Lack Of Specialist Staff Is Leading To Quality Of Life And Sexual Wellbeing Problems For Bladder Cancer Patients
28 May 2021
Extensive research project from charity Fight Bladder Cancer finds bladder cancer patients’ quality of life and sexual wellbeing is being impacted by a lack of specialist staff to provide them with the care and support they need
- Bladder cancer – the fifth most common cancer in the UK – is often grouped with other urological cancers (including kidney and prostate) for the purposes of funding and workforce planning
- Other urological cancers (particularly prostate) have been heavily prioritised in recent years, meaning bladder cancer has slipped further behind with fewer staff available to provide the crucial care that bladder cancer patients need
- This lack of specialist support has had a major impact on patients’ quality of life, sexual wellbeing and overall health outcomes
- The charity Fight Bladder Cancer is calling for the bladder cancer workforce to receive the necessary investment and support to provide the care that bladder cancer patients need, and deserve
Chinnor, Oxfordshire, United Kingdom. A diagnosis of bladder cancer places an ongoing burden on patients and carers with treatment and disease prevention often needed on an ongoing basis. This has a profound psychological impact on patients, carers and their families who endure anxiety, uncertainty and fear when they are diagnosed, and then for years to follow.
The options for bladder cancer treatment can also involve some incredibly difficult decisions for patients and their families. Treatment options such as bladder removal (radical cystectomy) have substantial 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. Patients who undergo a radical cystectomy will need either a stoma bag or a neobladder for the rest of their lives. For women, the operation will often involve a full hysterectomy and removing the upper part of the vagina as well as the bladder. Communication around sexual life is particularly important:
It’s not something that has been addressed at all... I was talking to the stoma nurse and she said you’d need to go through your GP and get referred [to get support with sexual wellbeing]. It hasn’t been broached and it’s embarrassing for me to talk about as well. I just want to start off the conversation, that’s the thing. It would have to be somebody medical who could look at my notes and see what was removed. I’m frightened to have sexual intercourse, I just don’t want to, because I just don’t want it to hurt me. Anonymised quote from a patient interview
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 a Clinical Nurse Specialist. In our research, Clinical Nurse Specialists report issues relating to high caseloads and increasingly stretched resources as they are expected to cover wider geographical areas with a lack of support for on-going training. In our survey, 21% of bladder cancer patients overall said they weren’t given the name of a CNS, with 24% of women compared to 16% of men. In the interviews, some patients who were given a named Clinical Nurse Specialist reported difficulties contacting them:
I know everybody says your Clinical Nurse Specialist really wants to hear from you and that’s what they are there for. But you do feel a bit like a pain when you ring. Because I did get that impression, that they were really busy. It was just a hospital card with names and numbers on and we never saw the same one twice. Anonymised quote from a patient interview
According to the National Cancer Patient Experience Survey in England, only 80% of urology cancer patients said they had a named Clinical Nurse Specialist – the only cancer grouping below 87%. With urology cancers also including high priority cancers like prostate, our research suggests the proportion of bladder cancer patients without access to a Clinical Nurse Specialist is substantially higher.
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.
Lydia Makaroff, Chief Executive of Fight Bladder Cancer said:
The NHS workforce plan has been long delayed. The one-year 2020/21 plan included provision for training grants for 350 nurses to become cancer nurse specialists and chemotherapy nurses. However, based on our research, this is a drop in the ocean for under prioritised cancers like bladder, particularly given the added pressures of COVID-19. Bladder cancer staff work incredibly hard to provide support to patients. We need a fully funded workforce plan now to deliver sustainable growth for the cancer workforce. Anything less will leave bladder cancer patients without the support they desperately need.
Melanie Costin, bladder cancer patient and Fight Bladder Cancer Support Services Manager said:
Having bladder cancer can have a huge impact on people's sex lives, not just due to the mental strains after a diagnosis, but also because the treatments are very invasive, often causing pain and discomfort; it can change the way people feel about themselves. For those people having a bladder removal there are significant changes. Men could have their prostate removed which can lead to Erectile Dysfunction, whereas many women may find that the vaginal shortening often done during surgery makes it difficult for them to be able to function sexually in the way they could before.
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.
ENDS
NOTES TO EDITORS:
To arrange interviews, speak to bladder cancer patients or for further information about Fight Bladder Cancer, or the Exemplar report, please contact:
Lydia Makaroff:
07427 547 783
lydia@fightbladdercancer.co.uk
Kieran Lucia:
07805 949085
kieran.lucia@incisivehealth.com
Or email the whole team at AHCIncisivefbc@incisivehealth.com
About Fight Bladder Cancer
● Fight Bladder Cancer is a dynamic, patient-led national organisation operating from its headquarters in Oxfordshire, United Kingdom
● They provide support services for people affected by bladder cancer, and are involved in awareness, advocacy and research. They work to ensure that everyone affected by bladder cancer – patients, carers, family and friends – has evidence-based information, support and advice
● Find out more at www.fightbladdercancer.co.uk or on +44 (0) 1844 351621 / info@fightbladdercancer.co.uk
About the Exemplar Research Project
- Fight Bladder Cancer’s Exemplar Project, ‘Striving for Exceptional Services for People Affected by Bladder Cancer’, explores the current strengths and gaps in bladder cancer services in the UK and makes recommendations for transforming the experience, outcomes and lives of the over 20,500 people diagnosed with bladder cancer in the UK every year, and their families
- Qualitative interviews were conducted with 30 bladder cancer patients, 10 informal carers or family members and 17 health care professionals working with bladder cancer patients
- To supplement the in-depth interviews with people affected by bladder cancer and health care professionals, Fight Bladder Cancer worked in partnership with market research consultancy Brainsell to survey 106 UK bladder cancer patients about their experience of bladder cancer services
- The full report is available at fightbladdercancer.co.uk/exemplar
- We are grateful to Astellas, Bristol Myers Squibb, the Merck-Pfizer Alliance, MSD and Roche for their support in covering the costs associated with the Exemplar Project, and to Arquer Diagnostics for funding the online survey conducted by Brainsell. Editorial control of all materials has been retained by Fight Bladder Cancer
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