Experiences of the NHS prostate cancer pathway in Birmingham and Solihull

Healthwatch Birmingham and Healthwatch Solihull sought to understand people’s experiences of using NHS prostate cancer services in Birmingham and Solihull by listening to their views of using screening services, care and treatment, and support services. They undertook a survey to which 93 men responded.

Overall, a majority of the participants who have accessed prostate cancer services in Birmingham and Solihull have a positive experience along the prostate cancer pathway. Men were satisfied with the information they received about prostate cancer services and what to expect following referral, the way the service communicated with them, the support that was offered , the interaction and support from healthcare professionals and the speed of diagnosis, support, and information.

However, people expressed dissatisfaction with the screening protocols, noting the difficulties in getting a prostate check or a Protein-Specific Antigen (PSA) test, a blood test to help detect cancer . It is notable that screening/testing for prostate cancer is not offered routinely, as is the case for female related cancers such as breast or cervical cancer. Education on early testing and screening is an area which participants argued needs to improve. There is a need to ensure that communication and awareness comes through primary care rather than overly relying on prostate cancer charities.

There is also dissatisfaction with the role of the GP in prostate cancer care. Although most received information, participants expressed concern with the content not addressing the various needs they have. Others noted the information they received was ambiguous, it was often not received in a timely fashion to enable decision making and the mode of delivery was inappropriate. At times compassion was lacking.

 Delays in getting a diagnosis was another key concern alongside the lack of support, information and communication while waiting for the diagnosis. High quality information needs to be a priority in prostate cancer care, in order to reduce uncertainty, anxiety and distress for people. Participants received a range of treatment with the majority having surgery, radiotherapy and hormone treatment. Within the care and treatment pathway, a majority said the care and treatment they received was good or very good. Sixty-five percent of the participants said they were given enough information on treatment options, side effects and outcomes of each treatment. People’s sources of information were varied, with most receiving information from healthcare professionals. However, there is also a reliance on information from the internet, support groups and cancer charities. Although less than half of the participants said healthcare professionals involved them in making treatment choices and in care planning, seven in ten said they were assisted in reaching an informed and balanced decision about treatment.

Key concerns with the treatment pathway were:

• Lack of information about treatment options and content of information leaving some people unprepared for the post treatment effects.
• Timing of information making it difficult for some people to make informed decisions.
• Slow pace of treatment, which meant that at the time of treatment for some people the stage of the cancer had changed, which can potentially impact outcomes.
• Lack of post treatment support, especially after discharge.
• Delays in follow-up appointments.
• Lack of information about side effects following treatment.
• Lack of parity with other cancer services.

The support pathway is where the most variable care occurs, with a majority not offered or referred to support services for post treatment side effects. Symptoms after prostate cancer were common amongst the participants, with the greatest impacts on sexual dysfunction, urinary incontinence, fatigue, psychological and social wellbeing. Other impact relates to bowel effects  and hormonal issues. However, over two thirds said they were not offered interventions for these side effects. A majority were not offered access to a psychosexual clinic, incontinence clinic, specialist counselling and support with diet and lifestyle. The study shows the importance of healthcare professionals identifying side effects when following up with patients to ensure that support meets people’s needs. NICE notes that a Holistic Needs Assessment (HNA) is crucial to providing good supportive care, as it enables an understanding of the physical, practical, emotional and spiritual needs which should inform care and support planning. However, only 8% of participants said they had an HNA.

The report has nine recommendations about better support and information for people, waiting lists, choices about treatment, continuity of care and access to appointments.