## Annual Report 2022-23 

**Accounts and financials for Mesothelioma UK for period ending 31st March 2023.** 

**Mesothelioma UK Registered Charity Number: 1177039** 

**Registered Address:** 

**235 Loughborough Road, Mountsorrel, Loughborough, Leicestershire, LE12 7AS** 



Mesothelioma UK 

## Contents 

|Contents||
|---|---|
|**Foreword from the CEO**|**1**|
|**Foreword by David Staley**|**2**|
|**Objectives & Activities**|**4**|
|**How We Work**|**5**|
|**Improving Outcomes & Experiences**|**6**|
|**Research**|**17**|
|**Information**|**20**|
|**Awareness**|**21**|
|**Sustainability & Fundraising**|**23**|
|**Trustees Report**|**31**|
|**Financial Review**|**32**|
|**Looking Forward**|**34**|
|**Financial Statements**|**35**|





Annual Report 2023 

## Foreword from the CEO 


**Mesothelioma UK launched a three-year strategy in 2022 outlining the charity’s mission. Namely, to advocate for better treatment and care, enhance quality of life, support research and amplify the patient’s voice. Five work strands help us move towards these goals, Improving Outcomes & Experiences, Research, Information, Awareness and Sustainability & Fundraising.** 

At the start of this year, we were hopeful that our finances would recover and avoid the impact of the economic downturn. We continued with our plans to address many areas of practice, care and support. 

However, it became evident that the charity’s income streams were not increasing in line with need. Sustainability, specifically income generation sufficient to meet the needs of the charity, became a major focus. A review of our income generation has been completed and a plan of action prepared for the operational team to deliver. 

Despite this financial uncertainty, the charity still managed to achieve a great deal. We have maintained all our previous support services. The nurse team now number 33, and over the last year they reached 1,292 patients. The Research and Audit Steering Committee awarded a further three grants, made possible through partner funding with HASAG and Erase Meso. And the Mesothelioma UK Research Centre Sheffield has had their tender extended a further year, allowing them to continue leading the way on mesothelioma patient experience research. 

Also, for the first time in this year, we appointed a team member to lead the charity’s external affairs activity. We engaged with partner groups and created internal structures and processes to enable the charity to lead on advocacy and campaigns. As part of this, so many people shared their stories with us, raising awareness and allowing others to learn from their experience. It is appreciated by so many, thank you. 

The Mesothelioma UK team, the nurses, operational staff, trustees, our volunteers, and ambassadors, are a special group of people and the charity wouldn’t be what it is without them. But none of the charity’s work could happen without the support of our many amazing donors. The fundraisers, personal donations, grants, corporate partnerships, legacies, from pennies to pounds, it has all made what we do possible. We are hugely grateful to each of you. Please know, as you read this year’s report, that your contribution to the charity’s achievements can be seen on every page. 

Thank you. 


**Liz Darlison** CEO, Mesothelioma UK 

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Mesothelioma UK 

## Foreword by David Staley 

**David, 47, was diagnosed with mesothelioma in 2015. Here he shares how he’s leading “a ‘normalish’ life” with mesothelioma and how Mesothelioma UK have supported him and his family.** 

“As I approach my eight year anniversary since the diagnosis of pleural mesothelioma, it reminds me of how extremely fortunate and privileged I am to be alive today. Life before COVID is one thought, but Life before Meso is something quite different – each day is an achievement! 

If you told me post-diagnosis eight years ago that I would have been asked to write a foreword for the Mesothelioma UK annual report, I would have never believed I would be alive to do so. Thus, this is an absolute honour and means so much to me to support the charity that has helped my family and I so much. 

My Name is David Staley, married to Alison with two kids (Joshua, 16 and Erin, 14). My journey started in 2013, when I started with flu like symptoms, which later followed on with nightly sweats and pain in my left shoulder. After pushing for tests and having two biopsies, I was diagnosed with pleural mesothelioma in October 2015, three weeks before my fortieth, and the night before my daughter’s sixth birthday! To be given a terminal diagnosis, for something you have never heard of, with life expectancy of twelve to eighteen months, was devastating. 

Following diagnosis, it was a whirlwind. I saw various specialists to decide on a treatment path to give me the best chance of survival. Nothing was guaranteed, I was very unusual to have this at my age, so a treatment plan was not straightforward at all. I could either just have chemo or a very rare surgery with 1 in 20 death rate! However, with lots of support from Meso UK and specialists, we decided to go ahead with EPP (extrapleural pneumonectomy) surgery in November 2015. This involved the full removal of my left lung as well as parts of my chest lining and diaphragm. Surgery was very tough and we had a very scary first night, but after two weeks in hospital, my right lung had ‘learnt’ to breathe for me and I recuperated back at home. Amazing to be home for Christmas! 

Four sessions of chemo followed in January to April 2016. To this day, I have no regrets about the surgery, and feel fortunate that even with one lung I am still been able to do most things. 

After chemo, my focus was to spend as much time with family and friends as possible as at the time we really didn’t know how much longer I had left to live. In addition, I needed to get my fitness built back up, to enable me to be strong enough for any further treatment. My overall aim was to lead a ‘normalish’ life, as a husband and dad, well, as much as possible with a terminal diagnosis hanging over my head! 

In Sept 2016, I started back at work, and slowly got back to leading that ‘normalish’ family life, apart from the constant three/six monthly scans, and going through the stress/anxiety that is… 

Over these last eight years, we have certainly had many scares along the way but from day one, the support I have received from my wife Alison, kids, family, and friends has been more than I could have ever imagined. In addition, the great support from Mesothelioma UK, who have also been there from day one has been a huge help to us all. I remember our first meeting with my Meso Specialist Nurse Lorraine, who was a huge support, and always on hand to help. From initial diagnosis, Lorraine, my current meso nurses and the whole charity Mesothelioma UK are always there for us on the end of the phone, during chemo or at appointments. They are 100% dedicated to helping us on this cancer journey. 

When I was diagnosed Mesothelioma UK only had six nurses nationally, they are now at over 30!  Due to the massive fundraising events, donations and the work of Liz Darlison and her team, the charity has grown and developed so much. Not only funding new nurses up and down the country, but valuable funds raised for research that hopefully one day will find the cure. 

I cannot overstate the enormous support Mesothelioma UK give to all those people affected by this awful disease. 

Love and best wishes, 

**Dave and Alison Staley** 

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Annual Report 2023
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Mesothelioma UK 

## Objectives & Activities 

Mesothelioma UK is a national charity for anyone affected by mesothelioma, a cancer caused by exposure to asbestos. 

**We exist to support people with mesothelioma to live better and live longer and to prevent mesothelioma happening to future generations.** 

Established in 2004 as a Macmillan Cancer Support resource centre at the University Hospitals of Leicester the charity has gone from strength to strength, in 2008 registering as an independent charity and as a Charitable Incorporated Organisation in 2018 and reaching £1m in charitable activity in 2020. 

The main focus of our charitable activity since our foundation has been to provide access to specialist nurses at the point of need, at the front door of our NHS, in hospitals across the UK. 

Mesothelioma Clinical Nurse Specialists provide a large range of benefits including; specialist expertise available to patients, increased access to clinical trials, an increase in the number of patients accessing treatment, a lower rate of unplanned admissions, better management of symptoms and an overall increase in the quality of life for patients. 

We also understand that people diagnosed with mesothelioma feel very strongly about preventing future cases. That is why we work closely with partner organisations to raise awareness of asbestos and to shine a light on the devastating impact of mesothelioma. 

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Annual Report 2023 

**How We Work Five key pillars represent the scope and aims of the charity: Improving Outcomes & Experiences, Research, Information, Awareness, and Sustainability & Fundraising.** Our strategy www.mesothelioma.uk.com/strategy gives more details on how we work. We use these pillars as a way to showcase our key activities and achievements throughout this report. w 

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Mesothelioma UK 

## 1. Improving Outcomes & Experiences 

**At the heart of everything we do at Mesothelioma UK is our desire to support mesothelioma patients for as long as they need us.** 

At Mesothelioma UK, we provide a range of services to support anyone affected by mesothelioma. These include a Freephone Support Line, specialist benefits advice, a travel grant to support the cost of accessing clinical trials, a dedicated research centre at The University of Sheffield and a comprehensive information service accredited by the Patient Information Forum. 

## Our Nurses 


**And of course, our nurses are an integral part of this. The appointment of Leah Taylor to Head of Nursing was announced in May 2022.  Below she reflects on her first year in post.** 

Throughout the year our nurse team have continued to work at the forefront of mesothelioma care in the NHS. Having a network of nurses is crucial to ensure expertise is widely shared across the UK. 

A strong nursing team was built by our previous Head of Nursing. Their vision was to provide a Mesothelioma UK CNS in every Cancer Alliance in England and the devolved administrations, and this is still our goal. Mesothelioma UK, like many other charities, has seen a considerable reduction in funding due to the pandemic and the current economic climate. This makes further growth of the team more challenging. However, with the help of our partner funders we have been able to re-establish our nursing post in Essex, a second post in Portsmouth and a new post in London. 

A new nursing strategy has defined roles and responsibilities for all levels of nursing within the team. Additionally, the creation of key performance indicators has enabled the nurses to look at ways to further develop their roles. Indeed, our nurses have continued to rise to the unique challenge of their roles, leading and organising support groups, educational meetings and Action Mesothelioma Day events. The senior nursing team have also demonstrated their leadership expertise in sub specialist areas such as the Armed Forces Project. Work to ensure equitable access to mesothelioma expertise throughout the UK has also continued. We maintain a strong position in the Scottish Mesothelioma Network, and are working with colleagues to develop the first Mesothelioma UK nurse specialist post in Northern Ireland. For Wales our focus is to continue to work towards establishment of commissioned services and ensure sustainability of our nursing posts. There is also ambition to create a nursing network to enable more nurses to connect with the charity and facilitate the dissemination of specialist mesothelioma knowledge. 

We may be a relatively small charity, but we are always looking to achieve maximum impact. Our Peritoneal Nurse Specialist Samantha Westbrook has achieved national recognition being awarded the prestigious title of Oncology Nurse of the Year by the British Journal of Nursing, a welldeserved accolade. Several of our nurses are performing their own small-scale research and audit, many of which are due to be presented and showcased at national and international conferences later in 2023, evidence of their energy and dedication to improving the lives of those affected by mesothelioma. As we look to 2023/2024, I look forward to continuing to lead this exceptional team of nurses. 

## **Leah Taylor** 

Head of Nursing 

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Annual Report 2023 

## Nursing Posts 

## **During the year we welcomed three additional Mesothelioma UK nurses.** 

Samantha Jayasekara is based at the Broomfield Hospital in Chelmsford and will also cover Mid and South Essex NHS Foundation Trust’s other general hospitals in Basildon and Southend. The post is funded by asbestos disease support charity, HASAG. 

Helen Wallace is based at the Wansbeck Hospital in Ashington but will also cover Northumbria Healthcare NHS Foundation Trust’s other general hospitals in Hexham and North Tyneside plus the Northumbria in Cramlington. 

Catherine Stoten joined us at UCLH, London with generous support from HASAG. Catherine will be based at University College Hospital, part of University College London Hospitals NHS Foundation Trust (UCLH). She will also work as a Lung Cancer Clinical Nurse Specialist, alongside her role with mesothelioma patients. 

Thank you to all our partners that have supported nurses throughout the year. Without you and your generous donors and fundraisers we wouldn’t be able to make such a huge impact on the lives of mesothelioma patients across the UK. 










## Facts & Figures 

Total number of patients 

## 1,292 

Total armed forces referrals 

## 63 

Total number of follow up contacts (all methods) 

## 30,421 

Total number of face to face follow ups 

## 1,687 

Number of MDT meetings attended 

1,054 

Total number of support groups attended 

394 

## **Legal panel:** 

The Asbestos Hugh James RWK Goodman Law Partnership Irwin Mitchell Simpson Millar Digby Brown Leigh Day Slater and Gordon Fieldfisher Novum Law Thompsons 

Face Virtual to face 241 153 

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Mesothelioma UK 

## Highlight on Wales 


## **Project Cymru is now into its third year, led by Sarah Morgan, Mesothelioma UK Senior Clinical Nurse Specialist (CNS) and Project Lead for Wales.** 

## **Background** 

Approximately 100 people are diagnosed with mesothelioma each year in Wales. Being a rare cancer, access to specialist services can be difficult, and the predominantly rural setting can exacerbate this. Wales has seven NHS Health Boards, three NHS trusts and ten Local Lung Cancer multi-disciplinary teams (MDTs). Only one patient in every 23 discussed in the lung cancer MDT will be a mesothelioma patient, and fewer than eight patients are discussed per year in some of these MDTs. This and the lack of a national mesothelioma MDT has led to inequity of access to specialist mesothelioma services and support. 

Wales is a devolved nation, and as such, operates under a separate healthcare system to England and the rest of the UK and has an additional legal commitment towards Welsh bilingual services. 

## **Gaining insight** 

To get a greater understanding of patient experience a caseload audit of approximately 200 patient referrals was undertaken . Referrals came from a variety of sources such as Health Boards, Lung CNS colleagues, Mesothelioma UK Support Line and self-referral by patients and families. Other charities within the sector and legal organisations were also identified as sources of referral. This audit highlighted inequities in care, support and treatment and confirmed the need for Project Cymru work to continue. 

## **Engagement and awareness** 

Virtual and face-to-face support group meetings in collaboration with Asbestos Awareness Support Cymru (AASC) are held for all patients and families across Wales. Patient and Carer/family events continue to be wellattended and are held regularly throughout the year and across Wales, including regular annual events for Global Asbestos Awareness week, Action Mesothelioma Day, International Women’s Day, and St David’s Day. 

It has been important to establish relationships with Health Boards, NHS Wales Executive, the Senedd and other charities within the sector. Public engagement 

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Annual Report 2023 

continues through campaigning, awareness and fundraising. Education events for healthcare professionals are held regularly and the inaugural Mesothelioma Network Cymru Professionals event is planned for October 2023. Outputs from Project Cymru have been presented at local, national and international events and conferences. 

agreed in April 2022 via the Welsh Health Specialised Services Committee (WHSSC). Despite this, significant steps forward have been achieved with all Health Boards in Wales having been consulted and national guidelines developed, including: service specifications, national quality performance indicators, and a national pathway. 

