An interview with Gordon Scott

Gordon Scott worked in HIV medicine for 35 years latterly as Clinical Director and GUM Consultant, NHS Lothian Sexual and Reproductive Health. He retired in 2016. To mark his retirement we spent some time asking him about his experience. In the first of a two part interview he talks about the early days of working in the field.

How did you get into the HIV field?

Purely by chance. I qualified from university in 1979 with no idea what branch of medicine I wanted to do. I did a couple of general practice jobs but they were not leading anywhere. Then I ended up working in Sunderland, and my wife was still in Edinburgh, so we were apart and she said 'You should really get back to Edinburgh to work. There's a job in GUM department, how do you fancy that?' So I came to do a six months job as a relatively junior doctor, and within a couple of weeks I found it fascinating, completely different to anything I did before.

The week before I started, in September 1981, there was an article in the Lancet on Kaposi's sarcoma in gay men, and it was followed up by an article in New General Medicine, on pneumocystis pneumonia in gay men in America. There was this new thing called AIDS in America, and we all sat around and thought "Is this going to come to anything?" and actually we all thought that yeah, this is going to be something. There were [patients] planning to go to America to have sex: San Francisco, New York, the two main places, that's where all the cases were. So when our first case came, late 83 – early 84, we were expecting it.

At that point we still didn't know what the cause was; we were pretty clear it was a virus, but it hadn't been identified. That was the first time we heard of immunodeficiency. This tended to be in guys that had had lots of other infections, they'd had syphilis, hepatitis B, they had had gonorrhoea many times, so one of the more exotic theories was that the immune system was just exhausted by fighting all these viruses.

It was also thought that it was due to lifestyle, but this tended to come from people who were taking a punishing attitude towards it. And the rest of us were saying "It's got to be a virus!" Because it's clearly passed from person to person. But when the first cases came, it was all purely clinical. People came and they had certain types of symptoms and you think, 'oh good, this is it'.

We didn't see pneumocystis pneumonia, PCP, until late 84, maybe even 85. We had seen guys with what was called age-related complex: with weight loss, oral thrush, diarrhoea, skin problems. We also saw guys with swollen lymph glands, it was called PGL, persistent generalised lymphadenopathy. A guy would come in, he'd say he had sex with this guy in America a year ago, and had just discovered he had AIDS. You would feel for the lymph nodes, and the commonest place was the back of the neck. It was awful finding them.

'Yes, you seem to have the lymph nodes that we associate with one of the manifestations of this.'

'What's going to happen?'

'I don’t know, but probably nothing good.'

It was already clear that once you had PCP, you had about 9 months to live. Kaposi's sarcoma was different, it sometimes took a gentle pathway, but PCP was bad news. The really horrible was cytomegalovirus, CMV. That went for the eyes, retinitis, and causes blindness. And they got horrible diarrhoea, their skin was just a mess, with all sorts of different infections, horrible thrush, which rapidly became resistant to drugs... They were brutal, brutal experiences

Do you remember your first patient?

Yes. It was late 83 - early 84. He got too ill for us, it was a real issue. The junior physicians were just used to dealing with gonorrhoea and genital warts. They weren't used to dealing with sick people. And suddenly we had these patients who were really sick, and we didn't have the confidence or the capabilities they demanded. It was all new, nobody was totally on the ball, because we'd never come across these particular scenarios, these complications to the infections they got.

Then in 1984/85 there was this huge outbreak among the intravenous drug users in Edinburgh, one of the biggest in the world at the time, and this switched all the attention to the Infectious Diseases Unit in the City Hospital, so when the patients got sick, they all went there. But gradually I persuaded colleagues that we could do this, and from about 86/87 we started to look after our own patients in the Royal Infirmary where we had a little ward.

To begin with, we saw gay men and the Infectious Diseases Unit got drug users. Drug users were predominantly heterosexual, so soon there were a lot of cases of heterosexually acquired HIV, and they were mainly women who didn't inject. They all went to the City Hospital, but then some patients said, 'No, I don't want to mix with that crowd', so we started to get some people from the Infectious Diseases Unit.

It useful having two sites, although it was a shame that it became a sort of competition to get patients. It was a new disease and it was infectious, so it was well funded. So it was very much in your interest to get as many patients as you can. They were good for the budget, which is terrible, but there is no doubt that there certainly was a lot of competition among the services.

What was the difference in the services that the two sites provided?

Because of the massive outbreak amongst the drug users there was tons of money thrown at the City Hospital. They had an amazing multidisciplinary team: social workers, dieticians, occupational therapists, counsellors, psychologists, psychiatrists... Huge upgrades were made to the ward. A GP once said the biggest risk to the life of a newly diagnosed HIV patient was to be trampled to death by the masses of clinicians wanting to help them. Whereas in GUM it was me and Sandy McMillan, and not much else, so you had a very personalised service in GUM. We would gradually build up the team, but the two sites were very different.

The next instalment of Gordon Scott's interview will be available in March 2017.