conGeruk Trustees, Annual Report to the Charity Commission (2021) Charity name: Charity number: Prlncipal address Phone Email Webslte Trustees las 31" Dec. 2021) GIST Cancer UK 1129219 3 Phillips Grove, Yatton Keynell, Chippenham, Wiltshire, SN14 7FA 0300 400 0000 admin@gistcancer.org.uk www.gistcancer.org.uk Nic Puntis (Chair} Jayne Bressington (PAWS-GIST Director) John South (Treasurer) Mark Atlay (Secretary) Sharon Bethell Stella Tumer Terry Weldon Terry Riley Jane Means Amalia Formoso Tony Manu61 Objectives and Activities 1. 1 Overarching pU￿oSe The objectives of GIST Cancer UK (GCUK). as set out in its 'Declaration of Trusy, are: To promote and protect the physical and mental health of patients wlth Gastro- intestinal Stromal Tumors (GISTS) in the UK through the provision of information, support, education and practical advice to them and their carers. The relief of sickness and the prèservation of health in particular by promoting and supporting research with the publication of the useful results thereof and the development of more effective treatment and care for patients with GIST; To advance the education of the general public and health pmfassionals in all areas relating to GIST. 1.2 Mode of Operation GCUK operates mainly through the unpaid work of th8 trustees and other volunteers. Trustees take a leading role in individual aspects of the Charity's work. The Charity conlracts with specialist providers to augment its work for example in relation to lechnical support for the web site and other IT functions, video-recording of presentations. and admin support. 1.3 Main activities In furtherance of its objectlves the Charity has undertaken the following actrvities during the period covered by this report. It should be noted that the pandemic had a significant impact on the charity during this period particularly in its ability to hold fac tO-fa￿ meetings to support patients and their carers and in tems of fundraising. In 2021 we registered 166 new patients or carers on the GCUK Datsbase up from 28 in 2020 although it is interesting to note that no new regislrations were received between mid-June and December 2020, possibly due to the national lockdown restrictions and hence a dramatic reduction in caricer referralsldiagnosis during that period. We also registered 59 new hospital contacts (up from 30 in 2020). In 2021 we registered 9 new fundraisers lup from 1 in 2020). GCUKAnnual Report 2021 Final con¢eiL* 1.3.1 Patlent-carer meedngs Two meetings were held for patients and their carers (April with 70 people in attendance and October 2021 when 45 attended). Because of the pandemic these were held online rather than face-to-face and were of a shorter duration Ihan normal meetings and we were unable to convene our usual meeting in Scotland. Feedback from participants was positive although they reported thal they missed the opportunity of sharing experiences provided by normal meetings. Topics covered included: The use of Radiotherapy in GIST Cancer treatment. How clinical trials work. Personal experiences of clinical trials The special needs of GIST patients during the pandemic and lockdown Continuing to work when having a GIST diagnosis. We continue to be grateful to all the medical professionals who give up their time to speak at these evenls. 1.3.2 Helpline We provide access to a helpline enabling patients and carers to talk to someone in confidence. Although not staffed by health care practitioners, we can provide advice and guidan￿ or re-direct calls when appropriate. Calls to our helpline increased considerably during Covid 19. 1.3.3 Llstserv One of the major ways in which we support patients and their carers is through the provision of a private email discussion forum. GCUK controls access to this space to ensure that only GIST patients and their Garers can gain access and moderates day- to-day comments. The forum is actlV8ly used to discuss a range of issues including symptoms, treatments and their side-effects and other relevant topics 1.3.4 PAWS-GIST clini¢$ There are some sub-variants of GIST whi¢h are rare and more difficult to treat by conventional methods. Collectively these are grouped as PaediatriclAdolescent, Wild- type and Syndromic (Camey's Triad and Carney-stratakis Syndrome) or PAWS-GIST patients. GCUK runs PAWS-GIST clinics at Addenbrookes Hospilal, Cambridge to help and support patients through contact with medical specialists. Two clinics were run during the year. Nomally GCUK would aim to run three such clinics each year, but these were affected by the pandemic and none had been run the previous year. The PAWS-GIST website is regularty updated and offers valuable help and information to PAWS-GIST Patients and carers. 