OpenCharities

This text was generated using OCR and may contain errors. Check the original PDF to see the document submitted to the regulator.

2025-12-31-accounts

Trustees’ Annual Report to the Charity Commission (2025)

Charity name: GIST Cancer UK Charity number: 1129219 Principal address 3 Grange Court, The Street, Yatton Keynell, Chippenham, Wiltshire SN14 7BA Phone 0300 400 0000 Email admin@gistcancer.org.uk Website www.gistcancer.org.uk Trustees Nic Puntis (Chair) John South (Treasurer) Mark Atlay (Secretary) Cathy Hampshire (Vice-chair) Ros Langford David Lane Drewe Lacey Catherine Doyle (new appointee) Gareth Owen (new appointee)

This report meets the annual reporting requirements of the Charity Commission and provides a record for the Charity of its main activities, their effectiveness and other developments.

With effect from 7[th] October 2025, GIST Cancer UK (GCUK), changed its status to become a ‘Charitable Incorporated Organisation (Foundation model)’ and gained a new charity number (1215266). It used the template issued by the Charity Commission to undertake this change and, on submission, was given a new Charity number. Since the objects, priorities, activities and administration remained unaltered by the translation to the new charity, this report covers the operation of both the old and new charities to the end of 2025 to maintain its annual reporting cycle.

1 Objectives and Activities

1.1 Overarching Purpose

The objectives of the new charity remained unaltered from those set out in the ‘Deed of Trust’ of the previous charity:

1.2 Mode of Operation

GCUK generally operates as in previous years. This is mainly through the unpaid work of the trustees who take a leading role in individual aspects of the charity’s work. A few additional special volunteers provide essential support in specialist areas such as the Helpline, IT and Research.

GCUK Annual Report 2025 (Approved)

1

GCUK contracts with specialist providers in other areas; for example, in relation to technical support for the website and the video-recording of presentations at patient meetings. It has no employees.

In furtherance of its objects, the Charity has undertaken the following activities during the period covered by this report.

1.3.1 New Registrations

New registrations occur via the GCUK website where registrants complete an online form to ensure GDPR compliance. They receive a follow-up call from a member of the helpline team and this can answer any immediate queries, help to allay fears and direct them to additional support when necessary. New registrants can opt to join the online forum and also receive details of forthcoming events.

2025 2024 2023 2022 2021 2020
Patients/carers 148 158 124 120 166 28
Fundraisers 0 1 0 3 9 1
Healthcare
contacts		 10 5 11 29 59 30

New patient/carer registrations remain much as they were in the previous year.

There has been a slight increase in the number of healthcare contacts but identifying medical practitioners who are dealing with GIST patients remains a challenge as there are always retirements and career changes and no accessible central register. We rely on those in this category to contact us. Usually this is so that we can provide nurse practitioners with leaflets and other relevant information for their patients.

1.3.2 Patient meetings

Three meetings were held during the year in line with normal practice. We hold these across the UK to make them as accessible to patients as possible. During 2025 events the following events were held. Each has input from GIST specialists and provides an opportunity for patients, their family and friends to share their experiences of living with a GIST.

Manchester (March 2025). (56 attendees)

London (September 2025) (66 attendees)

GCUK Annual Report 2025 (Approved)

2

We continue to be grateful to all the medical professionals and others who give up their time to speak at these events.

1.3.3 Helpline

We provide access to a Helpline enabling patients and carers to talk to someone with first-hand experience of GIST cancer in confidence. Although not staffed by health care practitioners, the Helpline provides advice and guidance or re-direct calls to specialists when appropriate. Monitoring the number of callers is made difficult by the similarity of our number to that of another organisation, however, we typically receive over 500 calls each year.

This year we have revised our procedures for the recording of calls and introduced DBS checks for those providing support.

1.3.4 Online forum

One of the major ways in which we support GIST cancer patients and their carers is through the provision of a private email discussion forum which provides 24/7 access to hundreds of other GIST patients and carers. GCUK controls access to this space to ensure that it is restricted to GIST patients and their direct supporters, and moderates discussions.

The forum which is often described by users as “a lifeline” is actively used to discuss issues affecting patients including symptoms and their treatments, side-effects, treatment centres and other related topics.

