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2023-03-31-accounts

TRUSTEES’ ANNUAL REPORT & ACCOUNTS

1 April 2022 – 31 March 2023

Fight Bladder Cancer was registered as an unincorporated charity in England and Wales on 8 July 2014 (1157763).

Fight Bladder Cancer was registered as a Charitable Incorporated Organisation on 28 April 2022 (1198773) and recognised as a cross-border charity in Scotland on 27 July 2022 (SC051881).

The Charity Commission of England and Wales approved merging the unincorporated charity with the Charitable Incorporated Organisation on 19 April 2023.

CONTENTS

CONTENTS
INTRODUCING Scottish Parliament highlights the
Fight Bladder Cancer 2 importance of increasing awareness
Introduction 2 of bladder cancer 34
Reference & administrative details 3 Fight Bladder Cancer gets NHS24’s
Structure, governance & management 5 Haematuria Guidelines Updated 34
Our history 7 Scottish Cancer Conference 34
Our team
Our volunteers		 11
14		 Innovative Licensing and Access
Pathway Patient Reference Group
National Bladder Cancer Audit		 34
34
ACHIEVEMENTS & PERFORMANCE 16 RESEARCH 35
Fight Bladder Cancer by numbers 18 Quality of Life 35
AWARENESS 19 Contributions to research 35
Increasing awareness 19 Supporting research projects 37
Fight Bladder Cancer in the news 19 FINANCIAL REVIEW 38
Other resources
Bladder Cancer Awareness Month
Fight Bladder Cancer Ofcially
Registered as a Charity in Scotland		 21
22
24		 Where our money comes from
How we spend the money
Partnerships		 38
39
40
Fundraising by friends of
OUR SUPPORT SERVICES 25 Fight Bladder Cancer 40
Private online forum 25 Financial review 46
Online forum statistics 25 Future plans 48
Zoom support groups 26 Independent examiner’s report 54
Phone, email, web and social media Statement of fnancial activities 56
support 27 Balance sheet 57
Patient Information Booklets 28 Statement of cash fow 58
Fight magazine 29 Notes to the fnancial statements 59
Living with a Stoma webinar 30
POLICY 31
Patient advocates making a diference 31
Steering Group for England, Wales and
Northern Ireland 32
National Cancer Plans - England 32
Scottish Parliament Event 33

Introducing Fight Bladder Cancer

The Trustees present their annual report and financial statements of the Charity for the year ended 31 March 2023. The financial statements comply with current statutory requirements, the Charity’s governing document, and the Statement of Recommended Practice: Accounting and Reporting by Charities preparing their accounts in accordance with the Financial Reporting Standard applicable in the UK and Republic of Ireland (SORP FRS 102) (edition October 2019, effective January 2019), and the Financial Reporting Standard applicable in the United Kingdom and Republic of Ireland (FRS 102).

OUR VISION

A future where everyone survives bladder cancer and lives long and well.

OUR MISSION

To lead the fight against bladder cancer, driven by patient and family insights.

OBJECTIVES AND ACTIVITIES

The Charity’s objectives are set out in its constitution, as summarised below:

Fight Bladder Cancer is the voice of all those affected by bladder cancer in the UK. The Charity was founded by patients and carers and will keep the patient at the heart of all our work. We are making a difference, but there is still much more to do.

We will continue to fight bladder cancer for as long as there is a need.

OUR VALUES

Patient-led Compassionate Action-orientated Ambitious

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Reference & administrative details

Registered Office:

The Village Centre, High Street, Chinnor, Oxfordshire OX39 4DH.

Charity Number

Fight Bladder Cancer was registered as an unincorporated charity in England and Wales on 8 July 2014 (1157763).

Fight Bladder Cancer was registered as a Charitable Incorporated Organisation on 28 April 2022 (1198773) and recognised as a cross-border charity in Scotland on 27 July 2022 (SC051881).

The Charity Commission of England and Wales approved merging the unincorporated charity with the Charitable Incorporated Organisation on 19 April 2023

Board of Trustees

The Charity is governed by its Board of Trustees. Its management is delegated to the principal staff, who draw on the board’s knowledge and experience from time to time as needed. During the year 1 April 2022 to 31 March 2023, the Trustees who served during the year and up to the date of signature of the financial statements of the Fight Bladder Cancer that was registered as an unincorporated charity in England and Wales on 8 July 2014 (1157763) were:

Since 11 May 2017

John Leslie Hester Since 11 May 2017 (died 11 February 2023) Alison Jane Birtle Since 19 July 2017 James William Forbes Catto Since 19 July 2017 Valerie Ann Hester Since 11 May 2017 Hilary Mary Baker Since 11 May 2017 Paul John Major Since 11 May 2017 Deborah Jean Major Since 11 October 2015

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Fight Bladder Cancer was registered as a Charitable Incorporated Organisation on 28 April 2022 (1198773) and recognised as a cross-border charity in Scotland on 27 July 2022 (SC051881). The Trustees who served during the year and up to the date of signature of the financial statements of this Charitable Incorporated Organisation were:

Since 28 April 2022

John Leslie Hester (died 11 February 2023) Alison Jane Birtle Valerie Ann Hester Deborah Jean Major Danielle Greenan (née Marr) Dorothy Mary Markham Paul Ian Michaels Andrew Richard Dearden Hilary Mary Baker Johnstone Shaw

Since 28 April 2022 Since 28 April 2022 Since 28 April 2022 (resigned 13 June 2023) Since 28 April 2022 Since 28 April 2022 Since 28 April 2022 Since 31 October 2023 Since 31 October 2023

Principal Staff

Dr Lydia Makaroff, Phd, CEO Sue Williams, Office Manager

Bankers

Lloyds Bank PLC 27–31 White Hart Street High Wycombe Buckinghamshire HP11 2HL

Solicitors

Brian S. Regler REGLER & COMPANY 98 High Street Thame Oxon OX9 3EH

Independent Examiners Charles Ssempijja FCA NfP Accountants Ltd Chartered Accountants 3rd Floor, 86-90 Paul Street London EC2A 4NE

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Structure, governance & management

Status and Governing Document

Fight Bladder Cancer became registered as an unincorporated charity on 8 July 2014. The unincorporated charity (1157763) is governed by its present constitution, which was adopted on 14 July 2013 and amended on 29 June 2014.

Fight Bladder Cancer was registered as a Charitable Incorporated Organisation on 28 April 2022 (1198773) and recognised as a cross-border charity in Scotland on 27 July 2022 (SC051881). The Charitable Incorporated Organisation is governed by its present constitution, which was registered on 28 April 2022.

Public benefit

Our work delivers public benefit by providing information, advice and support to anyone affected by a bladder cancer diagnosis. Our activities aim to reach diverse audiences, ensuring equity in awareness and support services.

This information and support help people live better with their bladder cancer by reducing the isolation that can come with a bladder cancer diagnosis, providing clarity on their treatment options and improving their quality of life with strategies to minimise the negative impact of treatment.

Our Bladder Cancer Awareness Month campaign reaches a broader audience, equipping people with awareness of the signs and symptoms of bladder cancer. This empowers them to speak with their GP if they have any concerns and increases the likelihood of earlier diagnosis and effective treatment. In addition to this, we are actively expanding our outreach efforts. A growing aspect of our awareness work involves reaching out to other organisations, such

as trade unions and professional bodies, by participating in their meetings and conferences. This initiative aims to raise our profile and further disseminate valuable information.

Our website, posters, magazines, handouts and information booklets raise awareness of the signs and symptoms of bladder cancer among patients, carers, GPs, consultants, nurse specialists and other healthcare professionals – increasing the likelihood of earlier diagnosis and effective treatment.

Our information booklets provide muchneeded, accessible information for patients and health professionals on aspects of the bladder cancer journey, thus enhancing the care of bladder cancer patients.

The Trustees affirm their commitment to the guidelines on public benefit set forth by both the Charity Commission and the Office of the Scottish Charity Regulator. In making decisions and setting strategies, due regard has always been given to the guidance provided by these regulatory bodies to ensure that our activities and objectives consistently deliver public benefit. This commitment is fundamental to our operations and guides our actions as we strive to support individuals and communities affected by bladder cancer.

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Board of Trustees

The Trustees are responsible for the governance and strategy of the Charity. The constitution of the unincorporated (1157763) Charity requires a minimum of five and a maximum of 10 Trustees at any one time. The constitution of the Charitable Incorporated Organisation (1198773) requires a minimum of three and a maximum of 13 Trustees at any one time.

During this financial year, all Trustee meetings were held via Zoom.

On appointment, the new Trustees attend an induction via Zoom with the principal staff and identify areas in which they may wish to take a particular interest. New Trustees are provided with an induction pack, including a copy of the constitution, recent Trustee board minutes, accounts, financial reports and helpful publications such as Scottish Charity Regulator’s Guidance and good practice for Charity Trustees and the Charity Commission’s The Essential Trustee .

RELATED PARTIES

The Board of Trustees established a balanced mix of governance, business, healthcare and administration skills. The majority of our Trustees continue to be bladder cancer patients or carers.

Fight Bladder Cancer supports the principles of good governance in the Charity.

Governance Code for smaller charities.

Trustees have independent control over and legal responsibility for the Charity’s management and administration.

They must: comply with the Charity’s governing document and the law; act in the Charity’s best interests; manage the Charity’s resources responsibly; act with reasonable care and skill; and ensure the Charity is accountable.

Trustees’ recruitment, induction and training

To recruit new Trustees, the Chair (with support from their fellow Trustees and the CEO) identifies the skills and insight required on the board to deliver the Charity’s strategy. A volunteer job specification is drafted and approved before being advertised widely. This includes Fight Bladder Cancer’s social media outlets, online recruitment sites and a direct approach to individuals with the appropriate skill sets. Potential applicants are invited to submit a

Fight Bladder Cancer Trading Ltd was a related party of the Charity. It was wholly owned by the charity as its trading subsidiary. It was registered with Companies House with Company number 09988853. It was a private limited company incorporated on 4 February 2016. It was dissolved on 04 July 2023, because future trading activities will be carried out through the Charitable Incorporated Organisation.

The other related parties are the Trustees and those individuals connected with them, including family members, business associates, and other charities in which they are involved. Trustees’ terms of office vary, with some positions having fixed terms and others not. Trustees serve without remuneration for their roles. However, they are entitled to claim reimbursement for reasonable expenses, such as travel costs associated with attending Trustee meetings.

Each Trustee must disclose any potential or actual conflicts of interest to the Chair and at Trustee meetings when relevant. In line with Charity Commission guidance, details of positions held by Trustees outside of the Charity are available to the public upon request from the Office Manager.

CV and, if shortlisted, will be interviewed by the Chair and another Trustee.

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REMUNERATION POLICY FOR KEY MANAGEMENT PERSONNEL

Fight Bladder Cancer ensures fair and competitive remuneration for our staff, particularly key management personnel such as the CEO and Office Manager, to attract and retain the expertise necessary for effectively delivering our vision and mission. The Board of Trustees, responsible for setting these remuneration levels, adopts a comprehensive and multifaceted approach in its decision-making process. This approach includes benchmarking against pay levels for CEOs in other charities of comparable size and income, alongside evaluating the skills, experience, and unique contributions of each individual. Additionally, the board carefully considers the need to attract and retain skilled individuals who can help achieve our charity’s goals, while maintaining fiscal responsibility and upholding our organisational values. This policy is part of our broader strategy to foster an inclusive and equitable work environment.

OUR HISTORY

Fight Bladder Cancer was founded by Andrew Winterbottom and his wife Tracy Staskevich in 2010 after Andrew’s misdiagnosis and subsequent Stage 4 bladder cancer diagnosis. They discovered a lack of available support for bladder cancer patients and their families in the UK and set out to provide that support through an online support forum and website. The charity officially became registered as an unincorporated charity in 2014 and has since focused on raising awareness for bladder cancer. In 2017, a new Board of Trustees was formed. In 2019, upon receiving a terminal bowel cancer diagnosis, Andrew stepped down, and encouraged Dr Lydia Makaroff to apply for the role of Chief Executive. Lydia now manages and leads the team with guidance from the Board of Trustees. Sadly, both Andrew and John Hester, the Chair of Fight Bladder Cancer, passed away in 2019 and 2023, respectively. Deborah Major stepped up as Interim Chair of the Fight Bladder Cancer Trustees after John Hester’s death in February 2023.

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OUR TRUSTEES

We are so grateful to our Trustees for the financial year 2022–23.

JOHN HESTER

CHAIR (1 APRIL 2022 – 11 FEBRUARY 2023)

A bladder cancer patient, John became the Chair of Trustees after a period as Treasurer. John passed away suddenly at his home in Powys, Wales on February 11th, 2023. John was an invaluable board member, and we deeply appreciate the strong values he brought to the organisation. His legacy will be seen in our future work, and he will be deeply missed.

DEBORAH MAJOR

VICE CHAIR (1 APRIL 2022 – 11 FEBRUARY 2023)

Deb is a bladder cancer patient and a lecturer at Brockenhurst College – nationally recognised for excellence and innovation in further education based in New Forest. She is an active member of the private online Fight Bladder Cancer forum and has created amazing videos to share her reasons for supporting the charity. She has organised the Fight Bladder Cancer Southern Soirée, the Southampton bladder cancer support group, and the Bournemouth Bladder Cancer Wee Walk.

‘I was honoured to be asked to be a Trustee because I wanted to give back to the charity that had helped me through frightening times in my life.’

HILARY BAKER

CNS, BSC (Hons), MSC Hilary, Macmillan Lead Nurse Specialist in Uro-oncology at UCLH, has over thirty years in uro-oncology/surgical nursing. She holds an MSc in Cancer Studies and a BSc in Cancer and Palliative Care, and is an advanced nurse practitioner and nonmedical prescriber. Hilary provides leadership and clinical expertise in urological cancer care, playing a key role in developing patient pathways. On part-time secondment with NCLCA, she focuses on advancing cancer nursing in London.

‘The role of the CNS in supporting bladder cancer patients is pivotal to their care and facilitating high quality, personalised care to patients/clients and relatives/carers.

PROFESSOR ALISON BIRTLE MB, BS, MRCP, FRCR, MD

Alison is a consultant oncologist, Manchester University Academic Health Science Centre Honorary Clinical Professor, and Honorary Clinical Professor at the University of Central Lancashire. Alison undertook general medical and specialist registrar oncology training in London Charing Cross and Westminster. She completed her MD thesis at the Institute of Urology, University College London, and the Academic Urology Unit, Royal Marsden Hospital. She is a past Chair of the National Cancer Research Institute bladder clinical study group. Her research interests include systemic therapy, chemoradiation, radiotherapy and survivorship.

‘There is much more to do to raise awareness and funding for this common cancer. The patient voice in bladder cancer must be heard.’

