Summary
Five years ago, when Andrew Winterbottom was diagnosed with an aggressive stage four bladder cancer, there was not a single charity or national support organisation for people affected by bladder cancer in the UK. Having found out how that bladder cancer is the 7th most common cancer in the UK, Andrew decided that there was an urgent need to change this situation. This desire resulted in the setting up of a charity and a confidential support forum for anyone affected by bladder cancer. The forum now has over 800 members and the Twitter feed has over 1,400 followers. Fight Bladder Cancer also runs a Cancer Buddy service and has started to set up local groups around the country.
Challenge
Over 10,000 people are diagnosed with bladder cancer every year in the UK - over 5,000 will not survive it. Although it is the seventh most common cancer in the UK, it is rarely mentioned and treatments have barely changed in 30 years.
Bladder cancer is the most expensive cancer to treat due to the very high recurrence rate, but it receives just 0.6 per cent of research spend. It is the only top 10 cancer where the prognosis is getting worse.
Despite all this, there was not a single charity to support people affected by bladder cancer or to help raise awareness. Hence the need for Fight Bladder Cancer, set up and run by people effected personally by the disease.
Objectives
Fight Bladder Cancer has just four objectives in its constitution. The first was the provision of support to bladder cancer patients, their families and caregivers. The second was the provision of information on bladder cancer, its symptoms, range, treatments and aftercare needs.
The third objective was to promote awareness campaigns regarding the causes, symptoms, treatments and aftercare to the public and within the medical profession. The final objective was the provision of support and funding for research into the nature, causes, diagnosis, prevention, treatment and cure of bladder cancer.
Solution
Using Facebook as a vehicle for the charity’s confidential forum meant that there were no set-up costs. Twitter also helped develop the charity’s success.
The team was aware that there are people affected by bladder cancer who do not use the internet, so has begun setting up local support groups around the country and organising regional social events.
Whilst the confidential forum was essential it needed an associated website. This was launched last October. It was important that the site was honest about bladder cancer but also easy to read. A great deal of time was taken to ensure that the style and tone of the website was right for the audience, whether patient or carer.
In the last 12 months the charity has begun raising funds through donations and the selling of awareness T-shirts and wristbands. This has helped fund awareness campaigns and the printing of information literature.
Results
The charity supports people affected by bladder cancer through its online confidential forum, Bladder Cancer Buddy service, website and local groups support. Approximately 850 members use the online forum, many from outside the UK.
The website is visited by people from all over the world – urologists direct their patients their for information and advice. Analysis of website statistics, numbers of unique visits and detailed stats on page visits and duration, along with qualitative surveys, helps the team refine the website on an ongoing basis.
The charity has achieved some media coverage, but recognises that there is more to do in this area.
The team also works with interested members of the medical professions, attending specialist study days and conferences.
Learnings
As a result of this project, clinicians have changed how they talk to patients, having read what patients say amongst themselves. The charity now has urologists, oncologists, clinical nurse specialists and GPs within its support network, actively taking part in the forum or listening to patients.
In the privacy of the forum, people often say things that they wouldn’t say to their medical team. This insight has become invaluable to professionals with an interest in bladder cancer. The confidential aspect of the forum is important to patients.
The team also discovered the importance of patients and medical professionals working together on initiatives.
Evaluation
The charity’s impact is measured by the responses of service-users. The team analyses the demographic make-up of service users so that new initiatives reach those not currently being reached.
The team’s bladder cancer message has already made a significant impact within the UK, achieved through a lot of effort and very little money. Fight Bladder Cancer has been asked to help spread its work into Australia, India and Austria, countries that do not have a dedicated bladder cancer charity.