During the year we moved to a new application giving better support for online discussions. Typically, there are around 2000 posts to the forum each year.

1.3.5 PAWS-GIST clinics

These clinics provide direct and specialist support to patients for whom standard treatments often do not work. GCUK has no direct responsibility for the PAWS-GIST clinics which are operated at Addenbrookes Hospital and is currently seeking to confirm their status so that it can continue to advertise them to patients and support its website.

1.3.6 Information

The main means of communicating with GIST patients, carers and others with an interest on this cancer are through our web site (www.gistcancer.org.uk ) and the corresponding one for the PAWS-GIST clinic (www.pawsgistclinic.org.uk). We continue to ensure that the material accessible through the sites is accurate, current and relevant to the needs of patients and carers.

GIST Cancer UK provides a range of leaflets and other information aimed at patients, carers and health care practitioners ensuring that these remain current. During the year we produced a revised version of our booklet ‘ Eating after GI surgery’ . We also provided updated information on a range of topics of relevance to patients including on travel insurance and dealing with the side-effects of drug treatment.

We continue to produce a regular newsletter to keep patients and carers abreast of developments in the charity and in research and other topics of relevance to our community.

1.3.7 Research

Previously GCUK has a Medical Advisory Board which met formally once during the year and provided key advice via email on areas such as bids for research funding.

GCUK Annual Report 2025 (Approved)

3

However, it became increasingly difficult to sustain the operation of this body given other pressures on the time of the consultants and academics who make up its membership.

We now work more closely with our sister charity SarcomaUK using their Medical Advisory Board and procedures to advertise and review research proposals. In addition, we have a specialist team who maintain an oversight of research developments funded by GCUK and published by the wider research community.

GCUK funds a number of research projects into GIST cancers which aim to understand their causes and identify improved treatments. We also fund projects supporting the mental health and well-being of patients. Some of these are jointly funded with SarcomaUK.

1.3.8 National GIST Biobank

GCUK continues to fund the National GIST Biobank based at the Royal Marsden hospital. This provides a resource for researchers wishing to work with GIST cancer cells. We are working to ensure the bank is fully stocked with all GIST mutations and to promote its use amongst the research community.

1.3.9 Other activities

The following additional activities have been undertaken during the year:

1.4 Public Benefit

In deciding on activities and in the compilation of this annual report (see section 1.3 above) the Trustees have had regard to the guidance issued by the Charity Commission on public benefit and in particular that on reporting (PB3).

1.5 Policy on grant making

Our policy on grant-making remains the same as in previous years. GCUK makes no grants to individuals in respect of living with a GIST. It does remunerate, on request, patients and carers for the costs of travel to its meetings and to clinics, and has approved a process for supporting travel arrangements for other treatment related processes such as travel to specialist treatment centres where there is a clear need for assistance.

1.6 Policy on social investment including program related investment

GCUK makes no social investments defined as ‘a class of assets that comprises investments undertaken for both a financial return and to (in whole or part) further the investing charity’s charitable aims and objectives.’

1.7 Contribution made by volunteers

GCUK relies on volunteers for much of its provision to support those with a GIST. This includes trustees and special volunteers, who give their time for free, those who provide core activities such as the Helpline and managing the day-to-day activities of the Charity. In addition, many patients and their carers and friends volunteer to support fund-raising and related activities. As a small, focussed, charity GCUK does not have an extensive number of volunteers.

2 Achievements and Performance

2.1 Charitable activities undertaken

GCUK’s work during the year has had the following benefits to those with a GIST cancer and to wider society.

GCUK Annual Report 2025 (Approved)

4

2.2 Achievements against objectives set

The charity had a new strategy covering the period from 2024 to 2026 which includes annual operational targets. The following summarises progress in respect of each of the three strands of the current strategy which will continue into 2026.

