2024-03-31-accounts

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Annual Report 2023-24

Charity report and financials for Mesothelioma UK for period ending 31 March 2024.

Mesothelioma UK Registered Charity Number: 1177039

Registered Address:

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

Mesothelioma UK

Contents
Foreword from the CEO	1
Objectives & Activities	2
How We Work	3
Improving Outcomes & Experiences	4
Research	18
Information	22
Awareness	24
Sustainability & Fundraising	27
Trustees Report	39
Financial Overview	40
Looking Forward	42

Annual Report 2024

Foreword from the CEO

As Mesothelioma UK enters the final year of our current threeyear strategy, we are optimistic about the year ahead and I would like to congratulate the whole Mesothelioma UK team, the board, nurses, operations team, our supporters, partners, volunteers and ambassadors.

We have all focused on the charity and done our very best to make Mesothelioma UK even better than it was before. We have made sure that the charity is not only able to sustain current services, but also strengthened our ability to grow and reach more people in the years ahead. The whole team has pulled together, evaluated, reflected, planned, tried and tested, made difficult decisions and generally worked extremely hard.

I am confident we have emerged a stronger, more focused and united team with a shared vision completely dedicated to the charity’s cause.

Whilst completing a ‘root and branch’ review of the charity’s income generating methods, processes, and skills, we have still met the needs of more people living with mesothelioma than previously. In addition, the Mesothelioma UK Research Centre Sheffield has continued to publish and have impact across awareness, prevention, and service development. Several of our nursing team have embarked on their own research journeys, fully supported by our research centre’s academic team. It has proven to be a harmonious ‘bench to bedside’ approach to patient focused research.

The charity has had significant impact in raising awareness and asbestos exposure prevention. Much of this has been made possible through individuals generously sharing their stories, maximising available communication channels and through partnership working with other groups and individuals. It really feels like we could be on the cusp of some radical changes in asbestos management.

This year it has become apparent that Mesothelioma UK’s ability to provide specialist support and services for people and families living with mesothelioma is recognised beyond the UK. Other nations have reached

out, keen to replicate our approach, our methods and services. It is an honour to share what we can and we are grateful to everyone who has helped shape and support the charity over the years.

There is an air of optimism as we enter a new financial year. Thank you to all our partner groups and organisations, our generous donors and supporters. Mesothelioma UK could not do any of this without you; working together we make a difference every day.

Thank you.

Liz Darlison

CEO, Mesothelioma UK

Mesothelioma UK

Objectives & Activities

Mesothelioma UK is the 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 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 we registered as an independent charity, and in 2018 registered as a Charitable Incorporated Organisation before reaching £1 million in charitable activity by 2020.

The 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, and 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.

Annual Report 2024

~~How We~~ How We Work Work Five key pillars represent the scope and aims of the charity: Improving Outcomes & Experiences, Research, Information, Awareness, and Sustainability & Fundraising. Our 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

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. This includes a freephone Support Line, specialist benefits advice, travel grants 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.

France. Twenty-one members of our nursing team attended the conference, and we were grateful to our legal panel for generously donating to our education fund, which allowed us to provide some financial assistance to many of the nurses who otherwise would have not been able to attend. The conference, which was held over four days, included the latest updates in trials and treatments from across the world. The Mesothelioma UK team had 14 posters displayed at the conference, 11 of which were produced by nurses showcasing their role, development and innovation in patient care. Several members of the team delivered oral presentations on subjects such as access and barriers to clinical trials, and nurse-led pleural services.

Our Nurses

This year has been another challenging time in healthcare as the NHS continues to recover from the pandemic amid increased demand for services and unprecedented industrial action across its workforce.

Our nurses have continued to meet these challenges with their usual vigour, regularly going above and beyond expectations to ensure the highest standard of care for patients.

As a charity we have a continued challenge to provide our services within the current economic climate. Therefore, it has not been possible to grow the team in numbers during this period. However, the nurses all continue to grow in knowledge and experience within their roles, further cementing their position as expert mesothelioma nurses.

In addition to iMig, our nurses have also delivered posters and presentations to audiences at esteemed conferences such as the British Thoracic Oncology Group, Lung Cancer Nursing UK and the World Conference on Lung Cancer in Singapore, not to mention organising and chairing numerous local educational events across the UK. As always, the nursing team have maintained a strong presence across their communities at support groups, social and fundraising events, and of course Action Mesothelioma Day.

We continue to strive to provide expert mesothelioma nursing in all four nations. Our nurses in Scotland are core members of the successful Scottish Mesothelioma Network which includes a national MultiDisciplinary Team (MDT) and a coordinated approach to care. Project Cymru continued to bring professionals together to work towards equity of care across Wales, with an inaugural education event held in October. Although our Project Lead retired during this year, we ensured patients in Wales were not disadvantaged and we were pleased to welcome a new nurse in Wales. In Northern Ireland we are working closely with NHS colleagues to establish the first mesothelioma nurse posts. Over the next year, we hope to be able to extend our reach to more nurses across the UK with the launch of our nursing network.

As we look towards the next 12 months, I would like to thank our nurses for their energy, enthusiasm, and dedication to improving the lives of all those affected by mesothelioma, and look forward to supporting them in their forthcoming achievements.

June 2023 saw the biannual International Mesothelioma Interest Group (iMig) Conference take place in Lille,

Leah Taylor Head of Nursing

Annual Report 2024

Nursing Posts

During the year we said warm welcomes and sad farewells to some of our nurses.

Jo Hargrave was our Mesothelioma UK nurse based at St Bartholomew’s Hospital in London. Jo was a key member of the nursing team, a fount of all knowledge and go-to person for surgical advice. After six years Jo felt it was time for a new challenge and to fully focus on her passion for thoracic surgery.

Sarah Morgan was our Project Lead for Wales based at Hywel Dda Health Board. Sarah retired in November after seven years with the charity and a long and distinguished nursing career, leading the development of specialised mesothelioma services in Wales and championing for equity of access to care and treatment across the country.

Facts & Figures

Total number of new patients

1,104

Episodes of care* provided by our Mesothelioma UK nurses for both new and existing mesothelioma patients

Support and advice on topics including symptoms, pain, treatment options, clinical trials, psychological support

29,821

Total number of support groups attended*

Lucy Johnson was our Mesothelioma Clinical Nurse Specialist in Portsmouth. In addition to this role Lucy was also a Pleural Clinical Nurse Specialist. Pleural medicine is an exciting emerging specialty and Lucy decided to focus on her pleural role to ensure that all patients requiring this service could benefit from specialist care.

We wish Jo, Sarah and Lucy well for their futures and thank them for their dedication and enthusiasm to improving the care of people affected by mesothelioma.

Also in Wales, we welcomed Becky Weston-Thomas to the team. Becky is based at Aneurin Bevan Health Board in Newport. This post is being generously funded by Macmillan Cancer Support for the first two years. In addition to her mesothelioma role, Becky is also a Lung Cancer Clinical Nurse Specialist.

Many of our partners have generously funded some of our nursing posts, and are also a great source of support to our whole team. Thank you to all our partners, without you and your donors and fundraisers we would not be able to make such an enormous impact on the lives of mesothelioma patients across the UK.

Groups held locally or virtually where patients and families can meet our nurses, ask questions, and feel supported

384

Number of MDT* meetings attended

Multi-Disciplinary Team - group of healthcare professionals working together to make decisions on the best course of care for patients

944

Legal panel:

  - RWK Goodman

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

Mesothelioma UK

Case Study

Anne Moylan

Former Mesothelioma UK Team Leader and CNS, Portsmouth

Anne joined the Mesothelioma UK Clinical Nurse Specialist (CNS) team as the fourth CNS in September 2014, bringing with her a wealth of knowledge and experience in lung cancer nursing.

Anne quickly established herself as a senior member of the team being appointed to the post of Team Leader for the South of England in 2016, and with additional funding from HASAG brought the post up to full time. Anne’s clinical activity was always at the heart of her role, maintaining a clinical caseload and establishing a nurseled clinic for mesothelioma patients within her Trust. As a Team Leader, Anne was a role model providing clinical leadership and mentorship to the nurses within the South as well as supporting the wider national Mesothelioma UK CNS Team and the Head of Nursing.

With a base in Portsmouth, Anne was particularly eager and well placed to ensure patients diagnosed with mesothelioma who were exposed in the Armed Forces had access to specialist support. Anne became Senior Nurse for the Supporting Our Armed Forces (SOAF) Project team and was engaged with the project until leaving her Mesothelioma UK CNS post in May 2024.

During her time on the project, Anne was involved in several initiatives including providing support and guidance for the Lead Nurse for Armed Forces, reviewing and developing patient information, signing the Armed Forces Covenant, and securing numerous grants. The Armed Forces work has been well recognised with Mesothelioma UK being awarded the prestigious Health Services Journal Military and Civilian Partnership Award in 2020. Anne herself was recognised for her work within her own Trust, being awarded Portsmouth University Hospitals NHS Trust’s first Veteran Challenge Coin, launched to recognise those who have gone over and above in their duties in relation to members of the Armed Forces community.

One of Anne’s most notable achievements is the establishment of a permanent memorial at the National Memorial Arboretum in Staffordshire in honour of those who have served in the Armed Forces and have been affected by mesothelioma. The memorial depicts the building blocks of life, engraved with information about mesothelioma, asbestos and the Armed Forces.

During the 10 years Anne was in post, she delivered numerous presentations to local, national and international audiences. Anne also presented many posters at conferences around the world and sought to ensure the mesothelioma nursing voice was represented as far as possible. In spring 2024 Anne decided the time was right to embrace some new challenges in her career. Whilst she will be missed by the Mesothelioma UK CNS team her leadership and professionalism has shaped the team to what it is today, and her legacy will have a lasting impact.

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Anne with Johnny Mercer MP in support of the Armed Forces
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Highlight on Wales

Project Cymru commenced as a three-year initiative in 2020, with the ambition being to enhance mesothelioma services across Wales and bring together a countrywide network of expertise.

Background

There are approximately 100 diagnoses of mesothelioma per year. Work undertaken early in the project highlighted inequity of access to support and information. Wales is a predominantly rural nation which can pose challenges for patients with a rare disease to access specialist care and support.

Network Cymru

In 2022 the Welsh Health Specialised Services Committee agreed funding for commissioned mesothelioma services in Wales, to include a single multidisciplinary team. Our Project Cymru Lead CNS was integral to developing the service specification, national optimal pathway and quality performance indicators to underpin and benchmark the services. Progress in developing commissioned services has been slow but despite this, work has continued to bring together the wider mesothelioma community.

