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‘I’ve seen a great shift in HIV care’

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Marilyn Wilson has had a huge impact on patients and staff during her career in HIV nursing, according to Louise Tweddell

IN 1988 Marilyn Wilson entered a specialty that was to offer her unique challenges and rewards over the next 19 years and was to transform her career – HIV nursing.

‘The patients tried to fight it as much as they could but we just did not have the medication to be able to help them,’ she recalls. ‘In my head was an image of an old desk with lots of little drawers. As they died, I’d put each patient into one of the little drawers and go back one at a time when I was ready to think about them without them all overwhelming me at once.’

In Marilyn’s 40 years of nursing, the ward sister has seen more than her fair share of suffering and tragedy. ‘When I first started in nursing, working with HIV positive patients was a sad job. I was going to two or three funerals a week, patients had to take a cocktail of pills three times a day and there seemed to be no hope,’ she says.

Something of a maverick, Marilyn was determined to help her patients. If a patient was dying, she would bring two beds together in a side room of the unit to allow the patient and their partner to spend their final hours together.

‘Some people thought it was outrageous,’ she says, ‘but I have never played by the rules. I’m not really a rebel. I have just always wanted what is best for the patient.’

In the 1980s, the stigma of HIV had begun to spread and, working on a unit where at any one time at least five beds were occupied by patients with HIV, nurses were used to a cagey, sometimes hostile attitude.

‘My family never had a problem with it – they trusted me not to put them at risk. However, friends were wary and ambulance drivers would come to the unit wearing suits and masks. It took a lot of sorting out but eventually they realised we were not lepers.’

Marilyn’s initial interest in infection control began in 1977 when she spent six years in Woking as a general nurse on an infection control unit with patients in isolation.

‘I was stimulated and interested to be dealing with a whole range of infectious diseases from gastrointestinal problems to malaria to meningitis,’ she says.

‘It was at the beginning of the time when people started to have holidays further afield. It was interesting to have infections coming in from what were considered to be tropical places 40 years ago,’ she adds.

Marilyn continued happily in her role until 1983 when she resigned to recover from a hysterectomy but, only eight weeks later, she began to train as a district nurse.

During her training, Marilyn remembers a talk on HIV that reignited her interest in infection and disease. ‘It was very early days in HIV and it struck me that this was a really exciting area to work in,’ she says.

In 1988 Marilyn and her family decided to move to Leicester, where she took the position of sister on a 12-bed infectious disease unit at Groby Road Hospital, now known as Glenfield Hospital.

‘Finally, I was working in the area which I had always dreamt of. I’d been interested in infection for so long,’ she says.

Marilyn’s drive to provide the highest level of care saw her fly to San Francisco in 1990 to see how a predominantly gay area of the state was dealing with HIV.

‘It was eye-opening. It taught me to encourage patients to be themselves and not to be inhibited by the fact that they would sometimes be seen as different. A lot of strength came with that,’ she reflects.

A year later, Marilyn’s unit moved to Leicester Royal Infirmary. The move was met with concern from those at the hospital but, by running educational programmes, Marilyn tackled the fear around the unit.

‘It took a long time to persuade people that those infections were not going to run rampant through the wards. Slowly but surely, the respect for our work grew.’

Marilyn then set to work on a business proposal to remodel the unit. The proposal was turned down five times until 2003 when she was granted £1.8m to create a unit with 10 en-suite side rooms. She believes her role as sister allowed her to do all this.

‘People are really focused on the modern matron but ward sisters are the ones who have the trust of the patients, the team and the consultants. If a sister was encouraged to be a good team leader, you would not have some of the problems you have now in some wards,’ she says.

‘Other nurses would never come on to my ward and see my team demoralised despite what sort of time they were having,’ she adds. ‘If they were having a bad day, I would encourage them to go into my office to get it out of their system and then get back out there doing a professional job. Letting off steam is fine as long as you do it at the right time and in the right place.’

Professor of infectious diseases Karl Nicholson, who appointed Marilyn to the role in Leicester, has nothing but praise for her achievements.

‘Appointing Marilyn was entirely the right decision. She is irreplaceable and a real credit to the trust,’ he enthuses.

‘Marilyn has always been a role model to aspiring nurses and she will continue to be so, even in her absence.’

Former patient Colin Norman fully agrees. ‘To me Marilyn is the most wonderful person you could ask to meet in hospital. She has a way of putting you at ease that
is rare and is a very special lady indeed,’

he says.
‘There are so many patients and relatives who are grateful for the help that she has given. Without her, time in the hospital would have been even more difficult.’

Marilyn modestly accepts this praise and says she is just glad to have seen so many changes. ‘Now treatment is so sophisticated that people can live practically normal lives, have babies and live to an old age,’ she says. ‘It has been an incredible transition to see.’



When Marilyn Wilson started in HIV nursing 20 years ago, it was very much a male-dominated illness, the highest number of cases being diagnosed in the homosexual communities. Very few medications were available and even those that were commonly used, such as AZT, were limited in effectiveness.

Back then, when a patient became critically unwell, it was unlikely that they would be accepted into a critical care unit because chances of survival were so low.

HIV infection rates in the UK plateaued in the late 1990s, but there has been a significant upturn in incidence of the disease since then. In the past 15 years, the number of heterosexually acquired HIV infections diagnosed in the UK has risen significantly.

The medications available to HIV patients have dramatically improved and increased. With life expectancy now much higher, problems such as encephalitis, TB and pneumocystis can be aggressively treated.

Far fewer patients with HIV infection now die prematurely but infection rates are increasing due to many young people having unprotected sex.


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