2023-12-31-accounts - Salivary Gland Cancer UK

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Trustees’ Annual Report for the period

From 1[st] January 2023 To 31[st] December 2023

Charity name: Salivary Gland Cancer UK

Charity registration number: 1182762

Objectives and Activities

	SORP reference
Summary of the purposes of the charity as set out in its governing document	Para 1.17	Help those affected by rare salivary gland cancers. Advocate for these patients and carers by providing peer support and information about their disease, care and treatment. Promote and assist research into all aspects of salivary gland cancers, including causes, diagnosis, treatments and cures. To educate the public and healthcare communities in all things related to salivary gland cancers, including raising awareness of symptoms.
Summary of the main activities in relation to those purposes for the public benefit, in particular, the activities, projects or services identified in the accounts.	Para 1.17 and 1.19	• Supporting the community via in person and virtual meetings for patients, carers and clinicians. • Providing information and increasing awareness via leaflets, meetings, the website, social media and fundraising events. • Raising awareness of these cancers and their unmet need via speaking, submitting materials and attending meetings and conferences. • Expansion of the network to support all salivary gland cancer types. • Expansion of the charity’s outputs to provide more research and disease specific information.
Statement confirming whether the trustees have had regard to the guidance issued by the Charity Commission on public benefit	Para 1.18	The trustees have kept in mind the charity Constitution and the guidance from the Charities Commission in all of its’ activities. The governance documents of the Charity are regularly reviewed at Trustee meetings. The charity’s “8 aims” are regularly published via our social media outlets and are the foundation for all activities and

decisions within the charity. The trustees ensure the prioritisation of activities is aligned with these aims.

Additional information (optional)

You may choose to include further statements where relevant about:

	SORP reference
Policy on grant making	Para 1.38	In line with our grants policy, we issued our first call for grant applications in August 2023. After carefully reviewing all applications, we awarded £36,600 to two initiatives. Both projects will commence in April 2024 and will report progress regularly to the Board.
Policy on social investment including program related investment	Para 1.38
Contribution made by volunteers	Para 1.38	Once again we are hugely grateful for the support and contribution we received from our volunteers assisting us in specific projects and outputs, sharing their stories and social media channels, and ‘on the day’ physical support at our events.
Other

Achievements and Performance

	SORP reference
Summary of the main achievements of the charity, identifying the difference the charity’s work has made to the circumstances of its beneficiaries and any wider benefits to society as a whole.	Para 1.20	• *Bringing together those living with* *salivary gland cancers* We continued to host bi-annual hybrid (in person/virtual) meetings during 2023, supporting attendees with travel bursaries for patients and their carers where needed. The hybrid structure of our events has facilitated strong attendance from our community across the country and internationally. We provided regular communication and newsletters to the network. We continued to produce our video series, releasing recordings of the presentations at our hybrid meetings to ensure we reach as many people as possible. We also continued to add patient stories on social media and on our website. Our February 2023 meeting was hosted in Manchester and the agenda included discussions with the research team from the

Christie Hospital. We were also joined by Professor Carla van Herpen who presented on the process and publication of the ESMO Guidelines on salivary gland cancers. She also gave an update on a trial targeting PSMA in ACC and salivary duct carcinoma. In October 2023 we gathered in London. We discussed living with the late effects of radiotherapy; the clinical and molecular significance of a specific gene in ACC; and had an update from the chair of the ACCRF, (based in the US), giving highlights from their research conference. More generally, at both events, we networked, shared and supported one another.

We look forward to an exciting events calendar in 2024 when we celebrate our 5 year anniversary since founding the charity in 2019.

• Raising awareness amongst the general public and the clinical community In April we presented and joined a panel discussion at the GP Pulse webinar. This event brings the General Practice community together to listen to the latest clinical and policy updates. This was a valuable opportunity for us to talk about salivary gland cancers and the challenges with diagnosis at the primary care stage.

In September, over 130 of our supporters donned a Salivary Gland Cancer UK running vest and pounded the streets of Sheffield to complete a 10k run. This was a hugely impactful awareness and fundraising event.

In November we attended and presented at the Swallows International Head and Neck Cancer Conference. Here we also had a stand and were able to engage in lots of great conversations with patients and health professionals.

