Fight Bladder Cancer - the New(ish) Kid on the Block
Fight Bladder Cancer is a UK based charity that was formed to provide information and support to people affected by bladder cancer. The charity started life as a small local support group but has now grown to be a very effective organisation offering global support through its new website, online confidential forum and support for local groups and research projects.
Andrew Winterbottom, founder and director of the charity tells the story of its beginnings and it's vision for the future.
Fight Bladder Cancer - the New(ish) Kid on the Block
The first strange thing about being told you have bladder cancer is that you most probably have never heard of it before. Despite being the 6th or 7th most common cancer (depending on where you live) it is a cancer that hardly ever gets talked about. The next thing to hit you and your loved ones is that there is very little information and support out there. When I was diagnosed in 2009 there wasn't a single charity in the UK dedicated to bladder cancer. Yes, there was general information, a lot of it very good, on the websites of the large cancer charities but nowhere dedicated to bladder cancer.
Whilst I was being rushed into treatment after being diagnosed with a T4G3 cancer my wife was left at home trying to make some sense of the madness that is a cancer diagnosis. In the end it was the American Bladder Cancer Cafe site (set up by patients themselves) that was the most help. The next best thing we found was a small general chat room being run as part of the Macmillan charity website where people with all cancers could chat. This was a lifesaver and a sanity saver, which also gave us the opportunity to 'meet up' with people online who also had a bladder cancer diagnosis.
A new friend who went by the screen name of 'Mike on a bike', who had been diagnosed just 6 months before me, plus his wonderful wife, were there to answer all our questions and give us suggestions for the questions we just didn't know to ask. Without that contact with other people affected by bladder cancer it would had been a very lonely and scary time. And that was why, six months post RC we decided to set up our own support group for bladder cancer patients being treated at the local hospitals to where we lived. But it wasn't long before we realised that just a local group was not enough.
Another 28 people were being diagnosed with bladder cancer every day in the UK and there was almost nothing out there for them. This made us think of a way to offer support to a much bigger audience. With an estimated 100,000 people living every day with bladder cancer in the UK, we needed to change tactics and move to a national internet based service.
And so our national bladder cancer support charity was formed in 2010 with its main outlet being a confidential forum housed on Facebook. Starting with just a few of us we have been amazed as to how big it has grown in such a short period. Now with almost 400 current members the forum is active with people supporting each other whether they are the patient themselves, a carer or a loved one. And it's not just UK people who are using the forum as we now have many from around the globe, especially from the USA, Canada and Australia.
The big project Fight Bladder Cancer took on in 2013 was the writing, designing and building of our own website. Planned from the beginning to be made patient friendly, all the work has been carried out personally by the trustees of the charity. A task that has meant learning how to build websites and how to design them so that it was easy to navigate for a patient or carer searching for help during those late nights when sleep just wasn't possible.
Our site went live early in October 2013 and now, just 4 months later, we are surprised and delighted by how many visitors we have had with almost no publicity accept for traffic from our forum on Facebook and our presence on Twitter. Already people from more than 30 different countries have visited the site.
Long term objectives
So what are the long-term objectives of Fight Bladder Cancer? As a charity we have three simple objectives:
1. Provide support and information for people affected by bladder cancer
2. Raise awareness about bladder cancer, it's causes, treatments and quality of life issues
3. Support research into the cause and treatment of bladder cancer.
Providing support has been the main objective in these first few years of the charity. Building on the Internet based forum we are now starting to support the setting up of local groups so that it is easier for people to meet face to face, a bladder cancer buddy service is in it's early stages and we have started to arrange group get-togethers so that our forum members can meet each other in real life.
This year, with our website now up and running, Fight Bladder Charity is raising funds for a large national awareness campaign. The campaign has two main aims of raising awareness both with the public and within the medical profession. We are attending conferences and study days this year with urologists, specialist nurses and GPs to develop a dialogue with the medical profession and to make them aware that we exist so that they can signpost their patients to the support that we offer. All to help improve awareness about bladder cancer and get more professionals talking about it.
Alongside this we, once enough monies have been raised, intend to supply every hospital and every GP surgery in the country with posters and leaflets about bladder cancer so that patients don't feel alone and know where they can go to for information and support. This, we believe, will be the first national campaign in the UK solely dedicated to bladder cancer. A campaign that has been a long time coming.
What about social media?
Social media has helped massively in our work so far and we anticipate that it will be a key part if our campaigns in the future.
As well as running our confidential forum on Facebook, we also have an open information Facebook page where we post news articles and links to bladder cancer stories of interest. We keep this very much up to date and often have broken news here before it has reached either the mainstream media or even the specialist urology periodicals! On Twitter we have, we have been told, more followers than any other bladder cancer charity worldwide. Not bad for a very young and still very small charity! This is certainly a media route that works for us and has opened many doors for us into the mainstream media and also introduced us to urologists worldwide.
Up until now the trustees of Fight Bladder Cancer have funded most of the work of the charity but this year we have started to start fundraising with greater effort to allow ourselves to expand our work and, hopefully, to even start to look at helping to fund research.
That's simple. To do more of what we are good at and help to change bladder cancer from being the one that is just not talked about to one where outcomes are improving year on year.
If you want to find out more about Fight Bladder Cancer take a look at their website and get in touch.