Aim Progress
Three patient/carer meetings March (Manchester), September (London). December
(Edinburgh)
Produce regular newsletter 3 editionsproduced and circulated to allpatients registered.
Develop and implement plan for
review of existing written resources		 _Eating after GI_surgery and ‘No Stomach’ amalgamated
and revised with patient and healthcare professional input.
Revise website to include steps on
patientjourney		 Website live and continuously updated
Revise online forum Revised and operational.
Review Helpline and associated
procedures		 Reviewed, revised and new processes instigated..
Identify, with patients and carers,
range of additional resources of
potential use		 Guidance on Travel insurance and dealing with common
side-effects produced. Further resources in development in
response to patient feedback including around mental
health and well-being
Review patient and carer needs and
identify and evaluate existing
external resources		 Constant part of our review mechanisms which included a
survey of all patients.
Pilot support mental health and
wellbeing support mechanisms.		 GCUK has decided not to progress with this and instead
directpatients to existingspecialist resources.
Identify research priorities Priority areas identified and incorporated into Sarcoma UK
bidding priority document. Regular funding of research
activities to the value of ca £100k p.a.
Seek research proposals in
identified areas possibly through
partners		 New research projects identified and funded through
SarcomaUK research funding process.
Evaluate written resources in line
with development plan		 Under constant review and development plan in place.
Identify lead and develop plan to
support patient access to clinical
trials		 Complete with support from RareCan
Identify strategic partners in UK. Discussions held with SarcomaUK and closer working
underway notably in the area of research. Also
development opportunities being explored with other
charities and with international GIST patient advocacy
groups.

GCUK Annual Report 2025 (Approved)

5

Identify a volunteer coordinator and
develop plan for volunteering
support		 Volunteering policy approved and in operation.
Review existing practices and
develop a targeted approach to
fundraising		 Fundraising levels remain relatively constant and new
avenues being explored.
Ensure administrative and support
arrangements sustain efficient and
effective operation in line with one-
charity ethos		 Complete and being monitored to ensure Charity’s needs
are met.

GCUK does not currently have set objectives for fundraising and their achievement. It relies largely on the fundraising activities of individual GIST patients and their friends and family. Minor grant from Pharma received but general funding from Pharma companies remains difficult to obtain. Annual levels of funding from donations remain relatively constant.

The Charity introduced the use of the Charities Aid Foundation (CAF) platform to better manage its financial reserves. This has led to a significant increase in funding arising from the interest on deposits.

3 Financial Review

GCUK remains in a good financial position with sound finances that would allow it to operate for a two-year period even if no further income was received.

GCUK holds reserves for two main reasons:

The total amount of funds at the end of the 2024 financial year is shown in the following table with previous years for comparison.

End of Year Funds held(£)
2025 575,176
2024 627,602
2023 585,381
2022 697,690
2021 646,215

These funds are distributed across various categories as set out in the Charity’s Reserves Policy

GCUK Annual Report 2025 (Approved)

6

nonetheless formally allocated for a purpose (Designated and restricted funds are £202,330 and £100,000 respectively).

The reduction in overall resources in the bank accounts was planned for and arises because GCUK is now funding several research projects each with significant financial investment. The Board regularly monitors the financial situation.

3.4 The charity’s principal sources of funds (including any fundraising)

The charity generates money through fundraising activities by individuals. We receive occasional grants from Pharma companies with interest in the treatment of GISTs. This year we received one such grant.

3.5 Investment policy and objectives including any social investment policy adopted

During 2023 the Charity commenced using the Charity Aid Foundation’s platform to manage its assets. This allowed for a more effective allocation of funds to interest earning accounts whilst enabling the GCUK to maintain control of its financial investments. During the year, due to the use of the CAF platform and to higher interest rates, the Charity currently gains a return rate of around 4.5% on its investments.

The Charity’s financial risk register identifies the following risks and their associated level (December 2025).

level (December 2025).
Receiving less funding or fewer public donations Medium
Losing money through inappropriate investments Low
Reliance on a few sources for income Low
Inaccurate and/or insufficient financial information Low
Inadequate reserves and cash flow Low
Undertaking activities outside the normal nature and scale of the charity Low

The limited of funding from Pharma means that more needs to be generated from donations and fundraising to ensure the longer-term financial stability of the charity. The Board continues to monitor this position carefully and to seek new sources of funding to enable it to continue its activities.

