'IT’S
GOOD TO TALK'Patients and doctors should stop bemoaning the state of HIV services and start working together on improving them, says the UKC’s Chair
I smiled a bit at Allan Morris’s column in June’s PN, not because I don’t sympathise with his ongoing battle to fit his HIV clinic into his working life, his problem with his facial lesions, his sore throat, the sullen clinic receptionist, ripped hospital waiting room seat and no sandwiches. It’s all too true.
“Is this the best the NHS can offer?” Allan asked, obviously feeling generally messed about by a system that says, “pick up your bed and walk,” but itself has trouble crawling along to keep up.
Turning the page, there was Dr Mike Youle explaining the challenges he and colleagues face at the Royal Free in Hampstead. He was responding to Allan and other columnists in PN on topics like long waits for appointments, early/late clinics, emails, and so on. Mike says the problems being raised aren’t related to the willingness of the NHS staff to work hard, but by a ‘lack of commitment’ by management and Primary Care Trusts to provide an ever improving service to an ever increasing number of patients.
It’s great that we have Positive Nation where we can have these debates, but is it really the right place? Does it achieve anything? Well, it does and it doesn’t. Allan’s gripes about the worn-out chairs came to mind when I sat in one of the swish new replacements - we attend the same hospital. I realised I was waiting for a doctor who was on time in a clinic that didn’t have enough consultation rooms for us to have a discussion in private. I looked at the receptionist and thought “smile, go on, just a bit, not at me, but do it anyway”. What a job that must be...
There’s another way of dealing with all this. You take Mike Youle, Allan Morris, the clinic manager, the nurse manager, chief receptionist, and if necessary the catering manager, and you stick them in a room around a table and say, “what’s up?” Everybody has a say, everybody listens. In particular they listen to the things that patients say about the things that happen to them in the clinic. Then everybody realises they have a long list of suggestions and will need to prioritise how they can deal with some, or investigate solutions to others. That means you all have to meet again with enough time in between for people to do some work, so they have more to say at the next get-together. And you keep on doing it. And you call it a Clinic User Group.
Easier said than done, because it’s difficult to find enough people with the time and inclination to sit around discussing things in meetings, whereas patients talk one language, but appear to have to listen in another. It’s not impossible though. I was delighted to receive some notes of a meeting of another hospital’s clinic user group, and to read that 19 patients attended an event they held the previous Saturday, and that three new people had turned up for the monthly group meeting. That’s not a lot of patients, but it’s more feedback than the clinic would ever get if they didn’t encourage the group in the first place. And it’s making a difference.
A Clinical Nurse Specialist arrived behind reception at the clinic I mentioned before. She looked busy, but then looked up and saw me. Smiling she said “hello Bernard”. I moved from my place on one of the new chairs and sat on another one by the counter. We exchanged pleasantries and I put a date in my diary for the first ‘sort of’ meeting of the new clinic user group that hasn’t really gotten off the ground yet. “You’ve got to do something about these new chairs,” I said, “they are lovely, but this one is far too low.” Her face crumpled. I’d attacked something that she and her hard-working colleagues had considered at great length, fought hard to get funding for. It was as though I had taken an axe to the thing, but I was the one sitting on it after all. I looked up at her and she said, “thanks for that, we hadn’t considered it, I’ll see what we can do about getting a higher one”. It’s good to talk.
