Over 20,000 people are diagnosed with bladder cancer every year in the UK. Following extensive research of 1,000 patients and carers,1 the charity identified that there was a major gap in the support and information available to bladder cancer patients and cancer specialists and that much of the information that existed was too technical and inaccessible. This gap has widened in recent months as a result of the COVID-19 pandemic. 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. Rather than one overwhelming monster directory, they cover each separate stage of a patient’s - from diagnostic tests to treatments, from living without a bladder to the impact on sex life, from nutrition to survival.
CEO of Fight Bladder Cancer, Dr. Lydia Makaroff says “Bladder Cancer is a little known and poorly prioritised cancer. Patients 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 that they make a real difference to people’s lives.”Launched on the first day of the virtual congress of the British Association of Urological Surgeons, these booklets will be distributed to healthcare professionals and clinical nurse specialists who can then ensure that patients can have relevant and timely access to them.
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.”
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.”
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. "
Fight Bladder Cancer Patient Information Booklets
The names of booklets are as follows:
- Tests and investigations
- What is a TURBT?
- Low-risk and intermediate-risk, non-invasive bladder cancer
- High-risk, non-invasive bladder cancer
- Muscle-invasive bladder cancer
- Living with a stoma
- Living with a neobladder
- Advanced bladder cancer
- Surviving bladder cancer
- Diet and nutrition for bladder cancer patients