4 Structure, Governance and Management

The Charity was originally established in 2009 through a ‘Declaration of Trust’. The name was subsequently changed from GIST Support UK to GIST Cancer UK in August 2018 and minor changes were made to the declaration in September 2022 and notified to the Charity Commission.

During 2025, the Charity changed its status to a Foundation Charitable Incorporated Organisation.

Trustees are largely drawn from GIST patients and their families who indicate their willingness to contribute at events and activities or through a general request to the registered database. Trustees serve for a three-year period but can be re-elected. There is no limit to the number of times a trustee can be re-elected.

There is a standard procedure for the induction of new trustees designed to ensure that they are familiar with the working of the charity and the expectations of trustees as set out by the Charity Commission.

GCUK Annual Report 2025 (Approved)

7

GCUK has no subsidiaries and all decisions are taken by the Board of Trustees or by designated Trustees in respect of their specialist areas and reported to the Board.

4.4 Relationship with any related parties

GCUK has no formal relationships with other parties but works collaboratively with other charities who have an interest in GIST cancer. During the year, the charity has continued to explore working more collaboratively with other charities with similar aims.

4.5 Operation of the Board

The Trustees met four times during the year, twice in person and twice remotely via MS Teams.

There were two new appointments to the Board. We are looking to return the membership of the Board to ten to twelve (it is currently nine).

4.6 Policies and Procedures

The Board has the following policies and procedures in place:

GCUK has the following approved policies:

The Charity does not have explicit policies in place in the following areas requiring reporting by the Charity Commission:

GCUK Annual Report 2025 (Approved)

8

5 Declarations

The Board of Trustees declare that they discussed and approved this report at their meeting in April 2026.

Signed on behalf of the charity’s trustees

----- Start of picture text -----
Signature(s)
Full name(s) Nic Puntis Mark Atlay
Position Chair
Date th 7 [th] May 2026
7 May 2026
----- End of picture text -----

GCUK Annual Report 2025 (Approved)

9

GCUK Accounts 31 December 2025

GIST Cancer UK 31 December 2024

Independent Examiners Report of the Trustees of GIST Cancer UK

I report on the accounts of the charity for the year ended 31 December 2024.

Respective responsibilities of trustees and examiner

The charity's trustees are responsible for the preparation of the accounts. The charity's trustees consider that an audit is not required for this year under section 144 of the Charities Act 2011 (the Charities Act) and that an independent examination is needed.

It is our responsibility to;

1. examine the accounts under section 145 of The Charities Act

2. to follow the procedures laid down in the general directions given by the Charitiy Commission (under section 145 (5) (b) of the Charities Act) and

3. to state whether particular matters have come to my attention

Basis of independent examiner's statement

My examination was carried out in accordance with general Directions given by the Charity Commission. An examination includes review of the accounting records kept by the charity and a comparision of the accounts presented with those records.

It also includes consideration of any unusual items or disclosures in the accounts, and seeking explanations from the trustees concerning any such matters. The procedures undertaken do not provide all the evidence that would be required in an audit, and consequently no opinion is given as to whether the accounts present a 'true and fair' view and the report is limited to those matters set out in the statement below.

Independent examiner's statement

In connection with my examination, no matter has come to my attention

1 . which give me reasonable cause to believe that in any material respect the requirements to keep accounting records in accordance with section 130 of the Charities Act to prepare accounts which accord with the accounting records and comply with the accounting requirements of the Charities Act have not been met; or

2 . to which in my opinion, attention should be drawn in order to enable a proper understanding of the accounts to be reached.

ALICJA MOGG

Foxwise Accountancy Ltd 22a Burton Street Melton Mowbray Leicestershire LE13 1AF

06 June 2025

1

GCUK

Income and Expenditure Account for the year ended 31 December 2025

INCOME
Donations - GCUK
Interest
EXPENDITURES
Research Purchases
Research
Direct Expenses
Publicity/Goods for Sale
Overheads
Patient/Carer Meeting Costs
Stationery
Telephone
Web Hosting
Accountancy
Insurance
Sundry
Travel and Subsistence and Expenses
Cancer 52 Membership
Subscriptions & Memberships
Bank, credit card and other finance charges
Loss		 2025
£
87,963
17,434
105,397
112,084
112,084
4,092
4,092
17,960
389
607
-
1,566
508
1,255
11,580
-
336
74
34,275
150,451
(45,054)		 2024
£
87,987
19,360
107,347
166,530
166,530
6,741
6,741
14,249
-
329
472
1,575
494
238
7,426
300
608
-
25,691
198,962
(91,615)