Project Cymru was extended for six months which saw the inaugural Wales Professionals Education event take place with over 70 attendees from healthcare, legal and voluntary sectors. The event was very well received although low attendance from some areas in Wales confirms the need to offer hybrid events due to distance needed to travel. Due to retirement there was no dedicated mesothelioma CNS in post. Funding support was obtained from Macmillan Cancer Support to establish two CNS posts in Wales, which will be funded by Macmillan for the first two years and Mesothelioma UK thereafter. Becky Weston-Thomas from Anuerin Bevan Health Board was appointed in December. Below she reflects on her first six months in post.

Mesothelioma UK

Highlight on Wales

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Four key pillars of Mesothelioma Network Cymru
National National
Mesothelioma Mesothelioma
CNS team Specialist MDT
National
Advocacy,
Guidelines,
Education,
Awareness Research, Data
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“So far, I have found the role very rewarding, and it is vastly different from my other role as a lung cancer nurse. I have enjoyed throwing myself into the role and I am looking forward to the year ahead. To get the most out of the role you need to be very organised and selfdriven, which suits me very well. I have enjoyed making the role my own and this role has allowed me to carve my way into the mesothelioma world in Wales by helping patients and professionals. I do love that I can organise my workload and caseload independently so that I can work autonomously across Wales.

Mesothelioma UK is a great organisation as it facilitates this type of working, with the added benefit of dipping into peer support and the additional support that Mesothelioma UK offers. I am just over six months into the role now and I must say I have been loving it. Hopefully this is the start of great things with me and Mesothelioma UK and my aim is to continue to support both patients and professionals from across Wales.”

Key

CNS Clinical Nurse Specialist MDT MultiDisciplinary Team WPG Welsh Pleural Group WTOG Welsh Thoracic Oncology Group DHCW Digital Health and Care Wales AWMGS All Wales Medical Genomics Service WHSSC Welsh Health Specialised Services Committee

Moving forward

Although Project Cymru has now concluded we will continue our work in Wales. We are working with our partners to establish a second mesothelioma CNS post, a further education event is planned to take place in September 2024 and we will continue to support colleagues from across Wales to work towards the goal of establishing a countrywide mesothelioma multidisciplinary team and improve access to specialist care, support, treatment and trials.

Becky Weston-Thomas Mesothelioma UK CNS

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Highlight on Northern Ireland

Project Northern Ireland was launched in 2023 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.

Since the launch of the project we have been working closely with colleagues from Health and Social Care Northern Ireland, Macmillan Cancer Support and local clinicians to progress plans for developing mesothelioma services including the first CNS post.

It is anticipated the specialist nurse post will be based in Belfast but with a Northern Ireland wide remit to ensure all those diagnosed have equitable access to mesothelioma expertise. One of the first tasks of the specialist nurse will be to explore support networks and information sources that already exist, identify any gaps in provision and look at strategies to tackle these.

Due to the link with asbestos it is essential patients with mesothelioma have access to specialist legal advice and we were keen to ensure our legal panel contains experts from Northern Ireland.

The Rodgers Family

The Rodgers family from Northern Ireland first reached out to us in January 2022, following the heartbreaking loss of their father and husband, Tony. Since then, they have worked tirelessly to fundraise for Project Northern Ireland, becoming a key part of its success.

Thanks to the Rodgers family’s dedication, Project Northern Ireland has continued to thrive. In September 2023, they held a line dancing event, raising £2,300 , and another family member organised a raffle at their gymnastics club, contributing an additional £1,000 . Through their incredible efforts, a total of £39,073.33 has been raised in just two years.

We extend our heartfelt thanks to the Rodgers family, not only for their remarkable fundraising but for being such an inspiring and committed partner in this project. We look forward to continuing to make progress in Northern Ireland with their invaluable support.

Mesothelioma UK

Highlight on Scotland

Scotland has one of the highest rates of mesothelioma in the world, significantly surpassing the global average. While still a rare cancer, the incidence has increased exponentially since the early 1900s and is projected to continue to rise over the next two decades, a legacy of the extensive use of asbestos in heavy industry and its presence in public buildings across the country.

In 2019, the Scottish Mesothelioma Network (SMN) was launched in partnership with Macmillan Cancer Support, Mesothelioma UK and NHS Scotland with the aim of transforming care for those in Scotland affected by mesothelioma. As of April 2022, it has secured funding from the Scottish Government and moved into the Scottish Cancer Network. Bringing together specialist healthcare professionals, researchers and charity support organisations from across the country, the overall aim of the SMN is sustainable delivery of equitable services to all patients with mesothelioma in Scotland regardless of geographical location. This extends to internationally benchmarked, high quality clinical care, information and support, and access to potentially life-changing clinical trials.

Network staff, based in Glasgow, Aberdeen, Edinburgh, Dundee and Inverness attend a virtual MultiDisciplinary Team (MDT) meeting every week to present and discuss new and known patients. Clear, high-quality management plans and clinical trial information is fed back to local sites the same day. This approach aims to speed diagnosis and treatment for patients affected by mesothelioma no matter where they live in the country, provide national expert advice, and ensure optimal care is delivered as close to home as possible. The MDT also provides a forum for clinical teams to share expertise and gather mesothelioma specific patient information which can be used to audit the care provided. The second Quality Performance Indicator (QPI) Report covering calendar year 2022 was published at the end of 2023 and can be viewed on the Scottish Mesothelioma Network website.

Over the past year, the network team has continued to develop their relationships with acute services and charity support organisations, to ensure that patients and their families are being offered the most up to date legal advice and welfare benefits as well as emotional and practical support. The work of the network is significantly enhanced through collaborative working with Mesothelioma UK, Macmillan Cancer Support, Maggie’s Cancer Care and our associated asbestos charities, Action on Asbestos, Clydebank Asbestos Group and Asbestos Action.

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CNS Team
Inverness
Aberdeen
Dundee
Glasgow Edinburgh
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Improving Services

There are five Mesothelioma UK Clinical Nurse Specialists (CNS) across Scotland, one in each of the health board regions:

Carolyn MacRae, Mesothelioma UK CNS and Team Lead for Scotland, based at Queen Elizabeth University Hospital, Glasgow
Susan Smyth, Mesothelioma UK CNS, based at Ninewells Hospital, Dundee
Tracy Petrie, Mesothelioma UK CNS, based at Aberdeen Royal Infirmary, Aberdeen
Lynne Hunter, Mesothelioma UK CNS, based at Western General Hospital, Edinburgh
Jenn Latham, Mesothelioma UK CNS (affiliated post), based at Raigmore Hospital, Inverness

CNSs remain an integral part of the network, possessing specialist knowledge, skills, competencies and experience. They play a key role within the multidisciplinary teams to plan and deliver care and services that aim to meet the unique, complex needs of patients diagnosed with mesothelioma.

Network Goals and Developments

Diagnostics

Local anaesthetic thoracoscopy (LAT) is considered the ideal tool for mesothelioma diagnosis, allowing high quality biopsies and drainage of fluid (pleural effusion) at the same time if needed. The SMN has continued to work to improve local LAT services. Raigmore Hospital in Inverness has been able to set up their service, joining Queen Elizabeth University Hospital in Glasgow, Annual Report 2024 Ninewells Hospital in Dundee, Aberdeen Royal Infirmary, and Western General Hospital in Edinburgh.

Treatment Advances

On 26 October 2023, the National Cancer Medicines Advisory Group (NCMAG) issued approval for the offlabel use of single agent Nivolumab in NHS Scotland in the second-or-subsequent line setting for pleural or peritoneal mesothelioma in those who have progressed following platinum-based chemotherapy.

Use of Nivolumab in this setting, proven in the phase III CONFIRM study reported by Fennell et al in 2021, demonstrated statistically significant longer progressionfree survival (3.0 months v 1.8 months, HR 0.67, p=0.0012) and overall survival (10.2 months v 6.9 months, HR 0.69, p=0.009) when compared to placebo.

Having the ability to offer Nivolumab is an opportunity to offer for the very first time proven life-extending treatment in this setting, and a new standard of care that will offer hope and positivity to those in Scotland affected by this devastating disease.

Clinical Trials and Research

Access to clinical trials is granted to all Scottish patients regardless of geographical location (assuming eligible as per trial specific inclusion/exclusion criteria). Where travel may incur costs, grants can be sought to cover them. The CNS team plays a key role in identifying suitable patients, advocating for them, and supporting them throughout the trial process.

Current trials/research opportunities across Scotland include:

MITOPE
EXTRA-Meso (EXercise TheRApy in Mesothelioma) feasibility study
Meso-ORIGINS
ASSESS-Meso

Mesothelioma UK

Support Group

Patient Support & Information

Information Packs

The network has continued to offer patient information folders to all patients diagnosed with mesothelioma. The pack can be supplemented as per patient need and contains nationally agreed, standardised information including a mesothelioma patient information booklet, local asbestos charity information and contact details, Mesothelioma UK care record, Mesothelioma UK keeping-in-touch card and clinical trials app details, an invitation to our national support group and local Mesothelioma CNS contact details.

A monthly online support group facilitated by Maggie’s Highland remains available to anyone across the country directly or indirectly affected by a diagnosis of mesothelioma. Each of the Scottish CNS’s attend in rotation to support the Maggie’s team. The groups are patient led and topics of discussion have included diagnostic pathways, treatment and trials, symptoms and symptom control.

Attendees’ feedback to the Maggie’s team regarding the benefits of the group has included:

Meeting others with similar experiences
Up-to-date information on treatments and symptom advice/management
Access to a Clinical Nurse Specialist to answer any questions
Sharing knowledge and practical tips
Gaining a sense of control

To offer equitable information and support to patients nationally, these packs are offered to Lung Cancer CNS teams across every health board region to distribute as appropriate to those patients who are not attending a hospital trust with a dedicated Mesothelioma UK CNS present.

The content of the pack is reviewed on a regular basis to ensure it is kept up-to-date and relevant.

Annual Report 2024

Sharing Knowledge and Expertise

Network Newsletter

A network newsletter has been created to help raise awareness and share all the news and developments in relation to mesothelioma across Scotland and the SMN itself. Primarily aimed at healthcare professionals and support agencies with a special interest in mesothelioma, it is also sent to all the Scottish Lung Cancer CNSs (via the Scottish Lung Cancer CNS Forum) and is available to patients and their families as appropriate. The current issue along with a back catalogue can be viewed on the Scottish Mesothelioma Network website.

Education Events

The network team continues to host an annual education and networking event for health care professionals and those with a specialist interest in the care of those affected by a diagnosis of mesothelioma. Presentations at the last event in May 2023 included:

An Impact Analysis of the Scottish Mesothelioma Network
Trials and Treatment: An update on Meso-ORIGINS
The results of SYSTEMS-2 Trial
Staging and State-of-the-Art Imaging in Malignant Pleural Mesothelioma (Diagnosis and Staging in Malignant Pleural Mesothelioma and Mesothelioma Imaging for now and the future: MRI, research and beyond)
Exercise therapy in Mesothelioma – the EXTRA-Meso feasibility study

Fundraising

Whether baking ‘Muffins For Meso’ or attending education events, networking and setting up information stands, the CNS team across Scotland has continued to highlight and promote the work of Mesothelioma UK and raise vital funds for them.

