The 15-minute test that could save your life

NEIL VOWLES reports on the stigma that still holds back so many and speaks to three medical staff living with HIV about how diagnosis has affected their lives.

People living with HIV in Brighton and Hove still face discrimination from employers, colleagues and friends 30 years after the virus first rose to prominence.

The Terence Higgins Trust hopes that this week’s National HIV Testing Week will help raise awareness and tackle stigma around the virus.

Local organisations including Brighton and Hove City Council will sign a HIV Stigma Statement prepared by the trust today.

The statement will say that everyone can play a role in tackling HIV stigma by learning the facts about HIV and recognising that people living with HIV have equal rights and should not be defined by their HIV status.

Medical staff working in Sussex and living with HIV have revealed in their candid accounts of experiencing first hand fellow health care professionals showing discriminative attitudes towards HIV patients.

Marc Tweed, centre manager at the Terence Higgins Trust Brighton, said: “There is a great deal of stigma that people can experience in the workplace.

“Maybe their employer discriminates against them for having HIV or maybe friends, colleagues and neighbours – people can be quite unkind.

“HIV is covered by the Disability Discrimination Act but some employers aren’t very good at dealing sensitively with information.

‘Improving’ “We have examples of employers who had access to confidential information telling other members of staff that a colleague was HIV positive and saying unkind things about them.”

Mr Tweed said there was “an improving picture” with the work of many organisations helping to improve understanding.

He said the trust worked with young people to increase their understanding around HIV as well as working with social services and care homes to spread information and tackle “outdated assumptions”.

He said: “We hope that stigma will be removed, it is something we aspire to do.”

The prevalence of HIV continues to rise in Brighton and Hove and remains the highest anywhere in the country outside London.

Most recent figures released this month show that almost one in every 125 people living in the city aged 15 to 59 has HIV.

But in addition to those 1,487 residents, it is estimated that another 300 people are living with HIV and do not know it.

Mr Tweed said: “One of the aims of this week is to encourage people to come forward who might have put themselves in a position of risk of contracting HIV and particularly people who have never taken a test before.”

To mark the week, a free and rapid 15-minute HIV test is being made available to people at a number of medical sites around Brighton and Hove as well as at the city’s universities.

Results are available 15 minutes after the finger-prick blood test and anyone who tests positive is referred quickly to a specialist clinic.

Publicity Special focus will fall on the groups within society with the highest reported incidences of HIV - namely gay men and African people.

The campaign has had its highest publicity this year in its three year history with posters appearing all over Brighton and Hove.

Early take up of the tests has been positive in the city with a “steady stream” of residents getting tested.

Mr Tweed said that some people might be reluctant to get tested because they are worried about the consequences of a positive test result, concerns about the stigma attached to the virus and concerns about confidentially and who to tell if their worst fears are realised.

He recommended that residents should get checked annually or when they believe they may have put themselves at risk of infection.

He said: “Some people may not come and get tested this week but may come next week or the week after.

“How many people we test this week is not so important as getting that message across and that people eventually do get tested.”

A Brighton and Hove City Council spokesman said: “Early diagnosis of HIV is important. People are more likely to do better if they start HIV treatment before their immune system is too damaged.

“Being aware can also help reduce onwards transmission.”

Tom Scanlon, Brighton and Hove City Council’s director of public health, said: “HIV Testing Week highlights the importance of safer sex and taking practical action to avoid this preventable disease.

“With more than a fifth of people living with HIV being unaware they are HIV positive, it is vital everyone finds out about how to reduce the risks of contracting HIV and many other sexually transmitted diseases.

“While recognising the constructive way in which people living with HIV face the challenges of this life changing disease, we would like to see a reduction in the numbers of new instances in the future for the benefit of all.”

Living with HIV for 20 years

• I was diagnosed HIV+ through a blood test done by my GP who I had visited due to fatigue and loss of appetite.

I was very surprised when I got the diagnosis as I thought I was in a monogamous relationship and he was the first person I had ever had unsafe sex with and secondly as the GP phoned me at work to tell me.

This was just over 20 years ago now, originally I carried on working but was burning the candle at both ends and it was not long before I was signed off sick.

Six years ago I had an epiphany and decided not to be a victim of my circumstances anymore and I started to get my health back on track so I could get back to work.