1.3.5 Information GCUK has significantly improved its web site istcancer.or .uk ) so that it provides a wider range of information of relev8nce to the GIST community. We also provide a range leaflets and other information aimed at patients, carers and health care practitioners ensuring that these remain up-to-date with tha latest advice. 1.3.6 Research GCUK funds a number of small-scale research projects into GISTS and their treatment. Currenlly these include.. Wildtype SDH Deficient GIST in the UK. A review of clinical course, genetics, epigenetics and metabolomics. cortceruh Next ganeration sequencing of ￿ GISTS to identify therapeutic targets. Derivation, maintenance and characterisation of ￿11 lines from biopsies of PAWS- GIST Research to investigate the potential of Gallium-68 (68Ga) DOTA-conjugated peptidePETICT to develop theranostic applications in wild-type gaslrointestinal stromal tumours (GISTS). Pllot study- Altered RNA methylation in SDH deficient gastrointestinal stromal tumours In addition, GCUK is working with stsff at the Royal Marsden Hospital to establish a Tissue Bank for use by researchers. 1.3.7 Other major actlvltles durlng 2021 The following additional activities have been undertaken during the year= Ensuring compliance with the General Data Protection Regulations Approving the GCUK reserves Policy 1.4 Public Benefit In deciding on activities and in the compilation of this annual report, the Tnjstees have had regard to the guidan￿ issued by the Charity Commission on public benefit (available at htl s=Ilwww. ov.ukl overnmenu ublicationsl ublic-benefit-an- overviewl ublic-benefit-an-overview ) 1.5 Policy on grant making GCUK makes no grants to individuals in respect of living with a GIST. It does remunerate, on request, palients and carers for the costs of travel to its meetings and its currently considering extending ots arrangements in this area in line with its objectives. 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, who give their time for free, those who provide core activities such as the help-line and managing the day-ttrday activities of the Charity. In addition many patients and their carers and friends volunteer to support fund-raising and related activities. 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 society as a whole. Two patienvcarer meetings involving 115 participants Helpline conlacts Operating an online mailbase enabling those with GISTS and their carers to aC￿sS online support and guidance and the sharing of experiences Two PAWS-GIST clinics Revised guidance on a range of issues relating to GISTS (see istcancer.o .ukl ublicationsl ) GCUK Annual Report 2021 Final ¢ofi¢erL Continued funding of small-scale res6areh initiatives Raising awareness of GISTS amongst healthcare practitioners Contributions lo the activities of national and international cancer groupings 2.2 Achievements against objectives set As a small charity. relying on the good will of its volunteers, GCUK does not have a set of annual objectives. However, it is in the middle of a four-year strategy which runs from 2019- 2022 and has slarted the process of developing its next strategy. The following summarises progress in respect of each of the three strands of the current strategy. SUPPORT for atlents Telephone helpline - manned by patients with first-hand ex erIen￿ of GIST Online - we enable patients and carars to share their experiences using an e-mail forum, Facebook, Twitter andlor Insta ram E-mail helpline- for all those enquiring about GIST can￿r Fa￿-to- face- patient conferences in England and one in Scouand plus three PAWS-GIST dinics each year Operational Operational Operational Remains an aim but affected by pandemic in 2021. Two online cOnferen￿S and two PAWS-GIST clinics ran. RESEARCH for a cure Make GIST tissues samples availablè to researchers by supporting the GIST Tissue Bank Provide grants for research into GIST cancer Raise funds to ensure the continuance of research Monitor research projects funded by GCUK ort the PAWS-GIST ir)itiative INFORMATION and AWARENESS