• Bringing together the patient, clinical and research communities to help drive forward research and improvements in treatments

Following the winding down of the National Cancer Research Institute (NCRI), SGC UK is taking forwards the NCRI’s activities in relation to identifying the gaps in salivary gland cancer research and developing

strategic priorities in this area. An advert for membership of the SGC Working Group will go out in early 2024 together with the scheduling of the strategy meetings to be held throughout 2024.

SGC UK also added to its network by becoming a member of the Northern Head and Neck Alliance.

Furthermore, SGC UK put out a call for it’s first grant during the year and have awarded a total of £36,600 to two initiatives. One of these projects is supporting the roll out of a UK wide salivary gland cancer surgical registry. This will allow for the collation of data and patient reported outcomes. The registry will be vital in understanding the natural history of salivary gland tumours, generating future research hypotheses, assessing and informing clinicians and patients about the clinical outcomes with current treatments, providing faster diagnosis and designing care pathways.

In September the Research Team at The Christie Hospital presented their research at the European Society for Medical Oncology Annual Meeting in Madrid. To support the development of new immunotherapy treatments, the study ‘ Multi-parameter flow cytometry analysis of circulating monocyte and NK T cell populations in recurrent/metastatic adenoid cystic carcinoma’ described a detailed new understanding of the different immune cell populations in ACC compared with other cancer types or people without cancer.

• Optimising the pathways to diagnosis

A consistent challenge raised by our patient community is that the pathway to diagnosis from the point of first engaging with any health care professional is difficult. Salivary gland cancers can present in many different ways and therefore the diagnosis can be slow and often the symptoms may be misdiagnosed.

The second of the two grants SGC UK have awarded this year is £24,600 to Dr Rack at The Christie Hospital in Manchester. The grant has been provided to enable the mapping out of the pathways to diagnosis and to develop a guidance document for front-line medical services to support the diagnosis of salivary gland cancers in GP to submit to the NHS/NICE. This initiative will commence in April 2024.

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Achievements against Para 1.41 objectives set Performance of fundraising Para 1.41 activities against objectives set Investment performance Para 1.41 against objectives Other

Financial Review

Review of the charity’s financial position at the end of the period	Para 1.21	As at 31stDecember 2023 the charity held a cash balance of £104,832, (prior year £48,096) the result of £56,736 in net receipts for the year (prior year £8,174). The charity received income of £90,250 (prior year £23,025) from donations raised through fund raising initiatives and personal legacies. The charity’s accounts for the year have been independently reviewed with no issues raised. The charity’s financial position, and the material increase in donations received in 2023 will allow sufficient funding to support the initiatives planned for 2024, including the issuance of two grants.
Statement explaining the policy for holding reserves stating why they are held	Para 1.22	The cash balance is held in order to support the overall objectives of the charity. Cash is used to cover operating expenses, develop the charity’s presence through marketing and fund specific patient/clinician events. Cash held is also the source funds for the grants we have issued and for any other grant making opportunities that may arise.
Amount of reserves held	Para 1.22	£104,831.86 in cash.
Reasons for holding zero reserves	Para 1.22	Not applicable
Details of fund materially in deficit	Para 1.24	Not applicable
Explanation of any uncertainties about the charity continuing as a going concern	Para 1.23	There are no uncertainties around the charity’s ability to continue as a going concern. The Board carefully considered the on-going running costs of the charity when assessing the funds available for the grants we have awarded in 2024.

Additional information (optional) You may choose to include further statements	Additional information (optional) You may choose to include further statements	where relevant about:
The charity’s principal sources of funds (including any fundraising)	Para 1.47
Investment policy and objectives including any social investment policy adopted	Para 1.46
A description of the principal risks facing the charity	Para 1.46	The Board maintains a Risk Register for the charity. This document highlights governance, operational, financial, compliance and external risks and the

mitigants in place. The Board reviews the Risk Register periodically. Other

Structure, Governance and Management

Description of charity’s trusts:
Type of governing document (trust deed,royal charter)	Para 1.25	The charity is governed by its Constitution.
How is the charity constituted? (e.g unincorporated association,CIO)	Para 1.25	The charity is a Charitable Incorporated Organisation.
Trustee selection methods including details of any constitutional provisions e.g. election to post or name of any person or body entitled to appoint one or more trustees	Para 1.25	Trustees must be appointed for a term of three years by a resolution passed at a properly convened meeting of the charity trustees. When selecting trustees, the charity trustees have regard to the skills, knowledge and experience needed for the effective administration of the CIO. The Board have recently completed a detailed skills matrix to identify any gaps. This is a document that will be reviewed and updated periodically.