## **Future aims** 

## **Challenges** 

Like many other developments, Project Cymru has faced challenges to its success. The anticipated growth of the nurse specialist team in Wales was halted amid growing financial pressures; discussions are now ongoing with Macmillan regarding funding possibilities for additional nurse specialist posts. 

Progress has been slow to establish the National Mesothelioma MDT, with funding by NHS Wales originally 

In light of the challenges, Project Cymru has been extended by a further six months. Due to retirement Wales will not have a dedicated Mesothelioma UK CNS from April 2023, a CNS post will be re-established as soon as funding allows. Project Cymru has made considerable progress and Mesothelioma UK is committed to continuing to work with NHS Wales and partner organisations to embed Mesothelioma Network Cymru and ensure equitable access to care, support and treatment. 


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Mesothelioma UK 

## Highlight on Northern Ireland 

## **The Mesothelioma UK Northern Ireland project was established in response to contact the charity had with the Rodgers family from Newry, Co Down, following the passing of their father, Tony on New Year’s Day 2022.** 

There are around 50 people diagnosed with mesothelioma in Northern Ireland each year. Mesothelioma UK is aware of the need to provide support services in Northern Ireland for people with mesothelioma, their carers and healthcare professionals, and is keen to establish Clinical Nurse Specialists (CNSs) in Northern Ireland similar to those in Scotland and Wales. 

In collaboration with the Rodgers family, Health and Social Care Northern Ireland, Macmillan Cancer Support and local clinicians we’re working to ensure that mesothelioma patients and their families in Northern Ireland have access to the best treatment, care and support available. 

## **Aims for Northern Ireland** 

- Create Northern Ireland first Mesothelioma CNS posts 

- Include Northern Ireland data in the next version of the National Mesothelioma Audit Report 

- Work closely with the Clinical Expert Panel Northern Ireland representatives 

- Link with NI cancer charities including Macmillan Cancer Support Northern Ireland 

- Explore the possibility of establishing a NI mesothelioma MDT meeting 

- Assist with the set-up of and linking to mesothelioma support group 

## **Spring 2023 Update** 

- The Rodgers family are undertaking fundraising – currently at £35,000 

- Mesothelioma UK welcomes donations directly for Project Northern Ireland, please use the form to make your donation (and don’t forget to Gift Aid your donation if you can!) 

- Local companies and charities open to supporting the project are encouraged to make contact 

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Annual Report 2023 

## Highlight on Scotland 


## **Transition to the Scottish Cancer Network (SCN)** 

## **Around 200 people are diagnosed with Malignant Mesothelioma in Scotland every year; a legacy of the extensive use of asbestos in heavy industry and building across the country.** 

In 2019, the Scottish Mesothelioma Network (SMN) was established in partnership with Macmillan Cancer Support, Mesothelioma UK and NHS Scotland with the aim of transforming care for those in Scotland affected by this disease. The network comprised of a team of expert healthcare professionals from across the country collaborating to share best practice and provide high quality clinical care, information and support, and ensure equitable access to potentially life-changing trials for all patients regardless of geographical location. 

In 2022 the SMN became formally embedded in NHS National Services Scotland as part of the new Scottish 


Cancer Network (SCN). The SCN is a dedicated national resource to support and create a ‘Once for Scotland’ approach to cancer services which will further assist in enabling equitable access to care and treatment. 

The SCN work collaboratively with already established regional and national cancer networks to understand the processes and progress made around clinical management guidelines and national managed clinical networks. 

Clinical consensus, ongoing improvement and equitable access are the key founding principles. For those affected by mesothelioma in Scotland, this transition means a continuation of a consistent approach to the production of high-quality clinical management guidelines, further development of pathways leading to better patient experience and outcomes and cohesion between healthcare and patient networks, all backed up by a universally accessible digital space. 

The SMN will continue to collaborate with patients, carers, NHS, government and third sector charities to ensure the aim of providing high-quality and equitable clinical care across the country. 

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Mesothelioma UK 


## **Improving Services** 

## **QPI Report** 

The Scottish Mesothelioma Network have now published their second Quality Performance Indicator (QPI) Audit Report. The development and introduction of national QPIs represents a major step forward for patients with mesothelioma, aiming to improve survival and patient experience, reduce variance and ensure safe, effective, person-centred care across Scotland. The reports are available to view on the Scottish Mesothelioma Network website. 

## **Local Anaesthetic Thoracoscopy (LAT)** 

Local Anaesthetic Thoracoscopy (LAT) Service 

Development. Thoracoscopy is considered the ideal tool for mesothelioma diagnosis, allowing high quality biopsies and drainage of fluid at the same time if needed. Over the past three years, the SMN has worked to improve local LAT access and we’re delighted that over the past year, both Western Infirmary, Edinburgh and Aberdeen Royal Infirmary have begun to offer this procedure, joining Ninewells in Dundee and the Queen Elizabeth University Hospital, Glasgow. Raigmore in Inverness are now in the process of setting up their service. This is huge step toward ensuring equitable access to care across the country. 

## **Staging** 

The SMN were delighted to contribute mesothelioma data for the first time to the ninth edition of the International Association for the Study of Lung Cancer (IASLC) staging project. This project helps to improve accurate staging systems for lung cancers globally. 

## **Information & Support** 

## **Support Groups** 

Facilitated by Maggie’s Highland the SMN monthly support group remains available to all those across Scotland (and beyond) affected by mesothelioma. Each of the SMN Clinical Nurse Specialists attend in rotation to support the Maggie’s team. Our groups are patient led and topics of discussion have included diagnostic pathways, treatment and trials, symptoms and symptom control. 

## **Newsletter** 

The quarterly SMN newsletter continues to help raise awareness and share all the news and developments in relation to mesothelioma in Scotland and the SMN itself. Primarily aimed at health care professionals and support agencies with a special interest in mesothelioma, it is also circulated across the Scottish lung cancer team and is available to patients and their families as desired. 

## **Patient Information Packs** 

The SMN mesothelioma information pack containing regional Mesothelioma UK CNS contact details, benefits, legal, and compensation information, information on diagnosis and potential treatment options, an invitation to the SMN support group and a Mesothelioma UK clinical trials app information card remains available for patients across Scotland. 


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Annual Report 2023 

## **Action Mesothelioma Day** 

Action Mesothelioma Day 2022 was marked across Scotland in a number of ways: 

## **Holyrood Debate** 

On Thursday 30 June MSP Marie McNair opened a debate in Holyrood to raise awareness of mesothelioma and to highlight Action Meso Day. This was a wide ranging debate with some compelling points noted including pleural plaques and the time bar to compensation. 

To read the full debate, please click on the link below: 

www.parliament.scot/chamber-and-committees/offcialreport/search-what-was-said-in-parliament/meeting-ofparliament-30-06-2022?meeting=13857&iob=125677 

## **The Herald** 

To help us fight this pernicious cancer Professor Blyth wrote an article in the Herald about the devastating impact of a mesothelioma diagnosis, the work of Action Mesothelioma Day in maintaining awareness and the need for continued vigilance of asbestos which remains in thousands of Scotland’s buildings. He highlighted the ongoing need for clinical improvement and investment in research and the crucial role charities play in funding the development of mesothelioma services and supporting clinical nurse specialist posts. 

Please see the link below to read the full article: 

- www.heraldscotland.com/opinion/20242772.agenda help-us-fght-pernicious-cancer-links-asbestos/ 

## **Go Blue for Meso!** 

1st July 2022 marked Action Mesothelioma Day. Over the course of the day and night, landmarks across the UK lit up blue in order help raise awareness of mesothelioma and the dangers of asbestos. The response right across Scotland was amazing with many of our famous landmarks participating! 



## **Events** 

## **Patient and Carer Event** 

The annual SMN Patient and Carer event took place on 26th April 2022. 

The event is aimed at patient and carers with sessions based around topics requested by our support group attendees, but everyone from the mesothelioma community including clinicians, support services, lawyers, health and safety experts, researchers, advocates, administrators and anyone else with an interest in asbestos related disease is very welcome to join and gain insight into patient experience in Scotland! 

The event included patient stories and sessions on treatments and trials, symptom management, prehabilitation and the legal and support service updates. 

The event brochure can be found here: 

- www.scottishmesotheliomanetwork.scot.nhs.uk/wp content/uploads/2022/04/SMN-Patient-and-CarerEvent-26-April-2022-v5.pdf 


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PATIENT<br>AND<br>CARER<br>VIRTUAL<br>EVENT<br>April 26th 2022<br>DELEGATE BROCHURE<br>@scotmesonet  www.scottishmesotheliomanetwork.<br>scot.nhs.uk<br>**----- End of picture text -----**<br>


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Mesothelioma UK 

## Case Study 

## **Here Heidi and Dan share how Mesothelioma UK helped support them and their father Tony throughout his mesothelioma journey.** 

**Heidi** : Dad became unwell in late 2021 and his diagnosis of mesothelioma was a devastating one for all of us. Right from the start the support that he received from Mesothelioma UK was invaluable and I truly believe it made a huge difference to his outlook on the illness and the positive way in which he carried on throughout the remainder of his life. 

Dad was lucky enough to live close to where Mesothelioma UK is based, and it was a comfort to us all to know that there was support and expertise so near to him. He was able to visit the headquarters when events were held, and very much enjoyed attending the luncheon club events and taking part in the raffles held at them, we would always get a full run down of the prizes he had won! If Dad had any questions over his treatments or his illness in general, he knew that he could pick up the phone to his Mesothelioma UK Clinical Nurse Specialist and they would be able to answer him, that was a great comfort to him. 

“The social events they organised became an important and comforting support activity as his illness progressed” 

After we lost Dad in June this year the Mesothelioma UK nurses were kind enough to send a card to the family, and one was able to attend his funeral. We also received a lovely personal email. The support for Dad and us all has truly been exceptional and something we will always be grateful for. 

**Dan** : Mesothelioma UK were there from day one – ensuring Dad received the benefits he was entitled to before we even had time to process the shock of his diagnosis. The Meso team regularly went above and beyond, phoning to check how he was doing and dropping items into him on occasion. The social events they organised became an important and comforting support activity as his illness progressed. 

_Sadly Tony passed away in June 2023._ 

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Annual Report 2023 

## Benefits Support 

## Facts & Figures 

## **Benefits Advisors** 

Total number of clients 

**A key priority for Mesothelioma UK is to ensure that patients have access to specialist advice and get the benefits and compensation they are entitled to claim. We are proud of what we have achieved this year and look forward to continuing our partnership working across the mesothelioma community in the next year.** 

We have worked with the Asbestos Victims Support Groups Forum to ensure that patients living anywhere in the UK can access specialist benefits advice and, due to the increasing complexity in identifying asbestos exposure in non-traditional occupations, we have been grateful for the collaboration of our legal panel firms who have been committed to providing expert advice and guidance to patients. 

We have been busy raising awareness of Mesothelioma UK’s benefits advice service by attending health professional forums and training days and are working closely with the Sheffield Research Team on a number of projects. We have also established closer links with the DWP Industrial Injuries team and successfully lobbied for easements introduced during the pandemic to be made permanent, making it easier for our patients to claim benefits. 

## 92 

Lump Sum Payments Identified 

## £974,002 

Estimated Annualised Benefit 

## £832,136 

Number of Armed Forces clients 


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We are working closely with Scottish stakeholders regarding the introduction of the new Employment Injuries Assistance benefit, which will replace Industrial Injuries benefits in Scotland. 

We would like to especially thank Caroline Barry, who has moved on after eight years of service, for her invaluable contribution and wish her all the best for the future. 

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Mesothelioma UK 

## Support Line 

## **Alongside our nurses, providing a freephone Support Line is our core service for patients.** 

The number of calls to the Support Line has been decreasing in recent years, partly due to the better provision of information online, as well as greater technical literacy among the patients and family members, and partly due to the increased number of specialist nurses across the UK. 

The Mesothelioma UK Support Line sits within a network of support services for mesothelioma patients and carers. It complements the care that mesothelioma clinical nurse specialists and wider healthcare teams give, and can provide additional information to that found on the web. Sometimes its role is merely to listen, as patients and their families work through the vast quantity of information given to them upon diagnosis. 

In 2022/23 the Support Line dealt with 234 calls, 96 emails and 27 social media/web contacts. We continue to be available 9am to 4pm Monday to Friday. As in previous years the majority of the callers (94%) are mesothelioma patients or family members. Six percent of the calls are from healthcare professionals looking for advice, showing how we can help to support mesothelioma patients that fall outside of our nurses care. 

Providing access to a mesothelioma clinical nurse specialist over the phone, regardless of geography, remains a crucial element in combatting the “postcode lottery” of mesothelioma care. 

## **Patient Travel Grant** 

Supporting patients to access clinical trials is something we continue to passionately support at Mesothelioma UK. Clinical trials are carried out to find out if there are new and better treatments for Mesothelioma. In this financial year we supported 11 patients to attend clinical trials by awarding travel grants totalling £8,595.00. 

The trials we supported were: 

**BEAT – Meso at the Royal Marsden Constellation at Leicester MiST 3 & MiST 5 at Leicester** 

## Support Groups 


**As well as signposting patients to the many wonderful local support groups across the UK, Mesothelioma UK also runs three online support groups for specific groups of people.** 

If you wish to receive more details for any of these groups, check our website or email support@mesothelioma.uk.com. 

## **Carers’ Hour** 

This group meets on the second Wednesday of the month via Zoom. The main purpose of the group is to provide a space specifically for carers to share experiences, concerns and ideas, as we recognise that they have needs distinct to those of the patient. As well as supporting each other, the group has had speakers on many of the aspects of caring for someone with mesothelioma including management of a chest drain, benefits available as a carer and end of life planning. 

## **Young Patients and Carers Support Group** 

Mesothelioma is predominantly a disease of the over 70s, however it can occur in young people. We realised that the needs and experiences of those under 55 can differ from those of older patients and that there was no support specifically tailored to this group. Our support group meets on the third Wednesday of the month via Zoom to provide peer support and chat informally with a mesothelioma clinical nurse specialist. 