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PROFESSOR JAMES CATTO MB, CHB, PHD, FRCS (UROL)

Professor of Urological Surgery at the University of Sheffield and Honorary Senior Clinical Research Fellow at the University of Oxford, Jim qualified from Leeds University in 1994 and trained in York and Sheffield, UK, before a fellowship in Brisbane, Australia. He was appointed an honorary consultant urological surgeon in 2007 and specialised in Uro-Oncology. In 2014, James took over as editor-in-chief of European Urology. Jim has published more than 100 primary research manuscripts.

DR ANDREW DEARDEN

Andrew has been happily married for over 35 years, with three wonderful daughters, three marvellous sons in law and 5 grandchildren. He qualified as a GP in 1994, practicing in the Cardiff area. He was active in the British Medical Association serving in various roles both at Wales and UK levels finally as Treasurer of the British Medical Association until 2018. He has served on several Boards including the British Medical Association and British Medical Journal. He served as Treasurer of the World Medical Association and internal auditor for the CPME (Standing Committee for European Doctors). He returned to full-time GP Clinical work early in 2020 at the outbreak of the Covid pandemic. He has also served on several other charity boards in the past.

VALERIE HESTER

Valerie was the carer of a bladder cancer patient. Before her retirement, she had a long career as a nurse and midwife within the NHS and

attained the position of Senior Midwifery Sister in North Powys. She has experience caring for patients with complex needs and worked to improve the quality of services and outcomes for patients and carers. She is passionate about nursing and believes everyone has the right to the highest possible standard of respectful medical care.

‘I became a Trustee because Fight Bladder Cancer is a worthy charity. I support its mission. All patients and carers are entitled to be treated with dignity and respect and should be fully involved in decisions affecting their treatment, care, and support.’

PAUL MAJOR

Paul is a carer of a bladder cancer patient. He is also a Learning Skills Assistant at Brockenhurst College, a further education establishment in the New Forest, which has been nationally recognised for excellence and innovation.

‘I joined the Trustee board of Fight Bladder Cancer to utilise my medical and financial skills to help develop and expand the excellent work of Fight Bladder Cancer.’

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DOROTHY MARKHAM CHAIR OF THE SCOTTISH STEERING GROUP

Dorothy was diagnosed with bladder cancer in February 2016. During her journey, she realised that there was very little information for the public on bladder cancer. She

got in touch with Andrew Winterbottom, founder of Fight Bladder Cancer, who taught her how to raise awareness and work for Fight Bladder Cancer. Scotland has been her home for over 40 years, so setting up a Scottish steering group four years ago gave her an excellent opportunity to move forward with Fight Bladder Cancer. The group has been able to get face-to-face meetings with many Scottish Members of the Scottish Parliament and keep them advised of developments within Scotland. She hopes to share her experiences in Scotland

to create a partnership based on a commitment to raising awareness, offering support and, as with all charities, raising more finance for research, staffing and other services.

‘As an older bladder cancer patient, who was 80 at the time of diagnosis, I have been pleased to share my journey with younger patients, I’m proud to chair the Fight Bladder Cancer Scottish Steering Group and to be a Fight Bladder Cancer trustee. Bladder cancer is overlooked and it’s not fair for the patients. So much work remains to be done to bring bladder cancer improvements up to speed in Scotland and in the UK. My determination to campaign and make the world a better place remains unwavering.’

DANIELLE GREENAN (NÉE MARR) VICE CHAIR SCOTTISH STEERING GROUP AND BLADDER CANCER PATIENT Danielle is a bladder cancer survivor. She was diagnosed in 2015 whilst pregnant with her daughter. Danielle and Dorothy were invited to visit parliament and successfully secured a motion within the Scottish Government in 2020 to improve outcomes and raise awareness of bladder cancer. Danielle’s background is in healthcare administration, and she works as a treatment advisor at Spire Hospital in Edinburgh, where she has over ten years of experience. She has also worked as an emergency call handler for the Scottish Ambulance Service.

‘I understand how difficult the patient journey can be and feel it is important to try to make a difference to improve this in any way I can.’

PAUL MICHAELS

Paul is a bladder cancer patient and a Managing Partner in an IT consulting company. He has many years of experience working for public and private industry clients – helping organisations improve their information technology and save money on their services. His capabilities include benchmarking, evaluation, and governance. His recommendations are based on factual data rather than opinion. Some of his clients include businesses in the healthcare sector.

‘Fight Bladder Cancer has made such a difference to me. Through it all, I’ve had the Wee Family behind me.’

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OUR TEAM

DR LYDIA MAKAROFF CHIEF EXECUTIVE (FULL-TIME)

Dr Lydia Makaroff is the CEO of Fight Bladder Cancer and President of the World Bladder Cancer Patient Coalition. Previously she was the Director of the European Cancer Patient Coalition. She has a PhD in immunology and a Master’s degree in Public Health. She has worked in academia, the pharmaceutical industry, and the non-profit sector. She has conducted medical research at

the Australian National University, worked as a post-doctoral fellow at the University of Washington, and worked for the International Diabetes Federation. Lydia likes to cycle through green spaces with her loved ones and read a book with a cat on her lap.

SUE WILLIAMS OFFICE MANAGER (PART-TIME)

With over 30 years of experience in bookkeeping, Sue joined Fight Bladder Cancer in 2016. Sue answers telephones, deals with orders, replies to enquiries for leaflets and posters, covers the admin tasks and pulls together the financial paperwork. Together with colleagues, she occasionally loads her car with all things Fight Bladder Cancer and drives to a urology conference or health awareness day to set up our stand. Away from the office, she enjoys needlecrafts, drawing, beadwork, crosswords, Sudoku and reading. She loves hunting for vintage fabrics and beads at car boot sales and markets.

MELANIE COSTIN

SUPPORT SERVICES MANAGER (PARTTIME) AND BLADDER CANCER PATIENT

Melanie discovered the Charity early on after her bladder cancer diagnosis. Her role has many façets, including providing information and support, talking at support groups, raising awareness, running the Bladder Buddy service, and being an administrator on our forum. She gets the patients’ voices heard when attending medical meetings. Her current job is far from her pre-bladder cancer life as a technical draughtsperson. Away from work, Melanie runs an art class for dementia patients. She loves cats, music and travel and is a cemetery photographer.

AMY JACOB FUNDRAISING COORDINATOR

After years of volunteering with various charities, Amy joined Fight Bladder Cancer to help with our fundraising efforts. Her responsibilities involve working closely with our fundraisers, offering them support and guidance. Amy also processes our donations and sends out patient support materials. Outside of work, Amy has a degree in Anthropology and is a keen traveller. She enjoys true crime podcasts and watching the latest Netflix documentary.

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VICKY SALES COMMUNICATIONS ASSISTANT (FULL-TIME) AND BLADDER CANCER CARER (JANUARY 2022 – FEBRUARY 2023)

Vicky has joined the charity to help with communications after completing a Journalism degree at the University of Sheffield. She has worked in Prague with their largest English-speaking media outlet, Prague Morning , alongside completing a qualification in Digital Marketing Technologies and Creative Methods for Social Media Marketing with Erasmus plus. Over the years, she has volunteered in many social media roles and written for various national magazines and publications. Vicky discovered the Charity after her dad was diagnosed with bladder cancer and hopes to continue helping with the Charity’s excellent patient work. Vicky enjoys travelling, art and the company of her dog, Dolly.

CJ BROWNE OFFICE ASSISTANT (FEBRUARY 2022 – AUGUST 2022)

CJ graduated from Oxfordshire Hospital School and Icknield Community College with a Diploma in Animal Care from the Buckinghamshire College Group. She has previously worked at St Tiggywinkles Wildlife Hospital, Chinnor Hill Kennels, and the Chinnor Village Hall. CJ plays classical guitar, is an animal photographer, and has cats, two rats and a leopard gecko.

MICHAEL SLOANE BOOKKEEPING ASSISTANT (PART-TIME) AND BLADDER CANCER PATIENT

For over 29 years, Michael worked as an accountant for a fire and security alarm company. He runs the accounting system, data entry and reporting. Michael was diagnosed with bladder cancer in 2013, and whilst he has had a couple of recurrences, he has been clear for the past three years. Michael likes to cycle and has cycled from west London to Brighton several times. He has also enjoyed scuba diving in Australia and Malta.

SANA GILFILLAN POLICY AND COMMUNICATIONS MANAGER (MATERNITY LEAVE DECEMBER 2021 – SEPTEMBER 2022)

Sana drives Fight Bladder Cancer’s policy work to advocate for improved bladder cancer care in the UK. She builds and helps manage relationships with key stakeholders in Government, the NHS, healthcare institutions and other charities to achieve the Charity’s policy goals. She is also responsible for overseeing Fight Bladder Cancer’s communications strategy. Sana previously managed the global privacy and cybersecurity portfolios at a trade association in Washington DC, and Brussels. Before relocating to Scotland, Sana lived in Canada, the USA, UAE and Pakistan. She has a degree in International Relations and Political Sciences from the University of Toronto and a Masters in Media and Communications Governance from the London School of Economics. Sana likes to travel, try new foods, and go hillwalking in her free time.

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SHANNON BOLDON POLICY MANAGER (MATERNITY COVER DECEMBER 2021 – SEPTEMBER 2022)

Shannon supports the implementation of our policy work to improve bladder cancer care in the UK. She has extensive experience working in health policy – interning at the World Health Organization in Geneva, establishing All. Can International at the Health Policy Partnership and working as an independent Health Policy Consultant with various clients, including the World Bladder Cancer Patient Coalition. She holds a Masters in Global Health and Development from University College London and a BSc in Biochemistry from Acadia University. In her spare time, Shannon enjoys spending time with her puppy, Winston, and exploring the city of Toronto.

NICKI GILDER OFFICE ASSISTANT

Nicki joined the Team at Fight Bladder Cancer HQ in July 2022 as an Office Assistant. Living locally

and being semi-retired gives her the opportunity to be flexible and support the Office Team as needed. Her main role is to post out the Patient Information Booklets, Nurses and GP packs, and any promotional goods ordered via the Website. Her interests are walking, tending her Allotment to within an inch of its life and nurturing her growing family. Nanny duties are top of her wish list, but to relax she is happy bent over a jigsaw!

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OUR VOLUNTEERS

Our work would be impossible without the dedicated volunteers who give up their time to support Fight Bladder Cancer with their skills, expertise, knowledge and enthusiasm. We are hugely grateful to everyone who contributes to our work.

They may be:

ANUPAMA GAMANAGARI EDITORIAL VOLUNTEER (PART-TIME)

Anupama Gamanagari is the Editorial Volunteer for Fight Bladder Cancer. She assists with the website, newsletter, and Fight magazine. She also helps us plan our

communication activities around Bladder Cancer Awareness Month. She has a Bachelor of Arts with Honours in Media and Communication from Birmingham City University and a Bachelor of Arts in Mass Media from Wilson College. She is also a charity shop volunteer and a photographer who has been published in BBC Midlands, Amateur Photographer Magazine, NoGopress and Docu Magazine.

Every contribution is valued, and every one of our volunteers deserves massive thanks.

THANK YOU!

ANNE MACDOWELL CORPORATE PARTNERSHIPS

Anne has 40 years of experience in the healthcare industry. She has lived and worked in the US, France, the UK and Switzerland. She has an undergraduate degree in music and an MBA from Harvard Business School. Anne stopped paid work in 2017 and is currently working with charities on a volunteer basis. Her role with Fight Bladder Cancer is to build mutually beneficial relationships between the charity and its corporate partners to improve outcomes for cancer patients. Anne has been married to her husband for 30 years, and they have two grown children. She enjoys travelling, learning, singing and sports in her spare time.

MARTIN LEWIS

ASSISTANT PROJECT MANAGER VOLUNTEER (PART-TIME)

Martin is working on several projects for Fight Bladder Cancer that must be delivered this year. These vary from worldwide clinical trial

monitoring, event management, patient support groups database building and awareness campaigning with worker’s unions. He is a qualified engineer and project manager, amassing over 25 years of experience delivering projects in the automotive industry. When not at work, Martin likes to be outside, cycling, running, and walking. He enjoys travelling, often including camping in his VW campervan.

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JULIA MACLEOD ADVISOR

Volunteer Chair of the England, Wales & Northern Ireland steering group (part-time) and bladder cancer patient.

Julia spent over 21 years working in the voluntary sector. She was a Regional Director working to influence improvement in services and strategic planning before she took voluntary redundancy and started her “gap years”. She lives with bladder cancer - when she had a recurrence in 2021, Julia was signposted to Fight Bladder Cancer and having received great support wanted to offer something back - being able to share skills and experience as a volunteer advocate. She currently supports the England, Wales & Northern Ireland steering group as Chair, and would like to see the group grow so that the patient voice can be effective in-service delivery improvement and influence planning as well as raising awareness.

Since taking redundancy, Julia’s main interests are walking her dog with family and friends in the Peak District where she lives, line dancing several times a week, reading, sewing, enjoying her garden and recently started learning crochet. She has a lovely family - and three wonderful grandchildren.

LAURA MACKENZIE VOLUNTEER PATIENT ADVOCATE (PART-TIME) AND BLADDER CANCER PATIENT

Laura has 20 years’ experience in project management and service delivery within the IT sector. She has been passionate about self-advocating and advocating for others living with bladder cancer or stomas, since her diagnosis with stage 4 muscle invasive bladder cancer in 2017. She underwent life-saving surgery with the intent to cure the cancer.

Laura has been cancer free for over 5 years and lives with a permanent colostomy and urostomy. As a FBC Volunteer she is involved in several initiatives to raise awareness of bladder cancer.

Laura lives in the West of Scotland with her husband and works full-time as a Global Service Delivery Manager. When she is not working or volunteering, she can be found cooking up a storm in the kitchen or on a far-flung beach in the Caribbean or the Indian Ocean.

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Achievements & performance

Despite a 16% decline in new bladder cancer cases over the past decade, the challenge remains substantial. Annually, more than 21,181 individuals are diagnosed with bladder cancer in the UK, and over 100,000 are living with this condition. These figures underscore the immense responsibility faced by Fight Bladder Cancer in addressing this significant health concern.

It is with great pleasure that we present to you the 2022-2023 Trustees Report, which outlines the successes and challenges faced by the charity over the past year. Despite the many obstacles that we have encountered, we have continued to make great strides towards our mission of improving the lives of those affected by bladder cancer.

We carefully monitor and evaluate our progress to optimise our resources and demonstrate our impact in these four key areas:

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While we are proud of our achievements, we must also acknowledge the challenges we have faced over the past year. John Hester, Chair of Fight Bladder Cancer, passed away suddenly at his home in Powys, Wales on February 11th, 2023. John was an invaluable board member, and we deeply appreciate the strong values he brought to the organisation. His legacy will be seen in our future work, and he will be deeply missed. In light of this loss, I stepped up as Interim Chair of the Fight Bladder Cancer Trustees. I have been a Trustee and Vice-Chair of the charity since 2015 and was diagnosed with bladder cancer in 2012.

