Our policy work
Our policy work focuses on improving the experience and outcomes of bladder cancer patients in the UK.
We partner with different organisations across the UK to achieve these goals. We also established a group of dedicated patient advocates that represent Fight Bladder Cancer externally. They provide feedback on our advocacy strategy and activities, they lead on parliamentarian outreach across the UK, they support awareness raising activities especially in May (during awareness month) and share their personal experiences of bladder cancer to help drive change.
Recent policy achievements
The Exemplar research project was conducted to understand gaps in bladder cancer care across the UK. We launched the Exemplar report detailing our findings, with a policy roundtable discussion. We identified several key priority areas that need improvement, forming the basis of our policy work. In 2023, we held a policy event bringing together bladder cancer patients, advocates, nurses, health care professionals and other stakeholders to share experiences, identify gaps and propose areas of improvement in the bladder cancer pathway across the UK.
Access to immunotherapy
When bladder cancer maintenance immunotherapy treatment was not recommended by NHS in England, we expressed our disappointment, called for discussions to resolve uncertainties around cost-effectiveness, and submitted an official comment.
Fight Bladder Cancer shared stories of the experiences of people living with bladder cancer at recent NICE meetings reviewing immunotherapies for bladder cancer. NICE has subsequently recommended immunotherapy as an option for:
* maintenance treatment of locally advanced or metastatic urothelial cancer that has not progressed after platinum-based chemotherapy
* the adjuvant treatment of muscle-invasive urothelial cancer that is at high risk of recurrence after bladder removal in adults whose tumours express PD-L1 at a level of 1% or more
* untreated locally advanced or metastatic urothelial cancer in adults whose tumours express PD-L1 at a level of 5% or more and when cisplatin-containing chemotherapy is unsuitable
The Fight Bladder Cancer Scottish Steering Group was established to lead our work locally. They finalised a Scottish Development Plan, which enabled the charity to register with the Office of the Scottish Charity Regulator as a cross-border Charitable Incorporated Organisation (SC051881). Fight Bladder Cancer is now a registered Charitable Incorporated Organisation in Scotland (SC051881), England and Wales (1198773). History of Fight Bladder Cancer in Scotland.
Fight Bladder Cancer gets NHS24’s Haematuria Guidelines Updated
Fight Bladder Cancer’s Scottish Steering Group submitted a Freedom of Information Request(FOI) to NHS24 to find out more about how NHS24 triaging algorithms deal with and flag up patients presenting with bladder cancer symptoms.
As a result of our FOI request, and then an additional request for review, we were granted a meeting with a NHS24 Nurse Consultant from whom we learned that NHS24 had no special alerts around painless or repeat haematuria in their system at present. We explained why this was a problem and could potentially result in many bladder cancer patients not understanding the urgency of their symptoms and cause a delay in their treatment.
Coming out of the conversation with FBC, NHS24 agreed to task their Clinical Change Governance group with putting additional alerts into the triaging algorithm for haematuria. They have also input questions into the system to help get an idea of a patients UTI history/frequency and made it so that this information will get added to a patient's file and be passed on to their clinician. In addition, NHS24 committed to checking their upcoming self help UTI guidance and place a 'minimal referral guidance' note on the appropriate combinations of these symptoms in light of our discussion.
These changes will help many bladder cancer patients in Scotland catch their cancer and start treatment as early as possible.
Innovative Licensing and Access Pathway Patient Reference Group
We were selected to join the Innovative Licensing, and Access Pathway Patient Reference Group, which was established to ensure that patient views are an integral part of the delivery of the Innovative Licensing and Access Pathway ambition. The Patient Reference Group will provide their expertise from the wider patient perspective, particularly concerning the Innovation Passport designation stage, Target Development Profile stage and the specific patient engagement tool of the toolkit. The Patient Reference Group will work with the Medicines and Healthcare Products Regulatory Agency, the Scottish Medicines Consortium and the National Institute for Health and Care Excellence.
Urinary tract infection in adult women
We submitted feedback on the Scottish Intercollegiate Guidelines Network’s consultation on ‘Management of Suspected Bacterial Lower Urinary Tract Infection in Adult Women’. We are pleased to see that it includes the following statement: ‘If symptoms do not go away within a few days, or you are distressed by more severe symptoms or have repeated episodes within a short time, then get help from your healthcare professional.’
England, Wales and Northern Ireland Steering Group
In 2023, our group of patient advocates transitioned into a steering group for England, Northern Ireland, and Wales. We meet every two months to discuss ongoing policy work and other opportunities to positively influence bladder cancer care and raise awareness across the UK. Our steering group members support the four pillars of FBC's misison (support, change, research, and awareness) and engage in numerous projects throughout the year – including speaking engagements, parliamentary outreach, development of information booklets, awareness month activities, clinical trials and research participation.