## **Virtual Monthly Peritoneal Support Group** 

Our dedicated peritoneal mesothelioma clinical nurse specialist, Sam Westbrook, facilitates a monthly virtual support group meeting. The calls are well attended, and following feedback a second bi-monthly virtual group for multicystic mesothelioma patients has been established. This gives patients with multicystic mesothelioma a separate forum to share experiences and offer support. 

The group is joined regularly by an asbestos support group member and a solicitor offering further discussions on their areas of expertise. Patients from overseas have since joined the group. Following these calls the nurse specialist sends a “bits and bobs” email to the patient mailing list with information on the topics discussed, as virtual group calls are not for everyone. 

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Annual Report 2023 

## 2. Research 

**To address the pressing need for evidencebased treatments that can enhance the quality of life for patients grappling with mesothelioma, Mesothelioma UK has taken the proactive step of funding research that revolves around the patients themselves.** 

Through our financial support, numerous projects have been developed, employing a diverse array of approaches. We have championed qualitative research aimed at understanding the patient journey, a necessary step to inform medical practice and better prioritise future research. Furthermore, our funding facilitated projects that delve into the potential benefits of dietary adjustments and physical activity in enhancing the overall quality of life for patients. Similarly, we supported initiatives to identify psychological interventions able to alleviate the adverse mental health effects experienced both by patients and their caregivers. 

Our commitment has extended to laboratory-based research aiming to improve diagnostic tools or to leverage genomic data and provide patients with more accurate prognoses. These diverse projects collectively offer the hope of improving the lives of all those affected. We extend our gratitude to the many patients, clinicians, and scientists who have collaboratively worked towards realising these goals. 

## **Stefan Marciniak** 

Chair of Research & Audit Scientific Committee (RASC) 

Our second independent grant round was launched in April 2022. We remain members of the Association of Medical Research Charities, to whom we are grateful for their support and advice. We also owe a debt of gratitude to our RASC who ensured that all applications were scrutinised and that we are funding high quality research. 

## Grants Awarded in 2022/23 

## **Six outline applications were received.** 

These were shortlisted by the Research and Audit Scientific Committee (RASC) and three applicants were invited to submit a full application. All three applications received were approved by the RASC and put forward to the Board of Trustees. 

## **University of Birmingham** 

Leveraging a new class of cancer target for the benefit of mesothelioma diagnosis and treatment. We are extremely grateful to Erase Meso for funding this vital research project that will focus on the testing and validation of a new drug target for mesothelioma patients. 

## **University of Glasgow** 

Collaborations with funding partners, HASAG & Erase Meso made it possible for the Board of Trustees to agree to progress the following projects to a total of £113,465.73 



Tipping the balance: pro-and anti-apoptotic proteins as determinants of radiation resistance in mesothelioma. We are extremely grateful to HASAG for funding this vital research project that will investigate why radiotherapy treatment reduces pain for some patients with the asbestos-related cancer, mesothelioma, and not others. 

## **University of Glasgow** 

EXTRA-Meso feasibility study – EXercise TheRApy in Mesothelioma feasibility study. Funded by Mesothelioma UK. 

17 



Mesothelioma UK 

## Ongoing Research 


## **Health & Lifestyle of Patients with Mesothelioma (HELP-MESO)** 

## Project Aims: 

The long-term scope of the research is to identify if patients, carers and HCPs support the use of diet and physical activity interventions to improve QoL in mesothelioma and identify what interventions would be most amenable that are designed around the needs of patients. 


## **MINNOW Study – Investigating the Mental health Implications of a mesothelioma diagnosis and developing resources to Optimise Wellbeing** 

## Project Aims: 

This study aims to increase understanding of the benefits and challenges of remote consultations for mesothelioma patients and carers following changes to clinical practice during the Covid-19 pandemic and inform future practice. 



## **Leveraging clonal genomics to augment diagnostic accuracy and forecast survival in mesothelioma** 

## Project Aims: 

The key aim of this project is to establish whether a deep knowledge of how mesothelioma evolves can be leveraged to develop a simple test that can be readily implemented in clinical practice. This test should be able to: 

1. Significantly improve diagnostic accuracy and 2. Predict clinical outcomes with respect to overall survival and commonly used chemotherapies 


## **Use of pleural effusion to diagnose mesothelioma by detection of genetic anomalies** 

## Project Aims: 

The purpose of the proposed study is to determine if pleural fluid could offer an alternative route to diagnosis of mesothelioma, with the goal of significantly reducing the number of patients requiring an invasive and protracted diagnostic pathway. This will increase the number of patients receiving earlier treatment, improving survival times. 

## **The journey from a diagnosis to end of life care for patients with Malignant Pleural Mesothelioma (MPM) a retrospective palliative care review** 

## Project Aims: 

To develop a greater understanding of the palliative care needs for patients with malignant pleural mesothelioma. To further understand how care is coordinated for these individuals, especially at the end-of-life. 

18 



Annual Report 2023 

## Update from the Mesothelioma UK Research Centre 



**The Mesothelioma UK Research Centre at the University of Sheffield was established in 2020 and** 

## **is funded by Mesothelioma UK for a term of three years.** 

These studies complement our existing portfolio of six other projects, which all respond to top priorities for mesothelioma research, as identified in our 2021 Research Prioritisation Exercise. 

Since the Research Centre was established the team have collectively published 34 articles in academic or clinical journals, with 20 of these published in the last year. The team have presented at a wide range of national and international conferences, with 41 presentations in the last year. 

The Research Centre have also been working hard to support other early career mesothelioma researchers and have provided mentoring and advice to fourteen students, nurses, doctors and other aspiring academics. 

Earlier this year we were delighted to be awarded funding from Mesothelioma UK for an additional 12 months of Research Centre activity, and we look forward to continuing our research and making a difference to people with mesothelioma and their families. 

The Research Centre is led by Prof Angela Tod and Prof Clare Gardiner who work with a team of researchers and PhD students, supported by a Patient and Public Involvement (PPI) panel. 

In its third year the Research Centre has continued to expand its programme of research to benefit the care of people diagnosed with mesothelioma and their families. 

More information about the Mesothelioma UK Research Centre can be found on their website: 

www.sheffeld.ac.uk/murc 

In 2022/23 we commenced two new studies - the Supporting Our Supporters (SOS) study which is exploring experiences of carers in mesothelioma, and the experiences of coroner/procurator fiscal services in mesothelioma study. 

19 



Mesothelioma UK 

## 3. Information 

**We want to ensure that everyone has access to high quality information, at the right time, empowering patients to make informed choices about their care.** 

Our accreditation with the PIF TICK, the UK-wide quality mark for health information from the Patient Information Forum, is a key part of this. Requirements of this include regularly reviewing our information and seeking feedback. We have a wonderful team of proofreading volunteers who help us with this. They spot errors in our information booklets and leaflets but also advise on the content itself. Their contribution is vital in making sure our information reflects the lived experience of people affected by mesothelioma. 

_“I knew I wanted to do something that would help the charity and would help spread the word, but I’m no marathon runner!! Due to my work and family life I don’t have a huge amount of time I can dedicate to volunteering but I have, however, always enjoyed reading and when I saw that I could volunteer as a proofreader, I realised this was something I could do to help out the charity. It’s such a small thing but I feel I’m doing my bit to help inform others who are in mums situation and who may have questions and concerns.”_ 

Our information needs to be clearly written and evidence-based, but the design is also important. Good design can help people navigate health content more easily and avoid information overload. And in May 2022, Roland Ungoed-Thomas joined us as Creative Designer.  Roland’s role involves making our information and promotional materials more visually engaging and impactful. 

During this time two key booklets have been reviewed _Mesothelioma and Diet_ and _Thinking Ahead: Preparing for End of Life_ . Both have been significantly revised both in terms of content and design. 

_Mesothelioma and Diet_ now has pictures and quotes breaking up the text. There’s also a new section aimed at family members acknowledging the difficulties they face watching a loved one struggle with eating. 

_Thinking Ahead: Preparing for End of Life_ was previously called _End of Life Tool_ . The new version is much less clinically orientated. It gives a gentler introduction to this difficult topic whilst not shying away from the facts. It aims to help people start preparing for end of life when they feel ready and at a pace that suits them. 


Our booklet _Mesothelioma: A Guide to This Asbestos Cancer_ is now on Healthinote. Already used by over 3,000 GP practices in the UK, Healthinote enables doctors, nurses and pharmacists to find reliable health information and send it to their patients. This means following a consultation with a patient, healthcare professionals can create an ‘information prescription’. It is also searchable by members of the public. 

We hope this will help more people access our specialist resources as well as raise awareness of the charity itself. 

- Gemma, Proofreading volunteer 

20 



Annual Report 2023 

## 4. Awareness 


**Mesothelioma UK regularly hear patients and their families ask for us to do everything we can to prevent ‘this’ happening to someone else. Mesothelioma is an avoidable cancer; it should never have happened on the scale it has, and Mesothelioma UK feel compelled to do all we can to raise awareness and to work toward a time when our future is free from mesothelioma.** 

Appointing the charity’s first External Affairs team member has enabled us to engage and contribute significantly to joint campaigns and advocacy initiatives. We have continued to act on findings from our growing portfolio of research particularly our Armed Forces and Health Care Workers research. 

Discussions have continued with the Ministry Of Defence, and we are working hard to secure commitment from the NHS to improve standards and awareness across the NHS. 

Our team has supported NHS approval processes for immunotherapy treatment which has resulted in equitable access throughout the NHS. Our palliative care research has underpinned development of awareness and information resources focused on raising the profile of palliative care and dispelling some of the myths. On a local level our nursing team monitor standards and individual experience continually and do all they can to advocate for better. 

The charity is now looking to lead mesothelioma specific campaigns and are keen to work more closely with likeminded groups, the growing cross-party support, journalists, policy makers and those able to influence legislative change. 

21 



Mesothelioma UK 

## Sharing Experiences 

## **At the heart of all the advocacy work is experience, the individual stories of those affected by mesothelioma.** 

For the generosity of those who share their story, those who engage with the evidence generating research, the journalists, and our partner groups, thank you. Your experiences really do give voice, you animate and provide depth and colour to the issues. Thank you for your honesty and for sharing, we are tremendously grateful. 

Being affected by mesothelioma has far reaching consequences, impacting not only the person with the disease but their friends and family too. This is why over the last 12 months we have started regularly publishing a greater range of social media content. This has helped us reach a wider audience as well as extending the scope of topics we provide support and information on. 

We also started a blog. Posts include interviews with operations team staff and our Clinical Nurse Specialists, as well as patients, families and carers. These help raise awareness of what we do as an organisation as well as the lived experience of mesothelioma. 



## Action Meso Day 

**Action Mesothelioma Day (Action Meso Day) took place on 1 July 2022 and saw over a hundred buildings and landmarks around the country light up blue for the #GoBlueForMeso campaign.** 

Mesothelioma UK’s headquarters is in Leicester where the King Richard III Visitor Centre and the Leicester Royal Infirmary hospital turned blue for the night. The charity also held an afternoon tea to raise funds and awareness. Guests were shown our new information video, ‘What is Meso?’ and heard from special guest Sandra Ball, who shared her experience of caring for her late husband. The event raised over £500. 


22 



Annual Report 2023 

## 5. Sustainability & Fundraising 

**As we reflect on the past year, we acknowledge the challenges Mesothelioma UK has faced. Despite the difficulties we have persevered, demonstrating resilience in the face of ongoing challenges in the charity sector.** 

To sustain current levels of activity and achieve a more equitable impact across the UK, we will continue to work toward achieving the goals set out in our strategy. 

- Working towards raising our sustainable income 

- Ensuring the right governance and support to enable us to grow effectively as an organisation 

- Develop and maintain a high performing team who can make a tangible difference to those affected by 

- mesothelioma 

Increasing our income is an ongoing challenge but one we will continue to work toward. And the support from our wonderful Meso Community of fundraisers and donors has been remarkable. They continue to do the most amazing things to not only raise funds but also raise awareness about asbestos and mesothelioma. 

We are truly grateful to all our philanthropic individuals, trusts, foundations, community clubs and our legal panel for their ongoing support, and who in these difficult times have enabled us to deliver vital support where it is needed most. Their generosity of spirit is boundless. Here is a short round up of what they have been up to! 

Paul was a novice cyclist who had not ridden since he was a teenager, but the year of training saw him through. This is what he had to say! “I did it! Almost 1,000 miles in nine days. Had some brutal days along the way – the challenge is a mental one as much as physical – but I arrived at John O’Groats on Sunday afternoon at around 3.30pm. I’ve raised over £5,300 for Mesothelioma UK so far not including Gift Aid. I’m confident I’ll get that up to £5,500 as there are some people I know who still haven’t donated (who said they would). My company has also pledged to donate 2x that of any employee so it could even be inching towards £6,000 by the time I’m done.” And he did, supported by his lovely mum, his family, friends and colleagues he raised an amazing £6,072. 

## **Jack Lannigan – Gaming for MUK** 

Ongoing supporter Jack Lannigan organised a 24-hour live stream on his gaming channel in aid of Mesothelioma UK. This is Jack’s second fundraiser for Mesothelioma UK having completed his first 24-hour live stream in 2021. Jack raised money for the charity in support of his lovely mum, who sadly passed away in September 2021 just six months after diagnosis. To date Jack has raised £1,730 in honour of his mum through live streaming. 

## **Team Horner - Walking for Rusty** 

In January 2020, Lois Roberts sadly lost her dad, Russell Horner, to peritoneal mesothelioma. On the 14th of May 2022, Team Horner got together for a second time to complete the Yorkshire Three peaks challenge to raise money for Mesothelioma UK. 

## Community Fundraising 

## **Paul Worgan - Ride Across Britain** 

One of our fantastic fundraisers Paul Worgan took part in the Ride Across Britain which is an epic nine day cycling challenge from Land’s End to John O’Groats. He took on this mammoth challenge in memory of his dad George who he lost to mesothelioma in 2020. 