The financial deficit has been a significant concern, and we have had to make difficult decisions to curtail future spending. Our Trustees have worked tirelessly to review our financial strategy and to identify ways to increase our revenue and diversify our funding sources. We recognise that we need to

improve the diversity of our funding courses in the future. We have begun exploring new fundraising opportunities and have invested in our digital platforms to increase our visibility and attract new supporters.

Despite the challenges we have faced, we remain committed to our mission of improving the lives of those affected by bladder cancer. We are confident that the measures we have put in place will enable us to continue to make progress towards this goal and to support those who need our help the most.

We remain grateful for the support of our donors, volunteers, and partners, who have continued to stand by us and help us to achieve our goals. We are committed to being transparent and accountable in all our activities, and we look forward to working together with you to make a difference in the lives of those affected by bladder cancer.

Thank you for your continued support.

DEBORAH MAJOR Bladder Cancer Patient

& Interim Chair of Fight Bladder Cancer

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FBC by numbers

----- Start of picture text -----
FIGHT MAGAZINE
2,987 [(vs 2,085, +143%)]
copies of Fight #13
magazine were
distributed, of which
893 [(vs 615, +145%)]
were print copies to
individuals and 1,393
(vs 1,470, -5%) were in
bulk packs to healthcare
professionals
HOW THEY WORK TOGETHER TO GIVE YOU THE BEST CARE
DISCIPLINARY TEAMYOUR MULTI-FOCUS ON
FROM GP TO COUNSELLOR, SURGEON TO STOMA NURSE
FBC IS RAISING THE PROFILE OF BLADDER CANCER
HOW THE SUPPORT TEAMS WORK
AWARENESS
BEHIND THE SCENES
YOUR OWN SUPPORT GROUP The ONLY magazine for people affected by & working with Bladder Cancer
# 12
A DAY IN THE LIFE
351621
Chinnor X39 4DJ Cancer
cer.co.uk cer.co.uk
CancerUKCancerUK MAGAZINE
MAGAZINE
27/03/2022 09:03
SLEEP, LIFE-BALANCEDIET, EXERCISE,
COMMUNICATION,
MINDFULNESSCOMBATTING ANXIETY,
FINANCESBLADDER REPLACEMENTS, COPING WITH FATIGUE,
The ONLY magazine for people affected by & working with Bladder Cancer
YOURSELFAFTER LOOKING
MINDA HEALTHY
PRACTICALITIES
SEX
DJ ncer nor
LEARNING TO DISCUSS AND FACE CHANGES WITH POSITIVITY
# #13
1
YOUR LIFE TO HOW TO LIVE THE FULL WITH CANCER:LIVING WELL WE FOCUS ON
Fight Bladder Cancer
from the charity
MAGAZINE #12
Fight Bladder Cancer
from the charity
13#MAGAZINE
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~~WEBSITE SUPPORT~~

113,432 (vs 54,349 last year, +209%) sessions on our website

www

84,408 35,172 (vs 38,127, +220%) (vs 29,209 + 120%) unique users downloads from of our website our website

F ~~ORUM SUPPORT~~

5,837[(vs 5,448, +107%)] members of our private online forum 1,550[(vs 1,280, +121%)] requests to join reviewed 737[(vs 519, +142%)] new forum members approved

S ~~UPPORT GROUPS~~

10[(vs 0) ][face-to-face][ support] meetings advertised 7[(vs 12, -42%)] online support meetings

132[(vs 142, -7%)] people assigned a Bladder Buddy

SUPPORT

1,961 (vs 1,923, +102%) patients supported

863 (vs 855, +108%) phone calls made 1,026 (vs 949, +108%) phone calls received

772 (vs 765, +101%) carers supported

899 (vs 892, +101%) support emails sent

~~HEALTHCARE PROFESSIONAL SUPPORT~~

450[(vs 263, + 171%) ] healthcare professionals supported

7,500[contact cards ][sent to ] 30 healthcare professionals

701[(vs 522, +134%)][digital copies ] were sent out

~~RESEARCH~~

17[(vs 16, +106%)][national ] and international conferences attended.13 (vs 19, -32%) contributions to research papers Bladder Cancer Awareness Month

~~BLADDER CANCER AWARENESS MONTH~~

45,000[(vs 170,000, -74%)] impressions on Twitter/X

31,706[(vs 11,466, +280%)] people reached on Facebook

14,100[(vs 5,600, +252%)] impressions on LinkedIn

10,807[(vs 0)][impressions on Instagram ] from the charity Fight Bladder Cancer

PATIENT INFORMATION BOOKS DISTRIBUTED

An additional 249 folders containing reference copies of all booklets sent to health professionals – making a total of 389 folders since their launch in November 2020.

6161[(vs 7,705, -20%)][ individual booklets ] were posted this year

17,586[(vs 14,703, +120%)] digital copies of booklets were downloaded or emailed

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Awareness

Increasing awareness

One of our primary concerns is to increase awareness of bladder cancer among the general population and to take every opportunity to disseminate information about the causes and symptoms of bladder cancer, as well as the Patient and Carer Support by the Fight Bladder Cancer team and treatments available to bladder cancer patients.

World Bladder Cancer Patient Coalition

We were featured in the World Bladder Cancer Patient Coalition’s digital world tour in May, sharing the message ‘Have you ever heard about bladder cancer?’ and highlighting the impact of bladder cancer in the UK. We were featured in the World Bladder Cancer Patient Forum membership and spoke about how our Patient Information Booklets can boost joint decision-making between patients and health professionals.

NHS England

Fight Bladder Cancer worked with NHS England and Public Health England on a new ‘Help Us Help You’ awareness campaign highlighting abdominal and urological symptoms. The campaign told people to contact their GP practice if they have seen blood in their pee – even just once. The NHS wants to see them.

FBC in the news

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British Association of Urological Nurses Conference

In November 2022, the charity attended the British Association of Urological Nurses (BAUN) conference in Edinburgh. The charity’s main objective at the event was to share their awareness and support materials with urology nurses. They also met with their colleagues and volunteers in Scotland, where Fight Bladder Cancer is also officially registered.

We are incredibly grateful to Ravi Ruparel and his team at Platform for creating, making and donating QR key chains for nurses, which leads to Fight Bladder Cancer’s patient information booklets. They went down a treat with nurses at the BAUN conference!

British Association of Urological Surgeons Conference

We attended the British Association on Urological Surgeons Conference after a two-year hiatus following virtual conferences in 2020 & 2021. At the conference, we met with colleagues and friends from the sector to hear about the latest research and share our ideas and challenges from the past year. The patient voice is central to everything we do at Fight Bladder Cancer, so that was our focus when meeting with colleagues across the sector.

Experiences before and after bladder removal

Johnstone – a patient representative from Fight Bladder Cancer was invited to speak at the BLADDR World Bladder Cancer Congress about their experiences before and after bladder removal and how health professionals can improve their communications with patients.

European Association of Urology We participated in a strategy meeting with the European Association of Urology patient advocacy group to improve the urology patient journey. We also spoke at the European Association of Urology and European Association of Urology Nurses congress about how they can better understand the patient experience and highlighted how to address the needs of the patients before and during their treatment.

MELANIE COSTIN SUPPORT SERVICES MANAGER

‘A lot has been accomplished this year to help patients and carers of bladder cancer, and it was an honour to present our poster showing some of our work at the European Association of Urology congress this year and pick up a top three award. It was great to meet so many people in ‘real life’ conferences again, the atmosphere has been fantastic. People have been finally catching up with old friends and colleagues, and new ones too.’

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Other resources

GP pack

The GP pack includes posters about the signs and symptoms of bladder cancer and the support we offer. They can be ordered online at fightbladdercancer.co.uk/gp along with a sign-up sheet for GPs to use in their surgeries.

Car stickers

We have designed free car stickers to raise awareness of bladder cancer.

DAVID

‘The GP awareness of bladder cancer needs to be improved to ensure early diagnosis, as it is essential to treat this quickly to provide the best patient outcome. Fight Bladder Cancer plays a significant role in getting that message out there, for which I am very grateful.’

Contact cards

We supply free, high-quality personalised contact cards for all medical professionals working with bladder cancer patients, which can be ordered online at fightbladdercancer.co.uk/contact.

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Reg charity 1157763 51 High Street, Chinnor, Oxon OX39 4DJ
facebook.com/groups/bladdercanceruk
T: 01844 351621
E: support@fightbladdercancer.co.uk
W: fightbladdercancer.co.uk
For additional information & support
24 Hour Online Forum:
ADVANCED CLINICAL PRACTITIONER
01709 425964
amy.boler@nhs.net
Amy Boler
T
E
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Bladder Cancer Awareness Month

May is the month we focus on raising awareness of bladder cancer by sharing stories of hope, optimism and love. Fight Bladder Cancer highlights the impact of bladder cancer, promotes awareness of the symptoms and urges policy improvements.

ALISON

‘This year, I really enjoyed working on a successful campaign for Bladder Cancer Awareness Month in May! I’ve loved being part of such a passionate, committed and hard-working team’

In May 2022, we raised awareness and broke the stigma around symptoms deemed embarrassing by patients to promote early diagnosis and save lives. Bladder Cancer Awareness Month is an opportunity to draw attention to bladder cancer with over 21,000 people diagnosed in the UK every year. Despite its prevalence, bladder cancer receives just 1% of cancer research funding in the UK.

Common symptoms of bladder cancer include blood in the urine, a recurring UTI, frequent urination or pain when urinating, and abdominal, lower back, and pelvic pain. Patients are often too embarrassed to discuss their symptoms or seek medical advice.

Fight Bladder Cancer aimed to spark conversations and drive awareness around the disease to encourage people to speak openly and seek medical care as soon as possible.

Early diagnosis offers a significant increase in the chance of long-term survival and quality of life. By ensuring early diagnosis and seeking medical advice and care, the survival rate for bladder cancer can be up to 90%. Fight Bladder Cancer is raising awareness to continue supporting and making a difference for people affected by bladder cancer.

We developed a Bladder Cancer Awareness Activity Calendar to cover the 31 days of May.

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Thanks to all our Wee Walkers

The Fight Bladder Cancer Wee Walks are always a highlight of Bladder Cancer Awareness Month, as they bring the community together in an inclusive way to chat, make friends, share stories, and raise awareness and funds. Our 2022 events were no exception! Wee Walks took place near our HQ in Chinnor, and in Bournemouth and Falkland, and they were all a lot of fun.

We love these pictures from the event which was organised by Fight Bladder Cancer Trustees Paul and Deb Major.

Our Chinnor and Falkland events were equally fantastic, even if there were no tiger costumes in sight. The weather was beautiful, the scenery equally so, and a great day was had by everyone involved.

Take one tiger costume, one sunny day, and a group of fabulous fundraisers, and what do you get? A fantastic Wee Walk on Bournemouth seafront!

Bubbles for bladder cancer

31 May is a special day for the Fight Bladder Cancer wee community. We blow bubbles to remember all those affected by bladder cancer and those we have lost. We were bowled over by the number of people who took part in blowing bubbles with us this year.

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Fight Bladder Cancer Officially Registered as a Charity in Scotland

Fight Bladder Cancer was officially registered as a cross-border charity in Scotland. This achievement would not have been possible without the hard work and dedication of the Scottish Steering Group, which comprises patients, family members, doctors and nurses, urological consultants, and community organisations. We would like to extend our heartfelt thanks to all our volunteers who worked tirelessly to make this happen.

In addition, our community champions and patient ambassadors have been tirelessly working to raise awareness and spread information about bladder cancer prevention, early diagnosis, and fundraising in their local communities. We are excited to continue growing our program of patient ambassadors, who are involved in proofing materials, speaking at conferences, and providing expert guidance in medical and policy settings.

Scottish patients have been an integral part of our charity, providing invaluable input into our patient and community information materials, co-creating our program in Scotland, organizing local support group meetings, and offering peer support to others. We are proud to support patients, family members, and healthcare professionals through our private forum, support groups, and one-to-one linkups across multiple locations in Scotland.

As we move forward, Fight Bladder Cancer aims to support even more patients, family members, and healthcare professionals in Scotland. With targeted patient information, peer support, awarenessraising initiatives, and early diagnosis messaging, we hope to reach even more people in need.

Social media

Our social media strategy focused on real-life stories from patients and family members. We adapted the World Bladder Cancer Patient Coalition theme of “Don’t Go Red” for our audiences, and used branded graphics used throughout to give the content a campaign feel. The campaign tone was understanding, empathetic, helpful and positive.

Total impressions: 102,013 Total engagements: 8,909 Total page view: 9,374 Total new followers gained: 188

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Our support services

Private online forum

Members include patients, family members, carers and medical professionals. Everyone gets answers to their questions. The support from other welcoming patients and carers can be a boost at a scary and often lonely time. Many people who have lost their loved ones stay with us on the forum for an extended period after their loss to support others.

CHRISTINE

‘Fight Bladder Cancer has made such a difference. It is like having a security blanket; you might not need them, but they are there if you do. You can ask others for advice if you are concerned about anything to do with your bladder cancer journey.’

Online forum statistics

As of 31st March 2023, our online private forum had 5,837 members, a 6.5% increase from 5,480 members on 31st March 2022. The forum is supervised around the clock by admin and moderators globally. In March 2023, 4,012 of its members were active, marking a 15.1% rise from the 3,485 active members in the same month the previous year.

In April for example, one of our busiest months, we had over 1,100 posts asking for support or letting people know of their latest results or news.

Our busiest time on the forum during March 2023 was in the evening on Wednesdays.

During the financial year 2022-2023, the private online support forum received 1,550 requests to join and welcomed 737 genuine new members. When requesting to be admitted, new members are asked questions about who they are and their reasons for joining. The questions aren’t compulsory, although the majority are happy to share these details, which allows us to gain some valuable insights.

More members joined in the spring months, contrasting to last year when the summer months welcomed more new members. Appointments getting back on track after the pandemic, as well as those coming forward with renewed confidence in seeking a medical opinion. The Fight Bladder Cancer literature now has a much wider reach after all our efforts into signposting, and we have seen this with the growing popularity of our Patient Information Booklets.

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In some months, we can see that the number of carers was higher than the number of patients; this represents the central core of patients that we support who are older and being looked after by someone more likely to search for support on an online forum. We also have several family members join together to support their loved one.

We can see that the USA has by far the second largest number of joiners. Joiners from other areas are generally Englishspeaking, including ex-pats living in Europe. However, we support some nonEnglish speaking members and can signpost them to relevant support in their own language, if available.

