2021-03-31-accounts

Group Accounts and financials for Mesothelioma UK for the period ending 31 March 2021

Mesothelioma UK Registered Charity Number: 1177039

Registered Address: Unit 116, Greenacres, The Sidings, Leicester, LE4 3BR

Mesothelioma UK

Annual Report 2021

Contents

Contents
Objectve and Background	5
How We Work	6
Actvites and Achievements	7
Patent Support	8
Awareness	16
Research and Audit	19
How We Raised Funds	23
How We Raised and Spent Our Money	25
Governance	27
Financial Review	28
Looking Forward	30
Financial Statements	35

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Mesothelioma UK

Annual Report 2021

Foreword

Despite the challenges, disruption and uncertainty caused by the Covid-19 pandemic we are delighted that this annual report demonstrates what a responsive and effective year Mesothelioma UK has had.

In this year we saw the charity’s first Nursing Strategy published and, with the help of several partners and generous donations, we were able to appoint the thirtieth Mesothelioma UK Clinical Nurse Specialist. A nurse team leader was appointed for the Scottish Mesothelioma Network and Project Cymru was launched to start to address the challenges voiced by the Welsh mesothelioma community.

Throughout this year the nursing team did all it could to meet the new and unprecedented Covid-19 related needs and challenges of cancer patients. In addition, like all NHS workers the nurses supported their NHS trusts in many different ways. We had team members being re-deployed to intensive care units, others were allocated to inpatient ward areas, or manning Covid-19 telephone services and vaccination clinics. The nurses did all they could to care for their patients and support local health care services. Some, like many NHS workers, have suffered ill health themselves. Understandably we are beyond proud of every one of them.

The Covid-19 pandemic meant that the charity had to adapt to maintain contact with our community. With the help of our IT provider and communications team, the operational team was quickly able to work remotely, and our education, information and support services adapted to virtual platforms. Our patient and carer day in October 2020 had over 200 people register, we held Facebook Live sessions throughout the year to share important information and guidance quickly. Support groups went fully online and new groups were launched. We held a regular quiz and launched the very successful monthly Mesothelioma Matters webinars.

The charity’s Benefits Advisors adapted to work fully remotely and were able to continue supporting patients with their benefit and compensation needs, securing over £1.9m in lump sum payments alone. Mesothelioma UK’s first ever Legal Panel was launched at the start of the year; panel members have been extremely supportive of all the new fundraising initiatives the charity has held and the regular bi-monthly meetings held with the panel have been very informative.

The charity has managed to continue with plans from the Research and Audit Strategy. The Mesothelioma UK Research Centre – Sheffield opened in July 2020 and in January 2021 the charity’s first independent grants were released. The third National Mesothelioma Audit (NMA) funded by Mesothelioma UK was published in May 2020 and plans to secure the ongoing development of the NMA got underway. In March 2021 following the success of the Supporting our Armed Forces Project and publication of the MiMES research, the charity was honoured to be shortlisted and then awarded the HSJ Military and Civilian Partnership Award.

Keeping pace with the charity’s growing work necessitated an expansion in the operational team. We have welcomed new team members in projects, finance and fundraising. Governance and structure are continually evolving to compliment the charity’s operations; a second trustee with lived experience was appointed and we also welcomed Professor Nick Maskell as the new Chair of the Board. Of course, welcoming a new chair meant that Professor Mick Peake, who has been with the charity since the beginning, sadly stepped down. Mesothelioma UK would not be where it is today without Professor Peake’s involvement, his commitment and belief in the vision have been invaluable and we will always be grateful to him.

It has been our privilege and pleasure to lead Mesothelioma UK over this most challenging year. The charity’s trustees and operational team have managed the organisation with flair and grit which has enabled projects and services to speedily adapt, ensuring Mesothelioma UK was able to do all it could to meet the needs of the mesothelioma community.

As Chair of the Board and CEO we would like to say how extremely grateful we are to all those that have supported the charity. Your donations, fundraising and contributions, however big or small have enabled us to keep pace with need, thank you.

We would like to congratulate and thank the whole Mesothelioma UK team; the trustees, nurses, advisory board, ambassadors, and the operational team for all you do every day to ensure Mesothelioma UK can be there and respond when people need us most.

Professor Nick Maskell, Chair of the Board of Trustees and CEO Liz Darlison MBE

Objective and Background

Mesothelioma UK is a national specialist resource centre, specifically for the asbestosrelated cancer, mesothelioma. The charity provides specialist mesothelioma information, support, and education, to improve care and treatment for all UK mesothelioma patients and their carers.

The charity integrates into NHS front line services to ensure specialist mesothelioma nursing is available at the point of need. This is achieved through a growing network of specialist mesothelioma nurses, regionally based in NHS hospitals but funded by Mesothelioma UK.

The charity was launched in 2004 with initial financial support from Macmillan Cancer Support and later from the Mick Knighton Mesothelioma Research Fund. We became an independent charity in 2009 and changed status from a Charitable Trust to a Charitable Incorporated Organisation in 2018.

The objective of the charity is to advance the health of mesothelioma patients, by funding specialist nursing posts, sponsoring research, advocating for patients, and supporting access to treatment and clinical trials.

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Mesothelioma UK

Annual Report 2021

How We Work

The charity has recently organised its activities into ‘pillars’:

~~Administraton Income Generaton Patent Support Informaton Research and Audit~~

~~Awareness~~

The administration and income generation pillars are internal and represent the work done by our dedicated operations team to ensure the charity is effective at delivering on its charitable aims.

The charitable work delivered by the organisation is divided into the remaining four pillars.

Patient Support which comprises much of our activity and spend. The flagship support we provide to patients is the funding of Mesothelioma Clinical Nurse Specialists (MCNS) in NHS trusts across the UK. The charity also provides a freephone information line number that connects patients who need support with our specialist nurses. Other patient support services include the provision of patient travel grants and the funding of specialist benefits advisors.

Information encompasses all the charity’s accredited patient information leaflets, as well as the information provided through our website.

Research and Audit includes the funding of the National Mesothelioma Audit, the Research Centre at Sheffield, and our research grant programme.

Awareness which is often in partnership and collaboration with other organisations to raise the profile of mesothelioma and awareness of the dangers of asbestos.

The trustees ‘have regard’ to the Charity Commission's guidance on public benefit. The main activities undertaken to further the charitable purposes for the public benefit are as above.

Activities and Achievements

The coronavirus pandemic beginning in March 2020 shaped the course of the year hugely, as both our operations team and our wider team of funded nurses, benefits advisors and researchers had to reassess how they would operate under restrictions.

Despite the enormous challenges, Mesothelioma UK made a significant difference to the lives of people with mesothelioma throughout the year.

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Mesothelioma UK

Annual Report 2021

Patient Support Our Nurses

Thanks to a generous donation from HASAG Asbestos Disease Support, Angela Goldfinch joined us in Essex.

In January 2021, the charity reached an important milestone of funding 30 Mesothelioma Clinical Nurse Specialists.

Toni Fleming, based in East Kent, joined with thanks to the Mavis Nye Foundation for its support.

The nursing strategy, published in June 2020 and available to read at www.mesothelioma.uk.com/ournurses/ outlines our ambition to reach 38 funded Mesothelioma Clinical Nurse Specialists by 2023. This would allow us to support patients in every Cancer Alliance in England and in Wales, Scotland, and Northern Ireland.

An adopted (not fully funded) post was created in the Humber, Coast and Vale Cancer Alliance and is shared by Ian Collins and Carole Scott.

Thanks to a group of law firms coming together to support mesothelioma patients across West Yorkshire, Simon Bolton, who has previously been based in Harrogate, became a full time Mesothelioma Clinical Nurse Specialist in Huddersfield.

During the year, despite the huge pressure faced by frontline workers in the NHS, we were able to fund five additional posts across the UK.

In Scotland we also appointed a Team Leader, Carolyn MacRae, who joined as an MCNS in 2017.

Susan Smyth joined us in Dundee, previously funded by MacMillan Cancer Support as part of the Scottish Mesothelioma Network.

Joanne Anderson joined in Sunderland to provide much needed support across the region to our existing Team Leader based in Newcastle.

Supporting the nurses to go digital

Our fantastic team of nurses had to grapple with huge changes to their daily practices when the Covid-19 pandemic took hold in early 2020. Through innovation and huge co-operation between teams our nurses were able support 1,173 mesothelioma patients and their families throughout the year.

Numbers of patients were down compared to last year, and this reflects the lower numbers in cancer pathways across the UK. Through our collaborations with other charities and pharmaceutical companies we have been raising awareness that cancer does not stop for covid, and in the period after the year end referrals began to increase again.

Case Stud - South West y

Christine Jones is our nurse in Plymouth

“Meanwhile, patients were still coming through the pathway, and we had several newly diagnosed. We realised that integrating new patients into an established virtual group was going to be daunting, so smaller zoom meetings were set up for new patients with similar industrial backgrounds and once they were happy with each other they could also join the bigger group, and/or keep their smaller group.

“As nurses we are used to thinking on our feet and problem solving, but a worldwide respiratory pandemic and a cohort of patients with compromised lungs tested the resolve of every one of us. In the Peninsula (Devon and Cornwall) our immediate priority was protecting our patients, but also supporting them as it became increasingly obvious that isolating from the rest of society was going to be the best way to avoid transmission of a potentially deadly virus.

“Inevitably, in that time span several patients succumbed to their disease and we were keen to support the survivors, so also organised a bereavement virtual support group which was subsequently picked up and facilitated by a widow who has been steadfast in her support of her peers, and even now the group meets both virtually and face-to-face for coffee.

“The immediate effect of lockdown was to remove the peer support that so many of them relied on, so novel ways had to be implemented to ensure support was still available. Unfamiliar words like ‘Zoom’ and ‘MS Teams’ suddenly became everyday vocabulary as we encouraged our patients and carers to get online. The trustees of the support group and I contacted all the patients to offer a welfare check and during that conversation we established what hardware and software would be required to facilitate joining a virtual meeting.

“As we come out of lockdown and things are slowly getting better, we can look back on those early frantic months and be reassured that we did as much as we could to support as many as we could, albeit we were assisted by the low level of cases throughout the two counties. My overwhelming hope for the future is that we never have to face a pandemic of this nature again.”

“We then sourced cameras, smartphones, and tablets for those who needed them, covered many miles dropping off equipment, subscribed to Zoom and set about holding weekly virtual meetings encouraging people to simply ‘drop-in’ just to let us know they were ok.

"I was also keen to hold independent meetings with the trustees who were also isolating, whilst offering virtual and telephone support to all the members of the group. It was important that they also felt supported. The meetings were enthusiastically accepted and became very much a social drop-in for old friends who were really interested in the minutiae of each other’s days.