“We had an amazing day for it, the sun shining down on us as we started the challenge from Horton in Ribblesdale. A special mention must go out to Robin Goldring, who not only completed the challenge but completed the Leeds Half Marathon the weekend before for Meso UK. Thanks to amazing support from friends, family and colleagues we raised £3,111 (inc. Gift Aid). A massive thank you to all those that took part, whether that be walkers, supporters, or donators. Here’s to our 2023 challenge and our future fundraising for a special charity and in memory of a wonderful man.’’ 

Lois and her friends and family have supported the charity since 2020 and have raised almost £12,000. They are determined to continue this support in honour of Russell into the future, we couldn’t be more grateful to have them as part of our fundraising team. 

23 



Mesothelioma UK 

## Challenges 


## **London Landmarks** 

Mesothelioma UK again took part and held its presence in the iconic London Landmarks half marathon in April and what a fantastic day it was. The weather was kind to us and the Meso UK cheer station were able to meet and cheer on our twenty fantastic runners. Nile our volunteer was there to capture that special moment of crossing the finishing line and they raised an amazing £21,304.20. 

## **The Great North Run** 

This was the first year Mesothelioma UK took part in yet another iconic race but this time in the North. In the mesothelioma community it is known as ‘The Great North Ron’ as Ron Snaith who has mesothelioma has taken part in every race and this year was his 41st. His son Paul ran alongside him as did ten others all with their own stories to tell. They raised an amazing £6,570.52. 

## Meso Fundraising Campaigns 


## **Muffins For Meso** 

This year we took a new approach to our longstanding fundraising campaign Muffins for Meso. We hosted the event nationwide on one day instead of across the whole of May and it was a huge success! For the first time the Mesothelioma UK team held its own event at our Loughborough HQ and we had plenty of lovely muffins sponsored by Waitrose Mountsorrel and were able to meet lots of people in the local community. In total the campaign raised nearly £3,000 and it was a brilliant day. 


24 



Annual Report 2023 

## Our Volunteers 


**Our wonderful volunteers never cease to amaze us, their unwavering support throughout the year has been exceptional.** 

We have a team of proofreaders who support our Senior Editorial Officer in editing our excellent patient information and resources. We have those that support at our charity events, from taking photos, cheering on our wonderful runners, standing in hospital foyers handing out information 

about the dangers of asbestos, to selling Christmas cards at our Patient & Carer Day. Their enthusiasm and commitment is wonderful, and we look forward to the year ahead with this fantastic team. 


Denise Burwell our events volunteer inspired her wonderful 

friend Jule Harries to make a hat and swim for Meso in support of Action Meso Day in the Reigate and Redhill area in memory of Denise’s dear Dad. Jule challenged herself to complete one hundred open water swims wearing a different hat for a different charity, and so the iconic Meso Lung Hat made its appearance as Jule made her 62nd open water swim. Both Denise and Jule made page three in the Surrey Mirror and the hat far exceeded everyone’s expectations! 


Nile Ateem our official photographer is always on hand with his trusty camera at our events including our London Landmarks Half Marathon cheer station, where he captures amazing shots of our wonderful runners crossing the finish line. He also joined CEO Liz Darlison and Team Meso in the Peak District Ultra Challenge taking some photos of their fantastic 25K walk, which inspired him to take on his own challenge next year! 

He has been instrumental in raising our profile with his inspiring photos and we are incredibly lucky to have his support. 

25 



Mesothelioma UK 

## Our Ambassadors 

**We have two ambassadors who give their time tirelessly. This is a voluntary role which involves them inspiring others to support the charity, educating those they meet about what we do and increasing the geographical reach of the charity.** 

**Brian Wallis** has done a tremendous amount of work over the last nine years in the East of England in memory of his dear wife Rosemary. Brian has set up support groups in Norfolk, Bury St Edmunds & Wells-next-the-Sea and champions Mesothelioma UK wherever he goes. He has been instrumental in raising funds for a Mesothelioma specialist nursing post in the Norfolk and Suffolk area and is truly committed to improving patients and their families mesothelioma journey. 

**Rosemary Giles** is a member of our legal panel and through her work meets with mesothelioma patients and their families on a daily basis. She too is inspirational and flies the flag for Meso wherever she goes. Rosemary is always on hand with advice and help whenever she is needed. 

## Mesothelioma UK Legal Panel 

**The Mesothelioma UK Legal Panel are a group of specialist solicitors who have years of experience providing specialist legal advice to people diagnosed with mesothelioma.** 

The panel includes twelve UK law firms that support and raise awareness of the charity as well as offering independent legal support to both patients and their families. They are instrumental in recovering costs for treatments that are not available on the NHS that patients may need in the future. 

A legal claim can sound very onerous to those diagnosed with mesothelioma but our expert legal panel members are there to help guide and navigate, providing clear and sound advice throughout and are always on hand to help. There is no cost to patients or families and the panel take extraordinary care to minimise the impact of pursuing a claim on their clients and families. 

The Mesothelioma UK Legal Panel support fundraising events and campaigns, promote our free will service leading to donations through legacies, share information for research, and collaborate with other specialist firms. They support our nurses through sponsorship for educational events and support our Patient & Carer Day and Awards Night. We are truly grateful for all they do. 

## Legacies 

Creating a future free from mesothelioma is our vision, and leaving a gift in your will is a key part of that impact. 

This year, we are grateful to announce that we received 25 legacy donations, totalling £133,686. Each gift in a will is a tremendous honour, symbolising the dedication and kindness of our supporters while enabling us to plan for the future. To further support this cause, Mesothelioma UK has partnered with several reputable firms from our Legal Panel to provide a complimentary will writing service. 

While there is no obligation to include a charitable gift, we encourage individuals to consider making a pledge to support Mesothelioma UK in their will. Since opening our free will writing service in 2019, we have assisted over 100 mesothelioma patients and their caregivers in creating or updating their will at no cost. 

If you are interested in leaving a lasting gift to Mesothelioma UK, please contact us at 0800 169 2409 to receive your complimentary legacy guide booklet, or you can request it online: 

www.mesothelioma.uk.com/downloadable-resources. 

Your generosity ensures a brighter future for those affected by mesothelioma. 

26 



Annual Report 2023 

## How We Raised the Funds 

Donations for Specific Funds **£30,550** 

Individual Giving **£403,257** 


**----- Start of picture text -----**<br>
£403,257 Corporate<br>and Trust<br>Corporate and Trust<br>£27,650 Grants<br>Grants<br>£677,322<br>Campaigns and  Individual<br>Challenges Giving<br>£80,736<br>Legacies<br>£133,686<br>Events<br>£36,158<br>Campaigns<br>Non-charitable<br>and Challenges<br>Trading Activities<br>£177,664<br>Donated Services  Legacies<br>and Facilities<br>Non-charitable<br>£25,000<br>Donations  Trading Activities<br>Investment for Specific  Events<br>Funds<br>£14,264<br>Rental<br>Rental<br>£4,170 Investment Donated<br>Services and<br>Major Donors - £0 Facilities<br>**----- End of picture text -----**<br>


TOTAL: £1,610,457 

27 



Mesothelioma UK 

## How We Spent the Funds 

Income Generation **£215,630** 

Patient Support Costs **£887,956** 


**----- Start of picture text -----**<br>
Admin & Operational<br>£264,483<br>Research & Audit Income<br>Admin and<br>£275,373 Operational Generation<br>Awareness<br>£118,926<br>Research<br>Information Costs and Audit<br>£76,865<br>Awareness<br>Information<br>Patient<br>Support<br>TOTAL:<br>**----- End of picture text -----**<br>


TOTAL: £1,839,233 

28 



Annual Report 2023 

## Corporate Relations 

**Mesothelioma UK has a strong and enduring relationship with many specialist personal injury law firms. There is a synergy between our roles, due to the fact we both interact and support people navigating the legal system whilst coping with the health implications of mesothelioma.** 

Our legal panel, which has now grown from 8 to 12 members, are also some of our most generous supporters. They donate, fundraise, take on challenges, attend events, promote the charity, sponsor education as well as engage with our research and campaigns. We are very proud of our relationship with them, and grateful for their continuing support. 

This year we have also started to reach out to the asbestos corporate community. Although early days, it is increasingly apparent that similar gains will be made by establishing a relationship with them. Whether they are asbestos analysts, surveyors, educators or removers, they are far better placed than Mesothelioma UK, on a day-to-day basis, to reduce risk and prevent exposure. 

They are at the ‘coal face’ of the UK’s asbestos legacy. They witness and monitor asbestos presence and completely focus on removing and reducing exposure risk. For the asbestos companies we have started to work with, we are seeing that engaging with Mesothelioma UK provides greater meaning, purpose and value to what they do. Being able to share our unique insight into the health impact of asbestos, as well as individual stories and audit and research evidence, really does stimulate interest and conversation. 

We hope to build stronger and more meaningful relationships across all sectors of the asbestos community. Ultimately we all want the same thing - a safer, asbestos-free environment. 

## Events 


## **Patient and Carer Day** 

Mesothelioma UK was delighted to host our 17th annual Patient and Carer Day. The Belfry Nottingham Hotel and Conference Centre was the setting on a sunny autumn day in October. As the guests began to arrive, it was wonderful to see and hear people enjoying being back in the same room as each other again. There was a real sense of excitement and anticipation to see speakers on stage, rather than on screen! 

Mesothelioma UK Clinical Nurse Specialists Anne Moylan and Carolyn MacRae introduced the day and first up was Professor Dean Fennell, Consultant Thoracic Medical Oncologist, who gave an update on the latest clinical trials. Professor Fennell talked about the results of current and past trials, and also plans for new ones. More practical advice came from Sarah Thomas, Mesothelioma UK Benefits Advisor. Sarah talked about all of the discounts, savings and exemptions available to patients and carers. 

Last, but by no means least, we welcomed Helen Bone to the stage. Helen is 39 and was diagnosed with mesothelioma aged 38. Helen shared her inspiring and at times emotional story with the guests and it’s safe to say there were both tears and laughter. Helen spoke with honesty, humour and pragmatism, and explained why it’s important to her to talk about her journey in her blog, ‘It Is What It Is’ (https://helenbone82.wixsite.com/itiswhatitis), to raise awareness and help others going through a similar experience. Everyone was on their feet at the end of her talk, with a tear in their eye and the utmost respect and admiration for Helen. 

One hundred and sixty-five participants registered and overall feedback was very positive. 

29 



Mesothelioma UK 

## **Awards Night** 

Mesothelioma UK’s annual awards event took place on the evening of Patient and Carer Day. Guests arrived in their finest black and white dress, and enjoyed a meal, drinks and a raffle before the awards were announced. 

## Congratulations go to our winners who were: 

## **Ladies Lunch** 

On Wednesday 8 March, attendees gathered for the Mesothelioma UK Ladies lunch at the Manchester Piccadilly Hotel. Spirits were high as patients, families, healthcare professionals and members of the legal community gathered to celebrate women who have made mesothelioma matter. Special guest speaker on the day was Helen Bone. 

## **Junior Fundraiser of the Year - Reuben Gaunt** 

In September 2021, Reuben took part in the 20for20 challenge to raise money for Mesothelioma UK in support of his grandad, Ray. Since then, Reuben and his family have raised over £1,700 for us. 

## **Fundraiser of the Year – Team Horner** 

The family of Russell Horner, who passed away from peritoneal mesothelioma, took on the Three Peaks twice and team member Robin took on the Leeds Half Marathon. The team has raised over £12,000 in memory of Russell and will continue to support the charity with further fundraising events. 

## **Impact Award – the Rodgers family** 

The family of the late Tony Rodgers, daughters Laura, Niamh and Helen, and wife Barbara were eager to do what they could to improve support and care for others across Northern Ireland (NI) and we’re working with them to achieve this. The family has been an essential catalyst for establishing a team approach to improvements across NI and have raised over £27,000 so far. 

## **Special Contribution – Mavis Nye** 

Mavis was diagnosed in 2009 and set up the Mavis Nye Foundation in 2017. The foundation works tirelessly to raise awareness and funds to improve both treatment and care for other mesothelioma patients. Mavis and Ray have been stalwart supporters of the vital work Mesothelioma UK do to support patients, carers and anyone affected by mesothelioma. 

## **Most Inspirational Award – Sally Collins (posthumously)** 

This award was given posthumously to Sally Collins and collected by her husband Jasper and sons Rowan and Tom. Sally organised many fundraisers and always had a smile on her face despite facing mesothelioma and breast cancer. Sadly, Sally died in June. She was a true inspiration. 

## **Corporate Sponsor of the Year – JDR Cables Limited** 

During the past ten years, JDR Cable Systems Ltd. has raised over £146,500 for its selected charities and Mesothelioma UK has benefitted tremendously from its efforts. The company held a charity summer ball this year that raised over £20,000 for Mesothelioma UK and Readley. We are very grateful to JDR Cables for its continued support and fantastic fundraising events. 

Throughout the lunch there were raffles, a golden envelope draw and also an auction with the opportunity to win an overnight stay at the beautiful Hallgarth Manor and a signed Manchester United football. Our thanks go to all those that attended and supported us to raise over £3,500. 

## **Action Meso Day/Go Blue for Meso** 

Friday 1 July 2022 marked Action Mesothelioma Day. The Mesothelioma UK team held an afternoon tea and day of remembrance at the Loughborough HQ, and it was a wonderful day where stories and memories were shared. There was also brilliant support across the country for the Go Blue for Meso campaign by the Action Meso group which Mesothelioma UK happily supported. 

One of our fundraisers and supporters Lizzy Kyricou created a unique design that we had printed on t-shirts. Over 100 were ordered in support of the event and we were so grateful to Lizzy for her help. “I was over the moon to be asked by Alyshia at Mesothelioma UK to design a limited-edition t-shirt. My sister-in-law was diagnosed with Mesothelioma in 2019, so it’s a charity that is very close to my family’s heart.” 


30 



Annual Report 2023 

## Trustees Report 

Reference and administrative details of the charity, its trustees and advisers for the period ended 31 March 2023 

## **Status** 

The organisation is a charitable incorporated organisation. Launched as a resource centre in 2004 it became a Charitable Trust in 2008 and re-registered as a Charitable Incorporated Organisation in 2018. 

## **Governing Document** 

Since re-registering in 2018 the charity has operated with a constitution and the income and property of the charity shall be applied solely towards the promotion of its objects as set out in its constitution. 