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The Shipbuilders of Port Glasgow sculpture lit-up blue as
part of the Action Mesothelioma campaign
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A special thanks, in particular, to Lynne Hunter (Lothian CNS) who helped raise an amazing £1,477.50 and the Tayside Respiratory team for completing the Kiltwalk, raising funds for both Mesothelioma UK and the Roy Castle Lung Cancer Foundation.

Mesothelioma UK

Patient Case Study

Roger Tweed

Here Roger shares his journey with mesothelioma and the pivotal supporting role that Mesothelioma UK has had throughout.

This is a very personal account of one person’s initial journey with mesothelioma. It is incomplete and there is more to come and more to learn. It is unique, just as everyone’s experience of living with cancer is unique. In meeting so many brave and wonderful fellow travellers, at hospital and through Mesothelioma UK, I have learnt more in five years of the diversity of people’s responses to life’s challenges than I learned in my first 70 years.

It was August 2019. I was on holiday in Crete celebrating both my son’s wedding and my 70th birthday. It was great except that I could not climb the hill to our bedroom apartment from the hotel main building and facilities. I had to hire a car just to return from breakfast! I was totally out of breath after just a few yards up the steep hill.

As soon as we were home my wife sent me to the doctors. Epithelioid mesothelioma. It took Joan and I an age to get our tongues round those words.

We had great emotional support, but as we later discovered, there was a lack of experience of mesothelioma at my local hospital. This meant that I was given the prognosis of no more than 12 months to live. As a result of this I gave up work and rather than planning for the future, we set about planning for my death. It was a dark time for both of us.

I noticed too, that whilst I was given loads of support, my wife, who was hit extremely hard by my diagnosis, was given much less. It is a truth, well recognised by Mesothelioma UK, that the carer needs as much practical and emotional support as the person living with the cancer. Indeed, the carer lives with the cancer at least as much as the one diagnosed.

So, I had my first course of chemo. They were not the best times, but it reduced the tumour, and the cancer became inactive. However, I was told there was no further treatment and I would be put on palliative care.

Palliative care. I had no idea what this involved. I imagined a hospital bed would be delivered and that would be the end of my life.

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the disease. They gave me accurate information; they answered every question honestly and fully but most importantly they gave me hope.

The Mesothelioma UK nurses, the research nurses at the Hope Centre delivering my treatment and monitoring my disease and the team of doctors have been the greatest support imaginable. In my journey with cancer, they have accompanied me on seven further courses of treatment, listening to my every moan and happy moments. They have given me encouragement each time I have had side effects, and I claim to have managed to get every side effect listed for each treatment. It has been an incredible experience to have had the privilege and luck to share my journey with such kind and dedicated professionals.

“For the first time I met Mesothelioma Specialist Nurses from Mesothelioma UK and suddenly I was the one being treated rather than the disease.”

That was not the case though! I had a wonderful 2020 from March to November. The total lockdown for us was a wonderful time spending 24 hours with each other every day and then caravanning togetherJuly, August, and September. Sadly though, it didn’t last. My wife became ill in November, was admitted to hospital in December, caught Covid there and died early January. She died at around the time we had planned for my end. It was devastating and I still feel that sense of guilt that it should have been me.

During the last four years I have enjoyed a full and active life. Some activities have been harder to maintain, and some I have moved on from, but it has led me to find new sources of joy and pleasure. There is something about realising fully, for the first time in one’s life, that one really is mortal and the certainty of death is accepted, that leads to a greater appreciation of the everyday mundanities of life. It has been surprising that I have in many respects found that certainty to be liberating.

The support of the Mesothelioma UK nurses has enabled me to maintain my acceptance of my cancer, and whilst I refuse to let the cancer define me, I have been enabled to make it part of me and to help me learn more about myself and to still find joy, laughter and purpose in my life.

Roger was diagnosed in 2019, but it wasn’t until he was referred to the Hope Centre in Leicester for a clinical trial that he first met the Mesothelioma UK nurses. These nurses have been instrumental in his journey, offering knowledgeable support and guidance, especially after the loss of his wife. They have encouraged patients to network and come together as a group, which has been vital for sharing experiences and supporting one another. Additionally, they have acted as a crucial link between Roger and his consultant. Without the Mesothelioma UK nurses, there would be no one to turn to during anxious moments and times of worry.

However, I had further life changing events by the end of February. I was invited to the Hope Centre at Leicester Hospital to discuss the possibility of a trial. This changed everything.

I arrived excited and optimistic but with little hope. I felt very much I was on borrowed time. The Hope Centre changed everything. For the first time I met Mesothelioma Specialist Nurses from Mesothelioma UK who were fully aware of my cancer. I got to know them, they got to know me and suddenly I was the one being treated rather than

Mesothelioma UK

Benefits Support

Benefits Advisors

Patients with mesothelioma are highly likely to be entitled to government benefits and compensation, regardless of their current financial position, and it is a key priority for Mesothelioma UK to ensure that all patients have access to high quality, specialist advice.

It is no exaggeration to say that multiple patients have died before their benefit claims were processed. Mesothelioma UK has sought to raise awareness of this issue via a PR campaign and by making repeated contact with government ministers.

We continue to provide one to one benefits and compensation advice to our patients in North East England, provided by our Benefits Manager, Sarah Thomas. In the rest of the UK we work closely with members of the Asbestos Victims Support Group Forum to ensure patients asking us for advice are matched with a suitable specialist advisor in their area.

We continue to raise awareness of Mesothelioma UK’s benefits advice service by attending health professional training and educational days and working closely with the mesothelioma professional community.

Facts & Figures

Total number of clients

An ongoing major challenge is the deterioration in service levels and processing times of Industrial Injuries benefits at the Department for Work and Pensions. Previously held in high regard by specialist advisors, the Industrial Injuries department has seen a doubling in processing times for benefits and government compensation claims by mesothelioma patients.

Our research shows that Industrial Injuries Disablement Benefit processing time¹ for claimants with mesothelioma has increased from an average of 28 days in April 2022 to 54 days in April 2024 and processing time for government lump sum payments under the Pneumoconiosis etc. (Workers’ Compensation) Act 1979 and 2008 Diffuse Mesothelioma Scheme has increased from an average of 34 days in April 2022 to 71 days in April 2024.

Lump Sum Payments Identified

£1,291,658

Estimated Annualised Benefit

£903,086

1. Processing time as defined by Mesothelioma UK is the time from the postal date of the claim forms to the date the claimant receives their award letter.

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Support Line

The Mesothelioma UK Support Line sits at the centre of the support services provided by the charity. A freephone number (Mon - Thurs 9am-4pm, Fri 9am-3pm) provides access to expert support and advice for those not able to find this locally - sometimes a listening ear is all that is required.

In 2023/2024 the Mesothelioma UK Support Line dealt with 421 contacts for support split as follows:

100 235 40 46 Via email Via our website contact form Calls to our freephone support line Via our Patient & Carer Facebook group

So, who contacts Mesothelioma UK for support?

What kind of support are our users looking for?

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29 17
37 86 72
87
37
37
62
269 107
Well but worried about Compensation & benefits
asbestos exposure New diagnosis
Healthcare professional Symptom & pain management
Patients Treatment options
Relative/carer Clinical trials
Well but worried about exposure
Other
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What does this show us?

Numbers of calls and emails year on year seems to be similar. Those choosing to contact us via our website or via social media have increased threefold since last year (2022/23). Total contacts for support across all media have increased since last year by 10% showing that demand for our services is on the increase.

What does this show us?

As has been the case in recent years, we receive requests for support from three times more family members than from patients themselves. Support for Carers remains high in our priorities with the Carers Hours monthly support group, Carers Course and the Patient and Carer Facebook group. Many plans are in place for 2024/25 to increase and improve services for carers. Recent press coverage and campaigns have brought the issue of asbestos exposure to the minds of more people, so the increase in calls from those worried about this is to be expected.

What does this show us?

Most contacts are about symptoms, treatment, benefits and compensation showing a continuing need for our support services for those who are not receiving this information and advice locally.

Mesothelioma UK

2. Research

Introduction

Mesothelioma UK is dedicated to advancing research in all areas of mesothelioma care and treatment. Our goal is to support top-tier, scientifically relevant research focused on mesothelioma.

In April 2023, we launched our third independent grant round. We continue to be proud members of the Association of Medical Research Charities, whose support and guidance we deeply appreciate. We are also immensely grateful to our Research Advisory Steering Committee (RASC) for their thorough review of applications, ensuring we fund only the highest quality research.

Active Grants

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

Tipping the balance: pro-and anti-apoptotic proteins as determinants of radiation resistance 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:

The key aim of this project is to investigate why radiotherapy treatment reduces pain for some patients with asbestosrelated cancer, mesothelioma, and not others.

EXTRA-Meso feasibility study – EXercise TheRApy in Mesothelioma feasibility study.

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

The aim of this study is to examine the feasibility of a randomised trial of exercise therapy in mesothelioma. Outcomes from the study will help us refine the design of a future definitive phase 3 trial, including the number of recruiting centres required, and the optimum duration and format of the exercise intervention.

Annual Report 2024

Completed Grants 2023-24

Health & Lifestyle of Patients with mesothelioma (HELP-MESO)

A new research initiative by Northumbria Healthcare NHS Foundation Trust, funded by Mesothelioma UK, has delved into the health and lifestyle of patients battling mesothelioma. The study, aptly named ‘Health and Lifestyle of Patients with Mesothelioma’ (HELP-MESO), aims to enhance patient care by focusing on appetite, diet, and physical activity.

MINNOW Investigating the Mental health Implications of a mesothelioma diagNosis and developiNg resources to Optimise Wellbeing

MINNOW was the first study to explore both mental health impacts and interventions for patients and carers living with mesothelioma. Through adopting a mixedmethods design, we have been able to provide a detailed picture of the mental health and wellbeing experiences of patients, and current and bereaved carers.

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

A study conducted by North Tees and Hartlepool sheds light on the challenging path faced by patients diagnosed with Malignant Pleural Mesothelioma (MPM). This rare and incurable cancer, primarily linked to asbestos exposure, affects the lung pleura and presents complex symptoms. The study aimed to trace the journey from diagnosis to end-of-life care, uncovering unmet needs and opportunities for improvement.

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

Researchers at the University of the Highlands and Islands have made significant progress in the diagnosis of mesothelioma, a rare and aggressive cancer linked to asbestos exposure. The study, funded by Mesothelioma UK, explored a novel approach using pleural effusion - a build-up of fluid around the lungs - as a diagnostic tool.

Funding partners for 2023/24

Mesothelioma UK

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. By the end of June 2024 we will have completed four years as a research centre.