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Mesothelioma UK

Annual Report 2021

----- Start of picture text -----
Our Nurses
Total armed
forces referrals
Total number
73
of patients
1,173
Total number of
follow up contacts
all methods
Total face to
face follow ups 27,271
1,285
Total number of
support groups
attended Number of MTD
meetings attended
265
794
----- End of picture text -----

Benefits Advisors

Sarah Thomas, our benefits advisor in the North East grappled with low referrals at the beginning of the pandemic and had to develop a system to support clients remotely and often at a later stage of diagnosis.

“What was clear when referrals picked back up again was that clients had significantly more progressive disease than usual at the time of referral. In fact, many had only been diagnosed with mesothelioma once they had presented at A&E with severe symptoms. They had been actively avoiding seeking medical advice due to the Covid-19 pandemic until the symptoms were too severe to ignore. An above average number of clients had been deemed too frail for palliative chemotherapy due to the progression of their disease.

“With most clients, I was able to find a way to advise and support them with their benefit and lump sum compensation applications despite the restrictions on home visiting. Clients and I relied more heavily than usual on family members to help facilitate communication and get the information required. For one client I liaised between himself and his daughter who lives in France.”

Despite the challenges faced, our benefits service continued to provide enormous assistance to 150 patients throughout the year.

Facts & Figures

Total number of clients

150

Lump Sum Payments Identified

£1,881,261

Estimated Annualised Benefit

£1,616,540 Number of Armed Forces clients 1

Estimated Annualised Benefit–Armed Forces

£4,636

Veterans UK Lump Sum

£140,000

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Mesothelioma UK

Annual Report 2021

An Online Community

When the first lockdown was announced, as well as our concerns about potential delays to diagnosis and treatment for mesothelioma patients, what immediately struck us was the sudden removal of a community of support for people living with a diagnosis of mesothelioma. Our teams sprang into action, and we set about creating an accessible online community of support that would help ease concerns over covid restrictions as well as reduce isolation.

“Thanks [I’m] newly diagnosed trying to catch up and understand what is out there for support, feeling vulnerable”

A mesothelioma patient

On Facebook, where we have the most supporters, we introduced a live Q&A session each week with one of our senior nurses. These sessions covered the crucial issues people were facing at the time such as the advice to shield, delayed access to scans, dealing with healthcare professionals online instead of at the hospital and much more.

They created a community where mesothelioma patients across the UK could submit questions and find other people in the same boat as them who were also tuning in each week. These live sessions ran weekly from March to September and then as restrictions gradually eased, they were moved to monthly and have remained a monthly feature. During the year, the live videos had 28,512 viewers joining us from across the UK.

Feedback from the mesothelioma community has shown us how appreciated these sessions have been.

Information Line

Alongside our nurses, providing a freephone information line is our core service to patients. In recent years we have seen the numbers calling the information line decrease as our team of nurses expands, as does access to the internet and the information available on our website.

With the onset Covid-19 we saw a drastic change to the numbers and types of calls to the information line. Overall, calls were down in the year, in particular from healthcare professionals. This is indicative of the pressure that all staff in the NHS were under during the first and second waves of the pandemic, when many staff were redeployed to Covid-19 wards or to ICU.

We took 544 calls during the year, a decrease of 68 per cent on the year before. However, another striking change was in the nature and duration of the calls received. Calls during this year were more complex and lasted longer on average. Routine questions about availability of clinical trials or symptom management were replaced with questions about shielding, guidelines and treatments being stopped.

Our information line team ensured throughout that they kept up-to-date with the ever-changing guidance for clinically vulnerable people. As ever, there were many calls from the relatives and carers of those diagnosed with mesothelioma. However, the calls this year often focused on their inability to accompany their loved one to appointments and were filled with the questions they would have liked to ask at the hospital. Unable to attend the appointments, they often phoned the information line instead.

As a recognition of the sharp increase in the complexity of the calls we introduced a new metric, an intervention level, and will be able to accurately monitor the variations in complexity going forward.

Our Facebook live sessions helped to get basic information about the restrictions and the advice for clinically vulnerable out and the topics covered were informed by the questions received that week on the information line.

The information line continues to be a crucial service for patients who need access to a specialist nurse for support and advice.

Patient Travel Grant

Patient and Carer Day Goes Virtual

Supporting patients to access clinical trials is something we feel strongly about at Mesothelioma UK.

In October 2020, our 15th annual Patient and Carer Day conference was held, and for the first time ever it was held online.

212 people registered to attend the conference online and the speakers included Jack Aldane from the asbestos campaign Airtight on Asbestos, Professor James Spicer from Kings College London and Professor Alan Melcher from the Institute of Cancer Research. The full programme can be read at www.mesothelioma.uk.com/pcd20/

Unsurprisingly however, Covid-19 halted many trials during the year and therefore the number of patients supported, and the total amount granted are significantly lower than the previous year. Despite the challenges with accessing trials, we were able to support 23 patients, providing a total of just over £12,000 in travel grants.

Three of our dedicated nurses held remote ‘breakout rooms’ to try and capture some of the networking and peer-to-peer support that usually characterises our flagship event. Despite the challenges of the virtual event the day was enjoyed by all; the opportunities provided to connect with patients and clinicians were much appreciated.

The trials we supported are

~~ATOMIC~~

~~BEAT MESO CONFIRM MARS2~~

A big thank you to our corporate sponsors for the event, without whom we would not have been able to raise just under £6,000 from the day.

~~PROMISE~~

Highlight on Scotland

The Scottish Mesothelioma Network was launched in 2019. Working in partnership with Macmillan Cancer Support, Mesothelioma UK, Action on Asbestos and NHS Scotland, the Network comprises clinicians from across Scotland who collaborate to share best practice and provide high quality clinical care. The team also prioritises access to clinical trials for all patients regardless of their geographical location and provides a range of information, support and education services. Since 2019 the Scottish Mesothelioma Network has grown and there are now six mesothelioma clinical nurse specialists across the country, based in Glasgow, Aberdeen, Dundee, Edinburgh, and Inverness.

of national QPIs (quality performance indicators) which commit individual health boards to monitor and deliver on key metrics, development of a monthly virtual support group (facilitated by Maggie's Highland) and creation of bespoke information services, including patient information packs capturing issues unique to Scotland, and a national network website: www.scottishmesotheliomanetwork.scot.nhs.uk/ and twitter feed @scotmesonet. Another major achievement was the appointment of our first MCNS Team Leader for Scotland. Carolyn MacRae was appointed to this role in October 2020.

In recognition of the sucess of the network, the team was delighted to win the Innovation Category at the recent Scottish Health Awards 2021. See here for details of this www.scotshmesotheliomanetwork. scot.nhs.uk/scotsh-health-awards-2021/

Key achievements of the team include establishment of a weekly national multi-disciplinary team meeting (MDT) where patients from across the country can be discussed at any stage of their journey, development

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Mesothelioma UK

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Project Cymru was launched in October 2020 in response to the urgent need to enhance mesothelioma services in Wales. Sarah Morgan, Mesothelioma UK Senior Clinical Nurse Specialist (CNS) has been the sole Mesothelioma CNS in Wales since 2017 and is leading the project. Wales has a sparse population within a mostly rural setting, leading to a lack of local specialists and specialist services, as well as long distances and limited infrastructure, impacting significantly on equitable access for patients. As a devolved nation, there are also specific challenges unique to Wales, in that the existing guidelines available in NHS England and NHS Scotland do not apply to NHS Wales.

To ensure an equitable patient pathway in Wales, it is key that we develop national guidelines and policy for the management of mesothelioma. Sarah has been working with all seven local Health Boards, involving 10 local lung MDTs; the NHS Welsh Health Specialised Services Committee (‘WHSCC’); the NHS Wales Health Collaborative (including the Welsh Cancer Network); the Senedd;

and many other stakeholders including Asbestos Awareness and Support Cymru (‘AASC’), specialist mesothelioma solicitors, and patients and their carers/ family representatives.

The aim of Project Cymru is to create a ‘hub-and-spoke’ network to enhance mesothelioma services across Wales, to ensure that all patients receive the standards of care outlined by the British Thoracic Society and UK Mesothelioma Alliance, including: that all patients have access to a specialist Mesothelioma CNS; all patients are discussed by a specialist Mesothelioma MDT; and all patients have equitable access to the best treatment, care and clinical trials available.

Key achievements in year one included conducting a patient needs analysis, an audit of local lung MDTs across Wales, as well as beginning and developing conversations about a consultation for a National Optimal Pathway for mesothelioma. Discussions are also underway to deliver inaugural Mesothelioma Cymru Network educational events for a Patient and Carer Day and a Professionals Day in 2022, as well as translating key information leaflets into Welsh and creating a dedicated page for Wales on the Mesothelioma UK website.

Mesothelioma UK Project Cymru has much to achieve over the next year and beyond.

Launching Video Content

April 2020 saw a huge shift to digital channels across the UK due to the Covid-19 pandemic. This opened an opportunity for Mesothelioma UK to start to address our audience and relay information online in ways not previously explored.

Although the median age for a patient with mesothelioma remains 70+, people’s comfort levels with accessing information online increased dramatically.

In April 2020 we began with live Q&As that addressed the immediate need people had for information on shielding, PPE, and other ways to protect themselves from coronavirus and how it may affect their cancer treatment.

We then began releasing interviews that focused on shedding light on different areas of the mesothelioma experience, from a surgeon focussing on the future of surgery in mesothelioma, a patient speaking about their experience of long-term survival and even a pathologist giving us an insight into how they assist with a diagnosis of mesothelioma.

Since April 2020 we have released 25 videos and total views are over 23,520.

Mesotheliona Matters

Our quarterly magazine continued to be published throughout lockdown, with only one issue published online due to the disruption caused by Covid-19. However, our e-circulation list jumped from 901 in March 2020 to over 1,500 by the following March.

Our printed circulation list has decreased as many people are opting only to receive the magazine online, and we posted out approximately 5,000 copies of the magazine during the year.

Our Spring 2021 issue celebrated the amazing work of our nurses during the pandemic, with a striking cover of Kate Slaven, our funded MCNS at Papworth NHS Trust.

Mesothelioma Matters Webinars

In November 2020 we launched a new series of online webinars. The Mesothelioma Matters webinars are a deeper dive into some of the issues we cover in the magazine, including current mesothelioma research, surgery, and treatments for mesothelioma. The presenters are experts in their subjects and the webinars have been attended by other medical professionals and patients who want to stay informed of the latest developments.

The webinars are held on the last Monday of every month and will continue into 2021.

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Mesothelioma UK

Annual Report 2021

Awareness

Action Meso – Bringing the Mesothelioma Community Together

Mesothelioma UK is a member of the UK Mesothelioma Alliance (UKMA), a group of notfor-profit organisations with a common aim – to advocate for patients with mesothelioma.