Most new members identified as female – both patients and carers. This could signify that more women are likely to seek out support on a forum than men, either for themselves or their loved ones.

Zoom support groups

Our regular Zoom support groups continue to allow us to be in touch with people located in many different areas. Our virtual meetings can be attended by people from places such as Portsmouth, Yorkshire and Scotland; therefore, we can offer an enhanced sense of humanity and community.

We have lovely chats as well as discussing various procedures people had coming up and answering questions. If you would like a bit of extra support, or just fancy seeing some faces and to not feel so alone with things, then you would

COLIN, BLADDER CANCER PATIENT ‘Fight Bladder Cancer has been immensely helpful to me through my journey.’

HOLLY ‘Fight Bladder Cancer reminds me that I am NOT alone.

Although there may not be many people in the same boat and the same age as me, I am part of a fantastic group; none of us wants to be part of it, but we are all warriors fighting this awful disease.

We may be the fighters, or you may be fighting with someone; there are so many people on the support group supporting their loved ones, asking for help & advice, asking for the right thing to say, sharing worries and concerns, and sharing their happy results and milestones.

None of us wanted to be here, yet we find ourselves part of this amazing family.’

be very welcome to register. All that are affected by bladder cancer are welcome, both patients and carers alike.

With more face-to-face support groups starting to open again, people are getting out and about, so the online Zoom support group is now held in alternate months.

Dorothy and Danielle hosted virtual women’s Scottish support groups throughout the year. Michelle Thomson, MSP for Falkirk East, attended the Scottish Women’s Bladder Cancer Support Group on 20th September, where she met women survivors and hear their stories. Michelle supports Fight Bladder Cancer in Scotland in its aim to raise awareness of bladder cancer. Michelle is aware that late diagnosis in women can lead to poor outcomes. She is interested in the journeys of women with bladder cancer in Scotland from their experiences before diagnosis to treatment and beyond.

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Phone, email, web and social media support

In addition to the 24-hour online support, we are also there for our members via telephone, email, web and social media.

Our telephone support line is available from 9.30 am to 4.30 pm Monday to Friday on 01844 351621, with a voicemail for messages outside these hours and numbers redirected while staff were working from home.

SUE, OFFICE MANAGER

‘We are proud to offer support and information to people who need urgent information and reassurance. I have received more referral calls this year from newly diagnosed and yet-to-be-diagnosed patients, and I am pleased that I can help ease their panic with good information and the offer of our support services. ’

Website

The most popular pages are Downloads, Just Diagnosed and Getting Support. We conducted a complete refresh of every single webpage and integrated our support pages with the downloadable Information Booklets. The most popular time to visit is Sunday afternoons.

SANDRA

‘When I was diagnosed with bladder cancer, I had no idea where to turn for the information I so desperately needed. I stumbled on the site by happy accident and not only did I find the information I needed but I also discovered a massive support network – The Wee Family.’

Social media

At the end of March 2023, Fight Bladder Cancer’s social media followers showed notable changes compared to March 2022:

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Patient Information

Patient Information Booklets

Endorsed by the British Association of Urological Surgeons, the British Association of Urological Nurses, The Urology Foundation, and the British UroOncology Group, the series of 11 booklets have been widely distributed and praised by patients, carers and professionals.

Fight Bladder Cancer launched their new “A to Z Carers Guide” at the annual British Association of Urological Nurses (BAUN) conference. The guide is designed to support and empower carers of people living with bladder cancer, providing them with essential information and resources to help them navigate the challenges of caring for their loved ones.

DANNY NURSE

‘I regularly give out leaflets for your organisation as I think your literature is wonderful for our patients.’

The launch of the guide was met with enthusiasm and positive feedback from attendees at the conference, many of whom expressed their appreciation for the much-needed resource. Fight Bladder Cancer’s team members were on hand to answer questions and provide additional information.

Distribution

All Patient Information Booklets are free for download from the Fight Bladder Cancer website at fightbladdercancer.co.uk/downloads

The “A to Z Carers Guide” is a valuable addition to the range of resources offered by Fight Bladder Cancer, which includes information booklets, online support groups, and a comprehensive website with up-to-date information on bladder cancer. With the launch of this guide, we demonstrated our commitment to supporting not only those living with bladder cancer but also those who care for them.

Extending the series

At the end of this financial year, we began the process of developing and finding funding for New Developments in Treatment for Bladder Cancer . Work is ongoing, and we aim to publish in 2024.

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who care for them.
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Fight magazines

We continued to publish our Fight magazine and produced one in 2022–23. Patients, carers and professionals contribute to various articles and features, including information, research and personal stories. Each magazine concentrates on a particular theme and is building into a library of valuable resources.

Fight #13

This edition focuses on living well with bladder cancer, featuring an array of fantastic articles that address key aspects of day-to-day life. Topics include diet, exercise, sleep, life balance, communication, anxiety, mindfulness, and fatigue. Additionally, there are insightful pieces on bladder replacements, managing finances, and navigating sexual health.

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LAURA, NURSE
‘The Fight Magazine
is also a welcome
read when it hits my
doormat. Not only
does it share real-
life experiences, but
medical information
is pitched at a level
for all to understand.’
Importantly, we delve
into the impact of sexual
function on patients and
how it profoundly affects
quality of life, offering both
information and support on
this critical issue.
You can read it at:
https://fightbladdercancer.co.uk/13
1 Costa-Requena G, Ballester Arnal R, Gil F. The influence of coping response and health-related quality of life on perceived social support
Communication can really help you. Share how you feel
Try your local support group
ARTICLEJANE BLOFIELD
Urology Oncology
CNS, Kent
Share
To be given a bladder cancer diagnosis has a huge impact on life. Suddenly the control you have over your ‘everyday’ is impacted by this
new, unwelcome intrusion, which no-one wants and no one invited to the party.I am a Urology Oncology Clinical Nurse Specialist at Kent and Canterbury Hospital, with an oncology background of 15 years. I love my job and I find my patients and their families and friends a constant source of inspiration and admiration. And I want to share with you something that has been demonstrated to me over and over again. Accept support from family, friends and neighbours. It is not a sign of weakness to ask for help or to feel unable to cope on your own. What’s more, on the practical side of things, you are sure to welcome offers of lifts to appointments for treatment, trips to the supermarket to stock you up with basics and, if you’re lucky, more home-cooked meals than your freezer can cope with! Having that support can make you feel less alone and more Jane Blofield
A problem shared is a problem halved, goes the old saying – and I agree. First of all, tell people you have cancer. Your family and friends are there to support you and they will want to help. Talking about your diagnosis and how you feel can help you and your family understand what in control. Most of you are lucky to have people desperate to support, to listen and to help, so I say use them, talk to friends about how you feel, don’t hold back – so many of you tell me about feeling afraid, angry, sad, positive, tired and sometimes alone. Share that with those closest to you.
you are going through and it makes them feel they can do something to lessen its impact. Before the Covid-19 pandemic, we ran a local Fight Bladder
Cancer support group, and I’m desperate to get ours back up and running as soon as we safely can. If a support group is your thing, then ask your CNS where your local group meets up and
when. A support group is a great place to talk to others going through the same thing, the same treatments, and to talk to other
This is edition #13 of our extensive range of features by patients, carers and professionals across the bladder cancer spectrum. Each edition has a special feature focusing on one aspect of bladder cancer care. Fight #1Fight #2Fight #3Fight #4Fight #5Fight #6Fight #7 : : : Our inaugural edition : : Quality of life : Sex and relationships : Robotic surgeryFBC manifestoHopes and dreamsNurses Fight magazine, and we have amassed an Fight #8Fight #9 the workplace Fight #10Fight #11Fight #12 disciplinary teams : : In memoriamCancer and : : : Mental healthCarersMulti - To download a copy of any of the magazines, go toIf you prefer a print edition, call or email To sign up to receive publication, go to contact-preferences fightbladdercancer.co.uk/downloadsinfo@fightbladdercancer.co.ukfightbladdercancer.co.uk/ Fight magazine on (0)1844 351621 Talking about and sharing your diagnosis with your loved ones and friends will not only give you emotional support, but studiesthat support can also help you to accept and adjust to your diagnosis. 1 have shown people fighting bladder cancer at different stages, from newly diagnosed to finished treatment stage. And if you are not a group type of person then that’s totally okay too. You’ll find what suits you.ramblings, please share how you feel with at least one other person who is close to you. But I do ask you to take just one thing away from my It will help you – I can promise you that.
SPECIAL FEATURE
… it will help you and those
who care for you.
Bladder
Cancer
always there for me’ .
‘I jump on the forum when I’m low so I never need to feel stupid or alone.’ Your CNS worrying times’. – ‘it was great to see a reassuring face at
to your chemo sessions’, ‘avoid Dr Google’, ‘a lovely warm bath to relieve cramps’.
rush recovery and eat what I fancied’.
breathing exercises that helped if I felt anxious’.
if you think of it, it needs an answer’.
at times; I had talking therapy and now I’m going from strength to strength’ .
humour’.
fullest; do whatever you want to, when you can’,
‘I got my energy back and just wanted to have new experiences, to celebrate being me’.
fightbladdercancer.co.uk
how you feel
The Fight back catalogue
Living
Well with
1
2
3
4
5
6
7
8
9
10
Cancer is not something
to be ashamed of, it’s
something that happens
to one in two of us.
The special feature in this
edition looks at some of the
things that can help and
support you through your
cancer journey, and give you
the strength and courage to
live life to the full.
Here’s 10 top things our patients have identified
that encouraged them to see the glass as half full,
not half empty. What would your top 10 be?
Friends and family – ‘my wife was my rock,
Fight Bladder Cancer private online forum –
Practical tips from other patients – ‘take snacks
Be patient – ‘I was told to be kind to myself, not to
Breathe – ‘I downloaded an app to my phone with
Ask questions – ‘there are no silly questions;
Seek professional support – ‘everyone needs help
Laugh – ‘whatever you do, don’t lose your sense of
Live! – ‘don’t just survive but live your life to the
13
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during cancer treatment. Palliat Support Care. 2015 Jun;13(3):683-9. doi: 10.1017/S1478951514000418. Epub 2014 Apr 28. P
LIVING WELL WITH BLADDER CANCER
LIVING WELL WITH BLADDER CANCER
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Living with a Stoma webinar

We held a webinar titled “Living with a Stoma.” The webinar aimed to offer helpful information and tips to empower people living with a stoma, answer common stoma-related questions, and share awareness and support materials with patients and healthcare professionals.

The webinar featured several speakers, including Sharon Fillingham, Nurse Advisor to the Urostomy Association and Mitrofanoff Support, David Ritchie, Bladder Cancer Patient and Advocate, and Susan Mullerworth, Bladder Cancer Patient and Advocate. The event was chaired by Lydia Makaroff, CEO of Fight Bladder Cancer, and attended by 56 participants, including 21 patients, 18 healthcare professionals, and caregivers. The poll data showed that the

attendees received the webinar well, with the most common rating being 10 out of 10. The impact of the webinar was significant, as it provided attendees with new information about living with a stoma and answered their questions. Moreover, the attendees came from various locations, including the United Kingdom, Australia, Ireland, the United States, and Spain, highlighting the global reach of the charity.

You can view the recording at: https://events.streamgo.live/ stoma-care-webinar/register

Fight Bladder Cancer plans to continue collaborating with the British Association of Urological Nurses to provide support and resources to patients and healthcare professionals.

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Policy change

Our policy work focuses on improving the experience and outcomes of bladder cancer patients in the UK. It is informed by the Exemplar Research Report, Exemplar Roundtable, and Exemplar Forum (fightbladdercancer.co.uk/ exemplar).

We partner with different organisations across the UK to achieve these goals.

We also established a group of dedicated patient advocates representing Fight Bladder Cancer externally. They provide feedback on our advocacy strategy and activities; they lead parliamentarian outreach across the UK, support

awareness-raising activities, especially in May (during awareness month) and share their personal experiences of bladder cancer to help drive change.

Patient advocates making a difference

Our fantastic patient advocates have been working extremely hard over the past few months to try and make a difference in how healthcare for bladder cancer patients is delivered. They have been working closely with our policy manager, Shannon, to contact their elected representatives about issues affecting them as a patient.

Beginning in May, during bladder cancer awareness month, Fight Bladder Cancer initiated a parliamentary outreach campaign to secure greater engagement with elected officials. The goal was to create a continuous dialogue with parliamentarians in the UK to ensure they are aware of key policy issues affecting patients, create bladder cancer ‘champions’ in parliament, and to raise the profile of bladder cancer by putting pressure on decisionmakers to pay greater

attention to the disease. Letters were sent to a total of 11 elected representatives, and we received a total of 6 replies to the letters – a 54% success rate. We had 3-total in-person meetings with elected officials, namely: Stuart McMillan MSP, Humza Yousaf MSP and Cabinet Secretary for Health, and Dr Ben Spencer MP. A parliamentary question was put forward in Westminster raising the issues that bladder cancer patients often face.

Johnstone met with the Cabinet Secretary for Health & Social Care, Humza Yousaf, to discuss bladder cancer from a patient’s perspective and to see how we can tackle patient issues. Mr Yousaf promised to read Fight Bladder Cancer’s reply to the 10-year cancer plan open consultation in Scotland and to consult Johnstone on future matters related to bladder cancer.

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Access to immunotherapy

When bladder cancer maintenance immunotherapy treatment was not recommended by NHS in England, we expressed our disappointment, called for discussions to resolve uncertainties around cost-effectiveness, and submitted an official comment.

Fight Bladder Cancer shared stories of the experiences of people living with bladder cancer at recent NICE meetings reviewing immunotherapies for bladder cancer. NICE has subsequently recommended immunotherapy as an option for:

Steering Group for England, Wales and Northern Ireland

The England, Wales and Northern Ireland (EWNI) Steering Group supports the creation of Fight Bladder Cancer’s advocacy strategy, priority projects and activities in England, Wales and Northern Ireland. They meet on Thursday evenings every two months to share updates and invite feedback and participation in all our policy, awareness, support and fundraising activities in the three nations.

National Cancer Plans – England

In 2022, Fight Bladder Cancer submitted a reply to England’s 10-year cancer plan open consultation. Our response highlighted several recommendations for bladder cancer in England. Currently, it is unclear how the government will incorporate our feedback into the upcoming Major Conditions Strategy, as the 10-year cancer plan has been scrapped due to the changes in government experienced throughout 2022. We continue to engage with the UK Parliament alongside our charity partners to ensure the strategy reflects our feedback.

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Scottish Parliament Event

Fight Bladder Cancer organised a bladder cancer awareness event in the Scottish Parliament, and we are delighted with the impact it had. The event was hosted by Stuart McMillan MSP, and attended by Maree Todd MSP, Minister for Public Health, Women’s Health and Sport, as well as other parliamentarians. The Members of the Scottish Parliament heard from patients, nurses, and doctors about the urgent need to raise awareness of bladder cancer and speed up diagnosis and treatment.

