Patient charity launches unique and inspirational bladder cancer guides
9 November 2020
Patient-led charity, Fight Bladder Cancer, has launched the first ever suite of ten booklets designed to provide bladder cancer patients and their families with the help and information they need about every stage of the disease.
Founded by patient Andrew Winterbottom, who was diagnosed with bladder cancer in 2009 and died in 2019, Fight Bladder Cancer is on a mission to spread awareness about this neglected disease. Artist Tracey Emin, who recently announced her diagnosis, is one of the 20,000 people who are diagnosed with bladder cancer every year in the UK . Following extensive research, the charity identified a major gap in the support and information available to bladder cancer patients. This gap has widened in recent months as a result of Covid-19 as patients find it more difficult to access NHS expertise. Covid-19 has led to a massive drop in the number of opportunities for patients to meet face-to-face with medical professionals to discuss their illness.
To address this gap and provide both the NHS and patients with a valuable and easy-to-use resource, the charity has created a suite of ten booklets, which provide clear, accessible advice from medical specialists as well as first-hand tips and guidance from patients who have been through the same experiences. Unlike previous information sources, these Fight Bladder Cancer booklets have been designed in collaboration with patients and are broken into small bite-size chunks. Each booklet covers a separate stage of a patient’s journey - from diagnostic tests to treatments, from living without a bladder to the impact on sex life, from nutrition to survival.
The information booklets produced by Fight Bladder Cancer are unique because they are large-print, full colour, contain photos and stories of real-life survivors, are endorsed by medical professionals, and are filled with handy tips from others who have gone through a similar journey.
Susan Mullerworth is a bladder cancer patient who knows that these booklets will make a big difference to people living with the disease “These booklets will make such a positive impact on everyone affected by bladder cancer. Reading these booklets is like getting advice from a best friend who has already experienced all the ups and downs. These booklets go into all details that the doctors don’t tell you – including sex, sleep, and stress.”
CEO of Fight Bladder Cancer, Dr Lydia Makaroff says “Bladder cancer is a little known and poorly prioritised cancer. Patients can often feel isolated, finding it difficult to get support and information. Our founder, Andrew Winterbottom, was passionate about creating the ‘wee family’, a community of support to help those in need. We have put patients’ voices at the heart of these booklets so people don’t have to feel like they are going through this alone. Our goal is that all 20,000 people that are diagnosed each year in the UK have access to these booklets and they make a real difference.”
Julia Taylor MBE, Macmillan Consultant Nurse and Past President of the British Association of Urological Nurses, says “I recommend that all urological nurses ensure that all bladder cancer patients can access this excellent library of resources. These booklets are a fantastic source of information and reassurance, and offer advice by patients for patients.”
Professor Jim Catto, a Trustee of Fight Bladder Cancer and member of the British Association of Urological Surgeons, states “Fight Bladder Cancer's new suite of materials will make a massive difference to the care pathway of thousands of bladder cancer patients and their families.”
Melanie Costin, a patient herself, as well as Support Services Manager at Fight Bladder Cancer, says “When I was diagnosed with bladder cancer I felt alone and didn’t have any idea about what to expect or how to find out about it. These booklets will make all the difference as they have been written with the help of bladder cancer patients, like myself, to provide people diagnosed with the disease with key information and personal insights to help them every step of the way.”
Dr Alison Birtle, Trustee of Fight Bladder Cancer and Secretary of the British Uro-oncology Group, says "These booklets are absolutely fantastic, and filled with practical information. There are so many top tips in there which I couldn't have imagined as a healthcare professional. There's nobody who knows the journey as well as a patient who has already been through it." The booklets will be distributed to medical professionals across the UK, who will order the most appropriate booklets for their patients.
Fight Bladder Cancer is dedicated to achieving better outcomes and quality of life for all those affected by bladder cancer. The charity is committed to raising awareness, supporting medical research and campaigning to affect policy at the highest levels to bring about change.
The names of the booklets are:
1) Tests and investigations
2) What is a TURBT?
3) Low-risk and intermediate-risk, non-invasive bladder cancer
4) High-risk, non-invasive bladder cancer
5) Muscle-invasive bladder cancer
6) Living with a stoma
7) Living with a neobladder
8) Advanced bladder cancer
9) Surviving bladder cancer
10) Diet and nutrition for bladder cancer patients
MSD, Roche, and the Merck-Pfizer Alliance provided financial support to Fight Bladder Cancer to cover some of the costs associated with the production and dissemination of this information booklet. All editorial control has been retained by Fight Bladder Cancer.
More about Bladder Cancer
Bladder cancer is not a rare cancer, even though it is hardly ever talked about.
- More than 20,000 people are diagnosed with invasive and non-invasive bladder cancer each year in the UK (Makaroff LE, Phillips R, Randall A. 2020. My Diagnosis Counts. Fight Bladder Cancer Magazine. Volume 10, pp 17-19)
- Bladder cancer is the 5th most common in Europe. For men, it is actually the 4th most common. (Ferlay, et al. 2018. Eur J Cancer, 108: 356-387)
- The majority of people diagnosed with bladder cancer are over 60 years old, but increasingly affects people of all ages, from children to teenagers, young adults to the middle
- Despite this high occurrence, bladder cancer receives less than 1% of the funding for cancer research.
The main symptoms are:
- Blood in your urine, no matter how much or how many times
- A need to urinate more often or with a sudden urgency
- Urinary infections that don’t clear up
About Fight Bladder Cancer
When Andrew Winterbottom had his bladder cancer diagnosis in 2009, he was shocked to discover there was no support of any kind focused on bladder cancer. He made it his mission to make sure that no one in his position should ever feel alone. Today Fight Bladder Cancer is a national organisation operating from its headquarters in Chinnor, Oxfordshire. It is involved in support, awareness, advocacy and research.
Its private forum has over 4,800 members. The charity’s work is patient-focused, and it is recommended by many leading urologists, oncologists, specialist nurses and researchers nationally and internationally.