In its fourth year the Research Centre has continued to expand its programme of research to benefit the care of people diagnosed with mesothelioma and their families. In 2023/4 we completed three studies on mental health and wellbeing impacts of mesothelioma, palliative care needs in mesothelioma and variability in peritoneal mesothelioma experiences. We are continuing with our 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.

In addition, we will commence a nested study within the HIT-MESO clinical trial which will explore patient experiences of receiving proton beam radiotherapy treatment. These studies complement our existing portfolio of 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 has achieved the following:

Led 17 high-quality research studies
Achieved 169 research outputs, conference presentations and publications
Published 27 papers in peer review journals (e.g. Journal of Advanced Nursing, Palliative Medicine, European Journal of Oncology Nursing )
Presented 72 posters and oral presentations at national and international conferences including International Mesothelioma Interest Group (iMIG), British Thoracic Oncology Group (BTOG), International Thoracic Oncology Nursing Forum (ITONF)
Invited to present 32 presentations at conferences (including as keynote speaker, plenary and discussant) and study days e.g. law firms, Local Mesothelioma Networks, asbestos monitoring industry seminars
Made 10 policy/parliamentary contributions
Contributed to 44 public engagement events including creating animations and films, infographics and events at the Festival of the Mind and Festival of Social Sciences
Had a book commissioned on Living with Mesothelioma that will be published by Routledge in 2025

We have recently developed a ‘Resources’ webpage where all our outputs can be accessed.

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

Earlier this year we were delighted to be awarded core funding from Mesothelioma UK up to the end of June 2026. 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. More information about the Mesothelioma UK Research Centre can be found on their website: https://www.sheffeld.ac.uk/murc

Annual Report 2024

Highlight on a Research Centre Study

Palliative care needs of those living with mesothelioma and their families

Research summary

Palliative care is treatment, care and support for people with a life-limiting illness, and their family and friends. The aim of palliative care is to help people have a good quality of life. In 2021-2023 we conducted a study investigating the palliative care needs of people with mesothelioma and their families, and explored the important role of Mesothelioma UK CNSs in supporting people with palliative care needs.

We found that people with mesothelioma have significant palliative care needs from the moment they are diagnosed, such as the management of pain and other symptoms. Family carers have their own palliative care needs, for example, information needs around ‘what lies ahead.’ Mesothelioma UK CNSs are highly skilled at providing palliative care and have an important role in supporting patients with their early palliative care needs; they also work closely with specialist palliative care teams to manage greater needs.

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The Mesothelioma UK Research Centre team
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To help patients and families understand the important role of palliative care, we have produced a short animation and accompanying infographic, which have been widely used and are available on our website. We also took part in the 2023 Festival of Social Sciences, where we hosted a panel discussion with patients, nurses, doctors and researchers to discuss, and address, some of the common misconceptions around palliative care.

A striking finding from the study was that people can be reluctant to accept palliative care because of negative perceptions about the word ‘palliative,’ which some people associate with death. We found palliative care can be valuable at any point in the mesothelioma journey and can improve quality of life throughout.

Since completing the study, we have been working hard with Mesothelioma UK to improve palliative and endof-life care in mesothelioma. For example, we have used our research findings to support Mesothelioma UK CNSs in their clinical practice and have published a number of articles in peer review journals. We have also produced a range of resources to help all doctors and nurses understand more about palliative care in mesothelioma.

In 2024 we were delighted to receive funding to develop a play about mesothelioma. ‘Invisible Threads’ is a powerful play telling the stories of families affected by mesothelioma; highlighting injustice, human spirit, and the strength, positivity, and hope of the mesothelioma community. The play was a collaboration between the Mesothelioma UK Research Centre and Dead Earnest Theatre. It premiered in Sheffield in September 2024. For more details about this study, a recording of the play, or to download any of our resources see our webpage.

Mesothelioma UK

3. Information

Example of our leaflets

We aim to provide everyone with timely, highquality information, empowering patients to make informed decisions about their care.

Our accreditation with the PIF TICK, the UK-wide quality mark for health information from the Patient Information Forum, is crucial to this effort.

Our downloadable leaflets and booklets are for

everybody affected by mesothelioma. They complement the support given by our nurses. Our website also has lots of additional information including looking after yourself and understanding clinical trials.

Number of leaflets distributed

Number of downloads

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17,999
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Mesothelioma & Diet 2,574 Planning for End of Life 2,361

Annual Report 2024

Our Communications

The following information can be found on our website.

Blog pages

News pages

Our blog brings together stories from our amazing fundraisers and staff, as well as real-life stories linked to our campaign work.

News stories and press releases are published in our ‘latest news’ section.

Our magazine

Mesothelioma UK aims to keep patients, families, fundraisers, corporate donors and healthcare professionals up to date with the latest news and developments in the mesothelioma community.

Recipients on our mailing list

1,672

Social media

We also share lots of news and information via social media on our Facebook, Instagram and LinkedIn accounts.

www.facebook.com/therealmesouk

@mesotheliomauk

https://uk.linkedin.com/company/ mesothelioma-uk

https://x.com/Mesouk

Patient stories

Mesothelioma UK

4. Awareness

The charity seeks to prevent mesothelioma from happening to future generations by raising awareness of the impact of mesothelioma and asbestos. We also want to champion mesothelioma within the healthcare profession, to ensure mesothelioma is always on the agenda.

Don’t Let the Dust Settle

In April 2023, Mesothelioma UK launched the Don’t Let the Dust Settle campaign, highlighting the urgent need for government action on asbestos in public buildings. It is estimated that up to 1.5 million buildings in the UK may contain asbestos, including public buildings like schools and hospitals. As these buildings age, the risk of releasing harmful asbestos fibres increases - a significant but overlooked public health threat. The campaign called for the introduction of a national asbestos register and the phased removal of asbestos from all public buildings.

We received incredible support from patients, carers, volunteers, fundraisers, and government officials. Public figures, such as Alex Horne (co-host on Channel 4’s Taskmaster) also lent their voices to the campaign. Our goal was to engage people through social media and encourage them to contact their MPs, share personal stories, and raise awareness of the dangers of asbestos exposure.

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Alex Horne supporting Don’t Let the Dust Settle
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Annual Report 2024

One of our dedicated supporters and mesothelioma patients, Helen Bone, launched a petition urging the government to act on the recommendations of the Work and Pensions Select Committee inquiry. These recommendations included the creation of a central asbestos register and a plan for the safe removal of asbestos over the next 40 years. Helen’s petition gathered over 10,600 signatures, which triggered a formal government response. While the response fell short of expectations, Mesothelioma UK remains steadfast in its commitment to advocating for those affected by mesothelioma. In the words of Mesothelioma UK’s CEO, Liz Darlison: “It beggars belief that in 2023 the UK continues to have the highest rates of this preventable, incurable industrial cancer.”

The Don’t Let the Dust Settle campaign generated significant impact. Our campaign video received over 5,000 views within the first month. On Facebook, our posts reached nearly 40,000 people with over 4,800 engagements. Our top post alone had 6,125 impressions and almost 900 engagements, further spreading the word that asbestos is still a danger. And the campaign was mentioned in Parliament during a hearing for a 10-minute rule motion in September 2023. We also strengthened our collaboration with other organisations, such as the Asbestos Support Groups Forum, who have pledged their continued support for the campaign.

Although financial constraints have required us to scale back campaign activities, Mesothelioma UK remains committed to advocating for patients and promoting the safe removal of asbestos across the UK.

Cost-Benefit Analysis

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Sir Stephen Timms MP and Liz Darlison
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In collaboration with our partner organisations, Mesothelioma UK also published a cost-benefit report, Clearing the Air, which was unveiled at a Parliamentary Reception hosted by Sir Stephen Timms on 30 November 2023. The event was chaired by our Ambassador, Carolyn Quinn, and received strong cross-party support, along with broad representation from unions. Mesothelioma UK was invited to present the findings at the All-Party Parliamentary Group on 13 December.

The report outlines the significant economic and social costs of asbestos-related diseases, specifically in schools and hospitals. In 2023 alone, the cost to the UK economy and society from asbestos exposure in these sectors was estimated at over £1.3 billion. The report’s findings strongly advocate for the removal of asbestos from public buildings within the next decade, projecting that such action could save the UK economy nearly £12 billion over the next 50 years. The savings to public finances would amount to approximately £3.6 billion.

These findings reinforce the urgency and relevance of our Don’t Let the Dust Settle campaign. Mesothelioma UK will continue to push for a future free from asbestos and the devastating diseases it causes.

Mesothelioma UK

Mesothelioma and the Armed Forces

Funds secured through the covenant fund grants scheme have enabled Mesothelioma UK to continue raising awareness about the impact of mesothelioma across the armed forces. The charity has attended armed forces events, distributed leaflets and material to highlight the disease. To honour all those armed forces personnel who have lost their life to mesothelioma a memorial was unveiled at the National Arboretum in October 2023.

Department of Work and Pensions (DWP) Service

Mesothelioma UK has picked up on a downturn in the DWP handling of industrial benefits and claims. The charity is collating the experience of patients and particularly the delays they are experiencing in having their awards confirmed. Working together with other charities, the DWP and MPs, we are actively seeking to rectify the situation.

Coroners Project

On death, a diagnosis of mesothelioma necessitates a coroner’s inquest. Family and carer experience of this process can vary enormously with too many people having a protracted, unnecessarily negative and unhelpful experience. The charity has formed a project group to look at this and working with the charity’s research team they have embarked on a rigorous review exploring the experiences of families/carers, coroner offices, and health care professionals.

MAGS: The Healthcare Staff Mesothelioma Asbestos Guidance Study

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Health carers with mesothelioma and their experiences
of presentation, treatment and care.
This report was inspired by Dr Mags Portman (pictured above) and is dedicated to her memory.
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Future Plans

Mesothelioma UK will continue to raise awareness and seek to prevent mesothelioma, with a particular focus on the recommendations from the MAGs report and health care workers’ study once completed. The projects exploring issues around the coroner and DWP experience will be completed and the findings and recommendations will be disseminated appropriately.

As we look ahead, our commitment to advocacy remains stronger than ever. Through our ongoing Don’t Let the Dust Settle campaign, we will continue to raise awareness and drive meaningful change for those affected by mesothelioma and asbestos-related illnesses. This important issue is being addressed by a broad network of organisations with whom Mesothelioma UK collaborates regularly. These partnerships allow us to contribute our expertise and amplify the collective effort toward meaningful progress. We believe that working together is essential to creating long-lasting change for the mesothelioma community.

Annual Report 2024

5. Sustainability & Fundraising

Overview

Over the last year, the mesothelioma community have come together in remarkable ways to support our mission and vision. The fundraising efforts have been nothing short of extraordinary, reflecting the dedication and generosity of our donors, volunteers and partners.

