Results revealed mixed feelings about quality of care. While some men had a positive experience of treatment and care, a significant proportion said they were not given good quality information either about diagnosis or life during and after treatment.
For example, one in four men said they received “too little” information from the NHS when they were first diagnosed.
The vast majority of respondents were aged between 65 and 84, and most men had localised prostate cancer.
The questionnaire, which informed the development of Prostate Cancer UK’s Quality Checklist – outlining the care and support men should expect to receive through every stage of their journey – covered the whole prostate cancer pathway from diagnosis, through treatment, to support for living with and beyond the cancer. Here are the survey’s key findings.
Diagnosis
51% of UK men reported that their experience of diagnosis was “very good”
33% said it was “good”
6% described it as “very bad” or “bad”
27% said they received “too little” information, care and support on diagnosis
76% felt access to a prostate cancer nurse at an early stage was “very important”
24% said they were “pleased” with the speed of their diagnosis
16% who had a good experience said the support of a specialist nurse made the process more positive
12% experienced delays in getting a diagnosis
77% said good communication between their specialist and GP was “very important”
Treatment
27% said they had not received enough information to make an informed choice
43% had radiotherapy
35% had surgery
26% had hormone therapy
20% were placed under active surveillance
85% reported having side effects
19% said the care and support they did receive for side effects were “bad” or “very bad”
31% said they received “too little” aftercare for the treatment of side effects
52% suffered anxiety after treatment
67% suffered fatigue
76% had erectile dysfunction and 69% described loss of libido
68% had urinary incontinence
57% had difficulty passing urine
End-of-life care
85% said information about how to manage pain and other symptoms was “very important”
79% said having the contact details of a clinical nurse specialist was “very important”
22% thought their partner received support which was “bad” or “very bad”
36% said support was “good” and their partners were able to attend consultations and ask questions
Source: Prostate Cancer UK
Experiences
“On the day I was diagnosed, I was assigned a clinical nurse specialist. She was a superb source of information and a very caring person”
“I was made to feel an active partner in the decisions about treatment”
“Consultants and surgeons are very clever, but sometimes forget that they are treating a person not just a prostate”
“I wish consultants had been more sensitive. It was quite traumatic at the time. Cancer is something we all dread”
“There should be more support services in place for side effects and the consultant should check whether further help is required at each follow-up visit”
“The support I have received for erectile dysfunction is abysmal. I don’t think the consultants understand the emotional and physical difficulties we as patients endure. They don’t really listen to what we need”
“Six words sum up my experience of prostate cancer: amazing treatments, absolutely awful side effects. I would have liked more information about how side effects were likely to develop”
“My wife could have benefited from a conversation with a professional about my loss of libido and sex drive”
“The co-operation between urologist, oncologist and surgeon was seamless. It was like dealing with one medical team”
“I was totally unprepared for the amount of incontinence I was experiencing and was extremely distressed as no pads, help or advice were given that was going to reassure me, particularly the first night”
“I struggled on my own for two years with incontinence. I had no control at all. After spending £800 on incontinence pads, I discovered from my daughter, who worked in healthcare, that the services of an incontinence nurse were available”
“The choice about where to die is critical. I worry more about not being able to die at home than anything else”
“I would want to be comfortable and out of pain, my family to be comforted and be able to visit as much as possible”