Our reception was a chance for our community in Scotland to come together to raise awareness of bladder cancer symptoms and share patient experiences and healthcare professional perspectives on bladder cancer. We were thrilled to see so many people come together to help us spread the word about this disease.

During the event, we heard from bladder cancer patients, who shared their personal experiences of being diagnosed and treated for bladder cancer in Scotland. We were moved by their stories and inspired by their courage. Consultant Urological Surgeon, Mr Param Mariappan, also spoke about the difficulties presented by bladder cancer treatment and called for MSPs to champion earlier diagnosis.

Scottish Parliament highlights the importance of increasing awareness of bladder cancer

Fight Bladder Cancer is pleased to announce that the Scottish Parliament has passed a motion on bladder cancer, led by Stuart McMillan, MSP from Greenock and Inverclyde. Over 25 other Members of the Scottish Parliament supported the motion, highlighting the importance of raising awareness of bladder cancer and improving policies for prevention, care, treatment, and support for people affected by the disease.

The motion also recognises that women are often diagnosed with bladder cancer at an advanced stage, leading to worse outcomes. The five-year survival rates for bladder cancer in Scotland are 52% for men and 37% for women. This highlights the need to improve referral policies to enable earlier diagnosis, which will help to save lives.

We are thrilled to see the Scottish Parliament recognising the importance of our mission. We will continue to work tirelessly to raise awareness of bladder cancer and improve outcomes for those affected by this disease.

Overall, the event was a huge success, and we are grateful to everyone who attended and helped us raise awareness of bladder cancer. We believe that events like this are crucial in our fight against bladder cancer, and we will continue to work tirelessly to improve bladder cancer care in Scotland and beyond.

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Fight Bladder Cancer gets NHS24’s Haematuria Guidelines Updated

Fight Bladder Cancer has successfully advocated for the NHS24’s haematuria guidelines to be updated, resulting in better outcomes for Scottish patients. The organisation’s Scottish Steering Group submitted a Freedom of Information request to NHS24 to understand how their triaging algorithms deal with patients presenting with bladder cancer symptoms. As a result of the FOI request and an additional review, Fight Bladder Cancer secured a meeting with an NHS24 Nurse Consultant to raise their concerns. They learned that there were no special alerts around painless or repeat haematuria in their system at present. Fight Bladder Cancer explained why this could potentially result in many bladder cancer patients not understanding the urgency of their symptoms and cause a delay in their treatment.

NHS24 has since agreed to task their Clinical Change Governance group with putting additional alerts into the triaging algorithm for haematuria. They have also added questions to the system to help understand a patient’s UTI history/frequency and made it so that this information will be passed on to their clinician. In addition, NHS24 has committed to checking their upcoming self-help UTI guidance and place a ‘minimal referral guidance’ note on the appropriate combinations of these symptoms in light of Fight Bladder Cancer’s discussion. These changes are expected to help many bladder cancer patients in Scotland catch their cancer and start treatment as early as possible.

Social Care to consider barriers to accessing GPs across Scotland to improve early diagnosis.

Innovative Licensing and Access Pathway Patient Reference Group

We are part of the Innovative Licensing and Access Pathway Patient Reference Group, which was established to ensure that patient views are an integral part of the delivery of the Innovative Licensing and Access Pathway ambition. The Patient Reference Group provides their expertise from the broader patient perspective, particularly about the Innovation Passport designation stage, Target Development Profile stage and the specific patient engagement tool of the toolkit. The Patient Reference Group works with the Medicines and Healthcare Products Regulatory Agency, the Scottish Medicines Consortium and the National Institute for Health and Care Excellence.

National Bladder Cancer Audit

Fight Bladder Cancer presented on ‘The Value of a National Bladder Cancer Audit’ at the British Association of Urological Surgeons Section on Oncology meeting.

JIM CATTO, CONSULTANT UROLOGIST

‘A national bladder cancer audit must be a priority. The national prostate audit drives standards of care. Fight Bladder Cancer will be key in speaking to HQIP – Healthcare Quality Improvement Partnership – part of NHS – for this.’

Scottish Cancer Conference

Johnstone Shaw (Scottish Steering Group) and Sana Gilfillan (Policy and Communications Manager) attended the Scottish Cancer Conference. Johnstone asked Cabinet Secretary for Health and

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Research

Quality of Life

The bladder cancer dataset from the NHS Cancer Quality of Life Survey is now publicly available. This follows our earlier call for bladder cancer data to be made available separately rather than grouped with other cancers. The survey results highlight the challenges faced by people living with bladder cancer, including difficulty completing daily activities, self-care, and mobility, as well as problems with pain, discomfort, anxiety, and depression. It is important to note that more people are surviving bladder cancer than ever before, but the long-term impact can be significant. Unfortunately, insights from bladder cancer patients are often not separated from those of patients with other urological cancers in key datasets, leading to a

lack of understanding about the unique experiences of those living with bladder cancer. At Fight Bladder Cancer, we welcome this new data as a step towards better understanding and addressing the challenges faced by bladder cancer patients.

Contributions to research

Fight Bladder Cancer contributed to the following research publications:

  1. Catto, J.W., Mandrik, O., Quayle, L.A., Hussain, S.A., McGrath, J., Cresswell, J., Birtle, A.J., Jones, R.J., Mariappan, P., Makaroff, L.E. and Knight, A., 2023. Diagnosis, treatment and survival from bladder, upper urinary tract, and urethral cancers: real-world findings from NHS England between 2013 and 2019. BJU international .

  2. Collacott, H., Krucien, N., Heidenreich, S., Catto, J.W. and Ghatnekar, O., 2023. Patient Preferences for Treatment of Bacillus Calmette-Guérin–unresponsive Non– muscle-invasive Bladder Cancer: A Crosscountry Choice Experiment. European Urology Open Science , 49, pp.92-99.

  3. Crawford, R., Thompson, A., Chang, J., Morrison, R. and Doward, L., 2022. PCR97 Patient and Caregiver Insight Into the Impact of Non-Muscle Invasive Bladder

Cancer and Its Treatments: A Social Media Review. Value in Health, 25 (12), p.S409.

  1. Gavi, F., Santoro, P.E., Amantea, C., Russo, P., Marino, F., Borrelli, I., Moscato, U. and Foschi, N., 2023. Impact of COVID-19 on Uro-Oncological Patients: A Comprehensive Review of the Literature. Microorganisms , 11(1), p.176.

  2. Gould, A., Muse, A., Thomson, A. and McGrane, J., 2023. Retrospective Real-world Evaluation of Enzalutamide in Metastatic Hormone Sensitive Prostate Cancer (mHSPC) during the COVID-19 Pandemic Compared to Docetaxel in mHSPC PreCOVID-19. Clinical Oncology , 35(2), p.e238.

  3. Hack, J., Crabb, S., Costin, M., Kelly, P., Makaroff, L. and Douglas, J., 2023. A Survey of the Real-world Patient-reported Experience of Follow-up Practices Following Radical Surgery or Radiotherapy for Muscle-invasive Bladder Cancer (MIBC). Clinical Oncology , 35(2), p.e238.

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  1. Hanafi, H., Macdonald, G., Randhawa, M., Glen, H., Jones, R. and Law, A., 2023. Incidence of Venous and Arterial Events in Patients Treated with Neoadjuvant Cisplatin-based Chemotherapy for Bladder Cancer and Predictability of Events using Khorana and Adapted HADVAS Score: a Large Retrospective Study across Three Centres in Scotland. Clinical Oncology, 35 (2), p.e238.

  2. Hof, J.P., Vermeulen, S.H., van der Heijden, A.G., Verhaegh, G.W., Dyrskjøt, L., Catto, J.W., Mengual, L., Bryan, R.T., Fleshner, N.E., Kiemeney, L.A. and Galesloot, T.E., An Association Study of Germline Variants in Bladder Cancer-Related Genes with the Prognosis of Non-Muscle Invasive Bladder Cancer. Bladder Cancer , (Preprint), pp.1-13.

  3. Hussain, S.A., Lester, J.F., Jackson, R., Gornall, M., Qureshi, M., Elliott, A., Crabb, S.J., Huddart, R.A., Vasudev, N., Birtle, A.J. and Worlding, J., 2022. Addition of nintedanib or placebo to neoadjuvant gemcitabine and cisplatin in locally advanced muscle-invasive bladder cancer (NEOBLADE): a double-blind, randomised, phase 2 trial. The Lancet Oncology , 23(5), pp.650-658.

  4. Iftikhar, J., Egan, H., Sanderson, B., Mohamed, I. and Birtle, A., 2023. Bring on BCON! The Unmet Need of Bladder Cancer Patients Unsuitable for Chemoradiation Treated with Radical Radiotherapy Alone. Clinical Oncology , 35(2), pp.e238-e239

  5. Jubber, I., Rogers, Z., Catto, J.W., Bottomley, S., Glaser, A., Downing, A. and Absolom, K., 2022. Sexual Activity, Function and Dysfunction After a Diagnosis of Bladder Cancer. The Journal of Sexual Medicine , 19(9), pp.1431-1441.

  6. Lee, L.Y., Tilby, M., Starkey, T., Ionescu, M.C., Burnett, A., Hattersley, R., Khan, S., Little, M., Liu, J.K., Platt, J.R. and Tripathy, A., 2023. Association of SARS-CoV-2 spike protein antibody vaccine response with infection severity in patients with cancer: A national COVID cancer cross-sectional evaluation. JAMA oncology , 9(2), pp.188-196.

  7. Swinton, M., Mariam, N.B.G., Tan, J.L., Murphy, K., Elumalai, T., Soni, M., Ferrera, A., Richardson, C., Walshaw, R., Mistry, H. and Ramani, V., 2022. Clinical Outcomes in cN+ M0 Bladder Cancer Patients: Can Bladder be Spared?. International Journal of Radiation Oncology, Biology, Physics, 114 (3), p.S76.

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Supporting research projects

Anyone affected by bladder cancer who wants to participate in research can contact us. You can see a list of all studies recruiting bladder cancer patients in the UK at fightbladdercancer.co.uk/research.

ALISON BIRTLE, TRUSTEE OF FIGHT BLADDER CANCER AND SECRETARY OF THE BRITISH URO-ONCOLOGY GROUP ‘There isn’t a urothelial cancer trial in the UK that Fight Bladder Cancer hasn’t been asked to provide a patient representative to advise on..’

Targeted therapy without immunotherapy

Fight Bladder Cancer has a patient representative on the ATLANTIS clinical trial. This clinical trial found that targeted therapy (cabozantinib) without immunotherapy didn’t show significant benefit compared to placebo as maintenance therapy in people with advanced bladder cancer who had responded to platinum-based chemotherapy. These results were presented at the American Society for Clinical Oncology GU meeting.

Quality of life after bladder cancer

The Quality of Life After Bladder Cancer (Q-ABC) study compares patient-related outcomes following radical surgery and radiotherapy. It has now completed its recruitment, and analysis is ongoing. The Quality of Life After Bladder Cancer (LABC) study is a cross-sectional survey of patientreported outcomes.

The double-blind study was designed to evaluate the efficacy and safety of adjuvant treatment with immunotherapy compared with placebo in people with muscle-invasive bladder cancer, who are at high risk for recurrence following cystectomy.

Global Patient Survey

Fight Bladder Cancer actively participated in a global survey of bladder cancer patients, organised by the World Bladder Cancer Patient Coalition (WBCPC). FBC supported several stages of the survey, including providing comments on the questionnaire for patients, recruiting patients in the UK to complete the survey (200+ total). Later, we provided an analysis of findings in the UK. The infographic and results are hoped to be released to the public in late 2023.

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Financial review

Where our money comes from

In 2022–2023, the charity raised £353,929 from diverse income sources, a decrease of 6% from the £376,362 raised in 2021– 2022. We couldn’t have done this without our amazing supporters, volunteers and campaigners. Our life-changing work would not be possible without such generous people. We appreciate every single gift we receive and work hard to ensure that no penny is wasted in our fight against bladder cancer.

We appreciate every single gift we receive and work hard to ensure that no penny is wasted in our fight against bladder cancer. Our money comes from lots of different places. We aren’t reliant on one funding source, which is good, especially in today’s financial environment, as we aim to increase both funding and develop different sources in the future, to allow us to extend the work we do for Bladder Cancer patients and their families.

Our money comes from lots of different places. We aren’t reliant on one funding source, which is good, especially in today’s financial environment, as we aim to increase both funding and develop different sources in the future, to allow us to extend the work we do for Bladder Cancer patients and their families.

Income

----- Start of picture text -----
Charitable trusts Government grants Donations and gift
and foundations 3% aid
11%
6%
Community
fundraising
20%
Sales and fees
6%
Pharmaceutical
companies
54%
----- End of picture text -----

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How we spend the money

The total expenditure was £392,890; in 2021–2022 it was £359,379. We understand that when anyone makes a charitable donation, they want to know exactly where that money is going, and we pledge to be clear and transparent when it comes to spending every contribution.

We assure you that every pound is important, and we are committed to judiciously considering where we spend our income and what we commit our money to. We make every penny count.

----- Start of picture text -----
Expenditure
Generating
funds
Support
16%
20%
Running costs
Awareness
18%
12%
Research
6%
Policy change
28%
----- End of picture text -----

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Where our money comes from – Partnerships

We have good working relationships with pharmaceutical and device companies involved in bladder cancer. Specifically, Astellas, AstraZeneca, Bristol-Myers Squibb, Intuitive Surgical, Janssen, Karl Stortz, Merck Group, Nucleix, Olympus, Pfizer, Roche and Sanofi provided funding during 2022–2023. In addition, we received payment for patient organisation input to activities conducted by Astellas, Janssen, Merck Group, MSD, Nestle, Pfizer, and Seagen.

Fundraising by friends of Fight Bladder Cancer

We are hugely grateful to our incredible supporters, who make a massive contribution to our finances and to whom we are eternally grateful for supporting our work for bladder cancer patients across the country. They all want to give something back to Fight Bladder Cancer in recognition of the help they have received during their treatment or that of a loved one.

Our fundraising team support and encourage, and can give advice, design posters and flyers, supply sponsorship forms

and anything else that helps supporters raise money. They also advise on Gift Aid, so every penny raised is worth more to fight bladder cancer. Amy Jacob now co-ordinates the team.

Thank you for sharing the love

Fight Bladder Cancer has diversified its fundraising and has expanded the ways we support fundraising. We organised our first mail-out individual giving campaign at Christmas and organised a Valentine’s Day community fundraiser. We are so grateful everyone who made a dedication on our Valentine’s Day campaign page and shared the love for Fight Bladder Cancer. From everyone at the charity, thank you from the bottom of our heart.