To maintain our current level of activity and ensure a more equitable impact across the UK, we will persist in working toward the objectives outlined in our strategy.

Working towards raising our sustainable income
Ensuring the right governance and support to enable us to grow effectively as an organisation
Developing and maintaining a high-performing team who can make a tangible difference to those affected by mesothelioma

Year on year we are blown away by the innovation and determination of our fundraisers.

We extend our heartfelt gratitude to every donor, volunteer, fundraiser, trust, foundation, corporate partner, and our legal panel for their continued contribution to our mission. Your generosity and support inspire us to strive for excellence and drive our vision forward. Thank you for being an integral part of our journey and for helping us make a tangible impact. Here is a short round-up of what they have been up to!

Mesothelioma UK

Community Fundraising

Our Community Fundraising team has worked with many of our fabulous supporters, encouraging them to participate in various challenges and activities to raise essential funds for the charity.

Challenges

London Landmarks

Great North Run

In April Mesothelioma UK again had a presence in the iconic London Landmarks Half Marathon which was a fantastic day and enjoyed by so many. The weather as always was kind to us and our wonderful ambassadors and volunteers helped with our cheer station where we met with our runners en route and at the finish line where we welcomed and cheered them in.

There were many tears of joy followed by the euphoria that they had completed this incredible challenge in memory of their loved ones. As always Nile our fantastic volunteer photographer was there to catch those special moments and our 20 runners raised an amazing £21,304.20 .

September is the month for the Great North Run and every year our dedicated runners flock to take part and this year was no exception. Twenty-seven took part including our CEO Liz Darlison who went to support ‘The Great North Ron’. Ron has mesothelioma and has taken part in every Great North Run since the race began so he threw down the gauntlet at our Patient and Carer Day, and Liz valiantly took up the challenge and took part. The weather was atrocious and there were unprecedented storms which led to flooding and absolute chaos towards the end of the race, but our undeterred runners carried on the brave fight to the finish and raised an amazing £17,351.33.

Annual Report 2024

Fundraising Stories

Mt. Kili at 60

Jackie Bentley, along with her daughter Elena and friend Deborah, had always had a personal ambition to climb Mount Kilimanjaro, so in February 2024 whilst celebrating her 60th birthday, she did it in support of her sister!

“We successfully summited Mount Kilimanjaro on February 25 at 7.20am, my 60th birthday. The weather had been perfect up until the last couple of days when it became extremely windy although remained dry. We commenced our summit walk on 24 February at around 11pm hoping to see the sunrise at Stella Point around 6am. Unfortunately, the weather was not on our side with rain, snow and very windy and icy conditions making our climb more challenging. The relief when we got there was immense! It is certainly the hardest thing I have ever done, both physically and mentally. I am so pleased that in completing this challenge I have managed to raise funds for Mesothelioma UK and assist in helping to provide support to people in the same situation as my sister. My sister is very grateful for the support she has received, and I know she finds the monthly forums in particular very helpful.”

Jackie, Elena and Deborah raised an incredible £1,220 and £248.50 in Gift Aid. Thank you so much for taking on this challenge for Mesothelioma UK!

Chasing the Sun

Murray Fearn and his brother completed the Chasing the Sun Cycle Ride in memory of their father who passed away from mesothelioma in 2008.

“We set ourselves a tough fundraising challenge: generally speaking, cycling 100 miles is considered to be a big day out. My brother Fraser and I are both keen cyclists, but even to us, attempting 200 miles was very much an unknown. What made it special and unique for us was the time limit: complete those 200 miles between the hours of sunrise and sunset, coast to coast, ‘chasing the sun’.

It was a spectacular day out on the bikes: it had wind, rain, hill fog, and thankfully some well-deserved sunshine. We cut it fine, with only 15 minutes to spare before sunset. We reckon it was the faffing during the food stops, but, as we get that from our dad, it seemed fitting and a tribute to him. We are overwhelmed by and super grateful for the donations the charity has received as a result of our fundraiser. The work of Mesothelioma UK means a lot to us, and we hope it keeps on providing support to those in need.

The Fearn brothers raised £2,035 and £446.25 in Gift Aid in their Chasing the Sun Challenge. Thank you both for your dedication and support!

Mesothelioma UK

Fundraising Campaigns

Fundraising Appeals

Muffins for Meso

Give Hope This Christmas

Our annual national ‘Muffins For Meso’ campaign had a great response, raising both awareness and tempting our tastebuds. As always we held our competition for Best Dressed , Most Unusual and Best Recipe categories and we were spoilt for choice!

Again, this year we held our own event at head office and were supported by our local Waitrose Mountsorrel who kindly provided us with some lovely muffins and the operations staff took to their ovens and baked some wonderful delights for our guests. In total the campaign raised nearly £3,000 and it was a wonderful day.

Fitness Feb

Our Fitness Feb campaign was another huge success! We had many fundraisers taking part across all regions including individuals, families, work colleague teams and even a dog and a horse! Together they completed almost 5000km and raised £7,463.62 (Inc. Gift Aid).

Each year in the UK, more than 2,700 people are diagnosed with mesothelioma - the highest rate in the world. Yet not all patients have access to the specialist care they need. At Mesothelioma UK, we are determined to change that. We’re working tirelessly to ensure that every patient receives the support of a Mesothelioma Clinical Nurse Specialist, as we share your commitment to ensuring that no one loses hope in the face of this diagnosis.

In December, we launched our Give Hope This Christmas appeal, aimed at making a lasting impact on the lives of those living with mesothelioma. The campaign ran across social media, our website, and via email, encouraging regular donations to support our mission. We were thrilled with the positive response, particularly to the videos and John’s story, which resonated with many. Thanks to the generosity of new supporters, we secured donations amounting to £1,440 in the first year alone.

We are incredibly grateful to everyone who donated, shared, and supported the appeal. It’s still ongoing, so if you’d like to read John’s story or contribute to the campaign, you can do so on our website here.

Annual Report 2024

Our Ambassadors

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Brian Wallis (l)
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In August this year, Brian Chamen Wallis decided that it was time to take retirement from his role as a Mesothelioma UK Ambassador.

Brian has travelled the country over the last 10 years for Mesothelioma UK raising awareness with his dedicated team. He has taken part in our fundraising campaigns, attended events on behalf of the charity and has spoken many times about his personal journey of losing his beloved wife Rosemary to mesothelioma and why he supports the charity. In memory of Rosemary, Brian has been instrumental in not only opening three support groups in the East of England area to help support patients and their families which was his promise to her, but has also help lead and guide the Mesothelioma Armed Forces Project.

Rosemary Giles is a Partner in the Cambridge and London offices of Irwin Mitchell and has been handling cases for victims of mesothelioma and asbestos-related disease generally for 25 years.

Carolyn Quinn is a former journalist and a much loved voice on Radio 4 for decades. Carolyn has supported the charity a number of times by orchestrating interviews and being a key speaker and chair at events.

Chris Emmett was responsible for major procurements including British Rail Channel Tunnel Project, St Pancras chambers refurbishment, King’s Cross, and rail privatisation. She now reviews major high-risk projects such as rail upgrades, NHS hospitals and reconfigurations and has extensive knowledge of best practice across government health and transport.

Ginny Chalmers heads up the Asbestos-Related Disease team in Bristol. She specialises exclusively in helping people and their families who are suffering from illness because of asbestos exposure.

Richard Blunt is an experienced public affairs consultant with over eight years’ experience working in the sector. He has worked across a number of sectors including healthcare, transport, sustainability and financial services. With this knowledge Richard has been a fantastic support to Mesothelioma UK’s political efforts and campaigning in the last year.

Brian has also been a huge supporter of and contributor to the Armed Forces Memorial which now sits in pride of place at the National Memorial Arboretum. Brian continues to attend and help at the support groups. We would like to express our heartfelt thanks to Brian for his dedication and support.

Mesothelioma UK

Our Volunteers

Sue Farrall and Catherine Cocking

Volunteering is a fantastic way to give back within the community and volunteers are a vital part of supporting and raising awareness for our charity.

Our wonderful group of volunteers support us in many ways across our community – from helping at events, distributing leaflets and collection pots, to proofreading valuable information and raising awareness through social media! We are committed to growing our volunteer group to enable us to continue to support all people affected by mesothelioma, whilst raising awareness of this terrible disease, throughout the community.

On 8 March 2024, we held our popular Ladies’ Lunch event in Manchester. Two of our wonderful volunteers, Catherine Cocking and Sue Farrall, were there to support us to ensure all ran smoothly on the day, from registering the guests on arrival, to manning our stand handing out leaflets, and selling Mesothelioma UK goods. Thanks to their incredible support, it was a successful and enjoyable day for all!

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Rebecca Dunmore
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Rebecca Dunmore is a research scientist and works for a small biotech company developing and advancing potential medicines through to clinical trials. When Rebecca’s father, Errol, sadly passed away from mesothelioma she wanted to do something to support the charity.

“Since my father passed, I have supported the

mesothelioma community in some small way. I arranged for our local medieval bridge to be illuminated blue for the #goblueformeso campaign on Action Mesothelioma Day, I have taken part in research studies with my experience as a carer and became a volunteer for the charity. I contribute to the ‘spotlight on research’ section in the Mesothelioma Matters magazine. I read and summarise research articles to find the key information that is important to mesothelioma patients and their families. It has been very rewarding to utilise my professional and personal experiences to contribute to this and I hope to continue.”

Thank you to all our volunteers for their time and continued support.

Annual Report 2024

Mesothelioma UK Legal Panel

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

The panel includes 12 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.

While the idea of making a legal claim can seem daunting for those diagnosed with mesothelioma, 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. Importantly, 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.

Our Legal Panel members play such an important role in Mesothelioma UK. They help to spread information about the work we do (they promote gifts in wills and some members provide our free wills service) and also by giving advice and support, sponsoring our specialist nurses for education, sponsoring our events such as Patient and

Carer Day, Awards Evening and Ladies’ Lunch, and by taking part in the charity’s fundraising campaigns, holding their own events and much more.

We are forever grateful for their continued support.

Corporate Partners

We are proud to have a number of Corporate Partners who generously give monthly donations, ranging from £200 to £500.

Our amazing Corporate Partners support us in various ways, from making one-off and regular donations to organising fundraisers like quizzes, balls, team-building events, and coffee mornings.

Many also participate in Mesothelioma UK’s fundraising events and campaigns, or choose us as their charity of the year. We are incredibly grateful to these fantastic organisations for their ongoing support, which helps us make a real difference for those affected by mesothelioma.

Our Corporate Relations Team is committed to strengthening these partnerships and building new ones in the year ahead. To learn more about becoming a Corporate Partner, visit our website at Mesothelioma UK Corporate Donors.