## **Charity Number** 

1177039 

**Company Number** 12541690 

## **Principal office** 

235 Loughborough Road Mountsorrel, Loughborough LE12 7AS 

## **Trustees** 

Dr N Maskell (Chair) Prof M D Peake D E McKinley A L Coates S E Hague Dr D J Hetmanski H Childs M Waters Prof K Blyth 

## **Independent Auditors** 

## **Chief Executive Officer** 

Liz Darlison 

## **Operational Team** 

Faye Forde, Director of Operations Saranjit Sihota, Director of External Affairs Tracey Calvert, Finance Manager Jill Lemon, Senior Fundraiser, Campaigns, Challenges and Legacies Alyshia Riley, Senior Digital Fundraiser Mike Holmes, Senior Corporate Relations Officer Julie Morton, Senior Administration Officer Joelle Kirby, Senior Editorial Officer Sarah Thomas, Senior Benefits Officer Roland Ungoed–Thomas, Creative Designer Rachel Owen, Events Officer Beth Colbert, Administration Officer Hazel Curtis, Finance Officer Leah Scrimshire, Fundraising Assistant Dumitrita Gulian, Finance Assistant Abigail Wilson, Business Administration Apprentice (completed apprenticeship Dec 2022) Beverley Forrester, Housekeeper 

## **Subsidiaries and related parties** 

The Mesothelioma UK Trading Company was in incorporated on 31st March 2020 with company number 12541690. It is the sole subsidiary of Mesothelioma UK and exists to raise trading income for the charity. All its profits were transferred to the charity. 

## **Changes to the board** 

Prof Michael David Peake, David John Hetmanski and Sharon Hague resigned in March 2023. 

Mark J Rees LLP Chartered Accountants and Statutory Auditors Granville Hall Granville Road Leicester LE1 7RU 

31 



Mesothelioma UK 

## Financial Review 

## Basis for How We Spent Preparation the Funds 

Having reviewed Mesothelioma UK’s income and expenditure and the plans for the year ahead the trustees are confident that the charity has adequate resources to continue in operational existence for the foreseeable future and have also concluded that the charity is able to meet its liabilities as they fall due. For this reason the trustees continue to adopt the going concern basis in preparing the financial statements. 

The pie chart on page 28 shows how we spent our funds in 2022/23. Expenditure rose from £1,574,876 in 2021/22 to £1,839,233 in 2022/23. Spending on charitable activities was £1,623,603, an increase of 15.65% on the previous year. As in previous years the largest expenditure was on the patient support pillar, which is mainly comprised of the funding of specialist nursing posts. 

## How We Raised the Funds 

The pie chart on page 27 gives a breakdown of how the charity has raised £1,610,457. Gross income increased on the previous year but failed to reach expenditure levels, and securing unrestricted funds has proven to be particularly challenging. 

To meet the prioirities outlined in the charity’s strategy new posts were appointed during this year. For example, keen to maximise the impact of research the charity has funded, and committed to giving those living with mesothelioma a voice, the charity started to focus on awareness and campaigns. A Director of External Affairs was appointed to lead on this work. 

The overall costs of raising funds was 13% of the total income, the same as last year and similar to pre-pandemic levels. Going forward the need to invest in fundraising is essential if income is to grow sufficiently. 

For the second year consecutively, the charity has had to utilise some of its reserves. £283,366 of the charities reserves were utilised in 2023 (£252,685 in 2022). 

## Risks 

Mesothelioma UK’s income and service developments haven’t always kept pace with one another. In the past the charity’s reserves have at times exceeded a level accepted by some grants and trusts that applications were submitted to. 

Mesothelioma UK remains indebted to our charity partners who have provided significant funds  toward the charity’s team of specialist nurses. A total of £294,326 was raised through these organisations towards the cost of funding these specialist nurses. Income, excluding legacies was £1,134,029 in 2021/22 and it rose to £1,476,771 in the year 2022/23. 

Day to day risks for the charity are identified, treated, or managed and then monitored by the operational team. Those that pose the greatest threat to the charity are raised with the board of trustees. 

The charity’s finances have been a major cause for concern and pose the greatest risk to the organisation. Expenditure has continued to be significantly higher than income. 

As a matter of priority, a broad programme of work, across all income generation, is taking place and the trustees are working closely with the operational team with this. 

32 



Annual Report 2023 

## Reserves 

As an organisation relying almost entirely on fundraising income, our policy is to hold adequate reserves to enable us to react to any unexpected adverse events. 

The trustees undertook a review of the charity’s reserves policy during the year and have determined that our unrestricted reserves should cover at a minimum, six months operating and research centre costs, three months costs of our contractual liabilities, and also to enable us to fulfil all our research project costs. The trustees felt it was no longer necessary to set an upper to limit to reserves however funds will not be retained unnecessarily. 

As at 31 March 2023 the minimum unrestricted reserves were £641,088 (31 March 2022 - £793,592) and the actual level of unrestricted reserves, excluding the value of tangible fixed assets, held by the charity was £771,847 (31 March 2022 - £1,241,666). 

The really problematic area of longer duration fixed interest was avoided, but losses were still evident over the 12 months. We experienced the markets being impacted negatively by the aftereffects of the response to the covid pandemic, as well as other global issues such as Ukraine crisis. 

High inflation and interest rates were the main reason Equities, Fixed interest, Gold, Property and Infrastructure all reduced in value at the same time. These investments are, however, designated for longterm investing and if we review the overall portfolio strategy over a longer period of time, it remains in a positive territory. Interest rates look at or close to the peak also meaning the outlook for most asset classes looks much improved from here. 

Ethical investments have again tended to underperform the general market over the last 12 months, as they are seen to be more growth orientated, and more traditional industries such as Banks and Olis fared better. The former sector still reducing in value however. 

Over the longer term it is believed Ethical investments still offer better prospects and outperform the wider market, it is the future, but are likely to be more volatile due to the concentration on a narrower band of investments. 

## Investments 

Our investment portfolio is managed by Magma Wealth Management. As at the 31 March 2023 the portfolio stood at £730,643.20. This includes £715,835.21 of invested assets and £14,807.99 of cash. The investment managers brief is to manage the portfolio within agreed risk tolerance to produce long term growth in excess of Bank of England base rate plus 4% pa whilst investing in “ethical investments”.  i.e. excluding specific sectors deemed to be causing harm and positively investing in Companies who are seen to be benefiting the world. 2022 was a very difficult year for investment with virtually all asset classes reducing in value globally. The significant diversification evident in the portfolio which would normally protect asset values from global shocks did not work as a result. 

## Funds Held as Custodian 

In 2022, the charity held funds on behalf of the Melu lunch club for mesothelioma and other lung patients. The funds held at 31st March 2022 were £517. All of these funds were utilised by the Melu lunch club during the year. 

The charity also holds funds on behalf of the UK Mesothelioma Alliance of £1,334 (2022 - £8,806). 

33 



Mesothelioma UK 

## Looking Forward From the Chair of the Trustees Board 


## **The year ahead will see Mesothelioma UK focus on income generation.** 

We must review and invest in our fundraising. This will enable us to sustain current activity and work toward realising the vision outlined in our strategy. 

We look forward to increasing the charity’s impact, disseminating and acting on the findings of our research, campaigning with partner groups and organisations as well as continuing our own advocacy work. 

We look forward to nurturing and developing the charity’s team and growing the Mesothelioma UK community and our amazing supporters. Together we will continue to do all we can for those living with mesothelioma and prevent more families being affected in the future. 


**Prof N Maskell** Chair of the Trustees Board 

We hope to reach more people and families living with mesothelioma and will keep engaging with the NHS to do all we can to improve access to expertise, support and treatment. 

34 



Annual Report 2023 

## Financial Statements 

## Statement of Trustees’ Responsibilities 

and Reports) Regulations 2008 and the provisions of the CIO trust deed/constitution. They are also responsible for safeguarding the assets of the charity and hence for taking reasonable steps for the prevention and detection of fraud and other irregularities. 

The trustees are responsible for preparing the Report of the Trustees and the financial statements in accordance with applicable law and United Kingdom Accounting Standards (United Kingdom Generally Accepted Accounting Practice). 

In so far as the trustees are aware: 

- there is no relevant audit information of which the group’s auditors are unaware; and 

The law applicable to charities in England & Wales requires the trustees to prepare financial statements for each financial year which give a true and fair view of the state of affairs of the group and the charity and of the incoming resources and application of resources, including the income and expenditure, for that period. In preparing those financial statements, the trustees are required to: 

- the trustees have taken all steps that they ought to have taken to make themselves aware of any relevant audit 

- information and to establish that the auditors are aware of that information. 

## AUDITORS 

- select suitable accounting policies and then apply them consistently; 

The auditors, Mark J Rees LLP Chartered Accountants, will be proposed for re-appointment at the forthcoming Annual General Meeting. 

- observe the methods and principles of the Charities SORP (FRS 102); 

Approved by order of the members of the board of Trustees and signed on its behalf by: 

- make judgements and accounting estimates that are reasonable and prudent; 


- state whether applicable UK Accounting Standards (FRS 102) have been followed, subject to any material 

- departures disclosed and explained in the financial statements; 

**Prof N Maskell** Trustee Date: 11th January 2024 

- prepare the financial statements on the going concern basis unless it is inappropriate to presume that the charity will continue in business. 


The trustees are responsible for keeping proper accounting records which disclose with reasonable accuracy at any time the financial position of the group and to enable them to ensure that the financial statements comply with the Charities Act 2011, the Charity (Accounts 

**D McKinley** Trustee Date: 11th January 2024 

35 



Mesothelioma UK 

## Independent Auditors’ report 

## **Opinion** 

## **Basis for opinion** 

We have audited the financial statements of Mesothelioma UK Charitable Incorporated Organisation (the ‘parent charity’) and its subsidiaries (the ‘group’) for the year ended 31 March 2023 which comprise the Consolidated Statement of Financial Activities, the Consolidated Balance Sheet, the Charity Balance Sheet, the Consolidated Cash Flow Statement and Consolidated notes to the financial statements, including a summary of significant accounting policies. The financial reporting framework that has been applied in their preparation is applicable law and United Kingdom Accounting Standards (United Kingdom Generally Accepted Accounting Practice). 

We conducted our audit in accordance with International Standards on Auditing (UK) (ISAs (UK)) and applicable law. Our responsibilities under those standards are further described in the Auditors’ responsibilities for the audit of the financial statements section of our report. We are independent of the Group in accordance with the ethical requirements that are relevant to our audit of the financial statements in the United Kingdom, including the Financial Reporting Council’s Ethical Standard, and we have fulfilled our other ethical responsibilities in accordance with these requirements. We believe that the audit evidence we have obtained is sufficient and appropriate to provide a basis for our opinion. 

In our opinion the financial statements: 

- give a true and fair view of the state of the Group’s and of the parent charity’s affairs as at 31st March 2023 and of the Group’s incoming resources and application of resources, including its income and expenditure for the period then ended; 

- have been properly prepared in accordance with United Kingdom Generally Accepted Accounting Practice; and 

- have been prepared in accordance with the requirements of the Charities Act 2011. 

## **Conclusions relating to going concern** 

In auditing the financial statements, we have concluded that the trustees’ use of the going concern basis of accounting in the preparation of the financial statements is appropriate. 

Based on the work we have performed, we have not identified any material uncertainties relating to events or conditions that, individually or collectively, may cast significant doubt on the group’s and the parent charity’s ability to continue as a going concern for a period of at least twelve months from when the financial statements are authorised for issue. 

Our responsibilities and the responsibilities of the trustees with respect to going concern are described in the relevant sections of this report. 

36 



Annual Report 2023 

## **Other information** 

The trustees are responsible for the other information. The other information comprises the information included in the Annual Report, other than the financial statements and our Report of the Independent Auditors thereon. 

Our opinion on the financial statements does not cover the other information and, except to the extent otherwise explicitly stated in our report, we do not express any form of assurance or conclusion thereon. 

In connection with our audit of the financial statements, our responsibility is to read the other information and, in doing so, consider whether the other information is materially inconsistent with the financial statements or our knowledge obtained in the audit or otherwise appears to be materially misstated. If we identify such material inconsistencies or apparent material misstatements, we are required to determine whether this gives rise to a material misstatement in the financial statements themselves. If, based on the work we have performed, we conclude that there is a material misstatement of this other information, we are required to report that fact. We have nothing to report in this regard. 

## **Matters on which we are required to report by exception** 

We have nothing to report in respect of the following matters where the Charities (Accounts and Reports) Regulations 2008 requires us to report to you if, in our opinion: 

- the information given in the Trustees’ report is inconsistent in any material respect with the financial statements; or 

- the parent charity has not kept sufficient accounting records; or 

- the parent charity financial statements are not in agreement with the accounting records and returns; or 

- we have not received all the information and explanations we require for our audit. 

## **Responsibilities of trustees** 

As explained more fully in the Statement of Trustees’ Responsibilities, the trustees are responsible for the preparation of the financial statements and for being satisfied that they give a true and fair view, and for such internal control as the trustees determine is necessary to enable the preparation of financial statements that are free from material misstatement, whether due to fraud or error. 

In preparing the financial statements, the Trustees are responsible for assessing the Group’s and the parent charity’s ability to continue as a going concern, disclosing, as applicable, matters related to going concern and using the going concern basis of accounting unless the Trustees either intend to liquidate the Group or the parent charity or to cease operations, or have no realistic alternative but to do so. 

37 



**Mesothelioma UK** 

## **Our responsibilities for the audit of the financial statements** 

We have been appointed as auditors under Section 144 of the Charities Act 2011 and report in accordance with the Act and relevant regulations made or having effect thereunder. 

Our objectives are to obtain reasonable assurance about whether the financial statements as a whole are free from material misstatement, whether due to fraud or error, and to issue a Report of the Independent Auditors that includes our opinion. Reasonable assurance is a high level of assurance, but is not a guarantee that an audit conducted in accordance with ISAs (UK) will always detect a material misstatement when it exists. Misstatements can arise from fraud or error and are considered material if, individually or in the aggregate, they could reasonably be expected to influence the economic decisions of users taken on the basis of these financial statements. 