2

GCUK

Balance Sheet as at 31 December 2025

Assets
HSBC - GCUK 689
HSBC - GIST Support UK 670
HSBC - PAWS GIST Community - 469
Flagstones
Other current assets and prepayments
Liabilities
Trade creditors
Net business assets represented by
Capital account:
Brought forward
Net loss		 2025
£
173,442
63,024
100
336,000
2,612
575,176
-
-
575,176
620,232
(45,054)
575,176		 2024
£
217,963
63,024
100
336,000
3,505
620,592
360
360
620,232
711,846
(91,615)
620,232

3

GCUK Accounts 31 December 2025

GIST Cancer UK 31 December 2024

Independent Examiners Report of the Trustees of GIST Cancer UK

I report on the accounts of the charity for the year ended 31 December 2024.

Respective responsibilities of trustees and examiner

The charity's trustees are responsible for the preparation of the accounts. The charity's trustees consider that an audit is not required for this year under section 144 of the Charities Act 2011 (the Charities Act) and that an independent examination is needed.

It is our responsibility to;

1. examine the accounts under section 145 of The Charities Act

2. to follow the procedures laid down in the general directions given by the Charitiy Commission (under section 145 (5) (b) of the Charities Act) and

3. to state whether particular matters have come to my attention

Basis of independent examiner's statement

My examination was carried out in accordance with general Directions given by the Charity Commission. An examination includes review of the accounting records kept by the charity and a comparision of the accounts presented with those records.

It also includes consideration of any unusual items or disclosures in the accounts, and seeking explanations from the trustees concerning any such matters. The procedures undertaken do not provide all the evidence that would be required in an audit, and consequently no opinion is given as to whether the accounts present a 'true and fair' view and the report is limited to those matters set out in the statement below.

Independent examiner's statement

In connection with my examination, no matter has come to my attention

1 . which give me reasonable cause to believe that in any material respect the requirements to keep accounting records in accordance with section 130 of the Charities Act to prepare accounts which accord with the accounting records and comply with the accounting requirements of the Charities Act have not been met; or

2 . to which in my opinion, attention should be drawn in order to enable a proper understanding of the accounts to be reached.

ALICJA MOGG

Foxwise Accountancy Ltd 22a Burton Street Melton Mowbray Leicestershire LE13 1AF

06 June 2025

1

GCUK

Income and Expenditure Account for the year ended 31 December 2025

INCOME
Donations - GCUK
Interest
EXPENDITURES
Research Purchases
Research
Direct Expenses
Publicity/Goods for Sale
Overheads
Patient/Carer Meeting Costs
Stationery
Telephone
Web Hosting
Accountancy
Insurance
Sundry
Travel and Subsistence and Expenses
Cancer 52 Membership
Subscriptions & Memberships
Bank, credit card and other finance charges
Loss		 2025
£
87,963
17,434
105,397
112,084
112,084
4,092
4,092
17,960
389
607
-
1,566
508
1,255
11,580
-
336
74
34,275
150,451
(45,054)		 2024
£
87,987
19,360
107,347
166,530
166,530
6,741
6,741
14,249
-
329
472
1,575
494
238
7,426
300
608
-
25,691
198,962
(91,615)

2

GCUK

Balance Sheet as at 31 December 2025

Assets
HSBC - GCUK 689
HSBC - GIST Support UK 670
HSBC - PAWS GIST Community - 469
Flagstones
Other current assets and prepayments
Liabilities
Trade creditors
Net business assets represented by
Capital account:
Brought forward
Net loss		 2025
£
173,442
63,024
100
336,000
2,612
575,176
-
-
575,176
620,232
(45,054)
575,176		 2024
£
217,963
63,024
100
336,000
3,505
620,592
360
360
620,232
711,846
(91,615)
620,232

3