Gifts in Wills

Our vision is a future free from mesothelioma, and leaving a gift in your will plays a vital role in making that vision a reality. This year, we are deeply grateful to have received 17 legacy donations, totalling £220,913 . Each gift is an immense honour, reflecting the compassion and commitment of our supporters while helping us plan for the future.

To make this process more accessible, Mesothelioma UK has partnered with several respected firms from our Legal Panel to offer a free will-writing service. While there is no obligation to include a charitable gift, we warmly

encourage individuals to consider pledging support for Mesothelioma UK through their will. Since launching this service in 2019 we have helped over 92 mesothelioma patients and their families create or update their wills at no cost.

If you would like to learn more about leaving a gift in your will to Mesothelioma UK, please contact us at 0800 169 2409 for your complimentary guide, or request one online here.

Your kindness and generosity will help create a brighter future for those affected by mesothelioma.

Mesothelioma UK

Events

Patient and Carer Day

Mesothelioma UK was delighted to host our 18th annual Patient and Carer Day at the Leonardo Royal Hotel Brighton Waterfront on 5 October 2023.

Aside from being a wonderful educational event and a chance to learn more about a whole host of mesothelioma and asbestos related topics, Patient and Carer Day is very much about connecting with others. It presents a rare opportunity for people affected by mesothelioma to meet face to face and share their experiences.

Professor Nick Maskell, Chair of the Mesothelioma UK Board of Trustees and Professor of Respiratory Medicine at the University of Bristol, was first to the podium and gave an update on mesothelioma in the UK today. Across the rest of the day, a range of speakers talked about

diverse topics from a Mesothelioma UK nursing expert, to the MARS2 trail and the future of radical surgery, through to advanced asbestos detection.

Other speakers addressed issues relating to cough and mesothelioma; wellbeing workshops; managing Scan Related Anxiety (Scanxiety) in mesothelioma; carers courses; advances in drug therapy; how useful are radiotherapy approaches in the treatment of mesothelioma; an overview of recent patient experience research at the Mesothelioma UK Research Centre; nanotechnology to improve mesothelioma care; thermal recycling; an update from the UK National Asbestos Register; and a focus on groundbreaking technology.

One of the most poignant presentations was that given by Eric Jonckheere who lost both parents and two brothers to mesothelioma. More on Eric’s story can be found here.

Annual Report 2024

Awards Night

After the daytime event, it was time for Awards Night, a chance to give thanks and recognition to some of our amazing supporters.

Guests arrived for a seaside themed evening, and enjoyed a meal, drinks and a raffle before the awards were announced.

Congratulations go to our winners who were:

Fundraiser of the Year – Rob Juby

In 2022, Rob began his fundraising efforts for Mesothelioma UK. Rob was motivated to honour the memory of his late father, John, who sadly passed away in 2018. Rob embarked on a challenging 60-mile bike ride across the Peak District, followed by a 26-mile hike around Bakewell, alongside his AXA colleagues and later in the year, he organised a quiz event. His invaluable support and dedication to the charity have gone beyond fundraising, as he has also volunteered his time. We are truly fortunate to have Rob as a part of our team at Mesothelioma UK and we extend our thanks to him for his contributions.

----- Start of picture text -----
Rob Juby wins Fundraiser of the Year
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Special Contribution – Denise Burwell & Nile Ateem

Denise Burwell – since the beginning of her volunteer journey, Denise has provided unwavering dedication and a huge level of commitment to the cause. No task is too small for her – she has set up stands at her local hospital, distributed flyers throughout London for Action Meso Day, and passionately advocated for change during the Don’t Let the Dust Settle campaign. Denise’s profound commitment to our charity is nothing short of exceptional and her receipt of this award is so well deserved.

Nile Ateem - Another outstanding volunteer who has consistently demonstrated enthusiasm, dedication and total support for Mesothelioma UK, Nile has become an integral member of our team with his photography services. He has not only documented our brilliant fundraisers and supporters in action at events but has also undertaken his own fundraising initiatives in support of Mesothelioma UK and was able to secure celebrity endorsement for the promotion of the Don’t Let the Dust Settle campaign.

Charity Partner – HASAG

Mesothelioma UK is privileged and beyond grateful to work with some amazing asbestos support groups. Our relationship with HASAG spans many years and they are always there for us to turn to and seek support from. Their success as an organisation reflects how closely they work with, and support people living with asbestos-related diseases.

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Diane Salisbury (r) accepts the
Charity Partner award on behalf of HASAG
----- End of picture text -----

Corporate Partner of the Year

The Mesothelioma UK Legal Panel: Asbestos Law Partnership, Digby Brown, Fieldfisher, Hugh James, Irwin Mitchell, Irwin Mitchell Scotland, Leigh Day, Novum Law, Simpson Millar, Slater & Gordon, Thompsons, RWK Goodman

The Mesothelioma UK Legal Panel are a group of specialist solicitors who have years of experience in providing specialist legal advice to people diagnosed with mesothelioma. The Legal Panel consistently supports fundraising events and campaigns, promotes our free will service leading to donations through legacies, shares information and collaborates with other specialist firms. They support our nurses through sponsorship for educational events and also our Patient and Carer Day and Awards Night. We are truly grateful for all they do.

Mesothelioma UK

Dedication to the Charity – Pam Hamshaw

Pam has been supporting the charity for a very long time. In 2008, she lost her husband, Tony to mesothelioma. At that time, she was aware that many people had never heard of mesothelioma which inspired her and her family to do what they could to both raise awareness and funds to support the charity. Their first fundraiser was to walk the then unopened section of the relief road between Weymouth and Dorchester. Pam is dedicated to the charity and we love receiving Pam’s letters letting us know what she has been up to – there is always a smile that comes with them. Pam is one of our most dedicated supporters, she continually flies the flag for Mesothelioma UK and truly deserves her award.

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Sally Reedman (l) and Emma Brookes (r)
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Most Inspirational Fundraisers – Sally Reedman & Emma Brookes

Sally and her daughter, Emma, have been fundraising since 2013 in memory of dear Michael, who was a wonderful husband to Sally and father to Emma. Sadly, Michael passed away in 2012 and the pair have been committed to raising awareness and funds since. Nothing has deterred them; even during the pandemic, they continued to find the inspiration to carry on and fly the flag for Mesothelioma UK and have raised over £14,000 . Sally and Emma, our two wonderfully dedicated and inspirational fundraisers, truly deserve their awards.

Honourable mentions and special thanks

Brian Wallis – retiring as a Mesothelioma UK Ambassador. Brian has done a tremendous amount of work over the last 10 years in the East of England in memory of his dear wife, Rosemary. His vision was to help others diagnosed with mesothelioma, so he went about setting up support groups in Norfolk, Bury St Edmunds and Wells-next-the-Sea and he 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 the mesothelioma journey of patients and their families.

Sarah Morgan – retiring as a Mesothelioma UK Clinical Nurse Specialist. In 2017, after a long and distinguished nursing career in palliative care and lung cancer, Sarah Morgan joined our team to lead Mesothelioma UK’s support for patients in Wales. During the past six years, Sarah has tirelessly advocated for better access to care and treatments for people with mesothelioma. By becoming Project Lead for Wales, Sarah has ensured that the Welsh voice was heard at a national and international level.

In 2021, the Welsh Health Specialised Services Committee announced the commissioning of mesothelioma services in Wales including a national MDT and optimal pathway. Sarah has continued to be the leading voice in developing the service specification and ensuring the establishment of a mesothelioma network across Wales.

Ladies’ Lunch

On Friday 8 March, we held our annual Mesothelioma UK Ladies’ Lunch in conjunction with International Women’s Day at the Marriott Victoria & Albert Hotel in Manchester. Hosted by Lorraine Creech (Trustee) and our Community Fundraising Team, with help from one of our Ambassadors, Carolyn Quinn and some of our Clinical Nurse Specialists and volunteers – it was a huge success with many patients, families, supporters and members of the legal community coming together.

The day included a three-course lunch as well as some special raffle prizes including a spa day for two people at Ragdale Hall, a stadium experience at Leicester City Football Club, vouchers, hampers and much more! Our special guest speakers included Michelle Spencer, David Staley and Dr Bethany Taylor of the Mesothelioma UK Research Centre. Thanks to everyone’s incredible support and generosity, we raised £5,413.85 .

Annual Report 2024

How We Raised the Funds

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Donations for
Specific Funds
£5,446 Donated Services
& Facilities
Individual Giving
£467,718
Corporate & Trust
£101,105
Grants
£602,877
Campaigns & Challenges
£53,591
Legacies
£220,913
Events
£36,916
Corporate
Non Charitable & Trust
Funding Activities
£178,529
Non charitable
Donated Services
funding activities
& Facilities
£25,000
Investment
£26,353
Rental
£4,260
Major Donors
£48,800
Individual
Giving
Investment
Rental
Major Donors
Events
Legacies
Grants
Campaigns & Challenges
----- End of picture text -----

TOTAL: £1,771,508

Mesothelioma UK

How We Spent the Funds

Income Generation £243,177

Patient Support £873,234

Admin & Operational £258,672

Research & Audit

£137,708

Awareness

£79,767

Information Costs £65,936

----- Start of picture text -----
Income
Generation
Information costs
Awareness
Research
& Audit
Admin & Operational Patient Support
----- End of picture text -----

TOTAL: £1,658,494

Annual Report 2024

Trustees Report

The trustees present their report with the financial statements of Mesothelioma UK CIO for the year ended 31 March 2024. (The financial statements can be found at www. mesothelioma.uk.com/accounts-and-reports).

The trustees have adopted the provisions of 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) (effective 1 January 2019).

Trustees

Dr N Maskell (Chair) D E McKinley A L Coates Prof K Blyth M Waters (resigned 25/6/24) H Childs (resigned 27/3/24) Lorraine Creech (appointed 3/7/23) Simon Purves (appointed 3/7/23)

Chief Executive Officer

Liz Darlison

Operational Team

Structure, Governance and Management

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.

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.

Reference and administration details of the Charity, its trustees and advisors

Charity Number 1177039

Company Number 12541690

Principal Office

Faye Forde, Director of Operations and Finance Saranjit Sihota, Director of External Affairs Tracey Calvert, Head of Finance

Jill Lemon, Community Engagement & Fundraising Manager Alyshia Riley, Individual Giving & Marketing Manager (Maternity leave commencing March 2024)

Justine Bates, Individual Giving & Marketing Manager (Maternity cover, appointed March 2024) Megan Huxtable, Community Fundraising Officer (Appointed November 2023)

Mollie Shields, Corporate Fundraising Manager (Appointed January 2024, Resigned May 2024) Mike Holmes, Senior Corporate Relations Officer (Resigned July 2024)

Julie Morton, Support Services Manager Joelle Kirby, Editorial Manager (Resigned January 2024) Rachel Murphy, Events Officer (Resigned May 2023) Sarah Thomas, Benefits Manager

Roland Ungoed–Thomas, Creative Designer Beth Colbert, Operations Manager Hazel Curtis, Finance Officer (Resigned May 2024) Leah Scrimshire, Supporter Care Administrator Dumitrita Gulian, Finance Officer Beverley Forrester, Housekeeper

Independent Auditors

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

235 Loughborough Road, Mountsorrel, Loughborough, LE12 7AS

Note: Since the time of this report, Faye Forde and Saranjit Sihota have left the organisation due to redundancy. We thank them for their invaluable contributions during their time with Mesothelioma UK and wish them the very best in their future endeavours.