Irregularities, including fraud, are instances of noncompliance with laws and regulations. We design procedures in line with our responsibilities outlined above, to detect material misstatements in respect of irregularities, including fraud. Owing to the inherent limitations of an audit, there is an unavoidable risk that material misstatements in the financial statements may not be detected, even though the audit is properly planned and performed in accordance with ISA’s (UK). 

The extent to which our procedures are capable of detecting irregularities, including fraud, is detailed below. 

We obtained an understanding of the legal and regulatory frameworks applicable to the group and the parent charity and industry in which it operates through our general commercial experience. We determined that the following laws and regulations were most significant: Charities SORP (FRS 102). 

We enquired of management concerning the group’s and parent charity’s policies and procedures relating to: 

- the identification and compliance with laws and regulations. 

- the detection and response to the risks of fraud. 

- the internal controls inherent within the group and parent charity to mitigate fraud risk and noncompliance to laws and regulations. 

We enquired of management whether they were aware of any instances of non-compliance with laws and regulations or whether they had any knowledge of actual, suspected or alleged fraud. We communicated relevant laws and regulations and potential areas of fraud to all audit team members. We remained alert to any indications of fraud or non-compliance with laws and regulations throughout the audit. 

We have determined that the principal risk areas where material irregularities could occur were related to posting manual journal entries to manipulate financial performance, income recognition and significant oneoff or unusual transactions. Our audit procedures were designed to respond in particular to these identified risks (including non-compliance with laws and regulations and fraud). 

Our audit procedures included but were not limited to: 

- A review of a sample of sales invoices and monies received from the income streams to ensure income has been accurately recorded and to confirm amounts are recognised in the correct period. 

- A review of laws and regulations the charity is subject to, followed by compliance checks and discussion with 

- management to ensure no instances of non-compliance. 

- Addressing the risks of fraud through management override of controls by performing a journal entry test. 

- We did not identify any matters during the course of our work that indicated non-compliance with laws and regulations or relating to fraud. 

38 



**Annual Report 2023** 

A further description of our responsibilities for the audit of the financial statements is located on the Financial Reporting Council’s website at www.frc.org.uk/ auditorsresponsibilities. This description forms part of our Report of the Independent Auditors. 

## **Use of our report** 

This report is made solely to the charity’s trustees, as a body, in accordance with Part 4 of the Charities (Accounts and Reports) Regulations 2008. Our audit work has been undertaken so that we might state to the charity’s trustees those matters we are required to state to them in an auditors’ report and for no other purpose. To the fullest extent permitted by law, we do not accept or assume responsibility to anyone other than the charity and the charitable company’s trustees as a body, for our audit work, for this report, or for the opinions we have formed. 

## **Mark J Rees LLP Chartered Accountants and Statutory Auditors** 

Eligible to act as an auditor in terms of Section 1212 of the Companies Act 2006 Granville Hall Granville Road Leicester LE1 7RU 

Date: 11th January 2024 

39 



Mesothelioma UK 

## Consolidated Statement of financial activity for the year ended 31st March 2023 


**----- Start of picture text -----**<br>
Unrestricted funds Restricted funds Total funds Total funds<br>£ £ 2023 2022<br>£ £<br>Notes<br>Income and endowments from:<br>Donations and legacies 3 828,427 585,932 1,414,359 1,178,928<br>Other trading activities 4 177,664 - 177,664 133,789<br>Investments 5 14,264 - 14,264 5,388<br>Other income 6 4,170 - 4,170 650<br>Total 1,024,525 585,932 1,610,457 1,318,755<br>Expenditure on:<br>Raising funds 7 215,630 - 215,630 171,498<br>Charitable activities 8<br>-<br>Information expenses 76,865 76,865 69,126<br>Awareness costs 109,230 9,696 118,926 54,510<br>Research & audit costs 271,913 3,460 275,373 215,861<br>Patient support costs 503,088 384,868 887,956 866,276<br>Administration and operational<br>costs 262,613 1,870 264,483 197,605<br>Total 1,439,339 399,894 1,839,233 1,574,876<br>-<br>Net gains/(losses) on investments (54,590) (54,590) 3,436<br>Net income (expenditure) (469,404) 186,038 (283,366) (252,685)<br>Reconciliation of funds:<br>Total funds brought forward 1,255,108 138,464 1,393,572 1,646,257<br>Total funds carried forward 785,704 324,502 1,110,206 1,393,572<br>**----- End of picture text -----**<br>


40 



Annual Report 2023 

## Consolidated Balance Sheet as at 31st March 2023 


**----- Start of picture text -----**<br>
2023 2022<br>Notes £ £<br>Fixed assets:<br>Tangible assets 16 13,857 13,442<br>Investments 17 731,620 772,020<br>745,477 785,462<br>Current assets:<br>Debtors 18 122,606 196,587<br>Investments 19 101,638 189,000<br>Cash at bank and in hand 336,380 422,438<br>560,624 808,025<br>Creditors: amounts falling due  20 (195,895) (199,915)<br>within one year<br>Net current assets 364,729 608,110<br>Total assets less current liabilities 1,110,206 1,393,572<br>Total net assets 1,110,206 1,393,572<br>Charity funds:<br>Unrestricted funds 23 785,704 1,255,108<br>Restricted funds 324,502 138,464<br>Total funds 1,110,206 1,393,572<br>**----- End of picture text -----**<br>


The financial statements were approved and authorised for issue by the Trustees and signed on their behalf by: 



**Prof N Maskell** Trustee Date: 11th January 2024 

**D McKinley** Trustee Date: 11th January 2024 

41 



Mesothelioma UK 

Annual Report 2023 

## Charity Balance Sheet as at 31st March 2023 


**----- Start of picture text -----**<br>
2023 2022<br>Notes £ £<br>Fixed assets:<br>Tangible assets 16 13,857 13,442<br>Investments 17 731,621 772,021<br>745,478 785,463<br>Current assets:<br>Debtors 18 122,606 189,062<br>Investments 19 101,638 189,000<br>Cash at bank and in hand 336,380 422,438<br>560,624 800,500<br>Creditors: amounts falling due  20 (195,896) (192,391)<br>within one year<br>Net current assets 364,728 608,109<br>Total assets less current liabilities 1,110,206 1,393,572<br>Total net assets 1,110,206 1,393,572<br>Funds:<br>Unrestricted funds 23 785,704 1,255,108<br>Restricted funds 324,502 138,464<br>Total funds 1,110,206 1,393,572<br>**----- End of picture text -----**<br>


The financial statements were approved and authorised for issue by the Trustees and signed on their behalf by: 


**Prof N Maskell** Trustee Date: 11th January 2024 


**D McKinley** Trustee Date: 11th January 2024 

42 

42 



Mesothelioma UK 

**Annual Report 2023** 

## Consolidated Cash Flow Statement as at 31st March 2023 


**----- Start of picture text -----**<br>
2023 2022<br>Notes £ £<br>Cash flows from<br>operating activities:<br>Cash generated from operations 1 (80,407) 136,158<br>Net cash (used in)/provided by (80,407) 136,158<br>operating activities<br>Cash flows from<br>investing activities<br>Purchase of tangible fixed assets (5,724) (9,448)<br>Purchase of fixed asset  (189,451) (715,121)<br>investments<br>Sale of fixed asset investments 175,260 686,176<br>Interest received 14,264 5,388<br>Net cash used in investing activities (5,651) (33,005)<br>Change in cash and cash  (86,058) 103,153<br>equivalents in the reporting<br>period<br>Cash and cash equivalents at the<br>beginning of the reporting period 422,438 319,285<br>Cash and cash equivalents at the<br>end of the reporting period 336,380 422,438<br>**----- End of picture text -----**<br>


42 

43 



Mesothelioma UK 

## Notes to the Consolidated Cash Flow Statement for the period ended 31st March 2023 

## **1. RECONCILIATION OF NET EXPENDITURE TO NET CASH FLOW FROM OPERATING ACTIVITIES** 


**----- Start of picture text -----**<br>
2023 2022<br>£ £<br>Net expenditure for the reporting period (as per the<br>Statement of Financial Activities) (283,366) (252,685)<br>Adjustments for:<br>Depreciation charges 5,310 3,233<br>Losses/(gain) on investments 54,590 (3,436)<br>Interest received (14,264)  (5,388)<br>Decrease in debtors/current asset investments 153,819 329,490<br>Increase in creditors 3,504 64,944<br>Net cash (used in)/provided by operations (80,407) 136,158<br>2. ANALYSIS OF CHANGES IN NET FUNDS<br>At 01.04.22 Cash flow  At 31.03.22<br>£ £ £<br>Net cash<br>Cash at bank and in hand 422,438 (86,058) 336,380<br>422,438 (86,058) 336,380<br>Liquid resources<br>- - -<br>Deposits included in cash<br>Current asset investments 189,000 (87,362) 101,638<br>189,000 (87,362) 101,638<br>Total 611,438 (173,420) 438,018<br>**----- End of picture text -----**<br>


44 



**Annual Report 2023** 

## Notes to the Financial Statements for the period ended 31st March 2023 

## **1. ACCOUNTING POLICIES** 

## **Basis of preparing the financial statements** 

The financial statements have been prepared in accordance with the Charities SORP (FRS 102) ‘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 (FRS 102), Financial Reporting Standard 102 ‘The Financial Reporting Standard applicable in the UK and Republic of Ireland’ and the Charities Act 2011. 

Mesothelioma UK CIO meets the definition of a public benefit entity under FRS 102. The financial statements have been prepared under the historical cost convention, with the exception of investments which are included at market value, as modified by the revaluation of certain assets. 

## **Income** 

All income is recognised once the Group has entitlement to the income, it is probable that the income will be received and the amount of income receivable can be measured reliably. 

For legacies, entitlement is taken as the earlier of the date on which either: the Group is aware of probate has been granted, the estate has been finalised and notification has been made by the executor(s) to the Group that a distribution will be made, or when a distribution is received from the estate. Receipt of a legacy, in whole or in part, is only considered probable when the amount can be measured reliably and the Group has been notified of the executor’s intention to make a distribution. Where legacies have been notified to the Group, or the Group is aware of the granting of probate, and the criteria for income recognition have not been met, then the legacy is treated as a contingent asset and disclosed if material. Donated services or facilities are recognised when the Group has control over the item, any conditions 

associated with the donated item have been met, the receipt of economic benefit from the use of the Group of the time is probable and that economic benefit can be measured reliably. In accordance with the Charities SORP (FRS 102), the general volunteer time is not recognised and refer to the Trustees’ report for more information about their contribution. 

On receipt, donated professional services and donated facilities are recognised on the basis of the value of the gift to the charity which is the amount the Group would have been willing to pay to obtain services or facilities or equivalent economic benefit on the open market; a corresponding amount is then recognised in expenditure in the period of receipt. 

Grants are included in the Consolidated statement of financial activities on a receivable basis. The balance of income received for specific purposes but not expended during the period is shown in the relevant funds on the Balance sheet. Where income is received in advance of entitlement of receipt, its recognition is deferred and included in creditors as deferred income. Where entitlement occurs before income is received, the income is accrued. 

Income tax recoverable in relation to donations received under Gift Aid or deeds of covenant is recognised at the time of the donation. 

Income tax recoverable in relation to investment income is recognised at the time the investment income is receivable. 

Other income is recognised in the period in which it is receivable and to the extent the goods have been provided or on completion of the service. 

45 



Mesothelioma UK 

Notes to the Financial Statements for the period ended 31st March 2023 (continued) 

## **Expenditure** 

Expenditure is recognised once there is a legal or constructive obligation to transfer economic benefit to a third party, it is probable that a transfer of economic benefits will be required in settlement and the amount of the obligation can be measured reliably. Expenditure is classified by activity. The costs of each activity are made up of the total of direct costs and shared costs, including support costs involved in undertaking each activity. Direct costs attributable to a single activity are allocated directly to that activity. Shared costs which contribute to more than one activity and support costs which are not attributable to a single activity are apportioned between those activities on a basis consistent with the use of resources. Central staff costs are allocated on the basis of time spent, and depreciation charges allocated on the portion of the asset’s use. 

Fundraising costs are those incurred in seeking voluntary contributions and do not include the costs of disseminating information in support of the charitable activities. Support costs are those costs incurred directly in support of expenditure on the objects of the charity and include project management carried out at Headquarters. 

Costs of generating funds are costs incurred in attracting voluntary income, and those incurred in trading activities that raise funds. 

Charitable activities and Governance costs are costs incurred on the charity’s operations, including support costs and costs relating to the governance of the charity apportioned to charitable activities. 

## **Tangible fixed assets** 

All assets costing more than £500 are capitalised. A review for impairment of a fixed asset is carried out if events or changes in circumstances indicate that the carrying value of any fixed asset may not be recoverable. Shortfalls between the carrying value of fixed assets and their recoverable amounts are recognised as impairments. 

Impairment losses are recognised in the Consolidated Statement of Financial Activities. 

Tangible fixed assets are carried at costs, net of depreciation and any provision for impairment. Depreciation is provided at rates calculated to write off the cost of fixed assets, less their estimated residual value, over their expected useful lives. 

Depreciation is provided on the following bases: 

- Fixtures and fittings 15% reducing balance •   Computer equipment 33.33% reducing balance 

## **Taxation** 

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

## **Fund accounting** 

General funds are unrestricted funds which are available for use at the discretion of the Trustees in furtherance of the general objectives of the Group and which have not been designated for other purposes. Restricted funds are funds which are to be used in accordance with specific restrictions imposed by donors or which have been raised by the Group for particular purposes. The costs of raising and administering such funds are charged against the specific fund. The aim and use of each restricted fund is set out in the notes to the financial statements. 

Investment income, gains and losses are allocated to the appropriate fund. 

## **Operating leases** 

Rentals paid under operating leases are charged to the statement of financial activities on a straight line basis over the lease term. 

46 



**Annual Report 2023** 

Notes to the Financial Statements for the period ended 31st March 2023 (continued) 

## **Pension costs and other post-retirement benefits** 

The Group operates a defined contribution pension scheme and the pension charge represents the amounts payable by the Group to the fund in respect of the period. 

