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2022-12-31-accounts

ALK POSITIVE LUNG CANCER (UK)

Charity No. 1181171

TRUSTEES’ ANNUAL REPORT

1 January 2022 to 31 December 2022

The Charity was established in December 2018 and this is the Trustees’

fourth Annual Report.

ALK-Positive lung cancer is a relatively rare form of lung cancer caused by a genetic malfunction and comprises less than 4% of all lung cancers. Patients are, on average, much younger than most other lung cancer patients and are usually never-smokers.

1. Objectives and Activities

The objectives of the Charity are to relieve sickness and to preserve and protect good health of UK anaplastic lymphoma kinase (ALK) positive lung cancer patients by: -

2. Our Vision

We want everyone in the UK who is diagnosed with ALK-positive lung cancer

To achieve this, we

3. Achievements and Performance

A group of 18 patients and supporters came together in July 2018 with the aim of establishing a UK group of ALK-positive patients who could exchange experiences and give and receive mutual support. At our second meeting in October 2018, it was decided to form a registered charity and the Charity was registered by the Charity Commission on 14 December 2018. We started with a £1,000 loan from the Treasurer.

Our achievements and performance in our first four years have greatly exceeded our expectations. The main activities undertaken in 2022 to further our objectives were –

3.1 Support and Empowerment

Conference

We held our first national conference for ALK-positive patients and their families. 110 delegates attended the conference which was held in Birmingham and they heard from and questioned some of the UK’s leading ALK-positive experts. The conference was a huge success and videos of all sessions are on our website along with a vox pop of some of the delegates. The conference was the largest gathering of ALK-positive patients and their families in the world, outside the USA. It was funded by grants from pharmaceutical companies.

Life Coach

We launch a Living With ALK+ Lung Cancer Coaching Service providing 6-week online group sessions. A cancer diagnosis can cause loss of identity and self. Through self-management, individuals are empowered to regain control of their lives by understanding thoughts and emotions, strengthening mental resilience, identifying challenges, exploring different perspectives and setting goals. We have had very positive feedback from participants.

Regional Ambassadors

Towards the end of the year, twelve of our members from many parts of the country volunteered to be Regional Ambassadors to arrange local meet-ups for members. The Charity believes that these social gatherings are important for the mental well-being of patients and, for this reason, the charity subsidises the cost of meals.

Other social events have included a speedboat down the Thames and a Thames-side walk.

Website

Additional information was added to the website which provides information about the Charity and is a source of information for members to be better informed about ALK-positive lung cancer. One of our principal aims is to empower patients to enable them to ensure that they get the best possible care.

Facebook Page

The Facebook page is a great success and the number of users increased from 450 to 543 during the year. Each day, there are postings by patients sharing experiences and giving and receiving emotional support. It is particularly pleasing that new members receive a very warm welcome from existing members. A survey of followers showed that 95% of respondents would recommend the group to other ALK-positive patients.

Medical & Scientific Panel

We established a Medical & Scientific Advisory Panel comprising two retired GPs and a Professor emeritus of Molecular Oncology, all ALK-positive patients. The panel will provide advice to the Trustees and ensure that all our publications reach a high standard. Medical advice will not be provided to members.

Surveys

We carry out surveys of our members to ascertain real-world data on all aspects of their diagnosis, treatment and care. The data produced enable us to identify deficiencies and variations in the level of services our members receive, including regional variations. We use this information at meetings with oncologists and nurses and at conferences to advocate for best practice. During the year, we gathered data on

Online Activities

We hold weekly exercise sessions which are recorded and placed on the website and monthly coffee mornings.

3.2 Advocacy

We attended the national conferences of

The LCNUK was their first face-to-face conference since the pandemic. Over 300 lung cancer nurses from throughout the UK attended and we spent a very busy two days talking to them.

We also attended other meetings with healthcare professionals where we raised awareness of the Charity and of ALK-positive lung cancer and advocated on behalf of patients. It is important that healthcare professionals are aware of the Charity and the support that we provide so that they direct their patients to us. The growth in members indicates that we are having some success in raising this awareness.

We had abstracts published at key stakeholder conferences –

We were consulted by the National Institute for Health and Care (NICE) on applications by pharmaceutical companies for approval of their products and we attended online meetings with NICE (and its Scottish equivalent) where we have given the patients’ perspective.

We worked with several pharmaceutical companies on the development of resources for patients.

We worked with other organisations to raise awareness of rare lung cancers and were members of

We published several resources –

Our DVLA panel was active in lobbying the DVLA to amend their rules about driving with brain metastases.

We have opened up channels of communications with LC oncologists and nurse specialists in all hospitals throughout the UK so that we can tell them about the support that the charity can offer to their patients.

We have continued to grow our use of social media and are active on Twitter, Linkedin and Instagram.

Our “See Though the Symptoms” early diagnosis campaign, developed with EGFR Positive UK and the Ruth Strauss Foundation, was taken up by Gateway C, the leading GP education provider, and they now provide an online never-smoker lung cancer course as part of their curriculum.

We led on the development of the Oncogene-Driven Lung Cancer Patient Alliance, which leading ALK experts are supporting. This will be the platform where we engage with policy makers to ensure that never-smoking lung cancer is included in all lung cancer strategies. Professor Alastair Greystoke agreed to be the honorary Clinical Lead. We commissioned an animated video on the role of support groups and the benefits they offer patients.

3.3 Fundraising

We hit the ground running at the beginning of the year with the Sapphire Ball. 115 people had an amazing night and an incredible total of over £15,000 was raised for the charity.

Our members undertook a wide range of activities which, together with those activities organised by the charity, raised £55,000. We are very grateful to these members whose activities included

We launched a “Many More” Standing Order campaign. We chose this name as we want patients to

We are very grateful to all those members who are now making regular monthly donations.

