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Bladder and Bowel 2021

Improving bladder cancer patient wellbeing

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Dr Lydia Makaroff

Fight Bladder Cancer Chief Executive

We are calling for the bladder cancer workforce to receive the necessary investment and support to provide the care that bladder cancer patients need and deserve. 


The options for bladder cancer treatment can involve some difficult decisions. Treatment options, such as bladder removal (radical cystectomy), have life-changing implications on lifestyle, sexual life, body image, mental health and wellbeing – even when they give the greatest chance of saving the patient’s life. People who undergo bladder removal will need either a stoma bag or a neobladder for the rest of their lives. For women, the operation could also involve a hysterectomy and removing the upper part of the vagina. For men, this operation might result in erectile dysfunction.  

Sexual wellbeing 

Communication around sexual life is important. Melanie Costin, bladder cancer patient and Fight Bladder Cancer Support Services Manager says “Sexual wellbeing was never mentioned during my care, there is a real gap in this area for many patients across the country. Dedicated support and guidance from specialists would make such a big difference to the quality of life of a bladder cancer patient.” 

21% of bladder cancer patients said they weren’t given the name of a clinical nurse specialist.

The role of clinical nurse specialists 

Whichever treatment bladder cancer patients receive, they will require ongoing specialist support from dedicated healthcare professionals. Our research, as well as longstanding evidence, shows that access to a clinical nurse specialist is particularly crucial for both patients’ quality of life and long-term outcomes. 

However, not everyone with bladder cancer has access to specialists. In our research, clinical nurse specialists reported issues of high caseloads and stretched resources as they are expected to support more people with a lack of on-going training. In our survey, 21% of bladder cancer patients said they weren’t given the name of a clinical nurse specialist. 

For the purposes of funding and workforce planning, bladder cancer is grouped with other urological cancers. This means that despite the specialist needs of bladder cancer patients, there is very little specialist bladder cancer provision. Cancer nurse specialists almost always cover all urological cancers, whilst the doctors involved in diagnosis are also often generalists. 

The full report is available at fightbladdercancer.co.uk/exemplar 

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