2020 provided a unique opportunity to reimagine how Action Mesothelioma Day happened across the UK. Action Mesothelioma Day (AMD) is a well-established day of action across the UK with local and national charities holding events to raise awareness of mesothelioma and pay tribute to those we have lost to this cancer.

In 2020, under the umbrella of the UKMA, all the members of the UKMA collaborated on a shared virtual event. The speakers were Sarah Morgan, Mesothelioma UK CNS, Mavis Nye, patient and ‘Meso Warrior’, Professor Sanjay Popat, Consultant Thoracic Medical Oncologist at the Royal Marsden, and David Gold from the Institute of Occupational Health and Safety. The day was chaired by our very own trustee, Dawn McKinley.

Mesothelioma UK went live shortly before and after on Facebook Live, to an audience of 750 people from the mesothelioma community to introduce the UKMA content.

#Do It for Yourself Campaign

Campaign Reach

With cancer referrals dropping across the country, Mesothelioma UK was approached by the pharmaceutical company MSD to collaborate

Pieces of coverage

pharmaceutical company MSD 247 to collaborate on a campaign to raise awareness of the symptoms of lung cancer. The campaign, ‘Do It for Yourself’, launched in November 2020 to help address the impact Covid-19 has Million had on people presenting with lung cancer symptoms and encourage people to contact opportunities their GP (General Practitioner) if they have to see been experiencing a continuous cough and/ or ongoing breathlessness. In addition to Mesothelioma UK, The Roy Castle Lung 17

In addition to Mesothelioma UK, The Roy Castle Lung Cancer Foundation, Northern Cancer Alliance, Greater Manchester Cancer Alliance, Lung Cancer Nursing UK, and UK Lung Cancer Coalition all took part. The first phase of the campaign launched across Greater Manchester, the Northeast and North Cumbria with images on buses and bus shelters, pharmacy bags, slots on local radio and in newspapers and two wellknown TV doctors Dr Hilary Jones and Dr Amir Khan supporting the campaign as spokespeople. Online The campaign aimed to highlight the importance of coverage visiting a GP if experiencing a persistent cough and to help to dispel public concerns. A second wave is planned for summer 2021. 12,971,258

The format was such a success that it will be repeated in 2021.

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#Nurses Matter Campaign

The campaign launched as a parliamentary event held in March 2020 and is an ongoing campaign which aims to raise the profile of lung cancer clinical nurse specialists, highlighting the value they provide for patients, families, and the healthcare system as well as advocating for a formalised professional framework for this critical, but often under recognised role.

Two pieces of digital content were created (a video and an animation), delivered through UK social channels (Twitter, Facebook, Instagram and LinkedIn). The video and animation aimed to raise the profile of lung CNSs (including mesothelioma clinical nurse specialists), providing the practical demonstration of the value CNSs bring to individual patients, their families, and the wider healthcare system, as well as providing a platform for nurses themselves to share why they became nurses, to inspire the next generation of clinical nurse specialists.

You can hear the voices of some of our amazing nurses and view the videos created at www.msdconnect.co.uk/msd/oncology-nurses/index.xhtml

Cancer 52

Cancer 52 is an alliance of rare and less common cancer organisations who work collectively to improve outcomes for patients with these cancers.

Mesothelioma UK has been a member for over five years but during the Covid-19 pandemic began to take a more active role. Throughout the year we have worked alongside 100 other organisations to lobby the government and raise awareness of less common cancers.

Do You C Us? campaign

The ambition of the campaign was to raise awareness of the challenges facing people living with rare and less common cancers, highlighting the need for change to address them and amplify the collective voice of those living with rare and less common cancers and target policy makers, parliamentarians, and the media.

• Diagnoses of early-stage cancer in England appear to have fallen by 33 per cent in the first wave of the Covid-19 pandemic in 2020, early figures suggest

• The total number of people living with a rare or less common cancer in England was estimated to grow to around 1.25 million people in 2020, 1.63 million in 2030, and 2.06 million in 2040

• In 2017, 47 per cent of new cancer cases were rare and less common cancers as defined by Cancer52

• Approximately 144,600 people in England are diagnosed with a rare and less common cancer each year

• People with rare and less common cancers are more likely to be diagnosed via emergency presentation compared with the four most common cancers

You can visit the campaign website at www.doyoucus.org.uk

One Cancer Voice

We continued our efforts to ensure that cancer was not left behind during the Covid-19 pandemic by joining our voice to that of over forty other cancer charities including Cancer Research UK, Macmillan and Breast Cancer Now.

The group has collaborated on several open letters to both the public and to the government, calling for action on cancer and to ensure that the backlog of cancer cases caused by Covid-19 was addressed quickly. The work of the group was picked up by the BBC and we were invited to participate in a consultation ran by the All-Party Parliamentary Group for Radiotherapy as part of the Government’s plan to #CATCHUPWITHCANCER

Help Us Help You Campaign

As access to NHS services decreased during Covid-19, NHS England and NHS Improvement, and Public Health England launched the ‘Help Us, Help You’ campaign - ‘Accessing NHS Services’ launched in October 2020. We wanted to echo and endorse the campaign which sought to address the barriers that are deterring patients from accessing NHS services.

This first phase focused on encouraging the public to contact their GP if they are worried about a symptom that could be cancer. The NHS introduced a range of measures to ensure the safety of patients, including Covid-secure wards, and the ‘Help Us, Help You’ campaign to reassure patients that they can receive medical care safely with the message that ‘Your NHS is here to see you, safely.’

Starting a Dialogue with Politicians and Policy Makers

We are passionate about supporting mesothelioma patients in making their voices heard at the highest level and supporting the charity’s purposes. With this in mind we have started lobbying important matters patients have raised with us to the government. We hope to raise awareness of the issues around mesothelioma and challenge the status quo.

Over the year we engaged with members of the House of Lords, the Department of the Secretary of State, individual MPs offices, the Ministry of Defence, the Medicines and Healthcare products Regulatory Board and others. Some of the topics we covered included provision of chemotherapy at home for patients, a consultation on the Terminal Illness Welfare Bill, raising awareness of mesothelioma within the Armed Forces community and drawing attention to the increasing number of healthcare workers that are being diagnosed with mesothelioma.

Research and Audit

In early 2020 we launched our first Research Strategy. The strategy sets out our vision for mesothelioma research over the period 2020 – 2023, including spending one third of our income on research. It outlines our commitment to working in partnership with other organisations by establishing a Research Centre and continuing the work of the National Mesothelioma Audit. In 2020/21, despite organisational challenges posed by Covid-19, we have managed to achieve an extraordinary amount.

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Launching the Research Grants

The applications will be assessed in two stages; first by the members of RASC who will create a shortlist. Shortlisted applicants will then be invited to submit a full application for external peer review. Final decisions will be announced in December 2021.

Previously, we have collaborated with the British Lung Foundation and Lung Cancer Nursing UK to fund high quality research projects. In 2020 we decided to directly award research grants as part of our Research Strategy 2020 – 2023.

As part of our commitment to funding world-leading research, we are members of two bodies: the Association of Medical Research Charities (AMRC) and the National Institute for Health Research (NIHR).

To ensure the highest level of governance when awarding research monies, we successfully applied to the Association of Medical Research Charities (AMRC). The AMRC has set out rigorous standards for peer reviewing research applications which we have adopted.

The AMRC Open Research Platform allows for rapid author-led publication and open peer review of research funded by AMRC member charities. Further information can be found on their website www.amrcopenresearch.org

In 2020, our Research and Audit Scientific Committee (RASC) was also established. The role of RASC is to award research grants on behalf of Mesothelioma UK and ensure that we are delivering on our research strategy. The committee is made up of researchers, healthcare professionals and people living with mesothelioma and/or their carers.

Membership of the NIHR ensures our funded research studies are automatic eligible for NIHR Clinical Research Network Study Support Service, providing a valuable resource to our researchers.

In January 2021 we opened the call for grants, focussing on the following themes:

Research Centre National Mesothelioma Audit Sheffield

Mesothelioma UK has funded the National Mesothelioma Audit since 2016. The most recent report published was in May 2020 for the audit period 2016-2018.

In July 2020, the Mesothelioma UK Research Centre was established at the University of Sheffield, funded by Mesothelioma UK. The Research Centre is based in the Division of Nursing and Midwifery at the Health Sciences School.

Highlights include improvements in survival, clinical nurse specialist assessment, pathologic subtyping, and multidisciplinary team (MDT) discussion, with note of a doubling of referrals to the national peritoneal mesothelioma MDT since the last report published in 2018.

The aim of the Mesothelioma UK Research Centre – Sheffield (MURC-S) is to conduct a portfolio of robust and rigorous research with a reputation for excellence. The goal is for the research to benefit the care of people diagnosed with mesothelioma and their families.

Continuing to collect this national data is a key priority for Mesothelioma UK going forward. Across the UK, at cancer alliance and organisation level, variation in active treatment and outcomes persist. The aim is that data from this report will be used by all those responsible for commissioning and providing mesothelioma services to improve the quality of care for all people diagnosed with this asbestos cancer, moving forwards.

The Centre is led by Professor Angela Tod and Dr Claire Gardiner and has a team consisting of four researchers, an administrator and two PhD students.

The funding provided by Mesothelioma UK is for an initial term of three years and the focus will be on research that explores the mesothelioma patient and carer experience. The team have begun a Research Prioritisation Exercise to help them identify unanswered questions and to prioritise areas of importance.

As of the publication of the report in May 2020, the National Mesothelioma Audit is no longer under contract. As we look forward to the next year, we will be publishing a call for tender for the contract to deliver the audit.

The lived experiences of mesothelioma patients and carers is at the core of all the work done by the Centre, and they host a dedicated Patient and Public Involvement Panel.

1. Improving the patient diagnostic pathway for mesothelioma

2. Improving symptom control in mesothelioma

3. Improving the Quality of Life (QoL) in patients with mesothelioma

4. Evaluating an app or other technology for use in patients with mesothelioma

Covid Surveys

Recognising the impact that COVID-19 was having on patient and carers' mental and physical wellbeing, in May 2020 we designed and delivered a short COVID-19 Impact Survey to mesothelioma patients.

The survey was accessible online, and results confirmed anecdotal evidence that treatment has been paused or altered and that patients were worried about being forgotten. The full report can be read - www.mesothelioma.uk.com/covid survey/

Throughout the pandemic we have used the results of this survey to provide backing when calling on the government to provide increased support and guidance to vulnerable cancer patients. The results of this survey were submitted as written evidence to the Parliamentary Select Committee for Health and Social Care.