## **Liabilities and provisions** 

Liabilities are recognised when there is an obligation at the Balance sheet date as a result of a past event, it is probable that a transfer of economic benefit will be required in settlement, and the amount of the settlement can be estimated reliably. 

## **Fixed asset investments** 

Fixed asset investments are a form of financial instrument and are initially recognised at their transaction cost and subsequently measured at fair value at the Balance sheet date. Investment gains and losses, whether realised or unrealised, are combined and presented as ‘Gains/ (Losses) on investments’ in the Consolidated statement of financial activities. 

Investments in subsidiaries are valued at cost less provision for impairment. 

Liabilities are recognised at the amount that the Group anticipates it will pay to settle the debt or the amount it has received as advanced payments for the goods or services it must provide. Provisions are measured at the best estimate of the amounts required to settle the obligation. Where the effect of the time value of money is material, the provision is based on the present value of those amounts, discounted at the pre-tax discount rate that reflects the risks specific to the liability. The unwinding of the discount is recognised in the Consolidated statement of financial activities as a finance cost. 

## **Interest Receivable** 

## **Current asset investments** 

Interest on funds held on deposit is included when receivable and the amount can be measured reliably by the Group; this is normally upon notification of the interest paid or payable by the institution with whom the funds are deposited. 

Current asset investments are cash or cash equivalents with a maturity date of less than one year valued at fair value. 

## **Going concern** 

## **Debtors** 

Trade and other debtors are recognised at the settlement amount after any trade discount offered. Prepayments are valued at the amount prepaid net of any trade discounts due. 

## **Cash at bank and in hand** 

Cash at bank and in hand includes cash and short-term highly liquid investments with a short maturity of three months or less from the date of acquisition or opening of the deposit or similar account. 

The Trustees assess whether the use of going concern is appropriate i.e. whether there are any material uncertainties related to events or conditions that may cast significant doubt over the ability of the Group to continue as a going concern. The Trustees make this assessment in respect of a period of at least one year from the date of authorisation for issue of the financial statements and have concluded that the charity has adequate resources to continue in operational existence for the foreseeable future and there are no material uncertainties about the charity’s ability to continue as a going concern, thus they continue to adopt the going concern basis of accounting in preparing the financial statements. 

47 



Mesothelioma UK 

Notes to the Financial Statements for the period ended 31st March 2023 (continued) 

## **2. CRITICAL ACCOUNTING JUDGEMENTS AND KEY SOURCES OF ESTIMATION UNCERTAINTY** 

Estimates and judgements are continually evaluated and are based on historical experience and other factors, including expectations of future events that are believed to be reasonable under the circumstances. 

## **Critical accounting estimates and assumptions** 

## **Donated services and facilities** 

The Group has been donated the use of the premises they operate from. The fair value of the donated facility has been arrived at based on the amount the Group would pay in the open market for an alternative. This has been calculated on an estimated average rate per square foot. While this is considered a reasonably reliable approach there is some uncertainty due to multiple factors affecting the rental value of the property including the size, the age and demographical area. 

The Group makes estimates and assumptions concerning the future. The resulting accounting estimates and assumptions will, by definition, seldom equal the related actual results. The estimates and assumptions that have a significant risk of causing a material adjustment to the carrying amounts of assets and liabilities within the next financial year are discussed below. 

## **Useful economic lives of tangible assets** 

The annual depreciation charge for tangible fixed assets is sensitive to changes in the estimated useful economic lives and residual values of the assets. The useful economic lives and residual values are reassessed annually. They are amended when necessary to reflect current estimates, based on technological advancement, future investments, economic utilisation and the physical condition of the assets. See note 16 for the carrying amount of the fixture and fittings and computer equipment and note 1 for the useful economic lives for each class of assets. 

## **Residual legacies** 

There is some uncertainty in the value of residual legacies recognised due to the time lapse between when probate has been granted and the final distribution is made. 

48 



**Annual Report 2023** 

Notes to the Financial Statements for the period ended 31st March 2023 (continued) 

## **3. DONATIONS AND LEGACIES** 


**----- Start of picture text -----**<br>
2023 2022<br>£ £<br>Donations 578,351 677,068<br>Legacies 133,686 184,726<br>Grants 677,322 304,227<br>Donated services and facilities 25,000 12,907<br>1,414,359 1,178,928<br>**----- End of picture text -----**<br>


Donated services and facilities comprise of the use of the premises the Group operates from. The donation represents the deemed market rent of the property. 

Grants received, included in the above, are as follows: 


**----- Start of picture text -----**<br>
2023 2022<br>£ £<br>Armed Forces Covenant 27,732 -<br>Education and Skills Funding Agency 1,500 1,500<br>UK Government Covid Medical Research 109,644 72,823<br>Bristol-Myers Squibb Pharmaceutical 12,000 4,000<br>MCNS* 400,946 215,404<br>MAPS**Benevolent Trust 25,000 -<br>Football Family Ltd 500 500<br>SWASAG*** - 10,000<br>-<br>Mick May Memorial Fund 100,000<br>677,322 304,227<br>**----- End of picture text -----**<br>


* Mesothelioma Clinical Nurse Specialist 

** Medical and Professional Services ***South West Asbestos Support Awareness Group 

49 



Mesothelioma UK 

Notes to the Financial Statements for the period ended 31st March 2023 (continued) 

## **4. OTHER TRADING ACTIVITIES** 


**----- Start of picture text -----**<br>
2023 2022<br>£ £<br>Trading income 165,512 122,029<br>Shop income 12,152 11,760<br>177,664 133,789<br>**----- End of picture text -----**<br>


The trading income represents income from Mesothelioma UK commercial relationships which includes: 

- Commission from the UK National Asbestos Register 

- Income raised from members of Mesothelioma UK Trading Ltd’s legal panel, who make payment to Mesothelioma UK Trading Ltd, in return for the inclusion of their name and logo on our website and legal advice leaflet. Their logo is also included on the Mesothelioma Matters magazine, and they each have space for one article in one of the quarterly magazines per year. 

## **5. INVESTMENT INCOME** 


**----- Start of picture text -----**<br>
2023 2022<br>£ £<br>Deposit account interest 10,025 2,161<br>Dividends received 4,239 3,227<br>14,264 5,388<br>**----- End of picture text -----**<br>


## **6. OTHER INCOME** 

||**2023**<br>**£**|**2022**<br>**£**|
|---|---|---|
|Rental income|**4,170**|650|



50 



**Annual Report 2023** 

Notes to the Financial Statements for the period ended 31st March 2023 (continued) 

## **7. RAISING FUNDS** 

## **Raising donations and legacies** 


**----- Start of picture text -----**<br>
2023 2022<br>£ £<br>Staff costs 93,879 71,832<br>Will writing 2,675 4,260<br>Stripe and online giving fees 9,288 10,430<br>Christmas card purchases 1,884 3,015<br>Fundraising costs 27,670 13,967<br>Travel expenses 3,066 742<br>Charitable events 17,173 7,726<br>Website and social media 3,110 3,352<br>Print and design magazine 1,532 1,526<br>Online shop expenses 1,928 2,598<br>Finance manager - 486<br>UHL staff costs 49,376 50,616<br>-<br>Head of nursing 2,132<br>213,713 170,550<br>**----- End of picture text -----**<br>


## **Other trading expenses** 

||**2023**<br>**£**|**2022**<br>**£**|
|---|---|---|
|Administration expenses|**1,917**|948|



51 



Mesothelioma UK 

Notes to the Financial Statements for the period ended 31st March 2023 (continued) 

## **8. CHARITABLE ACTIVITIES COSTS** 


**----- Start of picture text -----**<br>
Direct costs Support costs Totals<br>(see note 9) (see note 10) £<br>£ £<br>-<br>Information expenses 76,865 76,865<br>Awareness costs 118,926 - 118,926<br>Research & audit costs 275,373 - 275,373<br>-<br>Patient support costs 887,956 887,956<br>-<br>Administration and operational costs 264,483 264,483<br>1,359,120 264,483 1,623,603<br>**----- End of picture text -----**<br>


52 



Annual Report 2023 

Notes to the Financial Statements for the period ended 31st March 2023 (continued) 

## **9. DIRECT COSTS OF CHARITABLE ACTIVITIES** 


**----- Start of picture text -----**<br>
2023 2022<br>£ £<br>Staff costs 185,964 91,884<br>Provision for nursing services 602,700 561,721<br>Nurses meetings 3,344 3,516<br>Website and social media 12,442 13,406<br>Patient support sundries and other support costs 6,198 6,747<br>Patient travel 8,595 13,333<br>Printing and design magazine 13,787 13,734<br>Project Wales 4,958 3,303<br>Research centre main award 169,125 164,295<br>Other research costs 879 1,071<br>Armed Forces project expenses 10,696 2,715<br>Information expenses 11,747 14,018<br>Patient carer day 10,722 4,676<br>-<br>Clinical trials app 6,000<br>Awareness costs 5,398 4,643<br>UHL staff costs 35,038 72,368<br>Finance manager - 486<br>Travel expenses 1,243 28<br>Benefit advisors 29,124 47,538<br>Team leaders 133,700 161,123<br>Mick May memorial expenditure 130 -<br>Research grants 73,404 19,168<br>-<br>Head of nursing 38,375<br>-<br>MCNS educational expenses 1,551<br>1,359,120 1,205,773<br>**----- End of picture text -----**<br>


## **10. SUPPORT COSTS** 

||**Other**<br>**£**|**Governance**<br>**£**|**costs**<br>**Totals**<br>**£**|
|---|---|---|---|
|Administration and operational costs|**257,283**|**7,200**|**264,483**|



53 



Mesothelioma UK 

Notes to the Financial Statements for the period ended 31st March 2023 (continued) 

Support costs, included in the above, are as follows: 


**----- Start of picture text -----**<br>
2023  2022<br>Administrational and  Administrational and<br>operational costs operational costs<br>£ £<br>Wages 129,965 66,446<br>Social security 8,507 4,210<br>Pensions 8,526 4,593<br>-<br>Other operating leases 2,495<br>Rates and water 10,371 3,000<br>Insurance 836 746<br>Telephone 3,943 4,427<br>Postage and stationery 2,091 3,680<br>Repairs and maintenance 1,290 2,844<br>Legal and professional fees 3,012 13,874<br>Storage - 742<br>Governance 1,581 4,281<br>Travel expenses 2,160 554<br>Investment manager costs 6,041 6,567<br>-<br>Finance manager 8,749<br>Educational courses - 300<br>UHL staff costs 8,244 15,989<br>Training 2,946 1,087<br>Subscriptions 4,039 4,882<br>IT support and other IT costs 17,970 14,223<br>CRM expenses 6,746 4,129<br>Marketing and adverts 3,678 2,176<br>Bank charges 630 788<br>Office expenses 2,264 4,083<br>-<br>Head of nursing 2,132<br>Rent 25,001 12,907<br>Depreciation of tangible fixed assets 5,310 3,233<br>Auditors’ remuneration 7,200 6,600<br>264,483 197,605<br>**----- End of picture text -----**<br>


54 



Annual Report 2023 

Notes to the Financial Statements for the period ended 31st March 2023 (continued) 

## **11. NET INCOME/(EXPENDITURE)** 

Net income/(expenditure) is stated after charging/(crediting): 


**----- Start of picture text -----**<br>
||||
|---|---|---|
|2023|2022|
|£|£|
|Depreciation - owned assets|5,309|3,233|
|-|
|Other operating leases|2,495|

**----- End of picture text -----**<br>


## **12. AUDITORS’ REMUNERATION** 


**----- Start of picture text -----**<br>
||||
|---|---|---|
|2023|2022|
|£|£|
|Fees payable to the group’s auditors for the audit of the|7,200|6,600|
|group’s financial statements|

**----- End of picture text -----**<br>


## **13. TRUSTEES’ REMUNERATION AND BENEFITS** 

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

## **Trustees’ expenses** 

There were no trustees’ expenses paid for the year ended 31 March 2023 nor for the year ended 31 March 2022. 

## **14. STAFF COSTS** 

## **Remuneration of key management personnel** 

Key management personnel are deemed to be those having authority and responsibility, delegated to them by the trustees for planning, directing and controlling the activities of the charity. The total employee benefits of the key management personnel of the charity amounted to £115,617 (2022: 55,902). 

The average monthly number of employees during the year was as follows: 


**----- Start of picture text -----**<br>
||||
|---|---|---|
|2023|2022|
|£|£|
|Support staff|17|12|

**----- End of picture text -----**<br>


No employees received emoluments in excess of £60,000. 

