Turning the tide: Modernising the bladder cancer pathway

Change is needed in the bladder cancer pathway

Download our report HERE.

Thousands of people are diagnosed with bladder cancer in the UK each year and it remains one of the key healthcare challenges facing the NHS. But for too long, bladder cancer has not been prioritised sufficiently to deliver meaningful improvements for patients.

The bladder cancer pathway is outdated and the quality of care that patients receive is still too varied across different parts of the country.

It is no coincidence that bladder cancer is one of the few major cancer types where outcomes have not improved over the past decade.

This has to change.

There’s a promising outlook

We’re confident that this change is on the horizon. The next few years promise to be an exciting time for bladder cancer, with new research and innovations coming through – from precision medicines, genetic testing and diagnostics opportunities to clinical pathway optimisation.

To fully realise these opportunities action is needed now to modernise the bladder cancer pathway and ensure that it is ready to deliver the promising opportunities of the future.

This report explores the areas of the bladder cancer pathway in England that are working well, where pressures exist and where effort should be focused to drive improvements for patients, healthcare professionals and the NHS.

Our report

We are very grateful to those who offered their time and expert input into this report. We thank the people with lived experience of bladder cancer who shared their stories, as well as the following healthcare professionals and experts:

• Ms Hilary Baker, Macmillan Lead CNS for Urooncology, University College London Hospitals
• Professor Alison Birtle, Consultant Oncologist and Honorary Clinical Professor, Lancashire Teaching Hospitals NHS Foundation Trust
• Ms Kay Boyer, Bladder Cancer Clinical Nurse Specialist, University College London Hospitals
• Professor Ananya Choudhury, Chair and Honorary Consultant in Clinical Oncology, Manchester University and The Christie NHS
  Foundation Trust
• Professor Rakesh Heer, Consultant Urological Surgeon and Chair in Urology at Imperial College London
• Mr Joseph John, Urology Specialty trainee, Royal Devon and Exeter NHS Foundation Trust and National Fellow for GIRFT Urology
• Professor John Kelly, Consultant Urological Surgeon and Clinical Lead, Westmoreland Street Hospital
• Mr John McGrath, Consultant Urological Surgeon at North Bristol Trust and National Clinical co-lead for GIRFT Urology
• Mr Daniel Richardson, Macmillan Enhanced Recovery Clinical Nurse Specialist, University College London Hospitals
• Dr Bernadett Szabados, Consultant Urological Surgeon, University College London Hospitals
• Mr Richard Weston, Clinical Nurse Specialist for Bladder Cancer, University College London Hospitals

Key stats and facts in bladder cancer

Our recommendations

We’re patient focused and committed to improving the bladder cancer pathway and these are our recommendations to ensure that the pathway is fit for the future. While ultimate responsibility for these recommendations lies with the Government and its associated bodies, The Urology Foundation is committed to collaborating in support of their implementation.

1. The planned update to the NICE bladder cancer guideline should be accelerated while the next guideline needs to be future-proofed to respond to the significant innovation that is occurring across bladder cancer care. To support this process, it is vital that NICE draws on evidence from the wider bladder cancer stakeholder community to inform the necessary pathway improvements. The Urology Foundation will work with the wider community to inform this process

2. A specific National Bladder Cancer Audit should be established to enable the systemic evaluation of local bladder cancer care across key performance indicators including time to definitive treatment, cystectomy rates, and surveillance adherence for high-risk patients

3. The next update to the Cancer Waiting Time standards should include specific measures focused on high-risk bladder cancer patients

4. The Government’s forthcoming refresh of the NHS Long Term Workforce Plan should include specific provisions and targets for the training and recruitment of Clinical Nurse Specialists and Clinical Support Workers

5. A sustained long-term National Awareness Campaign to improve symptoms awareness should be delivered, with tailored messaging for older adults, women, those most at risk, seldom heard and deprived communities. The Urology Foundation will work hard to continue raising awareness of bladder cancer symptoms and would be delighted to work with the government to do so

6. The Government’s focus on early diagnosis is crucial but should be expanded in scope to ensure that early diagnosis of cancer recurrence in high-recurrence cancers is also a national priority

7. The UK’s genetic testing capacity should be strengthened through modernising the genetic IT infrastructure and recruiting additional trained clinical scientists

8. Alongside pathway reform, more research into bladder cancer diagnosis, treatment and the follow-up pathway must be promoted and encouraged

9. There should be more opportunities for HCPs to share their experiences of setting up excellent patient-focussed services

Information and support for people living with bladder cancer

For information on bladder cancer, see our health page and the information on the NHS website. If you would like to hear from others who have experience of bladder cancer, see our video series ‘Bladder Cancer and Me‘.

We’re working hard to drive change

At The Urology Foundation, we’re incredibly proud to be working alongside a strong bladder cancer community – from charities and patient organisations to professional bodies, healthcare professionals, researchers, academics, policy makers and industry – to call for this change and give current and future bladder cancer patients the best possible chance to live well.