The most important place where two different health ‘experts’ meet to discuss the condition of one of them is, of course, the consulting room. Gus Cairns talked to three doctor-patient pairs about how their relationship worked and who got to make the decisions
Angelina Namiba and her doctor Charles Lacey at the Wharfside Clinic, St Mary’s Hospital, west London. Garry Brough and his doctor Ian Williams at the Bloomsbury Clinic, Mortimer Market Centre, central London. Paul Clift and his doctor Duncan Churchill at the Claude Nicola Centre, Brighton.
Angelina: I was diagnosed in 1993 and have been seeing Charles since 1996. I’m a kind of long-term non-progressor; my CD4 counts have hovered between 300-400. I have had skin problems and I took AZT when I had my daughter five years ago. So far I haven’t taken antiretrovirals though I know I’m going to have to eventually.
Charles: I’ve worked in HIV ever since 1985, originally in Tyneside. Back in those days we were in the business of relieving symptoms. These days there is much more room for patient and doctor to discuss options before making decisions.
 Ian Williams (left) and Garry Brough |
Garry: I was diagnosed in 1990. By 1994 I had an Aids diagnosis. I grew up with the dissident movement so was what you might call a ‘difficult patient’. I couldn’t take antiretrovirals for a while because I was on cancer chemo but finally decided to in 1997. My CD4 count is now 500, up from 10. I’ve made two changes to my original indinavir/d4T/efavirenz regime, from d4T to abacavir for the facial wasting and from efavirenz to nevirapine because of disturbed sleep. I knew Ian was the right choice as my doctor when I was on the ward.
Ian: I first met Garry when he was a very unwell patient on the ward, wearing an oxygen mask. I knew he was going to be a challenge! You can look back and say some of Garry’s understanding of his disease was not right, but you couldn’t criticise him for not being involved with it.
Paul: I also am a long-term non-progressor. I’ve been diagnosed for 15 years. I’ve only been a patient of Duncan’s for two-and-a-half years. They moved me precisely because I became the patient’s rep on the Trust Management Board and they worried I might have conflicts of interest if I was the patient of the chief consultant, Martin Fisher (my previous doctor). Ironically Duncan now sits on the board!
Duncan: I like to think I’m part of a ‘new regime’ that started in 1995 when Martin was appointed, though I didn’t turn up till 1999. At the time Martin was the only consultant. Since 1999 we’ve had a lot more local Brighton patients and are in danger of being a victim of our own success!
 Angelina and daughter consult Charles Lacey |
Angelina: I only see Charles once every three months but he is always available to answer queries. I can’t always get him on the phone but he makes sure his secretary phones me back. I was scared of my last doctor! In Kenya where I’m from you don’t question doctors and other authority figures. A few months back my skin broke out and I thought maybe I want to start therapy, I was a bit panicky about it. But my blood results weren’t as bad as I thought.
Charles: I’ve always been a ‘less treatment’ rather than ‘more treatment’ person. Drugs can poison people, and at least now patients often have more time to ‘bounce off the walls’ before considering treatment. Some patients however don’t make their minds up at all and want you to tell them. Angelina is at one end of the spectrum in terms of knowing what she wants!
Garry: Since I actually started with Ian I’ve been very co-operative. I’m completely anally retentive and when I’m ‘on a mission’ I’ll do it. I bought myself a watch with five alarms and am 100 per cent adherent despite the indinavir regime being difficult.
Ian: I don’t know if I’ve ever disagreed with Garry. My aim is to inform patients. But I don’t transfer responsibility entirely.
Paul: I proactively changed to Martin Fisher (before moving to Duncan) when a doctor once really, really upset me, quite inadvertently.
 Duncan Churchill |
Duncan: I welcome dealing with articulate patients. HIV patients are more challenging to manage medically - and as people. It has been a little complicated with Paul being on the management committee too. Someone whose role wasn’t patient rep might actually find it easier to challenge my decisions. If we had an area of really substantial disagreement, the stakes could be high.
Charles: I wonder if I was bossy with you when you were pregnant? I do remember saying you really should transfer your care to the Family Unit, where they have HIV paediatricians and make sure mother and baby are cared for in a coordinated way.
Angelina: I think it was me who was bossy! I was absolutely sure I only wanted to take the minimum: ie short-course AZT monotherapy, to make sure my daughter was not born with HIV. And I know what I want to take when I do start: Combivir and nevirapine. No efavirenz for me please, I’ve known too many friends go screwy on it; if I get a nevirapine rash I’ll take a protease inhibitor. And as for the Family Clinic I said I’d go there around the time I gave birth, but I said NO firmly to having long-term follow up there.
Garry: The only time I’ve taken a medical decision which turned out to be a mistake recently, it came as much of a surprise to Ian as me. Three years ago I decided to take a treatment break when I went on holiday. Well, within a few weeks my CD4 count had crashed to 60 and I had a viral load over two million, with nausea and flu symptoms.
Ian: It was a shock to me to be honest. I allow patients to make decisions but I’m primarily responsible when something like that happens. It really felt like we’d set the clock back. It he’d come down with an opportunistic infection and died...well...
Garry: I was surprised how apologetic Ian was. “I practically encouraged you to do this, I’m really sorry”, he said. I felt there was nothing to be sorry about. The whole incident made me realise my doctor really did care about me.
 Paul Clift |
Paul: Well I want to go on a long round-the-world holiday next year and I want Duncan to tell me I don’t have to start treatment till after that.
Duncan: Paul’s CD4 count has in fact been drifting down and we’ve had, er, discussions about this. In a way I am telling him things he doesn’t want to hear.
Paul: What I want to hear you say is “You can have this marvellous holiday travelling through places like Kyrgyzstan and China without any complications”!
Duncan: You did once get shingles on a Friday and didn’t phone in, just took the (wrong) dose of acyclovir. It wasn’t the self-medication I was annoyed with, it was waiting till Monday to tell me!
Angelina: I’d love to join the new Clinic User Group (CUG) here, but as a single mum I simply don’t have time to.
Garry: The CUG I helped set up runs a series of quarterly patient discussion workshops that alternate with business meetings. We recruited under-represented people by asking nurses to tell us about patients who were particularly well-informed and opinionated. About 30 people attended the last one.
Ian: Business-wise the CUG has been extremely successful. The pharmacy was a real issue both in terms of funding it and even more staffing it, as responsibility for this clinic is shared between three NHS trusts.
Paul: There’s a general issue in clinics round the country of not having enough capacity and patients and doctors are pulling together on that one. But I’ve had to bang tables about mental health services here, which are appalling.