In September 2020 we follow the initial survey with a survey of our Mesothelioma Clinical Nurse Specialists. Twenty responses were received; they described in detail the challenges, fears and major concerns that have been directly derived from their experiences of caring for people living with mesothelioma through the Covid-19 pandemic. The full report can be found at www.mesothelioma.uk.com/past-research-projects

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Research Reports Published During the Year

Mesothelioma UK has written to the Secretary of State for Health and Social Care as well as contacted the Shadow Secretary for Health to request assistance in implementing the recommendations of the report. Work will continue into 2021 on the impact of the MAGS study.

The Gendered Experience of Mesothelioma Study (GEMS) was published in November 2020. The research was conducted by the team at the University of Sheffield and explores the experiences of people with mesothelioma, their family carers as well as the various staff with whom they come into contact. Read the full report at www.mesothelioma.uk.com/gems

There was widespread media coverage of the publication of the report, with articles in Ethical Marketing News, Impact Financial News, Lexology and Cancer Nursing Practice. The report itself was published in two well respected medical journals, the European Journal of Oncology Nursing, and the European Respiratory Journal. Over the coming year the operational team will take forward the recommendations of the report and engage with the wider community to disseminate the results and ensure that our research leads to real impact and improved experiences for those diagnosed with mesothelioma.

The Military Experience of Mesothelioma

Study (MIMES) was published in August 2020 and you can read the full report at www.mesothelioma.uk.com/ mimes

Healthcare Workers and Mesothelioma: Experiences of Presentation, Diagnosis, Treatment and Care: Healthcare Worker Mesothelioma Asbestos Guidance Study (MAGS) study was carried out by researchers at the University of Sheffield and supported by donations from the family and friends of the late Dr Mags Portman, a pioneer in the fight to prevent and control HIV, who died of mesothelioma in 2019. The report was published in September 2020 and can be read at www.mesothelioma.uk.com/mags

It explored the prevalence of mesothelioma among British Armed Forces veterans, to understand their experience and health/support needs, and to identify how health and legal professionals, and support agencies can best meet the needs of this group.

The report was published in the European Journal of Oncology Nursing and was there was media coverage in the Medical Express.

The publication of the report resulted in significant media coverage, with articles in the Nursing Standard, Cancer Nursing Practice, Personnel Today and Occupational Health Today.

In January 2021 the shadow Minister for Defence, Stephen Morgan posed a parliamentary question to the Ministry of Defence based on the results of the research.

How We Raised Funds

Shift to Digital

In March 2020, two weeks prior to the year end, our entire operations team moved to working from home and the world of community fundraising was thrown into disarray. Historically, Mesothelioma UK has raised most of its funds from individual fundraisers - those dedicated people who take it upon themselves to hold a coffee morning at their town hall, or to run miles across the country, or climb to dizzying heights doing the Three Peak Challenge. Overnight, all of those planned events had to be cancelled. Collectively, we all had to make the shift to digital fundraising, and we are proud to be able to say that the mesothelioma community supported us every step of the way.

Funraisin is an interactive platform for fundraisers. It allows charities to take donations, create leader boards and run challenges. Funraisin was offering its platform free of charge to charities whose fundraising income was severely affected by Covid-19. We launched the Move for Meso campaign using Funraisin in May 2020. 28 fundraising pages were set up and over £8,000 raised.

20 for 20

In September 2020 we partnered with 19 other charities for a major new fundraising campaign. Led by the team at Sarcoma UK, all 20 charities work with people diagnosed with rare and less common cancers.

Our first major fundraising appeal in the wake of the pandemic was our very successful Covid-19 Appeal. Our whole team (from operational staff to trustees) took part in a social-distancing walk challenge. Each day for five weeks we pooled our steps to reach 5,000 by the end of the challenge. Although we couldn’t meet up due to the lockdown, this kept us connected and was a great way to transition to the new methods needed to raise money in the pandemic.

Covid-19 gave us the opportunity to come together as a group and advocate for all people with rare and less common cancers and to fundraise through this innovative campaign. In September all the charities asked their supporters to sign up to the 20 for 20 challenge and take on 20 challenges over 20 consecutive days. At Mesothelioma UK, our nurses led the charge with 20 nurses completing 20 challenges with everything from meditation, open water swims and even cooking a 20-ingredient dish! This amazing challenge raised over £2,232 for Mesothelioma UK and we hope to team up again next year for another 20 for 20 challenge.

Following that, our team of nurses launched a video appeal on Facebook. Each week different nurses recorded messages about the importance of our work and thanking our supporters for their generous donations.

The total appeal raised over £8,782.

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The National Lottery Fund

In August 2020 we received the good news that The National Lottery Community Fund was going to fund our information line service for six months. The total grant awarded was £46,806 and this allowed us to run our information line service throughout the first wave of the pandemic, when calls were coming in thick and fast about the ever-changing restrictions. This grant was from the Coronavirus Community Support Fund which was set up to increase community support to vulnerable people.

Legal Panel

In April 2020 we launched our Legal Panel. In January 2020 we opened the process to applications and through a rigorous application system we chose eight firms for a two-year term on the legal panel. These firms donate to Mesothelioma UK and are listed on our website for mesothelioma patients to contact. These partnerships are a valuable way of ensuring that the charity has a stable income and that mesothelioma patients who are looking for legal advice are being directed to reputable firms. The firms who make up the panel for 2020 – 2022 are;

Christmas Carol-Off

An innovative fundraiser brought some joy to the Christmas lockdown when we needed it the most. The operations team at Mesothelioma UK came together over Zoom to perform a wonky rendition of The 12 Days of Christmas. This was followed by entries from other teams, some of whom excelled at coordinating their zoom performances. Three winners were chosen for Best Vocal Harmony, Best Performance/Musicality and Best Entertainment/Presence, although we’re confident that just taking part was fun enough for all teams! Thank you to those who took part in this fundraiser, and we hope the teams have been practicing as this will feature again in 2021.

William’s Story

In February 2021, William Barber, aged eight years old, began a fundraiser in memory of his grandfather Albert, who was diagnosed with mesothelioma in 2020.

Like us all, William was stuck at home in February, but this didn’t hold him back as he decided to climb the equivalent of Ben Nevis by walking up and down the stairs at home. Cheered on by his family, William climbed 587 flights of stairs and raised over £3,000.

Thank you, William!

How We Raised the Funds

----- Start of picture text -----
Donations
Trading
and Other £548,173
Donations Legacy Income
£559,459
Grants
Grants
£230,089
Trading and Other
£140,334
----- End of picture text -----

----- Start of picture text -----
Legacy
Income
Our supporters
helped us to raise
a total of
£1.47
million
----- End of picture text -----

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How We Spent the Funds

----- Start of picture text -----
Income generation costs
Income
£132,368 Admin and generation
operational costs
Research and audit costs costs
£285,987
Armed Forces Project Research
£21,999 and audit
costs
Awareness costs
£43,391
Information costs
£48,258
Armed
forces
Patient support
project
costs
£692,744 Awareness
costs
Admin and
operational costs
£139,948
Information
costs
Patient
support
costs
90p
from every £1
donation was spent
on charitable
activities
----- End of picture text -----

Our Growing Team

The operations team at Mesothelioma UK has continued to grow to meet the demands of the service, and we were very lucky that despite the challenges of the pandemic, we were able to add three new staff members to our team. In September 2020 we recruited a Finance Assistant to help us transition to a paperless accounting system and a Senior Projects Officer who would be responsible for taking forward our research and awareness work.

In January 2021 we welcomed a Senior Corporate Officer as an addition to the Fundraising Team to support our corporate relationships.

Another milestone was reached in February 2021 when it was announced that Liz Darlison, who has headed up Mesothelioma UK since its foundation, would become the charity’s first Chief Executive Officer. Mesothelioma UK is a well-respected national charity, and the Trustees felt the time was right to appoint the first CEO.

As in previous years we continue to have staff seconded from the University Hospitals of Leicester (UHL). However, with the growth in our operational team, the proportion of staff seconded from UHL continues to decrease and is now four out of twelve.

Governance

Reference and administrative details of the charity, its trustees and advisers. For the period ended 31 March 2021

Legal and Administrative Details

Status

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

Governing Document

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

Charity Number Independent auditors Mike Holmes, 1177039 Magma Audit LLP Senior Corporate Relations Unit 2, Charnwood Edge Officer Company Number Business Park Julie Morton, Principal office Syston Road Information Line Unit 116, Greenacres Cossington Co-ordinator and Charity PA The Sidings Leicester Rachel Owen, Station Road LE7 4UZ Events Officer LeicesterLE4 3BR Chief Executive Officer Hazel Curtis, Finance Assistant Liz Darlison Rubina Sheikh, Trustees Administrative Assistant

Trustees Administrative Assistant Dr N Maskell (Chair) Operational Team Prof M D Peake Lorraine Creech, Subsidiaries and related D E McKinley Head of Nursing parties A L Coates Faye Forde, The Mesothelioma Dr A Aujayeb Senior Business Manager UK Trading Company S E Hague Tracey Calvert, was incorporated Dr D J Hetmanski Finance Manager on 31st March 2020 H Childs Jill Lemon, with company number M Waters Senior Fundraiser, 12541690. It is the Campaigns, Challenges sole subsidiary of and Legacies Mesothelioma UK and Alyshia Riley, exists to raise trading Senior Digital Fundraiser income for the charity. Samantha Morgan, All its profits were Senior Projects Officer transferred to the charity.

Appointments to the Board

In December 2020, Professor Mick Peake, the longstanding chair of the Board of Trustees stepped down as chair. Following a process of advertisement and after submitting an Expression of Interest, Dr Nick Maskell was appointed at chair with immediate effect in December 2020. Dr Nick Maskell joined the Board of Trustees in August 2020. August 2020 also saw the appointment of Melanie Waters to the Board. All new trustee positions are advertised online, and trustees are elected to the board by a majority vote.

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Financial Review

Basis for Preparation

After making appropriate enquiries, the trustees have a reasonable expectation that the charity has adequate resources to continue in operational existence for the foreseeable future. The trustees have assessed the financial position of the charity in light of the Covid-19 pandemic and concluded that the charity has sufficient resources to meet its liabilities as they fall due. For this reason, they continue to adopt the going concern basis in preparing the financial statements.

How We Raised Funds

The graphic on page 25 gives a breakdown of how we raised £1,478,055 during the year 2020/21. We were incredibly fortunate to have received a large proportion of our income from legacies this year at 38 per cent. This has allowed us to continue delivering our services throughout Covid-19. We also received £11,124 from Government grants. £10,000 of this was a grant from the local council to support organisations throughout covid, and the remainder was from the furlough scheme.

Individual Giving fell to £351,883 this year from £429,151.16 last year, and events also dropped from £22,362.18 in 2019/20 to £8,538. This was an inevitable consequence of the Covid-19 pandemic which forced us to cancel our main events during the year.