JANE, BLADDER CANCER PATIENT

‘When I was diagnosed with Bladder Cancer, I had never heard of it before. I was stunned and upset by the diagnosis, but I always believed that knowledge is power. I searched online and found Fight Bladder Cancer and joined the support group. I asked questions, and the whole group were highly supportive. I read how Andrew and Tracy founded it and that it was just a small charity. This is why Fight Bladder Cancer is different; being founded by people with the illness, it seemed more personal. ’ Raising awareness of this cancer is vitally important, and that is why I try to raise money when I can’.

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Running into funds

The Partington family all took on Fight Bladder Cancer’s ‘21’ fundraiser and completed a variety of activities relating to the number 21, to raise awareness for the 21,000 people diagnosed each year in the UK.

The Southampton Urology Centre organised an Ice Hockey fundraiser for Fight Bladder Cancer and other urological cancer charities. The Guildford Phoenix team especially wanted to raise money for us, as several of their family members have been directly affected by bladder cancer. They raised a huge £700, so thank you to everyone who was involved in the game and well done to the Guildford Phoenix team for winning their league and cup final!

Special thank you to Natalie and Stephen for fundraising for us by running 32 miles in March in support of bladder cancer patient Rob, Natalie’s father.

The team at The Porthcawl Medical Centre were busy fundraising and raising awareness of bladder cancer throughout Bladder Cancer Month. They decorated the surgery and their collection tins to encourage people to donate, staff paid to wear orange for the month of May, and they baked yummy cakes to sell.

The team at Liverpool University Hospital also got involved! Robyn Tennant and colleagues at Broadgreen Urology department set themselves a steps challenge to raise funds for Fight Bladder Cancer, walking 21,000 steps a day between them every day in May. Great work Robyn and team! They also organised an orange-themed picnic with a donated food hamper raffled off to the nurses – what a great idea!

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The amazing David Ritchie ran the Blackpool Marathon to raise money to support our work. David was diagnosed with bladder cancer in 2019, and this was his first marathon since diagnosis and surgery to remove his bladder. David said, “if you are going through the initial stages of diagnosis, be assured that you can get through this trauma and come out with a renewed lust for life, having been reminded of how precious it is.” A true inspiration!

Chris Betts is a bladder cancer patient and long-term supporter of Fight Bladder Cancer. This year he set the goal of selling 80 of our Fight Bladder Cancer wristbands. So far, he has managed to sell over 60! “My inspiration to start fundraising was knowing there is not much awareness and people do not know what to look for. My hopes are for people to be more aware and not be frightened to go to the doctors.” Thank you for helping to spread awareness of bladder cancer, Chris!

Shanina McLeod ran the Hackney half marathon to say thank you to Fight Bladder Cancer for supporting her Mum, Caron. Shanina says, “Please keep going back to your doctor if something isn’t right. Don’t wait. If you feel like you are making a fuss over nothing, you could in actual fact be doing exactly what you need to do to save your life.” So far, Shanina has raised over £1,400, which is brilliant news!

Mr Param Mariappan, Urological Surgeon and Director of Edinburgh Bladder Cancer Surgery set himself an ambitious target of 300,000 steps

to be walked during May, and ended the month having walked over 350,000! Param says, “Fight Bladder Cancer is a great charity that supports patients and carers affected by Bladder Cancer, as well as clinicians and researchers - this work requires funding.”

Long-term Fight Bladder Cancer supporter, Brenda Kelly, took things up a notch this year, and swam every day in cold water for the month of May to encourage everyone to spare a “few more pennies for Fight Bladder Cancer who do amazing work”.

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Bladder cancer patient Colin O’Sullivan organised a charity concert with his band in aid of Fight Bladder Cancer and Colostomy UK, to raise awareness and break the stigma of having two stomas. The band played music from the movies, and even had a dinosaur make an appearance during the Jurassic Park theme! Thank you so much Colin for raising a huge £2,217 for the two charities, we’re so grateful!

We’ve also had Naomi and the rest of the Belfast HSBC Team take on the huge challenge of completing 1000 miles in July. The team racked up the miles by either running, walking or cycling for Fight Bladder Cancer and they chose to fundraise for us as the charity is close to the heart of an individual within the team.

After Lorraine’s father was diagnosed with bladder cancer last year, she decided to fundraise for us by cycling over 100 miles from Wolverhampton to Aberdovey. She’s raised an amazing £585, which is a huge achievement, thanks, Lorraine!

Special thank you to Hazel McGhie and her friends and family for completing their annual walk of Cumbrae in memory of Hazel’s lovely dad, Clive. We’re so grateful to you all, and we hope you enjoyed all the wonderful views along the walk.

Thank you to Tracey for running the Great North Run for Fight Bladder Cancer. Tracey and her dad usually run the GNR together, but after a year-long battle with bladder cancer, he sadly passed away this February. Tracey then decided to run this year’s race alone in his memory. Thank you for your bravery, and congratulations on such an amazing achievement.

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Huge thank you to Helen Tabor who ran another marathon for FBC, the Chicago marathon this time, in memory of her dad who was a patient. She’s raised a huge amount in a short time and we’re extremely grateful for her support.

Big thank you to The Curritas, a team of four friends who decided to take part in Battle Cancer 2022 to raise awareness for bladder cancer. They smashed both the challenges on the day and their £300 fundraising target, raising an incredible £1,221!

On a Tuesday evening in October, the Dinton Hermit pub ran a very successful fundraising evening for Fight Bladder Cancer, raising a huge £201! It was a wonderful evening raising awareness of bladder cancer, with some of the Fight Bladder Cancer staff even coming to play along. A special thank you to our volunteers Sue and Mary for helping to put together all the prizes for the evening, and Tracy (Fight Bladder Cancer founder) for giving a wonderful speech. Thank you everyone who came along!

Massive congratulations to Glen, Derek, Craig and Andrew for completing the West Highland Way walk and raising almost £2,000, wow! They completed the 98 mile walk (which included 3’500 metres of elevation) in four days, which is an incredible achievement. Thank you so much!

Huge thank you to bladder cancer patient Paul Davies for holding a wonderful plant sale fundraiser at the Marldon Apple Pie Fair in Devon and raising £250 for Fight Bladder Cancer. What a lovely way to raise awareness!

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Facebook fundraisers

Over the last year, we have had people celebrate their birthday by kindly asking for donations to Fight Bladder Cancer. Facebook Giving Tools allow a person to create a fundraising page for a special occasion or show their support through a gift via Facebook. 100% of the money donated comes straight to the Charity as a twicemonthly payment and we’re so thankful to every person who creates a fundraiser for us.

In memoriam

We are so touched and grateful to those who choose to donate and fundraise in memory of a loved one – whether this is asking for a donation instead of flowers at a funeral or honouring special dates (such as an anniversary) with a gift to Fight Bladder Cancer – it all means so much.

When much-loved member of our Wee Family Michelle Ladbrook passed away, her family and friends knew they wanted to do something amazing in her memory. A group of 13 of Michelle’s loved ones decided to take part in the Brighton Marathon weekend events, raising a huge £18,000 for Fight Bladder Cancer. What an incredible way to honour her memory and thank you to all of #TeamChoo for your support.

Income from Charitable Trusts and Foundations

As part of our commitment to raising income from diverse sources, we continue to apply to charitable trusts and foundations for a combination of unrestricted grants towards our core services and restricted grants specifically for particular projects and outcomes. The total income raised through trust and grant fundraising during the financial year was £19,680, with most funds directed towards patient information and support. The current climate has proven to be challenging with the level of unrestricted grants we saw during the start of the pandemic being significantly reduced and competition for grants increasing owing to the difficult economic climate. In the coming year, we are working to draw in grant funding for local support around the UK and new initiatives in Scotland.

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Reserves Policy

The Trustees have forecast the level of free reserves (those funds not tied up in tangible fixed assets or categorised as restricted funds) that the Charity will require to sustain its operations in a period when it is anticipated that there may

be some reduced income performance. Such reduction in income may lead to the curtailment or cancellation (temporarily or otherwise, depending on the specific nature of the income reduction) of projects detailed in the strategic plan (whether in progress or not yet commenced). The overriding concern of the Trustees at such a time will be the maintenance of the services that provide the most benefit to people affected by bladder cancer.

The Trustees consider that the most appropriate level of free reserves to be held by the Charity should be sufficient to cover six months of budgeted forecast expenditure.

Whilst the current level of income generated may prove sufficient to meet identified requirements, it is the Trustees’ view that there should be sufficient free reserves available to provide financial flexibility, having regard to known and anticipated future expenditure and to provide contingency funding to meet any shortfall in income generation and any unplanned emergency expenditure which may be required.

Therefore, the Trustees’ policy is to closely monitor the Charity’s financial and operational activities and maintain free reserves within the parameters identified above.

The reserves policy states that the Charity should have unrestricted funds equivalent to six months of budgeted forecast expenditure – £196,445. The unrestricted funds for general use as of 31 March 2023

were £86,100– equivalent to 2.6 months of budgeted forecast expenditure. As the current level of reserves was below the level in the reserve policy, the Trustees curtailed some future projects, reduced the number of paid staff members, raised additional funds, and diversified the Charity’s funding base.

Exemptions from disclosure

The Charity did not undertake any grantmaking activity in the year ended 31 March 2023. The Charity has disclosed all relevant key personnel details.

Funds held as custodian trustees on behalf of others

The Charity did not act as a custodian Trustee for the assets of any other charity in the year ended 31 March 2023.

Income and Expenditure

The results for the year are set out in the financial statements below. The financial statements show a total income for the year ended 31 March 2023 of £353,929 (year ended 31 March 2022: £376,362). The total expenditure was £392,890 (year ended 31 March 2022: £359,379). Combined with a loss from Fight Bladder Cancer Trading Ltd of £98 (year ended 31 March 2022: £500), the Charity recorded a deficit of £38,986 (year ended 31 March 2022: surplus of £16,483). The Trustees consider these results to be a reflection of the challenging economic environment and the evolving landscape of charitable funding. While the deficit recorded this year is a concern, it is seen in the context of a broader strategic plan aimed at longterm sustainability and impact.

Net assets

For the year ended 31 March 2023, the Charity had tangible assets of £4,381 (year ended 31 March 2022: £5,576), stocks of £2,801 (year ended 31 March 2022: £3,174), debtors of £57,722 (year ended 31 March

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2022: £13,661), cash of £113,492 (year ended 31 March 2022: £213,462). The Charity had amounts falling due within one year of £18,157 (year ended 31 March 2022: £36,647), leaving it with net assets of £160,239 (year ended 31 March 2022: £199,226).

For the year ended 31 March 2023, the Charity had restricted funds of £74,138 (year ended 31 March 2022: £54,260), and funds remaining for general use were £86,100 (year ended 31 March 2022: £144,966). On 31 March 2023, the bank balance was £113,480.

The difference between the bank balance and the cash on hand is due to a small petty cash balance maintained by the charity for minor and immediate expenses.

Going concern

When approving the financial statements, the Trustees acknowledge that the financial statements for the year ended 31 March 2023 reflect a deficit and are inconsistent with the Trustees’ Reserves Policy. The Trustees have implemented measures to improve the financial stability of the charity. The impact of these measures is evident in the forecasts for the current year, which indicate a return to surplus. This positive trend supports the Trustees’ confidence in the charity’s ability to meet its financial commitments and continue its operations in the foreseeable future. Accordingly, the Trustees believe that the Going Concern basis is the appropriate basis for preparing the accounts.

Within the financial year ending 31 March 2023, the charity experienced a reduction in net assets and a decrease in bank balances. This shift is in tandem with a deficit of £38,986, a deviation from the prior year’s surplus. These changes reflect the ongoing challenges in the economic climate and the evolving nature of charitable funding, influencing our current financial standing and necessitating strategic adjustments for future stability and impact.

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Future Plans

Awareness –

Bladder Cancer Awareness Month

Aim: To enhance awareness of bladder cancer.

Objectives:

During Bladder Cancer Awareness Month, we hope to work in partnership with the Global Bladder Cancer Patient Coalition and join our friends worldwide to raise bladder cancer awareness. We hope to organise ‘wee walks’; we will wear orange clothes, take orange photographs, design

orange-themed activities and finish the month by blowing Bubbles for Bladder Cancer on 31 May.

Fight Bladder Cancer will lead the UK activities associated with Bladder Cancer Awareness Month in the month of May. It will achieve a dynamic social media campaign, targeted traditional media coverage, and a UK-wide celebration of Bubbles for Bladder Cancer on 31 May.

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Awareness at events

Objectives:

Building on the success of our stands at events such as the Royal College of GPs Conference, the British Association of Urological Nurses conference, the GMB Workers’ Union conference, the Fire Brigade Union conference, the Unison Workers’ Union AGM, the Devon Marldon Apple Pie Fair, the RHS Wisley Craft and Design Fair, the Chinnor Vintage Fair, the Hever Castle Craft and Design Fair, the Art Unequalled Fair, and the Belladrum Tartan Heart Festival, the charity plans to expand its presence at conferences and community events.

We aim to secure more prominent and centrally located event stands, increasing visibility and accessibility. Our overarching goal is to elevate our presence at these events. By doing so, we aim to create a greater impact in spreading awareness about bladder cancer.

Awareness – radio and newspaper campaigns

Objectives:

Fight Bladder Cancer plans to adapt its media strategy to be more communityoriented. Our efforts will include engaging with local media channels, particularly accessible and affordable. We anticipate making select appearances on these platforms to discuss bladder cancer. Our approach to newspapers will involve focusing on local and regional publications.

By concentrating on these local and regional media avenues, we aim to ensure our message about bladder cancer continues to reach the intended audience efficiently. This method aligns with our ongoing commitment to conduct our awareness activities sustainably and cost-effectively.

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Awareness videos

Objectives:

We are committed to developing an extensive video series to raise bladder cancer awareness. This series will present real experiences and insights from a diverse group of individuals affected by bladder cancer, fostering a comprehensive understanding of the condition. We will focus on emphasising the importance of early detection of bladder cancer. We will partner with a professional production company to ensure engaging and highquality content.

The series’ effectiveness in improving knowledge and changing attitudes towards bladder cancer will be evaluated through viewer surveys. Additionally, we aim to reach a broad audience by utilising our website, social media, podcasts, and written stories for distribution. Our commitment to diversity and inclusion will be reflected in the representation from various cultural, ethnic, and socioeconomic backgrounds within the bladder cancer community. The engagement plan will encompass developing a patient interview guide, recruiting a varied group of participants, and executing a detailed promotional campaign.

Awareness in Scotland

Objectives:

Looking ahead, we aim to increase bladder cancer awareness throughout Scotland. Our commitment is to enhance the understanding and treatment of bladder cancer in this region, tailoring our approach to suit the distinct cultural landscape of Scottish communities. This will involve adapting our educational and support materials for Scottish audiences and actively participating in local initiatives.