Ensure an educational video is available to all GP'S Progress undemay but Tissue Bank not yet fully established. Operational Operational Operational erational Video production delayed by pandemic but close to completion and should be available in 2022. Operational - websites have been revam ed and infomiation u dated. Full range of resour￿$ now available. Maintain up to date GCUK & PAWS-GIST websites Maintain & expand a range of brochures providing information about GIST cancer and mana the disease. Ensure GIST professionals have access to our literature for their patients Complete - although ensuring we have an accurate list of current GIST rofessionals re uire5 on oin work. 2.3 perfOnnan￿ of fundraising activities against objectives set GCUK does not currently have set objectives for fundraising and, achievement of any such objectives would have been considerably impacted by the pandemic. However. it is Currently considering devetoping a more systematic approach to fundraising to help support its activities. onceru 2.4 Investment perfonnance against objectives Rates of return on investments have been low and the charity has been considering how best to manage its reserves to ensure that returns are maximised whilst risks are spread. Routinely managing reserves across multiple bank accounts currently creates additional work for volunteer trustees and limits thg charity's ability to exploit investment opportunities. It has been considering the use of the Charities Aid Foundation ICAF) plattorm to betler manage financial reserves and expects to make a decision early in 2022. Financlal Review 3.1 Revi8w of the Gharity s finanoial position at the end of tho period GCUK is in a good financial position with sound finances that would allow it to operate for a three-year period even if no further income was received. 3.2 staten7ent explaining the policy for holding rese￿eS stating why they are held GCUK holds reserves for two main reasons: To ensure that there are sufficient funds to support the medium-temi viability of the charity. To ensure that there are funds to support activities, such as research projects. that are funded for several years. 3.3 Amount of reserv8s held The total amount of the reseNes at the end of the 2021 financial year was £646,212. The Board approved a new Reserves Policy during the year which recognises the following categories of funds with the level of reserves under each heading indicated (as of December 2021): Operational Costs - this is an estimate of a sum required to manage the charity operationally for 24 months to allow a period of stability if a particular set of circUmstan￿S arise e.g. no income1£61,000). Designated Funds - that the charity is committed to contractually and are costs that need to be met at some stage in the future {£231.563). Restricted Funds- funds the charity has set aside for schernes yet to be approved contractually but are nonetheless fomially allocated for a purpose (£91,215). Unrestricted Funds- essentially the Charity's reserve (£262,435). 3.4 The charity's principal sources of funds (including any fvndraising) The chaiity generates money through fundraising activities and re￿iVeS financial support from various pharma￿utical Companies. 3.5 Investment policy and objectives including any social inv8Stment poliGy adopted Currently GCUK does not have any financial investments. 3.6 A description of the principal financial 17sks faung the charity The Charity's financial risk register identifies the following risks and their associated level. There are no major risks of concern. Receivin less fundin or fewer ublic donalions Losin mone throu hina ro nate investments Reliance on a few SoUr￿S for income Inaccurate andlor insufficient financial information Medium Low Low Low GCUKAnnual Report 2021 Final con¢ei Inade uate rese￿eS and cash flow Undert8kin activities outside the normal nature and scale of the chari Low Low Structure. Governance and Management 4.1 Description of charity's tnists.. The Charity was established in 2009 through a 'Declaration of Trust. The name was subsequently changed from GIST Support UK to GIST can￿r UK in August 2018. No other amendments to the original Declaration have been made. 4.2 How is the charify constituted? GCUK is a charitable incorporated organisation. 