Mesothelioma UK

Investment Advisors

Magma Wealth Management Limited, Magma House, 16 Davy Court, Castle Mound Way, Rugby, CV23 0UZ

Subsidiaries and Related Parties

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

Financial Overview

Basis for Preparation

The Trustees assess whether the use of the going concern concept 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 group has adequate resources to continue in operational existence for the foreseeable future and there are no material uncertainties about the group’s ability to continue as a going concern, thus they continue to adopt the going concern basis of accounting in preparing the financial statements.

Expenditure decreased from £1,839,233 in 2022/23 to £1,658,494 in 2023/24. Spending on charitable activities was £1,414,497, a decrease of 12.9% 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.

More detail on how we raised and spent the funds can be seen in the charts on pages 37 and 38.

To address the charity’s long term income requirements, supported by fundraising consultants, we have completed a ‘root and branch’ analysis of the charity’s fundraising resources and methods. A long-term plan to strengthen Mesothelioma UK’s income generating potential has been developed.

For 2023/24 the overall costs of raising funds were 14% of the total income (2023 – 13%) - similar to pre-pandemic levels. Going forward the need to invest in fundraising is essential to enable Mesothelioma UK to continue to expand its services.

Risks

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.

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.

Financial Overview

Mesothelioma UK’s income is entirely dependent on donations, legacies, and grants. These contributions are crucial for funding the charity’s research, support services, and awareness initiatives.

Gross income increased on the previous year and the charity managed to achieve a small increase in reserves at year end. The final amount raised over the year was £1,771,508 (2023 – £1,610,457).

Mesothelioma UK remains indebted to our charity partners who have provided significant funds toward the charity’s team of specialist nurses, benefits advisor and two of our research projects. A total of £433,823 was raised through these partners towards the cost of funding these areas.

The trustees undertook a review of the charity’s reserves policy during the previous year. As it stands, Mesothelioma UK’s 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.

As of 31 March 2024 the minimum unrestricted reserves were £626,148 (31 March 2023 – £641,088) and the actual level of unrestricted reserves, excluding the value of tangible fixed assets, held by the charity was £912,911 (31 March 2023 – £771,847).

Annual Report 2024

Investments

Our investment portfolio is managed by Magma Wealth Management. As of the 31 of March 2024, the portfolio stood at £791,075. This includes £774,648 of invested assets and £16,427 of cash. The investment manager’s 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 which are seen to be benefiting the world. 2023 was a difficult year for investment with virtually all asset classes reducing in value globally early in the year but subsequently recovering strongly from November onwards. The really problematic area of longer duration fixed interest was avoided early in the year but adopted later, which worked very well leading to above average returns over the period.

Ethical investments have tended to underperform the general market as interest rates have risen and outperform as they fall, as they are perceived to be more growth orientated. This bodes well over the next few years as rates look to gradually reduce globally.

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

Shorter-term requirements to maintain liquidity need to be considered and we are in discussions to reduce risk on the portfolio for the year ahead.

Funds Held as Custodian

The charity holds funds on behalf of the UK Mesothelioma Alliance of £1,334 (2023 – £1,334).

Statements of Trustees Responsibilities

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).

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:

select suitable accounting policies and then apply them consistently;
observe the methods and principles in the Charity SORP (FRS 102);
make judgements and 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;
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 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.

In so far as the trustees are aware:

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

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

Approved by order of the board of trustees on 2/12/2024 and signed on its behalf by:

................................................. S Purves , Trustee

Mesothelioma UK

Looking Forward From the Chair of the Trustees Board

Mesothelioma UK is feeling confident and optimistic as we move into 2024/25.

After the challenges posed by COVID and the downturn in the global economy, we have strengthened our ability to raise the funds necessary to sustain, and hopefully grow, our vital services.

The year ahead will hopefully see the charity engage with more people and families living with mesothelioma. We will do this through building stronger relationships with our partner charities, corporate supporters and our amazing fundraisers. With everyone’s help we anticipate being able to grow our nurse and benefits advisory team and develop an even better range of support services, resources and events.

On behalf of the Board of Trustees I would like to congratulate the Mesothelioma UK Team for weathering a difficult few years and more importantly acknowledge and thank the charity’s faithful, generous supporters.

The UK Mesothelioma community is special, it is a privilege to be part of and Mesothelioma UK pledges to continue to do all we can to help people live better for longer and to prevent mesothelioma happening to future generations.

Prof N Maskell Chair of the Trustees Board

Annual Report 2024

Mesothelioma UK could not do any of this without the ongoing support of our fundraisers, donors, corporate partners and legacies. 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.

Mesothelioma UK Charitable Incorporated Organisation

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

Registered Charity Number 1177039

FOR ORCANISAIION Grnville Hall Grnvilk R(*J LEI 7RU

MESOTHELIOMA UK CIIARITABLE INCORPORATED ORGANISATION CONTEiYfs OF THE FINANCIAL STATEMENrs FOR THE YEAR ENDED 31 MARCH 2024 Rep•rt of tht Imdepe4deutA•dit• Ck•blty Blknnre Sheet 10 *) 27

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ORGANISATION CONSOLIDATED BALANCE SHErr 31 MARCH 2024 2023 Totsl FIXFII A&8EI3 T?glbk 16 17 12J•> 791 12J19 13.857 745,478 231JM 8SD8 22,1• IW738 122.606 101.638 InvcslmcnL8 19 61L917 560,624 Arno¢$ fallin8th yur 09110 (195.890 479 lJ83 1.110206 13833&4 1.110.206 92532• 785.704 324 Th¢ fuwKi aDJ weresiwloD itsbchalf by:

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ORGANISATION CONSOLIDATED CASH FLOW ATE FOR THE YEAR ENDED 31 MARCH 2024 2023 80.407) lo.4) Pur¢kn oftrybie Pw¢has¢ of ft<ed 8ss¢t inve5knt4 Sale offixoj 8SW Inv (5,r24) (189.451) 175,260 14 {18ih IMI33 (86m8) Cth ••d ¢•sh ¢4*Ivth atthl 421438 33

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ORGANISATION NOTES TO THE CONSOLIDATED FINANCIAL STATEMEiYfs. tQDtlnB¢d FOR THE YEAR ENDED 31 MARCH 2024 24 2023 712 27.732 F¢Ab Fami]y Ltd Mick FuThl S(Kl l(M),O 736 133,1 I},644 110 Bri$I.my¢rs Sqibb Phan HASAG LASAG 1501 8IA13 17.688 19.114 33,543 53.4CrfJ 53,758 10.410 31528 25,IX 8&1)LKI 19.952 33,1 SWASAG Mt•J'$ UK L441 Pthcl 31.124 RS On¢ology HASAG 37.191 2023 16A076 12 165,512 UK Tr*thng in for ts inclwion oftrir and logo on our wd)5its aad legal Py14

MESOTHELIOMA UK CJIARITABII ll¥CORPORATED ORGAY41SATION NOTES TO THE CONSOLIDATED FINANCIAL STATEMENTS. ¢DnliD•¢d FOR THE YEAR ENDED 31 MARCH 2024 10.025 14 2023 23 124.141 1/17 93,879 1675 9281 Will wtitill8 stri andoniine 8iVill8 f¢ 27.670 Travcl eXSe$ 193 17,639 3.110 17,173 3.110 1,532 1,928 49,376 Website and s181 Tndi8 Online5hop 43.iia 241 213713 Page is

MESOTHELIOMA iJKCHARifABLE INCORPORATED ORGANISATION NOTES TO THE CONSOLIDATED FINAIYCIAL sfATEMEiYfs. tODdmped FOR THE YEAR ENDED 31 MARCH 21)24 SMpp•rf C•sts I costs (xe 9) •¢e lill T•t• 6S936 79.767 137.708 8733 65J36 79,767 137,7•8 334 258 6n a17 185,964 649.660 NuTSa meetin Websit¢ •nd so¢id 12,442 IL442 6.198 8J95 13.787 4.958 169.125 Patient Iravel 1rt12 ProieL Wak% lih39) 19.611 10.696 I 1.747 10.722 5J98 35.038 47 Bcnefii •AvigXS Team l¢rAitts 29,124 133.71X> 130 73,404 38J75 8(144 Ith SUPPORT cosrs T•¢ls 351 P•8e 16

MESOTHELIOMA UK CHARITABLE INCORPORATED ORGANISATION NOTES TO THE CONSOLIDATED FINANCIAL ATEMENTS. conthined FOR THE YEAR ENDED 31 MARCH 2024 10. SUPPORT COS13. 2023 140W9 10.151 9h13 709 I2 129,965 8J(rJ 8J26 JO371 836 3.943 2.091 12 3.012 1.581 1th74 751 746 Légal and prof101 f Trave] expgw 513 6012 6.041 8244 1946 4.039 17,970 (746 3.677 630 U64 1132 25,] sJio 106 ITsuFwd and thIT(rs iOJ97 7J49 1576 Officc cxpcn5eS HeJ of nwsin8 2.159 S121 Pw17

MESOTHELIOMA iTK CHARrrABLE INCORPORATED ORGANISATION NOTES TO THE CONSOLIDATED FINANCIAL sfATEMENTS. ntInUed FOR THE YEAR ENDED 31 MARCH 2024 72( 31 MgJi 2023. For the y¢•r 31 2024. th¢¥¢ wls £191 Mr N M&dl th 19 OAobrr 2023 £50 phd to Ms L CY¢¢thon 18 J•wwy 2024. i& STAFF cosrd tru%tees for pl1& Ithreal ¥wJ LXKthIlliti8 th¢ 11¢1¢ of the ¢hity. I1* trrtai empknyet btfits of the key ofth¢ •NUrl0 £111415 (2W23: £115.617). 17 Page 18

ORGANISATIO NOTES TO THE CONSOLIDATED FINANCIAL ATEMENTS. tODthi•ed FOR THE YEAR ENDED 31 MARCH 2024 Is. 31 MARCH 2•23 828.427 585,932 1.414J59 177, 14264 177 14264 Inv¢sTrncni Kome Totsl 585 932 457 215.630 215,630 7Q865 76165 109230 271.913 118926 275J73 887,956 Patient Swrt Costs 384.868 Tots] INCOMFj(WDjTURrfr {469.404) 18&038 (283J66) RECONCILIATION OF FUNDS 125AIO8 13&464 1393.572 324 Py19