Campaigns and challenges increased despite many marathon events being cancelled or postponed. In 2019/20 campaigns and challenges raised £26,983.65 and in 2020/21 £37,686.

Income from non-trading activities represents the income from our legal panel.

Major Donor income is recorded as any donation from a single person or family of over £10,000. With particular thanks to Ms Pamela Hoare, who donated generously on behalf of her brother Sidney Marlow, to Mr Peter Williams in memory of his partner Mr Peter Empson and to Mr John Pickles.

How We Spent Funds

The graphic on page 26 illustrates how we spent our funds in 2020/21. 90 per cent of our income went directly on charitable activities. The cost of raising funds was 10 per cent in 2020/21 compared to 12 per cent in 2019/20.

As in previous years the largest expenditure was the cost of funding nursing posts. As we now group our activities under different pillars, the cost of funding the nurses fell into the Patient Support Pillar. Of the £692,744 in Patient Support, £626,984 was towards the nursing posts.

A significant new expenditure for the charity was the cost of the Research Centre at Sheffield which at £114,680. The centre contract is for three years with a total cost of £448,100. The charity employed an additional three members of staff during the year as well as introduced a new benefits package for all staff which altogether raised the staff costs by £86,089 compared to the previous year.

Risks

A detailed budget forecasting the income and expenditure was prepared for the upcoming year with the likely impact of Covid-19 considered. Using predictions for the charity sector as a whole and the results of 2020/21 the trustees have approved a budget that assumes no growth in income and has approved the use of reserves to meet expenditure. The impact of Covid-19 is likely to be felt for two to four years and this has been taken into account. The continuation of the Covid-19 pandemic is a risk, however the response of the mesothelioma community and the ability of the charity to adapt to new methods of fundraising gives the trustees confidence that Mesothelioma UK will be able to manage this risk.

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, such as the covid-19 pandemic. Our policy is that unrestricted reserves should cover at a minimum six months operating costs and at a maximum six months contracted charitable activities plus six months’ operational costs and salaries. This is known as the ‘reserves corridor’. As at 31st March 2021, that reserve corridor was £614,770 minimum to £1,376,575. The actional level of reserves held by the charity was £1,558,772 which is over the limit. The trustees have approved a budget for 2021/22 that will bring these reserve levels back to within the reserve corridor and will monitor the level throughout the year.

Investments

Our investment portfolio is managed by Magma Wealth. As at 31st March 2021 our investments stood at £787,915. This includes cash funds of £48,276 and listed investments of £739,639.

Our investment manager's brief is to maximise the overall growth of the fund while ensuring that risk is managed to the agreed level. The trustees set the agreed level of risk and in January 2020 made the decision to increase the risk level slightly in order to change to an Ethical Investment Portfolio. This portfolio screens for investments in tobacco, arms, animal testing, pornography, and nuclear power. Mesothelioma UK will not invest in any of these areas.

The Ethical Fund also represented a higher return for the charity. The move was agreed in February 2021 but did not come into effect during the year 2020/21.

The trustees regularly monitor the investment portfolio, with quarterly investment reports as a minimum.

Funds held as Custodian

The charity holds funds on behalf of the Melu Lunch Club for mesothelioma and other lung patients. The funds held at the year-end were £517 (2020 - £517). The charity also holds funds on behalf of the UK Mesothelioma Alliance of £21,535 (2020 - £26,589).

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Looking Forward

Conclusions from Chair and CEO

Our first independent round of grants will be awarded, a research priority initiative will have been completed by our academic team at the Mesothelioma UK Research Centre – Sheffield and we plan to focus more on ensuring that the impact of research we have already funded is maximised.

Mesothelioma UK’s mission is to ensure that everyone has access to fair and equitable treatment for mesothelioma and that accurate information and support is provided to those who need it. The turbulence of the pandemic has only strengthened our resolve and although the past year has had its challenges, we remain as committed as ever to mesothelioma patients, their families and carers.

We will continue our dialogue with government departments and MPs, amplifying the voices of the mesothelioma community so they are heard by those with the power to enact change.

Thank you for your ongoing support, for your donations, fundraising and for partnering with Mesothelioma UK. We pledge to provide a transparent charity, fully engaged with the mesothelioma community and committed to making our National Health Service the best it can be, irrespective of where you live, for those living with mesothelioma.

The year ahead will see Mesothelioma UK publish a new strategy outlining a bigger and better charity. There is much to consider, from the developments in online care that has changed the face of charity work and healthcare in the past year, to the changes in fundraising approaches and donor behaviour, that will affect how we raise funds in the future.

Mesothelioma UK will approach this challenge with vigour and look forward to charting the course of the coming years. Unfortunately, mesothelioma is not set to become a problem of the past yet and therefore our services will continue to be needed.

Emerging from Covid-19, we will seek to solidify our team of nurses, with plans to expand in Wales, Northern Ireland and in every Cancer Alliance in England where we don’t currently have a presence.

The National Mesothelioma Audit will be further developed with possibly a new academic partner, and we have ambitious plans to increase the scope and reach of the audit.

Financial Statements

Statement of Trustees’ Responsibilities

The Trustees are responsible for keeping adequate accounting records that are sufficient to show and explain the Group and the charity's transactions and disclose with reasonable accuracy at any time the financial position of the Group and the charity and 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 . They are also responsible for safeguarding the assets of the Group and the charity and hence for taking reasonable steps for the prevention and detection of fraud and other irregularities.

The Trustees are responsible for preparing the Trustees' report 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 their incoming resources and application of resources, including their income and expenditure, for that period. In preparing these financial statements, the Trustees are required to:

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

• select suitable accounting policies and then apply them consistently;

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

Dr N Maskell Trustee Date: 2/12/21

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

• state whether applicable UK Accounting Standards (FRS 102) have been followed, subject to any material departures disclosed and explained in the financial statements;

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

D E McKinley Trustee Date: 2/12/21

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Independent Auditors' report

Opinion

We have audited the financial statements of Mesothelioma UK Charitable Incorporated Organisation (the 'parent charity') and its subsidiaries (the 'group') for the period ended 31 March 2021 which comprise the Consolidated statement of financial activities, the Consolidated balance sheet, the Charity balance sheet, the Consolidated statement of cash flows and the related notes, including a summary of significant accounting policies. The financial reporting framework that has been applied in their preparation is applicable law and United Kingdom Accounting Standards, including Financial Reporting Standard 102 'The Financial Reporting Standard applicable in the UK and Republic of Ireland' (United Kingdom Generally Accepted Accounting Practice).

In our opinion the financial statements:

• give a true and fair view of the state of the Group's and of the parent charity's affairs as at 31 March 2021 and of the Group's incoming resources and application of resources, including its income and expenditure for the period then ended;

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

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

Basis for opinion

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

Conclusions relating to going concern

In auditing the financial statements, we have concluded that the trustees’ use of the going concern basis of accounting in the preparation of the financial statements is appropriate. We have nothing to report in respect of the following matters in relation to which the ISAs (UK) require us to report to you where:

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

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

Other information

The other information comprises the information included in the annual report other than the financial statements and our auditor’s report thereon. The trustees are responsible for the other information contained within the annual report. Our opinion on the financial statements does not cover the other information and, except to the extent otherwise explicitly stated in our report, we do not express any form of assurance conclusion thereon. Our responsibility is to read the other information and, in doing so, consider whether the other information is materially inconsistent with the financial statements or our knowledge obtained in the course of the audit or otherwise appears to be materially misstated. If we identify such material inconsistencies or apparent material misstatements, we are required to determine whether this gives rise to a material misstatement in the financial statements themselves. If, based on the work we have performed, we conclude that there is a material misstatement of this other information, we are required to report that fact. We have nothing to report in this regard.

Matters on which we are required to report by exception

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

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

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

• the parent charity financial statements are not in

• agreement with the accounting records and returns; or

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

Responsibilities of trustees

As explained more fully in the Trustees' responsibilities statement, the Trustees are responsible for the preparation of the financial statements which give a true and fair view, and for such internal control as the Trustees determine is necessary to enable the preparation of financial statements that are free from material misstatement, whether due to fraud or error.

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

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Consolidated Statement of financial activity for the period ended 31 March 2021

Auditors' responsibilities for the audit of the financial statements

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

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

Based on our understanding of the charity and the sector, we have identified that the principal risks of non compliance with laws and regulations related to UK tax and legislation and breaches of the Charities Act, and we have considered the extent to which non compliance might have a material effect on the financial statements.

We also considered those laws and regulations that have direct impact on the preparation of the financial statements such as the Charities Act 2011 and provisions of the Charities SORP (FRS 102). We have evaluated management's incentives and opportunities for fraudulent manipulation of the financial statements (including the risk of override of controls) and determined that the principal risks were related to posting inappropriate journal entries, and management bias in accounting estimates.

Audit procedures performed included:

• Enquires with management for consideration of known or suspected instances of non compliance with laws and regulations and fraud.

There are inherent limitations in the audit procedure described above. The more removed non compliance with laws and regulations is, from the events and transactions reflected in the financial statements, the less likely we would become aware of it. Also, the risk of not detecting a material misstatement due to fraud is higher than the risk of not detecting one resulting in error, as fraud may involve deliberate concealment by forgery or intentional misrepresentation, for example, or through collusion.

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

Use of our report

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

Magma Audit LLP

Statutory Auditor Unit 2, Charnwood Edge Business Park Syston Road Cossington Leicester LE7 4UZ

Date: 9[th] December 2021

Magma Audit LLP are eligible to act as auditors in terms of section 1212 of the Companies Act 2006.

~~Unrestricted~~ ~~Restricted~~ ~~Total~~ ~~Total~~ ~~funds~~ ~~funds~~ ~~funds~~ ~~funds~~ ~~2021~~ ~~2021~~ ~~2021~~ ~~2020~~ ~~Note~~ ~~£~~ ~~£~~ ~~£~~ ~~£~~ Income from: Donatons and legacies 3 1,053,790 272,807 1,326,597 1,285,534 Other trading actvites 4 134,056 - 134,056 17,325 Investments 5 6,278 - 6,278 11,323 Other income 6 11,124 - 11,124 - ~~Total income~~ ~~1,205,248~~ ~~272,807~~ ~~1,478,055~~ ~~1,314,182~~ Expenditure on: Raising funds 7 133,165 - 133,165 179,648 Charitable actvites 8 862,753 368,777 1,231,530 1,026,001 ~~Total expenditure~~ ~~995,918~~ ~~368,777~~ ~~1,364,695~~ ~~1,205,649~~ ~~Netgains/(losses) on investments~~ ~~13~~ ~~161,684~~ ~~-~~ ~~161,684~~ ~~(67,864)~~ ~~Net movement in funds~~ ~~371,014~~ ~~(95,970)~~ ~~275,044~~ ~~40,669~~ Reconciliaton of funds: Total funds brought forward 1,187,758 183,455 1,371,213 1,330,544 Net movement in funds 371,014 (95,970) 275,044 40,669 ~~Total funds carried forward~~ ~~18~~ ~~1,558,772~~ ~~87,485~~ ~~1,646,257~~ ~~1,371,213~~

• Identifying, journal entries crediting revenue, journal entries crediting cash and journal entries with specific defined descriptions.