4.3 Trustee selection methods including details of any constitutional provi&ons e.g. election to post or name of any person or body entitled to appoint one or more trustees Trustees are largely drawn from GIST patienls and their carers who indicate their willingness to contribute at events and activities or through a general request to the mailbase. Trustees seNe for a three-year period but can be re-elected. The Charity is currently undertaking a review of the experience of ils Board members ulilising resources supplied by the Charity Commission. 4.4 Policies and pm¢edures adopted for the inducbon and training of tmstees There is a stsndard procedure for thè 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. 4.5 The charity's organisational structure and any wider natwork with which tha chan.ty works 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. 4.6 Relationship with any related parties GCUK has no fomial relationships with other parties. The trustees attend relevant meetings to raise awareness of this rare Cancer and to gather useful information to share with our Patient Community. During 2020 we attended various meets'ngs including Cancer 52 Meetings and European Nebmork meetings. 4. 7 Operation of the Board The Tnjstees met four times during the year, once in person and three times remotely via MS Teams. Sheena Kynoch stood down as a Trustee. Sheena was a Trustee of the Chartty since its inception and carried out many roles, including the very demanding role of Secretary. Sheena will be sorely missed and fondly remembered and we hope to see her at future Patient & Carer Meetings. We welcomed Mark Allay as a new Trustee, taking over the role of Secretary. Sadly, in March, we lost James Palgrave due to GIST Cancer. James was involved with GCUK for many years and helped us énormously with our IT Function. He will be sorely missed. ¢on¢eruh Declarations The Board of Trustees declare that they discussed and approved this report together with the annual accounts al their meeting in July 2022. Signed on behalf of the charity's trustees Signature(sl Full name(s) Position (eg Secretary, Chair, etc) Nic Puntis Mark Atlay Chair Date 01.10.22 GCUK Annual Report 2021 Final GCUK Accounts 31 December 2021 **GIST Cancer UK 31 December 2021** ## **Independent Examiners Report of the Trustees of GIST Cancer UK** I report on the accounts of the charity for the year ended 31 December 2021. ## **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 21 June 2022 1 ## **GCUK** ## **Profit and Loss Account for the year ended 31 December 2021** |**Income**
Donations - GCUK
Donations - PAWS
Interest
**Research Purchases**
General Research - GCUK
Research and Consultancy - GCUK
Research and Consultancy - PAWS
**Direct Expenses**
Publicity/Goods for Sale - GCUK/PAWS
**Overheads**
Motor Expenses - GCUK/PAWS
Entertainment/Subsitance - GCUK/PAWS
Travel Meeting Costs - GCUK/PAWS
Hotel Costs - GCUK/PAWS
Meeting Costs - Patient Meetings
Meeting Costs - 2018 - London GCUK
Meeting Costs - Autumn/Cardiff - GCUK
Meeting Costs - Autumn 20 Bath
Meeting Costs - Trustee Meeting
Post - GCUK/PAWS
Printing - GCUK/PAWS
Stationery - GCUK/PAWS
Telephone - GCUK/PAWS
Web Hosting - GCUK/PAWS
Accountancy - GCUK/PAWS
Insurance - GCUK/PAWS
Sundry - GCUK/PAWS
Genetic Alliance Membership Fee|**2021**
**£**
86,494
22,388
38
108,920
2,948
40,321
26,217
69,486
671
671
487
24
463
3,258
182
-
-
870
1,631
1,041
2,979
413
596
11,875
2,774
397
2,629
50|**2020**
**£**
47,690
30,032
408
78,130
6,733
9,982
26,999
43,714
1,940
1,940
668
435
466
1,218
-
4,722
95
845
-
552
3,724
672
368
800
1,764
392
275
50| |---|---|---| 2 ## **GCUK** ## **Profit and Loss Account for the year ended 31 December 2021** |Just Giving
ESMO
Travel Costs - GSUK/PAWS
Cancer 52 Membership
Bank, credit card and other finance charges
**Profit**|238
-
45
-
36
29,988
100,145
8,775|216
23
1,221
150
-
18,656
64,310
13,820| |---|---|---| 3 ## **GCUK** ## **Balance Sheet as at 31 December 2021** |**Assets**
Debtors
HSBC - PAWS/GIST 547
HSBC - GCUK 689
HSBC - GIST Support UK 670
Nationwide - GCUK 514
HSBC - PAWS GIST Community - 469
Shawbrook Bank - PAWS/GIST 621
**Liabilities**
Trade creditors
**Net business assets represented by**
Capital account:
Brought forward
Net profit|**2021**
**£**
-
139,185
218,497
112,749
76,730
12,954
86,099
646,212
-
-
646,212
637,437
8,775
646,212|**2020**
**£**
5
183,286
200,952
79,280
76,730
12,085
86,099
638,437
1,000
1,000
637,437
623,616
13,820
637,437| |---|---|---| 4