Parliamentary engagement in the UK
Beginning in May 2021, during bladder cancer awareness month, Fight Bladder Cancer initiated a parliamentary outreach campaign to secure greater engagement with elected officials. The goal was to create a continuous dialogue with parliamentarians in the UK to ensure they are aware of key policy issues affecting patients, create bladder cancer ‘champions’ in parliaments, and to raise the profile of bladder cancer by putting pressure on decision-makers to pay greater attention to the disease. Letters were sent to a total of 11 elected representatives, and we received a total of 6 replies to the letters – a 54% success rate. We had 3-total in-person meetings with elected officials, namely: Stuart McMillan MSP, Humza Yousaf MSP and Cabinet Secretary for Health, and Dr Ben Spencer MP. A parliamentary motion was submitted in Scotland and supported by 27+ MSPs, and a parliamentary question was put forward in Westminster raising the issues that bladder cancer patients often face. The momentum and relationships built in 2022 throughout the programme of parliamentary outreach were expanded upon into 2023 by the EWNI and Scottish steering groups. The EWNI Steering Group held an awareness event at the UK Parliament during bladder cancer awareness month, which was attended by 19 MPs, who got to meet with and hear from bladder cancer patients. The Scottish Steering Group held an awareness event for MSPs in Holyrood in February with speakers that included bladder cancer patients, urological consultants and nurse specialists based across Scotland. Both events were well attended and served to solidify our relationships with parliamentarians and raise awareness of bladder cancer among high-level decision-makers.
National Cancer Plans - Scotland
As part of developing a new cancer strategy for Scotland, the government undertook a public consultation on the draft vision, aims and principles they are proposing to base a new cancer strategy for Scotland on. In March 2022, Fight Bladder Cancer drafted a reply to the draft cancer plan, in collaboration with the Scottish Steering Group and submitted it for consideration. The Scottish government commissioned an independent analysis of the responses to the consultation, and published the analysis report in November 2022. Fight Bladder Cancer was quoted in the Scottish Government's analysis of its Consultation on the New Cancer Strategy. The full Scottish cancer strategy has yet to be published, but this is a positive achievement for hopefully seeing bladder cancer mentioned by name in the new 10-year cancer strategy. History of Fight Bladder Cancer in Scotland.
National Cancer Plans - England
In March 2022, Fight Bladder Cancer submitted a reply to England’s 10-year cancer plan open consultation. Our response highlighted several recommendations for bladder cancer in England. In 2023, we learned that the government had scrapped the 10-year cancer plan, and replaced it with the Major Condition's Strategy. We joined One Cancer Voice, a coalition of other cancer charities to raise our concerns at the proposal and share concrete recommendations to ensure cancer care is sufficiently prioritised in this new strategy and our previous feedback and work on the cancer plan is not wasted. In March, we joined over 50 other cancer charities to submit our concerns via a petition outside 10 Downing Street and the Houses of Parliament in Westminster.
Data generation - Global Patient Survey
Fight Bladder Cancer actively participated in a global survey of bladder cancer patients from 2021-2022, organised by the World Bladder Cancer Patient Coalition (WBCPC). FBC supported several stages of the survey, including providing comments on the questionnaire for patients, recruiting patients in the UK to complete the survey (200+ total), and later, we provided an analysis of findings in the UK. This infographic and results were shared with the bladder cancer community in September 2023 at our Exemplar Review Meeting in Birmingham.
Health and Select Committee inquiry into cancer care
Fight Bladder Cancer endorses Cancer52's Response to Health and Select Committee Inquiry into Cancer Care.
- there are no regular measures of the extent of awareness and attitudes towards less common cancers
- data is not always fully disaggregated for less common cancers, which stymies the efforts of cancer charities
- staging data for 2019 will not be available until October 2021. All cancers report missing stage data and sometimes this is a significant percentage. For example, 17% of bladder cancer cases in 2018 were not registered, compared to only 8% of breast cancer cases.
- NHS England should establish a Rare and Less Common Cancer Taskforce
- published cancer data must be fully disaggregated for all cancer types
- the recommendations of NHS England’s Task and Finish Group on Psychosocial Support should be implemented in full
- the Government should invest in a £500m community fund to support charities.
There are lots of ways to get involved in our policy work.
- Join our bi-monthly Steering Group meetings. Send us an email at email@example.com
- Keep up to date with our work via social media – Instagram, Twitter, LinkedIn, and Facebook.
- Read about developments in our free magazine and newsletter
- There's always lots going on during Bladder Cancer Awareness Month in May. Find out how to get involved.
Here are some of our policy documents for you to download.
Get in touch
We’ve tried to make the information on this site as accurate as possible. Whilst we have support from medical professionals to review the general medical content of this site, please remember that only your medical team can give you specific advice about your symptoms or illness. Fight Bladder Cancer is a registered Charitable Incorporated Organisation in Scotland (SC051881), England and Wales (1198773), and was initially established as an unincorporated charity in England and Wales (1157763). It also operates in Northern Ireland.