55 



Mesothelioma UK 

Notes to the Financial Statements for the period ended 31st March 2023 (continued) 

## **15. COMPARATIVES FOR THE CONSOLIDATED STATEMENT OF FINANCIAL ACTIVITIES - 31 MARCH 2022** 


**----- Start of picture text -----**<br>
Unrestricted fund Restricted fund Total funds<br>£ £ £<br>INCOME AND ENDOWMENTS FROM:<br>Donations and legacies 786,229 392,699 1,178,928<br>-<br>Other trading activities 133,789 133,789<br>Investment income 5,388 - 5,388<br>Other income 650 - 650<br>Total 926,056 392,699 1,318,755<br>EXPENDITURE ON:<br>-<br>Raising funds 171,498 171,498<br>Charitable activities<br>-<br>Information expenses 69,126 69,126<br>Awareness costs 53,156 1,354 54,510<br>Research & audit costs 133,855 82,006 215,861<br>Patient support costs 607,813 258,463 866,276<br>-<br>Administration and operational costs 197,605 197,605<br>Total 1,233,053 341,823 1,574,876<br>-<br>Net gains on investments 3,436 3,436<br>NET INCOME/(EXPENDITURE) (303,561) 50,876 (252,685)<br>Transfers between funds (103) 103 -<br>Net movement in funds (303,664) 50,979 (252,685)<br>RECONCILIATION OF FUNDS<br>Total funds brought forward 1,558,772 87,485 1,646,257<br>TOTAL FUNDS CARRIED FORWARD 1,255,108 138,464 1,393,572<br>**----- End of picture text -----**<br>


56 



Annual Report 2023 

Notes to the Financial Statements for the period ended 31st March 2023 (continued) 

## **16. TANGIBLE FIXED ASSETS – GROUP** 


**----- Start of picture text -----**<br>
Fixtures and fittings Computer equipment Totals<br>£ £ £<br>COST<br>At 1 April 2022 3,787 24,257 28,044<br>Additions - 5,724 5,724<br>At 31 March 2023 3,787 29,981 33,768<br>DEPRECIATION<br>At 1 April 2022 2,622 11,980 14,602<br>Charge for year 174 5,135 5,309<br>At 31 March 2023 2,796 17,115 19,911<br>NET BOOK VALUE<br>At 31 March 2023 991 12,866 13,857<br>At 31 March 2022 1,165 12,277 13,442<br>TANGIBLE FIXED ASSETS – CHARITY<br>COST<br>At 1 April 2022 3,787 24,257 28,044<br>Additions - 5,724 5,724<br>At 31 March 2023 3,787 29,981 33,768<br>DEPRECIATION<br>At 1 April 2022 2,622 11,980 14,602<br>Charge for year 174 5,135 5,309<br>At 31 March 2023 2,796 17,115 19,911<br>NET BOOK VALUE<br>At 31 March 2023 991 12,866 13,857<br>At 31 March 2022 1,165 12,277 13,442<br>**----- End of picture text -----**<br>


57 



Mesothelioma UK 

Notes to the Financial Statements for the period ended 31st March 2023 (continued) 

## **17. FIXED ASSET INVESTMENTS – GROUP** 


**----- Start of picture text -----**<br>
Shares in group  Listed  Cash and settlements  Totals<br>undertakings investments  pending  £<br>£ £ £<br>MARKET VALUE<br>-<br>At 1 April 2022 772,020 772,020<br>Additions 169,220 20,230 189,450<br>Disposals (169,545) (5,716) (175,261)<br>Revaluations (54,589) - (54,589)<br>At 31 March 2023 717,106 14,514 731,620<br>NET BOOK VALUE<br>At 31 March 2023 717,106 14,514 731,620<br>At 31 March 2022 772,020 - 772,020<br>FIXED ASSET INVESTMENTS -<br>CHARITY<br>MARKET VALUE<br>At 1 April 2022 1 772,020 - 772,021<br>Additions - 169,220 20,230 189,450<br>-<br>Disposals (169,545) (5,716) (175,261)<br>Revaluations - (54,589) - (54,589)<br>At 31 March 2023 1 717,106 14,514 731,621<br>NET BOOK VALUE<br>At 31 March 2023 1 717,106 14,514 731,621<br>At 31 March 2022 1 772,020 - 772,021<br>**----- End of picture text -----**<br>


58 



Annual Report 2023 

Notes to the Financial Statements for the period ended 31st March 2023 (continued) 

## **17. FIXED ASSET INVESTMENTS (Cont.)** 

Cost or valuation at 31 March 2023 is represented by: 


**----- Start of picture text -----**<br>
Shares in group  Listed investments Cash and settlement pending Totals<br>undertakings £ £ £<br>£<br>Valuation in 2023 - 717,106 14,514 731,620<br>Cost 1 - - 1<br>1 717,106 14,514 731,621<br>**----- End of picture text -----**<br>


The charity’s investments at the balance sheet date in the share capital of companies include the following: 

## **Mesothelioma UK Trading Limited** 

Registered office: England and Wales Nature of business: Sponsorship and advertising sales 

Class of share:  Ordinary % holding: 100 

||**31.3.23**<br>**£**|31.3.22<br>£|
|---|---|---|
|**Aggregate capital and reserves**|**1**|1|
|Proft for the year|**163,595**|121,081|



## **18. DEBTORS: AMOUNTS FALLING DUE WITHIN ONE YEAR** 


**----- Start of picture text -----**<br>
Group 2023 Group 2022 Charity 2023 Charity 2022<br>£ £ £ £<br>Trade debtors 35,735 30,175 35,735 30,175<br>Other debtors 6,136 16,643 6,136 16,643<br>Prepayments and  80,735 149,769 80,735 142,244<br>accrued income<br>122,606 196,587 122,606 189,062<br>**----- End of picture text -----**<br>


59 



Mesothelioma UK 

Notes to the Financial Statements for the period ended 31st March 2023 (continued) 

## **19. CURRENT ASSET INVESTMENTS** 

||**Group 2023**<br>**£**|Group 2022<br>£|**Charity 2023**<br>**£**|Charity 2022<br>£|
|---|---|---|---|---|
|**Cash on deposit**|**101,638**|189,000|**101,638**|189,000|



Current asset investments consists of fixed rate deposits with high street banks and building societies. 

## **20. CREDITORS: AMOUNTS FALLING DUE WITHIN ONE YEAR** 


**----- Start of picture text -----**<br>
Group 2023 Group 2022 Charity 2023 Charity 2022<br>£ £ £ £<br>Trade creditors 60,920 72,375 60,920 72,375<br>- -<br>Amounts owed to group undertakings 9,293 6,223<br>Social security and other taxes 16,079 11,984 8,795 6,637<br>Other creditors 4,387 13,420 4,387 13,420<br>Accruals and deferred income 114,509 102,136 112,501 93,736<br>195,895 199,915 195,896 192,391<br>**----- End of picture text -----**<br>


Within accruals and deferred income are funds received in advance from fundraising challenges yet to take place at the year end. The deferred income is £12,213 (2022: £11,672). The events are expected to take place in 2023/24. 

## **21. LEASING AGREEMENTS** 

Minimum lease payments under non-cancellable operating leases fall due as follows: 


**----- Start of picture text -----**<br>
Group 2023 Group 2022 Charity 2023 Charity 2022<br>£ £ £ £<br>Within one year 25,000 25,000 25,000 25,000<br>Between one and five years 100,000 100,000 100,000 100,000<br>In more than five years 87,093 112,093 87,093 112,093<br>212,093 237,093 212,093 237,093<br>**----- End of picture text -----**<br>


60 



Annual Report 2023 

Notes to the Financial Statements for the period ended 31st March 2023 (continued) 

## **22. ANALYSIS OF NET ASSETS BETWEEN FUNDS** 


**----- Start of picture text -----**<br>
Unrestricted funds Restricted funds Total funds 2023 Total funds 2022<br>£ £ £ £<br>Fixed assets 13,857 - 13,857 13,442<br>Investments 731,621 - 731,621 772,021<br>Current assets 236,122 324,502 560,624 800,500<br>Current liabilities (195,896) - (195,896) (192,391)<br>785,704 324,502 1,110,206 1,393,572<br>**----- End of picture text -----**<br>


## **23. MOVEMENT IN FUNDS** 


**----- Start of picture text -----**<br>
At 1.4.22 Net At 31.3.23<br>£ movement in funds £<br>£<br>Unrestricted funds<br>General fund 1,255,108 (469,404) 785,704<br>Restricted funds -<br>Grants and donations for nurses 77,847 63,429 141,276<br>-<br>Armed Forces project 1,474 1,474<br>Project NI 24,557 11,157 35,714<br>Donations for other restricted projects 36,060 109,978 146,038<br>138,464 186,038 324,502<br>Total funds 1,393,572 (283,366) 1,110,206<br>**----- End of picture text -----**<br>


61 



Mesothelioma UK 

Notes to the Financial Statements for the period ended 31st March 2023 (continued) 

## **23. MOVEMENT IN FUNDS (Cont.)** 

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


**----- Start of picture text -----**<br>
Incoming  Resources  Gains and  Movement in<br>resources expended losses  funds<br>£ £ £ £<br>Unrestricted funds<br>General fund 1,028,584 (1,443,398) (54,590) (469,404)<br>Restricted funds<br>Grants and donations for nurses 416,866 (353,437) - 63,429<br>-<br>Armed Forces project 27,732 (26,258) 1,474<br>- -<br>Project NI 11,157 11,157<br>Grants and donations for research 3,460 (3,460) - -<br>-<br>Donations for other restricted projects 126,717 (16,739) 109,978<br>-<br>585,932 (399,894) 186,038<br>Total funds 1,614,516 (1,843,292) (54,590) (283,366)<br>**----- End of picture text -----**<br>


62 



Annual Report 2023 

Notes to the Financial Statements for the period ended 31st March 2023 (continued) 

## **23. MOVEMENT IN FUNDS (Cont.)** 

## **Comparatives for movement in funds** 


**----- Start of picture text -----**<br>
At 1.4.21 Net movement  Transfers between  At 31.3.22<br>£ in funds funds  £<br>£ £<br>Unrestricted funds<br>General fund 1,558,772 (303,561) (103) 1,255,108<br>Restricted funds<br>Grants and donations for nurses 61,468 16,276 103 77,847<br>- -<br>Armed Forces project 1,354 (1,354)<br>- -<br>Bristol Myers Squibb 2,106 (2,106)<br>- -<br>Project NI 24,557 24,557<br>-<br>Donations for other restricted projects 22,557 13,503 36,060<br>87,485 50,876 103 138,464<br>Total funds 1,646,257 (252,685) - 1,393,572<br>**----- End of picture text -----**<br>


Comparative net movement in funds, included in the above are as follows: 


**----- Start of picture text -----**<br>
At 1.4.21 Net movement  Transfers between  At 31.3.22<br>£ in funds funds  £<br>£ £<br>Unrestricted funds<br>General fund 925,108 (1,232,105) 3,436 (303,561)<br>Restricted funds<br>Grants and donations for nurses 264,948 (248,672) - 16,276<br>- -<br>Armed Forces project (1,354) (1,354)<br>- -<br>Bristol Myers Squibb (2,106) (2,106)<br>- -<br>Project NI 24,557 24,557<br>Grants and donations for research 82,006 (82,006) - -<br>-<br>Donations for other restricted projects 21,188 (7,685) 13,503<br>-<br>392,699 (341,823) 50,876<br>Total funds 1,317,807 (1,573,928) 3,436 (252,685)<br>**----- End of picture text -----**<br>


Unrestricted funds are available to be spent for any purposes of the charity. 

63 



Mesothelioma UK 

Notes to the Financial Statements for the period ended 31st March 2023 (continued) 

## **23. MOVEMENT IN FUNDS (Cont.)** 

## **Purposes of restricted funds** 

## **Grants and donations for nurses** 

Various grants and donations were received during the year, including one from RS Oncology to be utilised in 2023/2024, towards the payment of grants to trusts for the provision of mesothelioma clinical nurse specialists. 

## **Project NI** 

These are ring-fenced donations to enable Mesothelioma UK to expand its services to include Northern Ireland. The project is continuing and will commence when sufficient funds have been received. 

## **Grants for other restricted projects** 

This includes commissioning the construction of an armed services memorial to be placed in National Memorial Arboretum in Staffordshire. Other donations were received and restricted for expenditure on patient travel expenses and a nurse education fund. 

## **24. EMPLOYEE BENEFIT OBLIGATIONS** 

The charity operates a defined contribution pension scheme. The assets of the scheme are held separately from those of the Group in an independently administered fund. The pension cost charge represents contributions payable by the Group to the fund. At the balance sheet date £3,053 (2022: £4,097) was payable to the fund and is included in creditors. 

## **Project Wales** 

These are ring-fenced donations to enable Mesothelioma UK to expand its services in Wales, including the provision of a mesothelioma clinical nurse specialist. 

## **Mick May Memorial Fund** 

The majority of the funds were from a grant from the Schroder Foundation. This is for use under the ‘Improving Outcomes and Experience’ pillar, to ensure patients have equitable access to the best treatment, care, information and support including helping to build a comprehensive multi-disciplinary team approach and evidenced based care pathways and guidelines which are fundamental to achieving improved outcomes and experiences. 

## **25. CONTINGENT ASSET** 

The Group has been notified of an entitlement to legacies of which the Group is unable to measure reliably the value of amounts due and therefore no provision has been made in the accounts. 

## **Armed Forces Grant** 

This is monies received from the Armed Forces covenant fund trust to help fund our armed forces project. The objectives of the project are to: 

- Quantify the incidence and impact of mesothelioma amongst our armed forces veterans 

- Understand the experience of those affected 

- Raise awareness about the presence and dangers of asbestos 

- Improve healthcare professional understanding and ability to support veterans and their families 

64 



**Annual Report 2023** 

Notes to the Financial Statements for the period ended 31st March 2023 (continued) 

## **26. RELATED PARTY DISCLOSURES** 

A L Coates is a Trustee of the parent charity and a partner of Irwin Mitchell Solicitors. During the period, £34,294 (2022: £26,857) was receivable by the group from Irwin Mitchell Solicitors being £24,000 (2022: £15,000) sponsorship income plus £12,970 (2022: £11,857) from fundraising events and donations. Also, during the period, the group acquired will writing and other professional services from Irwin Mitchell Solicitors at a cost of £2,676 (2022: £11,388). 

H Childs is a Trustee of the parent charity and a partner of Royds Withy King Solicitors. During the period, £14,600 (2022: £17,982) was receivable by the group from Royds Withy King Solicitors being £12,600 (2022: £15,000) sponsorship income plus £2,000 (2022: £2,982) in donations. 

D McKinley is a Trustee of the parent charity and Senior Executive Officer of the British Thoracic Oncology Group (BTOG). During the period, BTOG paid rent to the parent charity of £4,170 (2022: £650) and received amounts for recharged expenses of £1,312 (2022: £828). 

All transactions with related parties are at arms length and in accordance with the charity’s objectives. 

## **27. CONTRIBUTIONS OF VOLUNTEERS AND SUPPORTERS** 

The charity is grateful for the unstinting efforts of volunteer fundraiser’s who take part in a wide range of sponsored events and other fundraising activities. The vast majority of income comes from private individuals making donations, participating in sponsored events, or leaving legacies. 

65 



**Annual Report 2023** 

Mesothelioma UK could not do any of this without the ongoing support of our fundraisers, donors, corporate partners and legacies. Please, please continue to do all you do for the charity, it is your contribution that enables us to reach out and to do all we can to help those living with mesothelioma. 



Annual Report 2023 


Mesothelioma Charitable Incorporated Organisation 

Freephone: 0800 169 2409 Email: info@mesothelioma.uk.com www.mesothelioma.uk.com 

Registered Charity Number 1177039