Our strategy will be supported by a network of Trustees, healthcare professionals and volunteers across major Scottish cities and regions, including Edinburgh, Glasgow, and Inverness. By collaborating with these local experts and leveraging their insights, we can ensure that our outreach is effective and culturally sensitive. This targeted approach will help us connect more deeply with communities in Scotland.

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Awareness in Wales

Objectives:

Our vision for the future is to amplify bladder cancer awareness and support services across Wales significantly. We are dedicated to improving the understanding and management of bladder cancer in this region, focusing on adapting our methods to meet Welsh communities’ unique cultural and linguistic needs. This will involve localising our educational and support materials into Welsh and actively engaging with the community through various initiatives.

We plan to attend the Welsh Urological Society annual meeting with an informative stall, further supported by our network of healthcare professionals and volunteers in major Welsh cities, including Cardiff, Swansea, Newport, Wrexham, and Bangor.

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Support – Patient Information Booklets

Objectives:

Over the following year we will launch one additional booklet on innovative treatments for bladder cancers. The impact of our booklets will be measured by recording the number of patient information booklets distributed to patients and carers, along with the preference for digital or print copies. In line with GDPR, the gender, diagnosis and geographical location of the cancer patients will be recorded. A survey will be distributed to assess their needs, asking for the recipients’ opinions on the value of the information and if they would recommend these resources to other cancer patients.

Support – website

Objectives:

The platform that fightbladdercancer.co.uk is built upon – Drupal 7 – will no longer be supported as of January 2025, so we now need to rebuild the architecture of our website from the ground up in WordPress. The new rebuild will allow us to include maps and a search bar, help people with disabilities use our website, expand our online shop, deter spam bots, improve user navigation, make the website easier to use and edit on mobile phones, integrate our social media, and produce backups quickly. It will also provide information about innovative treatment options, clinical trials, support groups and patient information.

Support – Support groups, helpline and online forum

Objectives:

Our plans for the coming years include annually moderating 6,000 forum conversations, answering 1,000 support calls and emails, welcoming 500 new members to our private forum, pairing up 50 Bladder Buddies, hosting regular virtual support groups, and continuing to help inperson support groups to restart.

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Support – webinars for nurses and patients

Objectives:

We will partner with the British Association of Urological Nurses to create a webinar on robotic surgery. This resource will be available as a live webinar and later as an ondemand video on our website and YouTube channel.

Policy change – Exemplar policy work

Objectives:

Fight Bladder Cancer will create a policy strategy that allows Fight Bladder Cancer to deliver impactful policy engagement activities with the finite resources available to the charity, building upon the Exemplar Report (fightbladdercancer.co.uk/exemplar). Fight Bladder Cancer will prioritise areas where change will significantly impact patients and are achievable for our small team to deliver. A focus will be placed on:

Policy change – Supporting best practice in Scotland

Aim: To advocate for high-quality bladder cancer treatment in Scotland Objectives:

We will continue our work to support Scottish urologists in using Quality Performance Indicators to ensure that bladder cancer patients are receiving timely and high-quality treatment and share these best practices with health professionals in England, Wales and Northern Ireland.

ANDREW DEARDEN,

CHAIR OF TRUSTEES, 28 DECEMBER 2023

This Trustees’ Annual Report was authorised by the Board of Trustees on 22 December 2023 and was signed on their behalf by Andrew Dearden.

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FIGHT BLADDER CANCER

INDEPENDENT EXAMINER'S REPORT TO THE BOARD OF TRUSTEES

For the year ended 31 March 2023

I report on the accounts of the charity for the year ended 31 March 2023.

Respective responsibilities of the Trustees and examiner

As the trustees of the charity, you are responsible for the preparation of the accounts in accordance with the requirements of the Charities and Trustee Investment (Scotland) Act 2005 (‘the 2005 Act’), the Charities Accounts (Scotland) Regulations 2006 (as amended) and the Charities Act 2011 (‘the 2011 Act’). You are satisfied that the accounts of the Charity are not required by charity law to be audited and have chosen instead to have an independent examination.

Having satisfied myself that the accounts of the Charity are not required to be audited and are eligible for independent examination, I report in respect of my examination of the Charity’s accounts carried out under section 44 (1) ( c) of the 2005 Act and section 145 of the Charities Act 2011 (‘the 2011 Act’). In carrying out my examination I have followed the requirements of Regulation 11 of the Charities Accounts (Scotland) Regulations 2006 (as amended) and the Directions given by the Charity Commission under section 145(5)(b) of the 2011 Act.

Basis of independent examiner's statement

My examination was carried out in accordance with the general Directions given by the Charity Commission. An examination includes a review of the accounting records kept by the Charity, and a comparison of the accounts presented with those records. It also includes consideration of any unusual items or disclosures in the accounts, and seeking explanations from you as Trustee concerning any such matters.

The procedures undertaken do not provide all the evidence that would be required in an audit,and consequently no opinion is given as to whether the accounts present a “true and fair view”, and this report is limited to those matters set out in the statement below.

Independent examiner’s statement

Since the Company is required by company law to prepare its accounts on an accruals basis and is registered as a charity in Scotland your examiner must be a member of a body listed in Regulation 11(2) of the Charities Accounts (Scotland) Regulations 2006 (as amended). I can confirm that I am qualified to undertake the examination because I am a registered member of the Institute of Chartered Accountants in England and Wales, which is one of the listed bodies.

I have completed my examination. I confirm that no matters have come to my attention in connection with the examination giving me cause to believe that in any material respect:

/Continued...

54

FIGHT BLADDER CANCER

INDEPENDENT EXAMINER'S REPORT TO THE BOARD OF TRUSTEES

For the year ended 31 March 2023

/Continued…

I understand that 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 SORP 2015 FRS102, rather than the Accounting and Reporting by Charities: Statement of Recommended Practice effective from 1 April 2005 (SORP 2005), which is referred to in the extant regulations, but has since been withdrawn.

I have no concerns and have come across no other matters in connection with the examination to which attention should be drawn in this report in order to enable a proper understanding of the accounts to be reached.

Charles Ssempijja, FCA

NfP Accountants Ltd Chartered Accountants 3rd Floor, 86-90 Paul Street London EC2A 4NE Date: ………………………….

55

FIGHT BLADDER CANCER

STATEMENT OF FINANCIAL ACTIVITIES For the year ended 31 March 2023

Unrestricted
Funds
Notes
2023
£
INCOME FROM
Donations and legacies
2
176,733
Other trading activities
3
17,574
Other income
16,830
Investment income
21
TOTAL INCOME
211,158
EXPENDITURE ON:
Awareness
55,481
Support
81,270
Policy Change
1,586
Research
29,633
167,970
Raising funds
4
62,498
TOTAL EXPENDITURE
230,468
(19,310)
Gains/(losses) on
investments: FBC
Trading Ltd
(27)
(19,337)
Transfer between funds
14
(39,529)
(58,866)
RECONCILIATION OF FUNDS
144,966
86,100
£
TOTAL FUNDS
CARRIED FORWARD
Net
(expenditure)/income
before transfers
Net income / (expenditure)
for the year
TOTAL
FUNDS
AT
BROUGHT FORWARD
NET MOVEMENT IN
FUNDS		 Unrestricted
Funds
Notes
2023
£
INCOME FROM
Donations and legacies
2
176,733
Other trading activities
3
17,574
Other income
16,830
Investment income
21
TOTAL INCOME
211,158
EXPENDITURE ON:
Awareness
55,481
Support
81,270
Policy Change
1,586
Research
29,633
167,970
Raising funds
4
62,498
TOTAL EXPENDITURE
230,468
(19,310)
Gains/(losses) on
investments: FBC
Trading Ltd
(27)
(19,337)
Transfer between funds
14
(39,529)
(58,866)
RECONCILIATION OF FUNDS
144,966
86,100
£
TOTAL FUNDS
CARRIED FORWARD
Net
(expenditure)/income
before transfers
Net income / (expenditure)
for the year
TOTAL
FUNDS
AT
BROUGHT FORWARD
NET MOVEMENT IN
FUNDS		 Restricted
Funds
2023
£
142,496
275
-
-		 Total
Funds
2023
£
319,229
17,849
16,830
21		 Unrestricted
Funds
2022
£
264,635
15,879
11,046
14		 Restricted
Funds
2022
£
84,538
250
-
-		 Total
Funds
2022
£
349,173
16,129
11,046
14
211,158 142,771 353,929 291,574 84,788 376,362
55,481
81,270
1,586
29,633		 2,643
19,358
140,421
-		 58,124
100,628
142,007
29,633		 29,721
44,856
151,287
(21,809)		 11,886
54,837
2,324
37,227		 41,607
99,693
153,611
15,418
162,422
-		 330,392
62,498		 204,055
49,050		 106,274
-		 310,329
49,050
230,468 162,422 392,890 253,105 106,274 359,379
(19,310)
(27)		 (19,651)
-		 (38,961)
(27)		 38,469
(500)		 (21,486)
-		 16,983
(500)
(19,651)
39,529		 (38,988)
-		 37,969
(50,960)		 (21,486)
50,960		 16,483
-
19,878
54,260		 (38,988)
199,226		 (12,991)
144,106		 29,474
38,637		 16,483
182,743
86,100
**£ **		 74,138
**£ **		 160,238
**£ **		 131,115
_£ _		 68,111
_£ _		 199,226
_£ _

The annexed notes form part of these financial statements

56

FIGHT BLADDER CANCER

(Registered charity number 1157763)

BALANCE SHEET As at 31 March 2023

Notes
FIXED ASSETS
Tangible assets
11
CURRENT ASSETS
Stocks
Debtors
12
Cash at bank and in hand
CREDITORS: amounts falling due
within one year
13
NET CURRENT ASSETS
NET ASSETS
FUNDS
Restricted funds
14
General fund
14		 2023
£
£
4,381
2,801
57,722
113,491
174,014
(18,157)
155,857
160,238
£
74,138
86,100
160,238
**£ **		 £
3,174
13,661
213,462		 2022
£
5,576
193,650
230,297
(36,647)
199,226
_£ _
54,260
144,966
199,226
_£ _

The financial statements have been prepared in accordance with 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).

The financial statements were approved, and authorised for issue, by the Trustees on 28 December 2024 and signed on their behalf by:-

Andrew Dearden, Chair

The annexed notes form part of these financial statements

57

FIGHT BLADDER CANCER

STATEMENT OF CASH FLOWS For the year ended 31 March 2023

£
£
Cash flows from operating activities
Net income for the period
(38,988)
Add back depreciation
2,333
Change in stock
373
Net cash provided by / (used in) operating activities
(Increase)/decrease in debtors
(44,061)
Increase/(decrease) in creditors
(18,490)
(62,551)
Cash flows from investing activities
Purchase of fixed assets
(1,138)
Sale of fixed assets
-
Cash flows from financing activities
-
Change in cash and cash equivalents in the year
(99,971)
Cash and cash equivalents at the beginning of the year
213,462
Cash and cash equivalents at the year end
113,491
2023		 2022 2022
£
55,625
17,267		 £
16,483
2,636
-
72,892
(6,447)
498
-
86,062
127,400
213,462

58

FIGHT BLADDER CANCER

NOTES TO THE FINANCIAL STATEMENTS For the year ended 31 March 2023

1. ACCOUNTING POLICIES

Basis of preparation of financial statements

The financial statements have been prepared under the historical cost convention with items recognised at cost or transaction value unless otherwise stated in the relevant note(s) to these accounts. The financial statements have been prepared in accordance with the Statement of Recommended Practice: Accounting and Reporting by Charities preparing their accounts in accordance with the Financial Reporting Standard applicable in the UK and Republic of Ireland (Charities SORP FRS 102), the Financial Reporting Standard applicable in the United Kingdom and Republic of Ireland (FRS 102) and the Charities Act 2011.

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 SORP 2015 rather than the Accounting and Reporting by Charities: Statement of Recommended Practice effective from 1 April 2005 (SORP 2005) which has since been withdrawn.

Public benefit entity

The charity meets the definition of a public benefit entity under FRS 102.

Going concern

The trustees consider that there are no material uncertainties about the charity's ability to continue as a going concern.

Income

Income is recognised when the charity has entitlement to the funds: this is when any performance conditions attached to the income have been met, it is probable that the income will be received, and that the amount can be measured reliably.

Income is only deferred when: the donor specifies that the grant or donation must only be used in future accounting periods; or for performance related grants, where these are received in advance of the performances or specific event to which they relate.

Interest receivable

Interest on funds held on deposit is included when receivable and the amount can be measured reliably by the charity; this is normally upon notification of the interest paid or payable by the bank.

Fund accounting

Restricted funds are to be used for specific purposes as laid down by the donor. Expenditure which meets these criteria is charged to the fund.

Unrestricted funds are donations and other incoming resources received or generated for the charitable purposes.

Designated funds are unrestricted funds earmarked by the trustees for particular purposes.

5 89

FIGHT BLADDER CANCER

NOTES TO THE FINANCIAL STATEMENTS For the year ended 31 March 2023

Expenditure and irrecoverable VAT

Expenditure is recognised once there is a legal or constructive obligation to make a payment to a third party, it is probable that settlement will be required and the amount of the obligation can be measured reliably. Expenditure is considered all to relate to Charitable activities and includes the costs of delivering services undertaken to further the purposes of the charity and their associated support costs.

Charitable activities costs

Direct costs of charitable activities are those costs incurred by the charity and are directly attributable to the delivery of its activities. The total costs of each charitable activity also includes allocated staff and support costs.

Allocation of staff costs

Staff costs are allocated to charitable activities on the basis of staff effort, for example by reference to staff time, for each activity.

Allocation of support and governance costs

Support and governance costs are allocated between charitable in proportion to staff costs.

Debtors

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

Cash at bank and in hand

Cash at bank and cash 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

Creditors and provisions

Creditors and provisions are recognised where the charity has a present obligation resulting from a past event that will probably result in the transfer of funds to a third party and the amount due to settle the obligation can be measured or estimated reliably. Creditors and provisions are normally recognised at their settlement amount after allowing for any trade discounts due.

The charity 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.

Judgements and key sources of estimation uncertainty

No judgements have been made in the process of applying the above accounting policies and there are no key sources of estimation uncertainty.