4. Financial Review

The Charity had £128,120 in its bank account at the end of the year, including £4,477 of restricted funds. This was a year-on-year increase of £16,029 due to the high level of fundraising. In October, the Trustees held a strategic planning meeting to determine actions to ensure that the charity has a sustainable base and to develop it to “the next level”.

We do not occupy premises and we do not currently employ staff, although we commission services. We have a very low level of fixed costs, e.g., website maintenance, subscriptions to other organisations, insurance, and our end of year balances are largely available to promote the Charity’s objectives.

5. Structure, Governance and Management

The Charity is a Charitable Incorporated Organisation and the governing document is its Constitution.

The Constitution provides that there shall be between three and eight Trustees.

The Trustees have had regard to the guidance issued by the Charity Commission on public benefit.

We have policies in place concerning –

Code of Conduct Complaints Procedure Conflicts of Interest Equality and Diversity Financial Control Fundraising Privacy Trustee Expenses

We sought advice on the General Data Protection Regulations to ensure that we are compliant.

We were delighted that Jackie Fenemore, a leading lung cancer nurse specialist, agreed to join our panel of Honorary Clinical Advisors

6. Reference and Administrative Details

CharityName ALK Positive LungCancer(UK)
Other names the charity
uses		 ALK Positive UK and ALK+ UK
Registered charitynumber 1181171
Charity’s principal address Old Carw Farmhouse
Carrow Hill
St Brides Netherwent
Caldicot
Monmouthshire
NP16 3AU

7. Names of the Charity Trustees who Managed the Charity in 2022

Trustee Name Office (if any) Dates Acted if not for
whole Year		 Name of person or
body entitled to
appoint trustee (if
any)
Debra Montague Chair
Graham Lavender Secretary& Treasurer
Rebecca Stebbings
Susan Eastwood Until 31/07/2022
Angela Field
Tessa Rust Until 20/02/2022
Lynne Murtha
Paula Tully From 20/02/2022

Corporate Trustees – n/a

Names of Trustees holding title to property belonging to the Charity – n/a

Funds held as custodian trustees on behalf of others – nil.

8. Declarations

The Trustees declare that they have approved the Trustees’ Report as above.

Signed on behalf of the Charity’s Trustees

Signatures G H Lavender D L Montague
Full Names Graham Herbert Lavender Debra Louise Montague
Positions Secretary Chair
Date 16 September 2023 16 September 2023

Income & Expenditure 2022

Income

OpeningBalance 112,091
Amazon + easyfunding 530
Conference registration 1,179
Donations 5,115
EarlyDiagnosis Campaign 2,550
Fees charged 3,450
Gift Aid 596
Grants 29,216
In Mem 13,353
Our FundraisingEvents 15,387
Private Funraising 40,139
Regional Meet-ups 636
Sapphire Ball 15,405
StandingOrders 2,325
Other 701
Total Income 130,582
242,673
Expenditure
Administration 4,614
Annual Conference 31,792
Communications Strategy 4,800
Conferences 7,418
EarlyDiagnosis Campaign 9,056
Events 5,826
Fitness Classes 2,150
Fundraising 5,124
HCP communications 1,411
Just Givingfee 468
Newsletter(2021) 1,567
Oncogene-Driven LC Alliance 921
Patient Material 4,756
Patient Information Forum 540
Publications 9,686
Publicity 6,363
Regional Meet-ups 1,611
Sapphire Ball 2,744
Social Media 8,673
Trustee Expenses 454
Video 4,046
Other 533
Total Expenditure 114,553
ClosingBalance 128,120
Restricted (Early Diagnosis Campaign) 4,477
Unrestricted Balance 123,643

CHARITY COMMISSION FOR ENGLAND AND WALES Independent examiner's report on the accounts Section A Independent Examiner's Report Roport to the trustee3 Ltr Fo5J fiVE On accounts for th8 year endod Charity no lif any) jigii71 Set out on pages /ondi I ￿pOrt to the trustees on my examinalion of the accounts of the above charity I'the Trust") for the year ended R8sponslbllltl8s and basis of report As the charlty's truslees. you are responsible for the preparalion of the accounts in accordance wilh the requirements of the Charities Act 2011 ("the Act"). I report in respect of my examination of the Trust's a￿OUnts carried out under section 145 of the 2011 Act and in carying out my examination, I have followed all Ihe applicable Directions given by the Charity Commission under section 145{5)(b) of the Act. Independent tThe charity's gross income exceeded £250,000 and l am qualified to examlner's statement -undertake the examination by being a qualified member of linsert name of applicable listed body]l. Delete I l if not applicable. I have completed my examination. I confirm that no material matters have come to my attention in connection with the examination (other than that disclosed below.) whlch gives me cause to believe that In. any materlal respecl: the accountlng records were not kept in accordance with section 130 of the Charities Act., or the accounts did not accord with the accounting records- or the accounts did not comply with the applicable requirements Con￿rning the form and content of accounts set out in the Charities (Accounts and Reports} Regulations 2008 other than any requirement Ihat the accounls give a 'true and fair, view which is not a matter considered as part of an independent examination. I have no concems and have come across no other matters in conneclion with the examination to which attention should be drawn in this report in order to enable a proper understanding of the accounts lo be reached. ' P18as8 d818t8 th8 word the brackets rf they do not apply. Slgned: Date: // Name: EL/ Relevant professional qualification(s) or body IER Oct 2018

(if any): Address: GL/JS fjy Section B Disclosure Only complete if the examiner needs to highli9ht material matters of Goncern (see CC32, Independent examination of charily accounls: directions and guidance for examiners). Glve here brlef details of any items that the examlner wishes to disclose. IER Oct 2018