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Consolidated Balance sheet as at 31 March 2021

~~2021~~ ~~2020~~ ~~Note~~ ~~£~~ ~~£~~ Fixed assets Tangible assets 13 7,227 4,740 Investments 14 739,639 626,476 ~~746,866~~ ~~631,216~~ Current assets Debtors 15 442,077 207,715 Investments 16 273,000 403,000 Cash at bank and in hand 319,285 277,456 ~~1,034,362~~ ~~888,171~~ ~~Creditors: amounts falling due~~ ~~17~~ ~~(134,971)~~ ~~(148,174)~~ ~~within oneyear~~ ~~Net current assets~~ ~~899,391~~ ~~739,997~~ ~~Total assets less current~~ ~~1,646,257~~ ~~1,371,213~~ ~~liabilites~~ ~~Total net assets~~ ~~1,646,257~~ ~~1,371,213~~ Charity funds Restricted funds 18 87,485 183,455 Unrestricted funds 18 1,558,772 1,187,758 ~~Total funds~~ ~~1,646,257~~ ~~1,371,213~~

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

Dr N Maskell Trustee Date: 2/12/21

D E McKinley Trustee

Charity Balance sheet as at 31 March 2021

~~2021~~ ~~2020~~ ~~Note~~ ~~£~~ ~~£~~ Fixed assets Tangible assets 13 7,227 4,740 Investments 14 739,640 626,476 ~~746,867~~ ~~631,216~~ Current assets Debtors 15 442,077 207,715 Investments 16 273,000 403,000 Cash at bank and in hand 319,285 277,456 ~~1,034,362~~ ~~888,171~~ ~~Creditors: amounts falling due~~ ~~17~~ ~~(134,972)~~ ~~(148,174)~~ ~~within oneyear~~ ~~Net current assets~~ ~~899,390~~ ~~739,997~~ ~~Total assets less current~~ ~~1,646,257~~ ~~1,371,213~~ ~~liabilites~~ ~~Total net assets~~ ~~1,646,257~~ ~~1,371,213~~ Charity funds Restricted funds 18 87,485 183,455 Unrestricted funds 18 1,558,772 1,187,758 ~~Total funds~~ ~~1,646,257~~ ~~1,371,213~~

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

Dr N Maskell Trustee Date: 2/12/21

D E McKinley Trustee

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Consolidated Statement of Cash Flows for the period ended 31 March 2021

~~2021~~ ~~2020~~ ~~£~~ ~~£~~ Cash fows from operatng actvites ~~Net cash used in operatng actvites~~ ~~(7,312)~~ ~~142,784~~ Cash fows from investng actvites Dividends and interest from investments 6,278 11,323 Purchase of tangible fxed assets (5,657) (1,089) Proceeds from sale of investments 280,604 456,238 Purchase of investments (232,084) (574,403) ~~Net cashprovided by/(used in) investng actvites~~ ~~49,141~~ ~~(107,931)~~ Cash fows from fnancing actvites ~~Net cashprovided by fnancing actvites~~ ~~-~~ ~~-~~ Change in cash and cash equivalents in the period 41,829 34,853 Cash and cash equivalents at the beginning of the period 277,456 242,603 ~~Cash and cash equivalents at the end of theperiod~~ ~~319,285~~ ~~277,456~~

The notes on pages 38 to 61 form part of these financial statements

Notes to the Financial Statements for the period ended 31 March 2021

1. General information

2.2 Fund accounting

Mesothelioma UK Charitable Incorporated Organisation is an unincorporated charity registered with the Charity Commission. It's registered office address is Unit 116, Greenacres, The Sidings, Leicester, LE4 3BR and it's registered number is 1177039.

General funds are unrestricted funds which are available for use at the discretion of the Trustees in furtherance of the general objectives of the Group and which have not been designated for other purposes.

Restricted funds are funds which are to be used in accordance with specific restrictions imposed by donors or which have been raised by the Group for particular purposes. The costs of raising and administering such funds are charged against the specific fund. The aim and use of each restricted fund is set out in the notes to the financial statements.

2. Accounting policies 2.1 Basis of preparation of financial statements

The financial statements have been prepared in accordance with the Charities SORP (FRS 102) Accounting and Reporting by Charities: Statement of Recommended Practice applicable to charities preparing their accounts in accordance with the Financial Reporting Standard applicable in the UK and Republic of Ireland (FRS 102) (effective 1 January 2015), the Financial Reporting Standard applicable in the UK and Republic of Ireland (FRS 102) and the Charities Act 2011.

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

2.3 Income

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

The financial statements have been prepared to give a 'true and fair' view and have departed from the Charities (Accounts and Reports) Regulations 2008 only to the extent required to provide a 'true and fair' view. This departure has involved following the Charities SORP (FRS 102) published on 16 July 2014 rather than the Accounting and Reporting by Charities: Statement of Recommended Practice effective from 1 April 2005 which has since been withdrawn.

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

Mesothelioma UK Charitable Incorporated Organisation meets the definition of a public benefit entity under FRS 102. Assets and liabilities are initially recognised at historical cost or transaction value unless otherwise stated in the relevant accounting policy.

The Consolidated statement of financial activities (SOFA) and Consolidated balance sheet consolidate the financial statements of the charity and its subsidiary undertaking. The results of the subsidiary are consolidated on a line by line basis.

Donated services or facilities are recognised when the charity has control over the item, any conditions associated with the donated item have been met, the receipt of economic benefit from the use of the charity of the time is probable and that economic benefit can be measured reliably. In accordance with the Charities SORP (FRS 102), the general volunteer time is not recognised and refer to the Trustees' report for more information about their contribution.

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Notes to the Financial Statements for the period ended 31 March 2021 (continued)

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

directly in support of expenditure on the objects of the charity and include project management carried out at Headquarters.

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

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

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

Expenditure on raising funds includes all expenditure incurred by the Group to raise funds for its charitable purposes and includes costs of all fundraising activities events and non charitable trading.

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

Expenditure on charitable activities is incurred on directly undertaking the activities which further the Group's objectives, as well as any associated support costs.

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

2.5 Going concern

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

2.4 Expenditure

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

2.6 Tangible fixed assets and depreciation

All assets costing more than £500 are capitalised

A review for impairment of a fixed asset is carried out if events or changes in circumstances indicate that the carrying value of any fixed asset may not be recoverable. Shortfalls between the carrying value of fixed assets and their recoverable amounts are recognised as impairments. Impairment losses are recognised in the Statement of Financial Activities.

Fundraising costs are those incurred in seeking voluntary contributions and do not include the costs of disseminating information in support of the charitable activities. Support costs are those costs incurred

Notes to the Financial Statements for the period ended 31 March 2021 (continued)

2.11 Liabilities and provisions

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

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

Depreciation is provided on the following bases:

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

Liabilities are recognised at the amount that the charity anticipates it will pay to settle the debt or the amount it has received as advanced payments for the goods or services it must provide.

2.7 Investments

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

Provisions are measured at the best estimate of the amounts required to settle the obligation. Where the effect of the time value of money is material, the provision is based on the present value of those amounts, discounted at the pre tax discount rate that reflects the risks specific to the liability. The unwinding of the discount is recognised in the Consolidated statement of financial activities as a finance cost.

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

2.12 Financial instruments

The Group only has financial assets and financial liabilities of a kind that qualify as basic financial instruments. Basic financial instruments are initially recognised at transaction value and subsequently measured at their settlement value with the exception of bank loans which are subsequently measured at amortised cost using the effective interest method.

Interest receivable

2.8

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

2.13 Operating leases

2.9 Debtors

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

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

2.14 Current asset investments

2.10 Cash at bank and in hand

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

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

2.15 Pensions

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

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Notes to the Financial Statements for the period ended 31 March 2021 (continued)

3. Income from donations and legacies

	~~Unrestricted~~ ~~Restricted~~ ~~Total~~ ~~Total~~ ~~funds~~ ~~funds~~ ~~funds~~ ~~funds~~ ~~2021~~ ~~2021~~ ~~2021~~ ~~2020~~ ~~£~~ ~~£~~ ~~£~~ ~~£~~ Donatons 475,331 72,842 548,173 716,341 Legacies 559,459 - 559,459 255,843 Grants 19,000 199,965 218,965 313,350 ~~Total 2021~~ ~~1,053,790~~ ~~272,807~~ ~~1,326,597~~ ~~1,285,534~~ ~~Total 2020~~ ~~972,184~~ ~~313,350~~ ~~1,285,534~~

Notes to the Financial Statements for the period ended 31 March 2021 (continued)

4. Income from other trading activities

Income from fundraising events

	~~Unrestricted~~ ~~Total~~ ~~Total~~ ~~funds~~ ~~funds~~ ~~funds~~ ~~2021~~ ~~2021~~ ~~2020~~ ~~£~~ ~~£~~ ~~£~~ ~~Sponsorship income~~ ~~-~~ ~~-~~ ~~17,000~~ ~~Total 2020~~ ~~17,000~~ ~~17,000~~

Income from non charitable trading activities

	~~Unrestricted~~ ~~Total~~ ~~Total~~ ~~funds~~ ~~funds~~ ~~funds~~ ~~2021~~ ~~2021~~ ~~2020~~ ~~£~~ ~~£~~ ~~£~~ Advertsing sales 120,000 120,000 - Speaker fees 1,063 1,063 - Shop sales 12,993 12,993 325 ~~Total 2021~~ ~~134,056~~ ~~134,056~~ ~~325~~ ~~Total 2020~~ ~~325~~ ~~325~~

The advertising sales is income raised from members of Mesothelioma UK Trading Ltd's Legal Panel, who make a payment to Mesothelioma UK Trading Ltd in return for the inclusion of their name and logo on our website and legal advice leaflet. Additionally their logo is also included on the Mesothelioma Matters Magazine and space for one article per year.

