Analysis of patient interviews highlighted the unique nature of the specialist nurse role, and the value of this role to patients. Two key features of the specialist nurse role distinguished it from the roles of other health professionals involved in prostate cancer care. These features were: the availability of the specialist nurse to the patient, and the ability of the specialist nurse to liaise between the medical system and the patient.
The availability of the specialist nurse to the patient
Patients described the availability of the specialist nurse firstly in terms of the amount of time the specialist nurse was able to spend with them, and secondly in terms of the specialist nurse's availability for contact throughout their care.
Firstly, patients felt that the specialist nurse was able to spend as much time with them as was needed, and that their time with the nurse was not constrained. This was in direct contrast with the consultant, who was seen as having a limited consultation time. Having this time to talk things over was particularly important for patients after being given their diagnosis. The fact that specialist nurses were available for as much time as the patient needed was highly valued.
I had two, possibly, at least two meetings of hour and a half, two hours ...discussing in detail all the possibilities, all the options, my fears ...She did say herself, take as long as you want, you know, I haven't booked you down for a specific period of time and the first few meetings did take an hour and a half, two hours. Because I had so much to discuss with her (47)
Patients who did not see a specialist nurse after getting their diagnosis highlighted the lack of unconstrained time to talk things over, which had a negative emotional impact on them.
So there I am ... fairly confirmed I would think at that stage that I'm going to need cancer treatment, but no-one really to turn to. That was the thing, that in the whole experience of this, that was the worst moment. I needed somebody ...you know, in a ten minute appointment [consultant]'d really stretched his appointment time I'm sure to give me the benefit of his knowledge ... But that's what I felt I needed, someone to talk to, talk it through (14)
The timing of the consultation with the specialist nurse was important: one patient described seeing the specialist nurse immediately after being given the diagnosis, and felt that this was too soon as he was still in shock following the diagnosis.
No you can't absorb it and that's in a way was one little criticism of [specialist] nurse ... 'you've got prostate cancer' ... and she carts you off into a tiny little cubicle of a room ...and I don't know what the hell she said because ...that was too soon ...I was in a, in a state of numbness anyway at that point and so I don't really know what it was she was trying to achieve (19)
In contrast, one patient described how the specialist nurse had been sensitive to his shock and given him time to come to terms with the diagnosis.
She said to me 'well whatever you are told today you're not gonna take it all in' so they gave me a booklet on prostate cancer and treatments, what is involved and whatever and I was told to go away and read it, and then if I'd got any questions or you know things like that... (54)
A second key aspect of availability that patients valued was the possibility of contact with the specialist nurse for advice and support throughout their care.
Patients were often given the specialist nurse's phone number as a point of contact if they had any concerns or questions. This meant that contact with the specialist nurse was easy, and could be patient-initiated, so patients could have access to support or information as and when they needed it.
It worried me to death ...my mind were in like a whirl. I felt, I had to ring... [specialist nurse], 'cause I ask, I was asking myself questions I couldn't answer, you know 'Why this? And why that?'...after I spoke to her I felt a lot better ...Oh I can ring [specialist nurse] up any time I want to (27)
Just having the contact number was seen as a source of reassurance, whether or not the patient actually needed to use it.
[You can] contact her any time you want to...That's important that you can do that. What does it do, give you sort of reassurance that if you've got a problem or a concern that you can ring, that you know who to ring (38)
Patients who did not have access to this relatively quick and responsive source of support and information had to wait until they had an opportunity, in a scheduled consultation, to discuss issues of concern.
Interviewer: Would you find [contact number for specialist nurse] useful?
Patient: Yes, I would really because if um, odd times I've passed a bit of blood from the bowel and I could ring up and say, 'is that natural?'... You've sort of, you've got to wait till the next appointment, which is three months apart, and that's if they don't cancel it again or nowt (31)
The ability of the specialist nurse to liaise between the medical system and the patient
The second unique aspect of the specialist nurse role was that specialist nurses were seen as being in a position to liaise between the medical system and the patient. This involved firstly providing or restating information about diagnosis and treatment in terms which were clearly understandable to the patient, and secondly, acting as an advocate for the patient to facilitate the care process.
Firstly, patients described specialist nurses as helping them to understand and come to terms with their diagnosis and treatment through translating medical information in order to present it in an understandable way. This involved communicating in a patient-centred way and using non-medical language. Specialist nurses were also seen as more likely to address wider issues than simply the diagnosis and treatment, such as the impact of treatments on patients' lifestyles.
Patient: She did explain what the effects of the treatments are, the hormone therapy and so on...
Wife: She was down to earth, she didn't come up with any, you know so many medical terms...and she came up with a lot of practical things that perhaps the consultant wouldn't think to say... the fact that it's affecting your lifestyle (48)
Secondly, patients described this liaison role in terms of specialist nurses acting on their behalf to short-cut delays in care, to gain more information for them, and even to access particular medical services.
She can fiddle about and bang heads in the administration and get things happening (48)
There is two specialist nurses there, I've got their numbers, I speak to them and if there's anything else they will speak to the consultant and then they'll get back to me (54)
I said 'I want... [test]'...My surgeon said ' [patient name] does not require [test]'...But she got it, she got it through another um, consultant (49)
Where specialist nurses were involved in patient support groups, this helped to facilitate this informal liaison role.
When we go to our [patient support] meetings if I say to the oncology nurse ... 'well I've been a little bit worried because...' so she says 'ok don't worry about it I'll see Mr. so and so in the morning I'll give you a ring' (1)