May is Bladder Cancer Awareness Month, a global campaign aimed at focusing attention on bladder cancer. Every year, more than 18,000 people in the UK are diagnosed with bladder cancer. Though it’s the fifth most common cancer in the western world, it’s often overlooked when it comes to funding and patient support.
Spearheading the campaign in the UK is Fight Bladder Cancer, a patient-led UK charity dedicated to supporting people affected by bladder cancer. Throughout May, Fight Bladder Cancer works with patients, carers, medical professionals, community groups and companies across the UK to highlight the impact of bladder cancer, promote awareness of the symptoms and urge greater investment in research.
We recently reached out to Emma Low, Fundraising and Communications Lead for Fight Bladder Cancer, to learn more about the importance of Bladder Cancer Awareness Month and how the charity leverages it to drive vital awareness and raise urgent funds.
Can you tell us about Fight Bladder Cancer and how the charity came to be?
Fight Bladder Cancer is the only patient and carer-led specialist charity for bladder cancer in the UK. There are over 18,000 new cases diagnosed annually in the UK and Bladder Cancer is the 5th most common cancer in Europe. The charity works across the UK to support everyone affected by bladder cancer. It helps to raise awareness, funds medical research and campaigns to affect policy at the highest levels to bring about change in bladder cancer treatment. The charity aims to achieve better outcomes and quality of life for those affected by the disease.
We provide information about bladder cancer through our website, run awareness campaigns for the public and medical profession; influence policy and research; and support thousands of patients and carers day-to-day. We have also built a confidential online community of over 4,500 patients and carers. Patients and carers regularly tell us that talking with others following a bladder cancer diagnosis improves their health and well-being.
Andrew Winterbottom started Fight Bladder Cancer in 2009 following a diagnosis of a Stage 4 bladder cancer, when he was astounded that there was no specialist charity supporting people with this condition. Andrew experienced first-hand the isolation of being diagnosed with bladder cancer, as well as the discomfort of surgery and invasive treatment. He and his wife, Tracy, found it extremely helpful just to talk with people who understood what they were both going through. It was these snippets of real information that made such a difference in those early days. Andrew and Tracy’s experience left them with a desire to share their learning with other patients, medical professionals and family members who, like them, recognised the need for urgent improvement in diagnosis, care, prevention and research in the field of bladder cancer. From these experiences, Fight Bladder Cancer was born.
What are some of the ways that the charity is leading the fight against bladder cancer?
Since its inception in 2009, the charity has been listening and responding to the needs of bladder cancer patients and carers. Being patient and carer led is the charity’s core value.
Fight Bladder Cancer has four priority impact areas:
1.Support and information for people affected by bladder cancer
Fight Bladder Cancer aims to ensure that people can access reliable information and support whenever they need it. The charity has over 200,000 unique website viewers annually and a confidential online community of over 5,000 people. The website provides free downloadable information booklets, which are regularly reviewed by a panel of medical advisors and patients and carers for accuracy. The charity’s resources are limited, but it is working hard to build its face-to-face initiatives, including new patient-led groups (called Fight Clubs) and a patient-led mentoring service (called Bladder Buddies).
Fight Bladder Cancer informs the public about the causes of bladder cancer and its treatments. We also raise medical professional awareness to improve adherence to recommended best practice by attending national and international urological conferences. The charity has optimised social media to aid its outreach. We have over 4,500 Facebook friends, many of whom are patients and carers, and 4,000 Twitter followers, many of whom are medical professionals. Early diagnosis posters and information leaflets are distributed in hospitals and urology clinics all over the UK and the charity publishes FIGHT magazine, a high-quality publication written for the bladder cancer community, containing articles by bladder cancer specialists, patients and carers. Fight Bladder Cancer also works with GPs to improve diagnosis rates, partners with Public Health England on the Blood in Pee Campaign and collaborates internationally during Bladder Cancer Awareness Month in May.
3.Research into bladder cancer
Fight Bladder Cancer is supporting research by scoping trials, advising on patient information, providing patient representatives for Trial Management Boards, and has been the patient voice at National Institute for Clinical Excellence and Scottish Medical Council health technology assessments for new treatments. Training patients and carers to be ‘representatives’ is a vital activity. Feedback from researchers, funders and academics indicate that the charity’s patient voice and outreach has already increased the number of bladder cancer clinical trials taking place.
4.Change and Influence
The charity is dedicated to influencing policy changes, which can speed up the pace of improvement in bladder cancer outcomes. Our credibility is growing rapidly and we are frequently invited by the Institute of Cancer Research, the Department of Health and NICE, to represent patients in devising national policies on bladder cancer. Most recently, the charity has followed up being a stakeholder on the NICE Bladder Cancer Guidelines to be an expert adviser on the resulting Quality Standards. Fight Bladder Cancer has also partnered the British Association of Urological Nurses by co-designing the recently launched Patient Held Record system.
What are some of the biggest challenges you face in raising awareness and support for bladder cancer?
Over 18,000 patients are diagnosed with bladder cancer every year, and there are an estimated 100,000 men and women living with the disease in the UK. Bladder cancer was known as “the poor working man’s cancer” and until 2009, had no single-focused ‘bladder cancer charity’ to offer the patient and carer’s voice or to campaign for change. This has resulted in it being significantly neglected amongst cancers in the general population. There have been no new treatments for bladder cancer for over 35 years. Even though it is the 5th most common cancer in Europe, bladder cancer receives less than 1% of annual cancer research investment in the UK.
