It is 40 years since the first case of HIV/AIDS in the UK and the death of Terry Higgins in 1982. On 1st December 1988, the Terrance Higgins Trust released 1,000 balloons to commemorate the approximate number of recorded UK AIDS cases the previous year – this was on the first World AIDS Day.

Dr Elizabeth Hall, one of the founders of St Helena Hospice, remembers these early days and the response of the hospice movement...

In addition to general ignorance about this disease and how it spread, there was a lot of prejudice about sexual orientation. People applying for mortgages and life insurance were asked very personal questions about their sexual behaviour. Some even lost their jobs in an atmosphere of criticism and distrust. These attitudes led to people moving away from their families and isolating themselves.

It is worth remembering the sensation caused by Princess Diana shaking hands with patients with AIDS without gloves and cuddling infected children.

Soon after the Hospice opened in 1985 this whole situation was filling the news.

How should the Hospice respond? It was obvious the acute infections needed active treatment in hospital but at other times these people and their families needed skilled medical and nursing care and much emotional support. Surely hospices had a role to play.

However, there was much resistance mainly due to fear of loss of charitable revenue due to the prejudice of many of the public against people who contracted it.

I felt strongly that we had a role to play, as did many staff. After quite a bit of resistance it was agreed we could admit people with AIDS or who were HIV positive. It is hard to explain now, almost 40 years later, what an achievement this was.

We had hurdles to overcome. In this atmosphere of fear and ignorance, the families of staff and volunteers were very worried and vocal about the risks they felt were being taken. To overcome this and support them we ran training courses for staff, volunteers and their families to try to reassure them. I explained frequently that there was no risk if the usual infection prevention regime was used correctly: gloves and hand washing.

In response to the need for care for an increased number of people, many young, the Terrence Higgins Trust (named after one of the first people in the UK to die of an AIDS-related illness), opened the London Lighthouse in 1988 (closed in 1998). As with the hospice movement, they developed expertise in the particular problems found in this condition. Other centres and wards developed too as there were problems specific to this condition and pooling experience was the best way to develop expertise.

We did not look after a large number of people with AIDS throughout the 80s and 90s. Often it was more appropriate for them to be in acute hospitals to receive intensive treatment for the infections or cancers that developed. Sadly, many people isolated themselves away from family and friends too ashamed to seek help or fled to London to become more anonymous. Our main role was respite care and symptom control but particularly emotional support for themselves and their families. The community team became an important link.

Gradually the AIDS epidemic changed over the years with the availability of drug treatments leading to a normal life expectancy, and the acceptance of varied relationships is making diversity the norm. 

During 60 years since qualifying as a doctor, there have been many changes and incredible advances in medicine. This records just one of them but one well worth remembering.  

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