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Notes to the Financial Statements for the period ended 31 March 2021 (continued)

5. Investment income

	~~Unrestricted~~ ~~Total~~ ~~Total~~ ~~funds~~ ~~funds~~ ~~funds~~ ~~2021~~ ~~2021~~ ~~2020~~ ~~£~~ ~~£~~ ~~£~~ Dividends received 2,006 2,006 2,709 Bank interest received 4,272 4,272 8,614 ~~Total 2021~~ ~~6,278~~ ~~6,278~~ ~~11,323~~ ~~Total 2020~~ ~~11,323~~ ~~11,323~~

6. Other incoming resources

	~~Unrestricted~~ ~~Total~~ ~~Total~~ ~~funds~~ ~~funds~~ ~~funds~~ ~~2021~~ ~~2021~~ ~~2020~~ ~~£~~ ~~£~~ ~~£~~ Coronavirus job retenton scheme income 1,124 1,124 - Coronavirus rates grant 10,000 10,000 - ~~11,124~~ ~~11,124~~ ~~-~~

Notes to the Financial Statements for the period ended 31 March 2021 (continued)

7. Expenditure on raising funds

Costs of raising voluntary income

~~Unrestricted~~ ~~Total~~ ~~Total~~ ~~funds~~ ~~funds~~ ~~funds~~ ~~2021~~ ~~2021~~ ~~2020~~ ~~£~~ ~~£~~ ~~£~~ Fundraising costs 4,973 4,973 18,912 Will writng 2,655 2,655 3,940 Charitable events 970 970 24,840 Christmas card purchases 1,610 1,610 1,758 Online shop expenses 9,188 9,188 606 Website and social media 3,308 3,308 15,552 Stripe and online giving fees 7,798 7,798 6,843 Print and design magazine 1,357 1,357 12,828 UHL staf costs 56,270 56,270 59,788 Finance manager 1,005 1,005 - Wages and salaries 38,656 38,656 32,705 Natonal insurance 2,322 2,322 1,354 Pension costs 2,256 2,256 522 ~~Total 2021~~ ~~132,368~~ ~~132,368~~ ~~179,648~~ ~~Total 2020~~ ~~179,648~~ ~~179,648~~

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Notes to the Financial Statements for the period ended 31 March 2021 (continued)

Other trading expenses

	~~Unrestricted~~ ~~Total~~ ~~Total~~ ~~funds~~ ~~funds~~ ~~funds~~ ~~2021~~ ~~2021~~ ~~2020~~ ~~£~~ ~~£~~ ~~£~~ ~~Administraton expenses~~ ~~797~~ ~~797~~ ~~-~~ ~~Total 2020~~ ~~-~~ ~~-~~

8. Analysis of expenditure by activities

~~Direct~~ ~~Support~~ ~~Total~~ ~~Total~~ ~~costs~~ ~~costs~~ ~~funds~~ ~~funds~~ ~~2021~~ ~~2021~~ ~~2021~~ ~~2020~~ ~~£~~ ~~£~~ ~~£~~ ~~£~~ Administraton and operatonal costs - 139,151 139,151 174,827 Patent support costs 692,744 - 692,744 586,117 Informaton expenses 48,258 - 48,258 6,493 Research and audit costs 285,987 - 285,987 190,182 Armed Forces project 21,999 - 21,999 68,382 Awareness costs 43,391 - 43,391 - ~~Total 2021~~ ~~1,092,379~~ ~~139,151~~ ~~1,231,530~~ ~~1,026,001~~ ~~Total 2020~~ ~~851,174~~ ~~174,827~~ ~~1,026,001~~

Notes to the Financial Statements for the period ended 31 March 2021 (continued)

8. Analysis of expenditure by activities

Analysis of direct costs

~~Patent~~ ~~Research~~ ~~support~~ ~~Informaton~~ ~~and audit~~ ~~LIBOR~~ ~~costs~~ ~~expenses~~ ~~costs~~ ~~project~~ ~~2021~~ ~~2021~~ ~~2021~~ ~~2021~~ ~~£~~ ~~£~~ ~~£~~ ~~£~~ Staf costs 11,373 16,623 18,014 - Provision for nursing services 626,984 - - - Nurses meetngs 78 - - - Website and social media 4,963 6,617 - - Grants for patent travel expenses 2,187 - - - MCNS sundries, travel and other costs 2,150 - - - Patent travel 12,540 - - - Printng and design magazine - 6,784 - - Meso passport 3,336 - - - Provision for grants for research - - 121,744 - More study - - 2,736 - Research centre main award - - 114,680 - Informaton expenses - - 2,605 - Other costs - - 1,504 - Armed forces project expenses - - - 19,209 Informaton expenses - 5,302 - - Patent carer day - 2,187 - - Clinical trials app - - - - UHL staf costs 29,133 10,745 11,628 2,790 Finance manager - - 980 - Research manager - - 12,096 - ~~Total 2021~~ ~~692,744~~ ~~48,258~~ ~~285,987~~ ~~21,999~~ ~~Total 2020~~ ~~586,117~~ ~~6,493~~ ~~190,182~~ ~~68,382~~

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Notes to the Financial Statements for the period ended 31 March 2021 (continued)

8. Analysis of expenditure by activities (continued)

Analysis of direct costs (continued)

~~Awareness~~ ~~Total~~ ~~Total~~ ~~costs~~ ~~funds~~ ~~funds~~ ~~2021~~ ~~2021~~ ~~2020~~ ~~£~~ ~~£~~ ~~£~~ Staf costs 22,568 68,578 14,259 Provision for nursing services - 626,984 531,812 Nurses meetngs - 78 7,704 Website and social media 1,654 13,234 Grants for patent travel - 2,187 - MCNS sundries, travel and other costs - 2,150 - Patent travel - 12,540 24,779 Printng and design magazine 5,427 12,211 - Meso passport - 3,336 1,554 Provision for grants for research - 121,744 174,770 More study - 2,736 8,717 Research centre main award - 114,680 - Informaton expenses - 2,605 - Other costs - 1,504 - Armed forces project expenses - 19,209 68,382 Awareness costs 2,114 2,114 - Informaton expenses - 5,302 6,493 Patent carer day - 2,187 - Clinical trials app - - 6,009 UHL staf costs 11,628 65,924 - Finance manager - 980 - Health research manager - 12,096 6,695 ~~Total 2021~~ ~~43,391~~ ~~1,092,379~~ ~~851,174~~ ~~Total 2020~~ ~~-~~ ~~851,174~~

Notes to the Financial Statements for the period ended 31 March 2021 (continued)

8. Analysis of expenditure by activities (continued)

Analysis of support costs

~~Total~~ ~~Total~~ ~~Actvites~~ ~~funds~~ ~~funds~~ ~~2021~~ ~~2021~~ ~~2020~~ ~~£~~ ~~£~~ ~~£~~ Staf costs 39,439 39,439 37,249 Depreciaton 3,170 3,170 1,847 Marketng materials and adverts 4,609 4,609 3,347 Bank charges 530 530 1,277 Subscriptons 2,652 2,652 3,000 Rent 10,250 10,250 10,800 Ofce printng, postage and statonery 1,806 1,806 12,017 Ofce expenses 1,681 1,681 3,107 Telephone and internet 4,867 4,867 4,717 Storage 778 778 - Repairs and renewals 80 80 982 Governance 7,682 7,682 6,362 Insurance 660 660 1,344 Investment manager costs 6,012 6,012 5,311 Travel expenses 351 351 11,910 Events and conference - - 2,191 IT support and other IT costs 5,065 5,065 8,163 Legal and professional fees 8,609 8,609 2,939 CRM expenses 2,938 2,938 7,459 Finance manager 17,860 17,860 15,834 UHL staf costs 20,112 20,112 34,971 ~~Total 2021~~ ~~139,151~~ ~~139,151~~ ~~174,827~~ ~~Total 2020~~ ~~174,827~~ ~~174,827~~

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Notes to the Financial Statements for the period ended 31 March 2021 (continued)

9. Grants payable and similar to institutions and related support costs

~~Total~~ ~~Total~~ ~~funds~~ ~~funds~~ ~~2021~~ ~~2020~~ ~~£~~ ~~£~~ Mesothelioma Clinical Nurse Specialists (MCNS) to various NHS Trusts 446,188 335,175 Mesothelioma Clinical Nurse Team Leaders to various NHS Trusts 132,345 139,097 University Hospital Leicester Operatonal staf 142,306 125,365 Citzens Advice Bureau 48,451 37,342 Royal College of Physicians The Natonal Mesothelioma Audit - 26,720 Royal College of Physicians Mesothelioma Organisatonal Audit - 6,435 LCNUK Grant: Oxford Brookes University Patents Experiences of follow up care 5,210 12,504 NLCFN Grant: Oxford Brookes University Exploring clinical decision making in Mesothelioma treatment pathways 24,911 - LCNUK Grant: Karen Lord Living well with Mesthothelioma a qualitatve study - 1,596 University of Southampton Genomics of Peritoneal Malignancy 5,535 13,284 University of Shefeld Research centre main award 114,680 - University of Shefeld Healthcare workers & Mesothelioma (MAGS) - 10,637 University of Shefeld Evaluaton of role of MCNS's 41,733 13,911 University of Shefeld Gendered Experiences of Mesothelioma (GEMS) 10,209 28,056 University of Shefeld Impact of Mesothelioma for Armed Forces 34,146 51,219 Patent travel grants to individuals 12,540 24,779 Free Will Writng Service for patents 2,655 3,940 ~~1,020,909~~ ~~830,060~~

Notes to the Financial Statements for the period ended 31 March 2021 (continued)

10. Auditors' remuneration

	~~2021~~ ~~2020~~ ~~£~~ ~~£~~ Fees payable to the charity's auditor in respect of: The auditng of accounts of associates of the charity 4,884 4,740 All non audit services not included above 750 -

11. Staff costs

~~Group~~ ~~Group~~ ~~Charity~~ ~~Charity~~ ~~2021~~ ~~2020~~ ~~2021~~ ~~2020~~ ~~£~~ ~~£~~ ~~£~~ ~~£~~ Wages and salaries 135,386 80,241 135,386 80,241 Social security costs 7,870 4,200 7,870 4,200 Pension costs 7,995 1,648 7,995 1,648 ~~151,251~~ ~~86,089~~ ~~151,251~~ ~~86,089~~ The average number of persons employed by the charity during the period was as follows: Group Group 2021 2020 No. No. ~~Support staf~~ ~~7~~ ~~4~~

No employee received remuneration amounting to more than £60,000 in either year.

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Notes to the Financial Statements for the period ended 31 March 2021 (continued)

12. Trustees'

During the period, no Trustees received any remuneration or other benefits (2020: £NIL).

There were no travel and accommodation costs for conferences and meetings paid to Trustees during the period (2020: three Trustees totalling £362).