Additional information (optional)

You may choose to include further statements where relevant about:

Policies and procedures Para 1.51 adopted for the induction and training of trustees The charity’s organisational Para 1.51 structure and any wider network with which the charity works Relationship with any related Para 1.51 parties Other

Reference and Administrative details

Charityname	SalivaryGland Cancer UK
Other name the charityuses
Registered charitynumber	1182762
Charity’s principal address	International House 36-38 Cornhill City of London London EC3V 3NG

Names of the charity trustees who manage the charity

Trustee name	Office (if any)	Dates acted if not for whole year	Name of person (or body) entitled to appoint trustee (ifany)
Emma Jane Kinloch	Trustee and Chair		The Board
Dr Robert Metcalf	Trustee		The Board
Olorunkemi Fausat Akanke Olaiya	Trustee and Treasurer	Resigned 26 October 2023. Continues as Treasurer as a non- Board role.	The Board
Shane Lisa Draper	Trustee and Chief Financial Officer		The Board

– Corporate trustees names of the directors at the date the report was approved

Director name

Name of trustees holding title to property belonging to the charity

Trustee name Dates acted if not for whole year

Funds held as custodian trustees on behalf of others

Description of the assets Not applicable held in this capacity Name and objects of the Not applicable charity on whose behalf the assets are held and how this falls within the custodian charity’s objects Details of arrangements for Not applicable safe custody and segregation of such assets from the charity’s own assets

Additional information (optional)

Names and addresses of advisers (Optional information)

Type of Name Address adviser Name of chief executive or names of senior staff members (Optional information)

Exemptions from disclosure

Reason for non-disclosure of key personnel details

Other optional information

Declarations Tho trustees declare that th•y hav• approv•d th• trustees. report above. Signed on behalf of the charity's trustees Signatur•(s) Full nam•{s) Posltion (eg Secretary. Chalr. etc) Emma Jane Kinloch Shane Lisa Draper Chair Chi6f Financial OffTrcer Dat• ILk A. .(t 202*

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CHARITY COMMISSION FOR ENGLAND AND WALES Independent examiner's report on the accounts Section A Independent Examiner s Report R•port to tho trust•MI m•fflb•Ys of Salivary Gland Cw¢er UK On account8 for th• year •nd•d 31° December 2023 Charfty no (If any) 1182762 Set out on pages See form CC16a for the year ended 31" Docember 2023 I report to the trustees on my examination of the accounts of the abov• charity (Ihe Trusf) for Ih8 year ended 31° Decwnber 2023. R08ponslbllltles and As tho charity trustee8 of the Trnst. you aro responsible for the preparation ba815 of r•port ol the accounts in accordance with th• requirements of thè Charities Act 2011 nh• Act.). I rnP in resped of my examNi8tion of th• Trust's acCnIs CWTied out under s•ciw)n 145 of the 2011 A(A and in carrying out my •xamw)ation, I have followed the applicable Dir8Ction$ given by tha Charity Commission under section 145(5)(b) of the Act. I have Complètéd my exarnination. I confim thal no material mattern have com• to my attèntion (othw than thal disdosed bolow") in connedion with tho examination ¥thith gi$ rno cw8e to boliove thal in. any material rnspoct: acCnting roc(Yds were not kept in accordance with section 130 of the Act or th• accounts do not a¢x¢xd wilh the accounlng rncord8 Independent examinerfs Statement I have no concerns and have come across no other matters in connèction with the examination lo 1¢h attention $houhJ be drawn in ordor to enable propor understanding of the accounls to bg reached. ' Please delele the words in the brackets rf they do not aQy. Slgn•d: Dat•: 4 August 2024 Nam•: Mrs Karnn Ck3 R•l•vant prol•ssional quallficatlon(s) or body (If any): Addrnss: IER October 2018

Section 8 Disclosure Onty complete l th• examIr r*ads to hwJhlight mattérs of concam (see CC32, Indepondwrt examnalKJn of thwity accounts: directions and guidance for examiners). Glv• here brief details of any It•m8 that tho examln•r wlshos to disclos•. None. IER October 2018

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