Foreign currencies

The reporting currency is GBP. The Foundation operates a no loss no gains policy with regard to currency fluctuations between GBP and Kenyan Shillings. Currency fluctuation is contained within

60

FIGHT BLADDER CANCER

NOTES TO THE FINANCIAL STATEMENTS For the year ended 31 March 2023

Intangible assets

Intangible assets are stated in the Balance Sheet at cost less accumulated amortisation and impairment. They are amortised on a straight line basis over their estimated useful lives as follows:

Tangible fixed assets

Individual fixed assets cost £300 or more are initially recorded at cost, less any subsequent accumulated depreciation and subsequent accumulated impairment losses, calculated as follows:

2. DONATIONS AND LEGACIES

Unrestricted
Funds
2023
£
Donations received
36,174
Donations in Memorium
17,487
Grants - Pharmaceutical donors
42,434
Grants Received - Other
16,313
Bequests and legacies
-
Fundraising activities
63,901
Other fundraising income
424
176,733
£
2022
Donations received
50,145
Donations in Memorium
8,054
Grants - Pharmaceutical donors
29,280
Grants Received - Other
53,168
Bequests and legacies
500
Fundraising activities
72,455
Other fundraising income
368
213,970
_£ _		 Unrestricted
Funds
2023
£
Donations received
36,174
Donations in Memorium
17,487
Grants - Pharmaceutical donors
42,434
Grants Received - Other
16,313
Bequests and legacies
-
Fundraising activities
63,901
Other fundraising income
424
176,733
£
2022
Donations received
50,145
Donations in Memorium
8,054
Grants - Pharmaceutical donors
29,280
Grants Received - Other
53,168
Bequests and legacies
500
Fundraising activities
72,455
Other fundraising income
368
213,970
_£ _		 Restricted
Funds
2023
£
-
-
128,789
13,707
-
-
-		 Total
Funds
2023
£
36,174
17,487
171,223
30,020
-
63,901
424		 Total
Funds
2022
£
50,155
8,054
158,430
59,211
500
72,455
368
176,733
**£ **		 142,496
**£ **		 319,229
**£ **		 349,173
_£ _
50,145
8,054
29,280
53,168
500
72,455
368		 10
-
129,150
6,043
-
-
-		 50,155
8,054
158,430
59,211
500
72,455
368
213,970
_£ _		 135,203
_£ _		 349,173
_£ _

Grants received - other: this includes government grants through the Kickstart scheme amounting to £10,340 (2022 - £4,082).

61

FIGHT BLADDER CANCER

NOTES TO THE FINANCIAL STATEMENTS For the year ended 31 March 2023

3.
INCOME FROM OTHER TRADING ACTIVITIES
Unrestricted
Funds
2023
£
Sales
1,750
Magazine Sales
-
Fees received
15,535
Advertising Sales
-
Sundry income
289
17,574
£
4.
ANALYSIS OF EXPENDITURE
Current year
Staff /
consultant
costs
Direct
costs
£
£
Charitable activities
- Awareness
27,642
17,240
44,053
35,472
63,941
47,436
12,167
11,638
147,803
111,786
Fundraising costs
20,804
41,694
Governance & support costs
29,557
41,246
198,164
£
194,726
£
Staff /
consultant
costs
Direct costs
£
£
Charitable activities
- Awareness
17,644
14,446
39,744
38,513
69,859
46,073
9,258
1,167
136,505
100,199
Fundraising costs
25,482
23,568
Governance & support costs
36,253
37,372
198,240
£
161,139
£
- Support
- Policy
- Support
- Policy Change
- Research
- Research		 3.
INCOME FROM OTHER TRADING ACTIVITIES
Unrestricted
Funds
2023
£
Sales
1,750
Magazine Sales
-
Fees received
15,535
Advertising Sales
-
Sundry income
289
17,574
£
4.
ANALYSIS OF EXPENDITURE
Current year
Staff /
consultant
costs
Direct
costs
£
£
Charitable activities
- Awareness
27,642
17,240
44,053
35,472
63,941
47,436
12,167
11,638
147,803
111,786
Fundraising costs
20,804
41,694
Governance & support costs
29,557
41,246
198,164
£
194,726
£
Staff /
consultant
costs
Direct costs
£
£
Charitable activities
- Awareness
17,644
14,446
39,744
38,513
69,859
46,073
9,258
1,167
136,505
100,199
Fundraising costs
25,482
23,568
Governance & support costs
36,253
37,372
198,240
£
161,139
£
- Support
- Policy
- Support
- Policy Change
- Research
- Research		 3.
INCOME FROM OTHER TRADING ACTIVITIES
Unrestricted
Funds
2023
£
Sales
1,750
Magazine Sales
-
Fees received
15,535
Advertising Sales
-
Sundry income
289
17,574
£
4.
ANALYSIS OF EXPENDITURE
Current year
Staff /
consultant
costs
Direct
costs
£
£
Charitable activities
- Awareness
27,642
17,240
44,053
35,472
63,941
47,436
12,167
11,638
147,803
111,786
Fundraising costs
20,804
41,694
Governance & support costs
29,557
41,246
198,164
£
194,726
£
Staff /
consultant
costs
Direct costs
£
£
Charitable activities
- Awareness
17,644
14,446
39,744
38,513
69,859
46,073
9,258
1,167
136,505
100,199
Fundraising costs
25,482
23,568
Governance & support costs
36,253
37,372
198,240
£
161,139
£
- Support
- Policy
- Support
- Policy Change
- Research
- Research		 Restricted
Funds
2023
£
-
-
275
-
-		 Total
Funds
2023
£
1,750
-
15,810
-
289		 Total
Funds
2022
£
1,509
-
14,001
-
619
17,574
**£ **		 275
**£ **		 17,849
**£ **		 16,129
_£ _
Direct
costs
£
17,240
35,472
47,436
11,638		 Support
costs
£
13,242
21,103
30,630
5,828		 Total 2023
£
58,124
100,628
142,007
29,633		 Total 2022
£
41,607
99,693
153,611
15,418
147,803
20,804
29,557		 111,786
41,694
41,246		 70,803
-
(70,803)		 330,392
62,498
-		 310,329
49,050
-
198,164
**£ **		 194,726
**£ **		 Nil
£		 392,890
**£ **		 359,379
_£ _
Staff /
consultant
costs
£
17,644
39,744
69,859
9,258		 Direct costs
£
14,446
38,513
46,073
1,167		 Support
costs
£
9,517
21,436
37,679
4,993		 Total 2022
£
41,607
99,693
153,611
15,418
136,505
25,482
36,253		 100,199
23,568
37,372		 73,625
-
(73,625)		 310,329
49,050
-
198,240
_£ _		 161,139
_£ _		 Nil
£		 359,379
_£ _

62

FIGHT BLADDER CANCER

NOTES TO THE FINANCIAL STATEMENTS For the year ended 31 March 2023

Of total expenditure of £392,890, £162,422 (2022 - £106,274) was out of restricted income funds, and £230,468 (2022 - £253,105) was unrestricted.

5. TRUSTEES' REMUNERATION AND EXPENSES

No trustees, nor any persons connected with them, have received any remuneration from the charity during the year (2022 - none).

No trustees have received any reimbursed expenses or any other benefits from the charity during the year (2022 - none).

6. OTHER RELATED PARTY TRANSACTIONS

There were no other disclosable related party transactions (2022 - the same).

7. STAFF COSTS AND NUMBERS

Unrestricted
Funds
2023
£
Salary costs
Wages and salaries
90,739
Social security costs
6,177
Employer's pension
3,890
100,806
**£ **		 Unrestricted
Funds
2023
£
Salary costs
Wages and salaries
90,739
Social security costs
6,177
Employer's pension
3,890
100,806
**£ **		 Restricted
Funds
2023
£
89,387
6,455
1,516		 Total
Funds
2023
£
180,126
12,632
5,406		 Total
Funds
2022
£
161,678
10,991
2,027
100,806
**£ **		 97,358
**£ **		 198,164
**£ **		 174,696
_£ _

The monthly average number of persons (including senior management team) employed by the charity during the year was 6 (2022 - 6).

One employee received emoluments of more than £60,000 (£60,000 - £70,000), including benefits, during the year (2022 - the same).

Total remuneration for key management personnel amounted to £99,117 during the year (2022 - £89,956).

8. PENSIONS

The charity operates a defined contribution pension scheme. The pension cost charge for the year represents contributions payable by the charity to the scheme and amounted to £5,406 (2022 - £2,027).

63

FIGHT BLADDER CANCER

NOTES TO THE FINANCIAL STATEMENTS For the year ended 31 March 2023

9. SUPPORT AND GOVERNANCE COSTS

SUPPORT AND GOVERNANCE COSTS
Governance costs:
Independent Examiner's fee
Other governance costs
Support staff costs: wages and salaries
Other staff costs
Premises costs
IT and equipment
Postage, printing, and communications
Graphic Design
Professional fees
Depreciation and amortisation costs
Sundry		 2023
£
1,800
884		 2022
£
2,025
-
2,684
29,557
8,584
10,229
7,168
734
1,693
6,678
2,333
1,144		 2,025
36,253
6,516
6,237
7,127
1,610
2,860
5,460
2,636
2,901
70,804
**£ **		 73,625
_£ _

Support costs all relate to the charitable activities on the basis of staff time.

10. INTANGIBLE FIXED ASSETS

Website
Cost
At 1 April 2022 and at 31 March 2023
Amortisation
At 1 April 2022 and at 31 March 2023
Net book value
At 31 March 2023
At 31 March 2022		 £
21,631
21,631
Nil
£
Nil
£

64

FIGHT BLADDER CANCER

NOTES TO THE FINANCIAL STATEMENTS For the year ended 31 March 2023

11. TANGIBLE FIXED ASSETS

Cost
At 1 April 2022
Additions
At 31 March 2023
Depreciation
At 1 April 2022
Charge for the year
At 31 March 2023
Net book value
At 31 March 2022
At 31 March 2023
12. DEBTORS
Due within one year
Trade debtors
Rent deposit
Prepayments
VAT debtor		 2023
£
45,179
-
12,540
3		 Office
equipment
£
15,739
1,138
16,877
10,163
2,333
12,496
5,576
£
4,381
£
2022
£
600
8,125
4,933
3
57,722
**£ **		 13,661
_£ _

65

FIGHT BLADDER CANCER

NOTES TO THE FINANCIAL STATEMENTS For the year ended 31 March 2023

13. CREDITORS: AMOUNTS FALLING DUE WITHIN ONE YEAR

CREDITORS: AMOUNTS FALLING DUE WITHIN ONE YEAR
Trade creditors
Provision for FBC Trading Ltd
Deferred grant income
Social security and other taxes
Other creditors
Accrued expenses
Deferred income
Balance at 1 April 2022
Amount released to incoming resources
Amount deferred in the year
Balance at 31 March 2023		 2023
£
1,733
-
6,750
4,821
-
4,853		 2022
£
16,469
500
13,500
3,483
652
2,043
18,157
**£ **		 36,647
_£ _
13,500
(13,500)
6,750		 -
-
13,500
6,750
**£ **		 13,500
_£ _

14. STATEMENT OF FUNDS

STATEMENT OF FUNDS
RESTRICTED FUNDS
Patient Booklets
SUMMARY OF FUNDS
General Funds
Restricted Funds
Website
Support
Exemplar
Patient Advocates
Research
Contact Cards		 Brought
Forward
£
1,650
18,875
33,735
-
-
-
-		 Incoming
Resources
£
88,339
-
37,983
821
15,268
360
-		 Resources
Expended
£
(35,512)
(5,286)
(74,514)
(21,199)
(9,196)
(16,715)
-		 Transfers and
investment
gains/(losses)
£
-
-
2,796
20,378
-
16,355
-		 Carried
Forward
£
54,477
13,589
-
-
6,072
-
-
54,260
**£ **		 142,771
**£ **		 (162,422)
£		 39,529
**£ **		 74,138
**£ **
144,966
54,260		 211,158
142,771		 (230,468)
(162,422)		 (39,556)
39,529		 86,100
74,138
199,226
**£ **		 353,929
**£ **		 (392,890)
£		 (27)
£		 160,238
**£ **

66

FIGHT BLADDER CANCER

NOTES TO THE FINANCIAL STATEMENTS For the year ended 31 March 2023

STATEMENT OF FUNDS CONTINUED - 2022

RESTRICTED FUNDS
SUMMARY OF FUNDS - 2022
Restricted Funds
Research
Exemplar
Contact Cards
General Funds
Patient booklets
Patient Advocates
Website
Support		 Brought
Forward
£
-
24,454
2,773
7,676
3,734
-
-		 Incoming
Resources
£
15,830
-
115,008
1,858
2,909
408
510		 Resources
Expended
£
(14,180)
(5,579)
(84,046)
(19,207)
(15,367)
(25,565)
(7,916)		 Transfers and
investment
gains/(losses)
£
-
-
-
9,673
8,724
25,157
7,406		 Carried
Forward
£
1,650
18,875
33,735
-
-
-
-
38,637
_£ _		 136,523
_£ _		 (171,860)
£		 50,960
£		 54,260
£
144,106
38,637		 239,839
136,523		 (187,519)
(171,860)		 (51,460)
50,960		 144,966
54,260
182,743
£		 376,362
_£ _		 (359,379)
£		 (500)
£		 199,226
£

Description of funds

Patient booklets

A new initiative to develop, produce, launch, and distribute a suite of ten patient information booklets designed to support patients on every step of their bladder cancer pathway.

Health Professional Contact Cards

Personalised business cards for nurses and other health professionals to give to patients, with the charity's support services and their own contact details.

Exemplar

The project seeks to define what exceptional services for people affected by bladder cancer would look like.

Patient Advocates

The recruitment, training, and support of people affected by bladder cancer to share their insights and lead the work of the charity.

Website

Refreshing fightbladdercancer.co.uk to ensure that it contains current and accessible information about the diagnosis, treatment, and care of bladder cancer.

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FIGHT BLADDER CANCER

NOTES TO THE FINANCIAL STATEMENTS For the year ended 31 March 2023

15. ANALYSIS OF NET ASSETS BETWEEN FUNDS

Tangible fixed assets
Net current assets		 Unrestricted Funds
Designated
General
Funds
Funds
£
£
-
4,381
-
81,719
Nil
£
86,100
**£ **		 Unrestricted Funds
Designated
General
Funds
Funds
£
£
-
4,381
-
81,719
Nil
£
86,100
**£ **		 Restricted
Funds
£
-
74,138		 Total
Funds
£
4,381
155,857
Nil
£		 86,100
**£ **		 74,138
**£ **		 160,238
**£ **

16. OPERATING LEASE COMMITMENTS

The charity had no operating lease commitments (2022 - the same).

17. OTHER COMPANY INFORMATION

Fight Bladder Cancer is a registered non-company charity, charity commission registration number 1157763. The registered office is 51 High Street Chinnor Oxfordshire OX39 4DJ. The accounts are presented in GBP to the nearest £1.

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High Street Chinnor Oxon

01844 351 621

info@fightbladdercancer.co.uk Facebook/facebook.com/BladderCancerUK X/@BladderCancerUK Instagram/@BladderCancerUK