ORGANISATION NOTES TO THE CONSOLIDATED FINANCIAL STATEMENfs. e•*dn•¢d FOR THE YEAR ENDED 31 MARCH 2024 I& TANGIBIX FIxEDAET6. GROUP At l Awil 2Q3 Addition 291 768 At 31 2024 37¥1 54 37 l April 2023 Ch¥¢¢ foryar 17,115 19Jll 149 At 31 2024 At31 Marth 2024 12 At31 m2023 991 Compu fittttlgs At l April 2023 1787 29981 31768 At 31 Matth2024 37 DEPRECIATirA At I ApTiI 21)23 aw8¢ forye•x 1796 17.115 19?11 At 31 Mtrth2024 At 31 Mar¢h 2024 At 31 Marth 2023

MESOTHELIOMA UK CHARABLE INCORPOIIATED ORGANISATION FOR THE YEAR ENDED 31 hfARCH 21Tr24 17. At l Awil 2023 Additio Diswl$ Revaiuio 717.116 181.flJ8 (184133) 14J14 18Y¥S <18731) 751h20 371.153 (371.764) At31 March 2¢Tr24 791 31 Mar( 2024 Al 31 NlaTdL 21ll3 Lirtcd At l Awil 2023 717.106 I8108 (184,1331 14J14 189J45 (187hJl) 7311 371,153 (371,7 DIS[5 R£7Miuatioos At 31 Marth 2024 NET BOOK VALU£ At 31 M¥th 2024 791 At 31 Mxth 2023 731fj21 Co# or 31 Msch 2Q24 15rq¢Suty'. Sh*r¢3i• Va]uation in 2024 791 P88e21

ORGANISATION NOTES TO THE CONSOLIDATED FINANCIAL sfATEMENTS. comtlmued FOR THE YEAR ENDED 31 MARCH 2024 Company Numirr: 125416 Clw of sh•r i•• JiJ24 31.323 Pmfit foctheyear 35,735 6.136 5117 2023 14794 35.735 U17 6.136 733 80 735 228 19. 731 101.638 t4Mtinu&..

ORGANISATIOI¥4 NOTES TO THE CONSOLIDATED FINANCIAL ATEMEN13. eonthiued FOR THE YEAR ENDED 31 MARCH 2ill4 2023 14J76 16.079 4J87 2023 10,105 9Jll 9293 8.795 4J87 ial geujrity atbj ¢)thest&Yf4 16 195.896 at the yC&T (kfcffed irKome li £11.097 (2ts23.. £ll2131 The ¥¢ vwi¢d to tske p]a¢¢ iti 21. 2023 25,000 I.( Betwecn onB 8j fivc y Inmorg than fivcy 187 21 2¢J23 FLaaCts Inv&iknciiis 13,857 731.621 SflJ,624 195 7YI1176 6W116 Cwr¢Dt liabi]iiie4

MLSOTHKLIOMA UK CHARrrABLE INCORPORATED ORGANISATION NOTES TO THE CONSOLIDATED FINANCIAL STATEMETh. widn•ed At 31J24 AtiA 139J16 141376 1474 3S714 {109J95) (1474) 311 Project YJm4 149,1 149.183 24 (14173) Prvjcct Waks 19Jll 109 (L•¢ 139J16 747 712 (49&142) 186) (1O9J95) {lJ74) ProieaNI 149.183 projetts Pmiectwths 17*23 (1 (16.173) 173

MESOTHELIOMAUKCHARtrABLE INCORPORATED ORGAF41SATION NOTES TO THE CONSOLIDATED FINANCIAL 1mENTS. eoMthlleA FOR THE YEAR ENDED 31 MARCH 2024 Nel At 31.323 At 1.422 U•rtJtTlrt 1255,108 (469.4 785.7(X Tl.847 63,429 1.474 11.157 141.276 1,474 35.714 ProieL* NI 24JS7 863 (37) 542 2£826 11,739 Pmject w¢$ Mick W Memord Fu 324 1,1)216WI (1.437.421) (54,5S (469,404) 41W 27.T32 11.157 (353.437) (26358) 63,429 1.474 11.157 Anned Fow Grar Proj¢¢tNI pmiccL¥ Pmiect Waks 11.614 5Jl (11.651) (4.95 130 (3T) 542 585.¥J2 399 186.038 tr)ntsnu>L..

ORGANISATION NOTES TO THE CONSOLIDATED FINANCIAL STATEMENTS. eotlMed GrAts ••d doBdw f•r Pr•Jttt Pr•l¢¢tW4h¥ Mkk M•y MBoiixl Fwmd Arw•d forte¥ CTa•t )ie<¢ finished ezrty theye8r. Th¢obi¢x#i¥es ofth¢ were to". GrRts f•r R•*Arrh Grts foro¢h¢r r•thl pr•je

MESOTHELIOMA UK CHARrTABl INCORPORATED ORGANISATION NOTES TO THE CONSOLIDATED FINANCIAL sfATEMENfs. ¢thIed FOR THE YEAR ENDED 31 MARCH 21)24 EMPLOYEE BENEFIT OBUGAIION8 yable by the ¢harity ty the fuML At thet41% slxd drt¢£3ffj20 (2023: £3.053) to thc fimd and A L Co8t¢5 is J Tn of th¢ PW¢M ¢1 •yJ a • of ItwiTh MitLell li¢ll(¥S. thc pcrvjl £36128 (2023: £542941 w85 ¢1Vable by growj from Irwin NfjtchEII S)licitLWS £24. 12023: £24.() srworslLiP irome plus £iir28 (2023: £11970) ev¢n¢s M11kn0. Also. dwing ¢ost of £lJ47 {2023.. £16761 H Thil(L% is a Tnmee of the parw4 drity a pwthEr of Roy& vfthy Kinz s11¢11$. I)urix8 th¢ £28J58 {20ZI.. £14,6tKIl was receiv•Slc ty the gro frn Royd5 Withy Soli¢TIOTS £28.358 {2023: £116LK)1 S)1P inLXm¢ pbtsAbi (1123". 4fSXI}An D McKinley is a Tru5ke of thr Exe4Xrtive OffKex of the Britith Th)raci¢ Group {BTOG). Dwing BTOG paid rert to thE F4r¢rt of £4360 (2023: £4.1701 r¢ceived a[nOttS for rtth*8ed penSeS of£194 (2Q3: £1 JI 27. Th¢ cbwity is for thE un5llW cfk¥ts of wAuthr fimdr¥is tske rot a WAde r408e of P4F 27

ORGAIYISATION DETAILED CONSOLIDATED ATEmE1yr OF FINANCIALAcfivTriEs 2023 Donatioxs Legles 714576 2N913 5W51 133,616 6T1.322 lJ64366 1.414J59 166m6 165J12 174529 ITr.6( DAvidth rxeiv&l 10.025 14.264 Rental inC(e 4.170 1,610,457 EXPENDrruRE IW463 Vr writing Strirk and ottlirt givi fees 7J91 lJ17 2.675 27.670 IY3 17539 3.11• awitable WEb5it¢ socio] mtyjiu 17.173 3.110 1.532 1.928 49J76 3M49 43,111 241J 213,713 1.917

MESOTHELIOMA UK CHARITABLE INCORPOIL4TED ORGAMSATION DrrAILED CONSOLIDATED sfATEMENf OF FINANCIAL A1vITIEs FOR THE YEAR ENDED 31 MARCH 21ll4 2024 aitblt •¢tl¥l 171,452 160,030 13,888 iio 601700 3,344 11442 6.198 lJ95 13.787 4,958 169,125 P$10[1$ Pmvision for Set¥ic¢J IlJ37 649h60 sJoo 12442 Wthite soci81 m¢4ia Patient travel Prtiiect Walcs (Ih39) 578 19.611 11.482 10,696 11,747 10,722 5J98 35,038 1243 29,124 133.7CiI 130 73.404 38J75 Iffi71 Travd cxpcM¢s Bl¢fil advisors 47 84144 Head of ntsrsi08 1•8389 1.15W5 l J59.IXI Socio] seojrity PeThsitsth8 Ra ¥nd watrr 140J89 111151 gh13 4709 129.965 8507 iJ26 10,371 836 3.943 1091 1,290 3.012 1,581 2.160 6.041 Tcle 1,674 731 746 Le8al and professio1 fees Travel exKL8es 513 186.567

ORGANISATION DETAILED CONSOLIDATED ATEMENT OF FINANCIAL A[rIEs 2023 forward 190J60 186367 4,039 17.970 6,746 3.677 630 2264 2.132 25.)] 7J49 2J76 2,159 He4 of rMYsin8 25142 257283 94 l 839 233 I1314 (228.776) 173 Py30

Annual Report 2023-24

Contents

Foreword from the CEO

Liz Darlison

Objectives & Activities

1. Improving Outcomes & Experiences

Our Nurses

Nursing Posts

During the year we said warm welcomes and sad farewells to some of our nurses.

Facts & Figures

1,104

Legal panel:

Case Study

Anne Moylan

Highlight on Wales

Background

Network Cymru

Highlight on Wales

Key

Moving forward

Highlight on Northern Ireland

The Rodgers Family

Highlight on Scotland

Improving Services

Network Goals and Developments

Diagnostics

Treatment Advances

Clinical Trials and Research

Support Group

Patient Support & Information

Information Packs

Sharing Knowledge and Expertise

Network Newsletter

Education Events

Fundraising

Patient Case Study

Roger Tweed

Here Roger shares his journey with mesothelioma and the pivotal supporting role that Mesothelioma UK has had throughout.

Benefits Support

Benefits Advisors

Facts & Figures

Support Line

What does this show us?

What does this show us?

What does this show us?

2. Research

Introduction

Active Grants

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

Tipping the balance: pro-and anti-apoptotic proteins as determinants of radiation resistance in mesothelioma

Project Aims:

EXTRA-Meso feasibility study – EXercise TheRApy in Mesothelioma feasibility study.

Completed Grants 2023-24

Health & Lifestyle of Patients with mesothelioma (HELP-MESO)

MINNOW Investigating the Mental health Implications of a mesothelioma diagNosis and developiNg resources to Optimise Wellbeing

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

Update from the Mesothelioma UK Research Centre

Highlight on a Research Centre Study

Research summary

3. Information

Example of our leaflets

Our Communications

The following information can be found on our website.

Blog pages

News pages

Our magazine

Recipients on our mailing list

1,672

Social media

4. Awareness

Don’t Let the Dust Settle

Cost-Benefit Analysis

Mesothelioma and the Armed Forces

Department of Work and Pensions (DWP) Service

Coroners Project

MAGS: The Healthcare Staff Mesothelioma Asbestos Guidance Study

Future Plans

5. Sustainability & Fundraising

Overview