Fight Bladder Cancer Officially Registered as a Charity in Scotland
27th July 2022
We are delighted to announce that Fight Bladder Cancer has officially been recognised and registered as a cross-border charity in Scotland. (SC051881) We would like to thank every member of the Scottish Steering Group for their time and effort in making this happen.
The Scottish Steering Group
The Fight Bladder Cancer Scottish Steering Group was formally established at a face-to-face meeting in 2019 in Edinburgh, hosted at the office of the Foundation for Scotland. It was created following a 2017 Awards for All Grant, a period of patient engagement and research into patient experience across Scotland. It is now a virtual group - members meet virtually every two months.
Scottish Patients & Fight Bladder Cancer
Scottish patients are involved in Fight Bladder Cancer in many ways - including co-creating our programme in Scotland, reviewing our patient and community information materials, organising the local support group meetings, and providing peer support to others.
Specifically:
Scottish Steering Group: 16 volunteers (a combination of patients, family members, doctors and nurses, four eminent Scottish urological consultants and community organisations) meet every two months to drive forward the charity’s work programme in Scotland.
Trustees: Two Scottish patients from the above group have also been chosen to represent the country on Fight Bladder Cancer’s trustee board.
Volunteers for Private Forum, Peer Support Groups & Bladder Buddies: We support 832 patients, 429 family members, and 151 healthcare professionals in our private forum, hospitals, support groups and in one-to-one linkups in Aberdeen, Airdrie, Ayr, Dundee, Edinburgh, Fife, Fraserburgh, Glasgow, Greenock, Perth, Inverness, Larbert, Melrose, Paisley, Perth, Stonehaven, Stornoway, and Wishaw. In 2022 we hope to support 900 patients, 470 family members, and 170 healthcare professionals – with targeted patient information, providing peer support, raising awareness, and sharing messages about early diagnosis.
Volunteers for Community Champions and Patient Ambassadors: Giving talks, raising awareness, spreading information about prevention, and fundraising in their local communities across Scotland. Furthermore, we are growing our programme of Patient Ambassadors (who are involved in proofing materials, speaking at conferences, and giving ‘expert patient guidance’ in medical & policy settings). We currently have 73 volunteers from Scotland in these categories.
Dorothy Markham, 86, Fight Bladder Cancer Trustee and Chair of the Fight Bladder Cancer Scottish Steering Group, said:
“We are optimistic about the charity’s future in Scotland. We have developed positive relationships with MSPs and Ministers in the Scottish Parliament. The National Clinical Director for Scotland has offered his support in raising awareness of bladder cancer in Scotland. The Fight Bladder Cancer Scottish Steering Group has recently secured a parliamentary event in February/March 2023. Many lives will be improved through the support and information we can provide to Scottish patients and their loved ones.
As an 86-year-old bladder cancer patient, who was 80 at the time of diagnosis, I have been pleased to share my journey with younger patients of both sexes; I’m proud to chair the Fight Bladder Cancer Scottish Steering Group and to be a Fight Bladder Cancer trustee. Bladder cancer is overlooked, and it’s not fair for the patients. So much work remains to be done to bring bladder cancer improvements up to speed in Scotland and the UK. My determination to campaign and make the world a better place remains unwavering.
I think having a bladder cancer charity in Scotland will make it easier to raise awareness, and, in many ways, this will lead to an improved understanding between England, Scotland and Wales. Although we are all part of one country, the culture and demographics of Scotland, England and Wales are very different, as is the fact that the NHS in Scotland is a devolved area of government. Whilst it will allow us to work under one umbrella, it will also let us see how each other’s culture and health services operate within the three nations.
It is common knowledge that charities registered in Scotland find it more accessible, although never easy, to raise funds for the charity. We have an advantage in Scotland that, over the last three years, we have had the opportunity of informing the Scottish parliament and individual MSPs and asking them for their support in raising awareness of bladder cancer.
Being a registered cancer charity in Scotland gives us more credibility within Scotland. A Scottish-based charity supporting patients in Scotland will find it easier to connect with the Scottish public. It will also help promote more locally based fundraising for a Scottish charity, which usually gives more positive results. So far, in Scotland, we have only touched on tiny areas.”
Danielle Marr, Scottish bladder cancer patient & Fight Bladder Cancer Trustee, said:
"I am absolutely delighted that Fight Bladder Cancer has become a registered Charity in Scotland! This is a great asset in raising awareness and providing support not just nationally but locally too. As a member of the Scottish Steering group, I am proud to have been a part of this journey and I look forward to the future of Fight Bladder Cancer in Scotland."
Danielle was 25 years old and half-way through her pregnancy when she became concerned by recurrent urinary tract infections and abdominal pain. “I had been prescribed several courses of antibiotics by my GP, but still my symptoms did not improve. I asked her if there was a chance that something more sinister could be going on, but I was told I was too young for bladder cancer and that some pregnant women are just unlucky.”
Danielle’s cancer which turned out to be high-grade, was found by chance, during a pre-natal ultrasound scan just a few weeks later.
Danielle is now keen to make a difference for people with bladder cancer, and to raise awareness of symptoms, especially in women who are frequently misdiagnosed.