundraising, Publicity & Co-operation
Newsletters 7,771 12,091
Printing, postage, stationery,
fundraising costs & publicity 8,331 7,598
Cooperation with other organisations 619 1,073
Liaison with the medical profession 3,170 6,239
______ ______
19,891 27,001
Central costs
Wages, social security & pension costs 127,427 123,085
Accountancy 2,809 2,776
Telecommunications 1,860 1,699
______ ______
132,096 127,560

This page does not form part of the statutory financial statements

Page 22

T.O.F.S. DETAILED STATEMENT OF FINANCIAL ACTIVITIES ( INCLUDING INCOME AND EXPENDITURE ACCOUNT) FOR THE YEAR ENDED 31 DECEMBER 2023

Year Ended Year Ended
31.12.2023 31.12.2022
£
£		 £ £
Other Operating costs
Event expense 2,859 -
Gifts and entertaining children - 785
Travel and meeting 81 1,143
Rent and Insurance 5,456 5,398
Research, Recruitment and Sundry 704 11,505
Computer costs 8,682 5,079
Bank charges 120 243
Bad Debts - -
_____ _____
17,902 24,153
______ ______
Total Expenditure 171,700 183,848
NET (EXPENDITURE) (21,935) (32,069)
Funds brought forward 307,474 339,543
______ ______
Funds carried forward 285,539
 307,474

This page does not form part of the statutory financial statements

Page 23