13. Tangible fixed assets

Group

~~Fixtures and~~ ~~Computer~~ ~~ftngs~~ ~~equipment~~ ~~Total~~ ~~£~~ ~~£~~ ~~£~~ Cost or valuaton At 1 April 2020 3,787 9,152 12,939 Additons - 5,657 5,657 ~~At 31 March 2021~~ ~~3,787~~ ~~14,809~~ ~~18,596~~ Depreciaton At 1 April 2020 2,174 6,025 8,199 Charge for the period 242 2,928 3,170 ~~At 31 March 2021~~ ~~2,416~~ ~~8,953~~ ~~11,369~~ Net book value ~~At 31 March 2021~~ ~~1,371~~ ~~5,856~~ ~~7,227~~ ~~At 31 March 2020~~ ~~1,613~~ ~~3,127~~ ~~4,740~~

Notes to the Financial Statements for the period ended 31 March 2021 (continued)

13. Tangible fixed assets (continued)

Charity

~~Fixtures and~~ ~~Computer~~ ~~ftngs~~ ~~equipment~~ ~~Total~~ ~~£~~ ~~£~~ ~~£~~ Cost At 1 April 2020 3,787 9,152 12,939 Additons - 5,657 5,657 ~~At 31 March 2021~~ ~~3,787~~ ~~14,809~~ ~~18,596~~ Depreciaton At 1 April 2020 2,174 6,025 8,199 Charge for the period 242 2,928 3,170 ~~At 31 March 2021~~ ~~2,416~~ ~~8,953~~ ~~11,369~~ Net book value ~~At 31 March 2021~~ ~~1,371~~ ~~5,856~~ ~~7,227~~ ~~At 31 March 2020~~ ~~1,613~~ ~~3,127~~ ~~4,740~~

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Notes to the Financial Statements for the period ended 31 March 2021 (continued)

14. Fixed asset investments

Notes to the Financial Statements for the period ended 31 March 2021 (continued)

14. Fixed asset investments (continued)

Principal subsidiaries

~~Listed~~ ~~investments~~ ~~Group~~ ~~£~~ Cost or valuaton At 1 April 2020 626,476 Additons 232,083 Disposals (280,604) Revaluatons 161,684 ~~At 31 March 2021~~ ~~739,639~~ ~~Investments~~ ~~in~~ ~~subsidiary~~ ~~Listed~~ ~~companies~~ ~~investments~~ ~~Total~~ ~~Charity~~ ~~£~~ ~~£~~ ~~£~~ Cost or valuaton At 1 April 2020 - 626,476 626,476 Additons 1 232,083 232,084 Disposals - (280,604) (280,604) Revaluatons - 161,684 161,684 ~~At 31 March 2021~~ ~~1~~ ~~739,639~~ ~~739,640~~

The following was a subsidiary undertaking of the charity:

	~~Name~~ ~~Company~~ ~~Registered ofce or principal~~ ~~number~~ ~~place of business~~ Mesothelioma UK Trading Ltd 12541690 England and Wales Principal actvity Class of shares Holding Included in consolidaton Sponsorship and Ordinary 100% Yes advertsing sales

The financial results of the subsidiary for the year were:

	~~Income~~ ~~Expenditure~~ ~~Proft/(Loss)~~ ~~Net assets~~ ~~£~~ ~~£~~ ~~/ Surplus/~~ ~~£~~ ~~(Defcit) for~~ ~~the year~~ ~~£~~ ~~120,000~~ ~~797~~ ~~119,203~~ ~~1~~

15. Debtors

	~~Group~~ ~~Group~~ ~~Charity~~ ~~Charity~~ ~~2021~~ ~~2020~~ ~~2021~~ ~~2020~~ ~~£~~ ~~£~~ ~~£~~ ~~£~~ Trade debtors 2,200 50 2,200 50 Other debtors 6,810 18,225 6,810 18,225 Prepayments and accrued income 433,067 189,440 433,067 189,440 ~~442,077~~ ~~207,715~~ ~~442,077~~ ~~207,715~~

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Notes to the Financial Statements for the period ended 31 March 2021 (continued)

16. Current asset investments

	~~Group~~ ~~Group~~ ~~Charity~~ ~~Charity~~ ~~2021~~ ~~2020~~ ~~2021~~ ~~2020~~ ~~£~~ ~~£~~ ~~£~~ ~~£~~ ~~Cash on deposit~~ ~~273,000~~ ~~403,000~~ ~~273,000~~ ~~403,000~~

Current asset investments consists of fixed rate deposits with high street banks and building societies maturing in April 2021 and July 2021.

17. Creditors: Amounts falling due within one year

	~~Group~~ ~~Group~~ ~~Charity~~ ~~Charity~~ ~~2021~~ ~~2020~~ ~~2021~~ ~~2020~~ ~~£~~ ~~£~~ ~~£~~ ~~£~~ Trade creditors 70,002 49,912 70,002 49,912 Amounts owed to group undertakings - - 1,501 - Taxaton and social security 3,992 2,502 3,242 2,502 Other creditors 25,375 27,654 25,375 27,654 Accruals and deferred income 35,602 68,106 34,852 68,106 ~~134,971~~ ~~148,174~~ ~~134,972~~ ~~148,174~~

Notes to the Financial Statements for the period ended 31 March 2021 (continued)

18. Statement of funds

Statement of funds current period

~~Balance at~~ ~~Balance at~~ ~~Gains/~~ ~~31 March~~ ~~1 April 2020~~ ~~Income~~ ~~Expenditure~~ ~~(Losses)~~ ~~2021~~ ~~£~~ ~~£~~ ~~£~~ ~~£~~ ~~£~~ Unrestricted funds ~~General funds~~ ~~1,187,758~~ ~~1,205,248~~ ~~(995,918)~~ ~~161,684~~ ~~1,558,772~~ Restricted funds Research projects 107,853 204,493 (228,321) - 84,025 Armed Forces project 75,602 - (74,248) - 1,354 The Natonal Lotery - 46,806 (46,806) - - Bristol Myers Squibb - 21,508 (19,402) - 2,106 ~~183,455~~ ~~272,807~~ ~~(368,777)~~ ~~-~~ ~~87,485~~ Total of funds ~~1,371,213~~ ~~1,478,055~~ ~~(1,364,695)~~ ~~161,684~~ ~~1,646,257~~ Statement of funds - prior period Balance at Balance at Gains/ 31 March 1 April 2019 Income Expenditure (Losses) 2020 £ £ £ £ £ Unrestricted funds ~~General funds~~ ~~1,164,043~~ ~~1,000,832~~ ~~(909,253)~~ ~~(67,864)~~ ~~1,187,758~~ Restricted funds Research projects 87,240 187,000 (166,387) - 107,853 Armed Forces project 79,261 126,350 (130,009) - 75,602 ~~166,501~~ ~~313,350~~ ~~(296,396)~~ ~~-~~ ~~183,455~~ ~~Total of funds~~ ~~1,330,544~~ ~~1,314,182~~ ~~(1,205,649)~~ ~~(67,864)~~ ~~1,371,213~~

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Annual Report 2021

Notes to the Financial Statements for the period ended 31 March 2021 (continued)

18. Statement of funds (continued)

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

Research projects are primarily of grants from organisations and private donations received towards the payment of grants to trusts for nurses.

The Armed Forces project is grant income being funded by the Chancellor using LIBOR funds.

The National Lottery funding was part of the Coronavirus Community Support Fund. The funds are to support the charity to help deliver services through the coronavirus pandemic. The funds were used to provide a telephone helpline support service. All funds were spent during the year.

The charity received two grants from Bristol Myers Squibb, £11.508, was received as part of the COVID 19 emergency funds. The funds were used to provide IT and equipment to enable staff to continue to provide the services while working from home during the pandemic. There is £2,106 unspent funds carried forward to be spent in 2021/22 financial year. The charity also received £10,000, the funds were used to provide continued support through the telephone helpline. All funds were spent during the year.

Notes to the Financial Statements for the period ended 31 March 2021 (continued)

19. Analysis of net assets between funds

Analysis of net assets between funds current year

~~Unrestricted~~ ~~Restricted~~ ~~Total~~ ~~funds~~ ~~funds~~ ~~funds~~ ~~2021~~ ~~2021~~ ~~2021~~ ~~£~~ ~~£~~ ~~£~~ Tangible fxed assets 7,227 - 7,227 Fixed asset investments 739,639 - 739,639 Current assets 946,877 87,485 1,034,362 Creditors due within one year (134,971) - (134,971) ~~Total~~ ~~1,558,772~~ ~~87,485~~ ~~1,646,257~~ Analysis of net assets between funds prior year ~~Unrestricted~~ ~~Restricted~~ ~~Total~~ ~~funds~~ ~~funds~~ ~~funds~~ ~~2020~~ ~~2020~~ ~~2020~~ ~~£~~ ~~£~~ ~~£~~ Tangible fxed assets 4,740 - 4,740 Fixed asset investments 626,476 - 626,476 Current assets 704,716 183,455 888,171 Creditors due within one year (148,174) - (148,174) ~~Total~~ ~~1,187,758~~ ~~183,455~~ ~~1,371,213~~

20. Pension commitments

The group operates a defined contribution pension scheme. The assets of the scheme are held separately from those of the group in an independently administered fund. The pension cost charge represents contributions payable by the charity to the fund. At the balance sheet date £1,357 (2020 £548) were payable to the fund and are included in creditors.

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Mesothelioma UK

Annual Report 2021

Notes to the Financial Statements for the period ended 31 March 2021 (continued)

21. Operating lease commitments

At 31 March 2021 the Group and the charity had commitments to make future minimum lease payments under non cancellable operating leases as follows:

	~~Group~~ ~~Group~~ ~~Charity~~ ~~Charity~~ ~~2021~~ ~~2020~~ ~~2021~~ ~~2020~~ ~~£~~ ~~£~~ ~~£~~ ~~£~~ Not later than 1 year 1,122 - 1,122 5,562 Later than 1 year and not later than 5 years 806 - 806 662 ~~1,928~~ ~~-~~ ~~1,928~~ ~~6,224~~

22. Related party transactions

Group

A L Coates is a Trustee of the parent charity and a partner at Irwin Mitchell Solicitors. During the period £21,905 (2020: £9,575) was receivable by the group from Irwin Mitchell Solicitors being £18,000 (2020: £8,000) sponsorship income plus £3,905 (2020: £1,575) from fundraising events and donations. Also during the period the group acquired will writing and other professional services from Irwin Mitchell Solicitors at a cost of £1,435 (2020: £4,557).

H Childs is a Trustee of the parent charity and a partner at Royds Withy King Solicitors. During the period £19,100 (2020: £20,600) was receivable by the group from Royds Withy King Solicitors being £18,000 (2020: £12,000) sponsorship income plus £1,100 (2020: £8,600) in donations.

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

23. Contributions of volunteers and supporters

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

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Mesothelioma Charitable Incorporated Organisation

Freephone: 0800 169 2409 Email: [e-mail] www.mesothelioma.uk.com

Registered Charity Number 1177039