The biggest challenges in raising awareness around Bladder Cancer are:
- Being a small ‘single-issue’ voice in a charity sector populated by larger charities and bigger voices with more money to invest in drawing attention to themselves.
- Evidencing the link between awareness and impact or change in people’s lives
- The challenge and expense of investing in infrastructure and capacity (office facilities, distribution systems, marketing technologies) that can help us optimise our reach to patients and carers.
- Lack of celebrity ambassador with patient or carer experience who is prepared to shout out about the condition and access media coverage.
How does Bladder Cancer Awareness Month help you elevate your messages with supporters?
The awareness month is vital to Fight Bladder Cancer because it provides a calendarised annual opportunity to shine the light on bladder and aids collaboration so we can share the signs and symptoms of bladder cancer to aid early diagnosis, highlight the impact of bladder cancer on people affected, and urge greater investment in research.
Our campaign theme for Bladder Cancer Awareness Month 2019 is to focus attention on nurses and thank them for all their support, excellent care and hard work with bladder cancer patients. We will be targeting our media messages on bladder cancer nurses throughout the month. Key messages include:
- Nurses are the lynchpin of bladder cancer health teams, playing a crucial role in bladder cancer diagnosis, treatment and care.
- Nurses are often the first health professional that people see and the quality of their initial assessment, care and treatment is vital.
- Fight Bladder Cancer recognises that inaccurate methods of counting patient numbers mean that clinical nurse specialists are overloaded and under-resourced.
- Fight Bladder Cancer will be fundraising to improve its support for all nurses in the UK who are working with bladder cancer patients.
What events or activities do you have planned for Bladder Cancer Awareness Month?
During Bladder Cancer Awareness Month, we are going all out to raise awareness of signs and symptoms, capture media interest and most importantly, to provide solidarity to patients and carers. And of course – not forgetting aiming to raise funds for Fight Bladder Cancer through all kinds of activities and events. We are always open to ideas – so please don’t hesitate to get in touch at firstname.lastname@example.org to join forces with us. Just some of the activities include:
- Working with hospitals and clinics; patients and carers to wear loads of orange and host information stands throughout the month! Orange is the globally recognised colour for bladder cancer and our shop provides many tasteful and fun orange products to ensure that everything has a splash of colour!
- Blowing bubbles for bladder cancer (across the month but particularly on Sunday 19 May, which we have earmarked as Bubbles for Bladder Cancer Day when families join in solidarity around the world).
- Encouraging GPs and hospitals to put up posters and other marketing material about bladder cancer to spread awareness.
- Many of the charity’s community and corporate partners are hosting a Learning and Awareness Session for staff at lunch time to raise awareness and share information about signs and symptoms.
- We are working with patients and carers and our regional support groups to take a Wee Walk for bladder cancer. This can include simply going for a walk with friends and family members in your local community, or something more challenging or perhaps connected with fundraising. There are 4 walks being promoted centrally by Fight Bladder Cancer on Eventbrite.
- Policy work includes prep-preparing a Letter to local MPs asking for increased resources, nursing staff, facilities and equipment to meet the growing needs.
- Encouraging patients and carers to use social media to shout out a ‘thank you’ to nurses and medical staff supporting patients all over the UK.
- Fundraising by patients and carers; hospitals, urology teams, doctors and nurses; companies including health diagnostic firms and pharmaceuticals; and support groups based in the community. They are running, walking, climbing and baking! They are all working hard to help Fight Bladder Cancer reach more patients every year.
What makes awareness month campaigns so important for charities?
An awareness month allows a single-focused cause to collaborate with other similar or like-minded organisations to shine a light on their issue and change hearts and minds. They provide a united opportunity to promote knowledge and insight; achieve community and organisational change; prevent atrocities and develop solutions; and change behaviours.
Bladder Cancer Awareness Month is primarily a valuable annual opportunity for people affected by bladder cancer to gain solidarity; to stand together; be recognised and challenge the fact that bladder cancer is a neglected disease. This isn’t just the case for patients, carers and family members in the UK but for people around the world.
Bladder Cancer is undeniably under-resourced, under-funded and under-prioritised in the UK – DESPITE being the most expensive cancer treated currently on the NHS. Change is possible and necessary and Fight Bladder Cancer and the patients, carers and medical professionals with whom we work relish this annual opportunity to shine the light on this disease.
What advice do you have for other charities to make the most of awareness campaigns?
Plan Ahead – Arguably we knew this month was coming a year ago, and despite planning earlier than we did last year, we really will need to start planning for 2020 in June this year!!
Partnership and Collaboration – An awareness month is a chance to collaborate with other like-minded organisations, professionals and sectors and form partnerships with common-goals. We recommend joining forces during an awareness month as much as possible. This also makes scarce resources go further.
Realistic Expectations – Whilst we are a tiny charity, turning over just over £300,000 last year, we are extremely ambitious and have set ourselves some pretty stiff challenges and goals for Bladder Cancer Awareness Month in 2019. We do need to remind ourselves that as a tiny team, bolstered by volunteers, we can’t do the impossible and learn to accept when we’ve been successful and impactful and when we must get some sleep!
Anything else you’d like to add?
Take time to learn as you go (we’ve got a checklist of lessons learnt as we deliver throughout the month) and remember to HAVE FUN!!
Find out more about Fight Bladder Cancer and how to show your support during Bladder Cancer Awareness by visiting their website or getting in touch!
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