My first job was as a health care assistant in Worthing Hospital, not only had I managed to get myself back to work but I also had found a job that I loved.

As far as my HIV status was concerned apart from the ward manager and a couple of people who I became good friends with I never disclosed my status to anyone else, mainly as I never felt that comfortable with most of the staff.

I then managed to get a job in the cardiac ward at the Royal Sussex County Hospital and again only a couple of people knew my status mainly because I had heard a couple of nurses not being very understanding of one of the patients who was HIV+ .

I soon started to look for another ward to work on, this is when I got a job on the then HIV ward, not only did I feel comfortable sharing my status but felt I could help the patients more with my knowledge and experience.

Now after some work in sexual health doing HIV screening I now am working within the diabetic team and to be honest I do not feel I have to hide my status or disclose it, as I am completely comfortable just being me.

Working within the Royal Sussex has been so good for me, I have seen the bad and the good, and I have felt uncomfortable about hiding my status but not now.

I work hard and am good with patients showing all I come across respect and dignity and all I ask in return is that I get the same treatment.

Nurse Philip Hale – in full-time work and ‘doing great’

• My decision to be open about my HIV status at work was not one I made easily, I thought long and hard before deciding that being open was the best plan for me.

I currently work as a Band 7 Night Clinical Lead in West Sussex. I was diagnosed in May of this year when I contracted a pneumococcus double pneumonia and was seriously ill.

My CD4 count [white blood cells] was 11 and my viral load [indicating severity of an active viral infection] was at 2.3 million which in layman’s terms means it was very nearly game over. After being told I was positive I cried, felt sorry for myself for a few days but then decided very quickly to dust myself off and get on with things.

This somewhat stoic attitude I owe to my father, an ex-Army major who has always instilled in myself and my siblings to never wallow in self-pity.

As soon as I returned to work in August I immediately informed my line manager and then all the ward managers whom I work with and have contact with on a regular basis.

Their response was more than I could have hoped for, they all know me very well and knew that once I had returned to work it would be minimal fuss and business as usual.

It is a great comfort to know that I have their support if and when I ever need it.

Also from a practical perspective they are able to alert me to any situations that may put me at risk, ie patients with C-Diff, TB or shingles which while my immune system is still knitting itself together are potentially perilous for me right now.

I’ve never been comfortable with not being open and honest and therefore not disclosing my HIV status was never really an option for me.

I understand that for many people opening up about their status in the work place is something that they don’t feel able to do and that is absolutely right for them.

They may be worried about not being accepted or being on the receiving end of negative reactions.

I think particularly in health care being open is potentially more daunting than many other professions simply by the very nature of the clinical job we do.

Living and working “very happily” with HIV as a staff nurse

• As a student nurse, I was lucky enough to have a placement within my local GUM/HIV clinic, where I gained valuable insight into diagnosis, treatments and prevention of STIs and HIV.

I realise I also gained enough knowledge to know that HIV would never be a condition that would affect me.

I qualified as a staff nurse not long after, and I was very good at practising what I preached and on the occasions where I was perhaps not so careful I would risk-assess that situation – and make an educated judgement on my likeliness of contracting anything undesirable. After all, I had worked in this area, understood the risks, and believed my chances of contracting HIV were always negligible through careful risk assessment.

A couple of years later, I became very sick which was diagnosed as glandular fever by my GP.

I remembered at this point from my time spent as a student in GUM/HIV – that glandular fever was a common misdiagnosis for HIV sero-conversion illness.

It took me a further two months before I had an HIV test because I believed that I was just being paranoid, that obviously my GP would know best and the fear of actually hearing the words “You are HIV positive” were becoming all too real. When I received a phone call with a HIV positive diagnosis, I felt like this was the end of the world for me. I thought my career would be over, life would never be the same, and that if HIV didn’t kill me off the embarrassment of having to return to the clinic would.

Everybody deals with a diagnosis in different ways.

For me I kept it safe in a little box which I put on the shelf thinking at some point in the future when I was ready, I would open the box and deal with it then. I continued working as a nurse, and I would hear other health care professionals talking about HIV positive patients, sometimes in a negative light; with comments like “oh they‘re clearly a pillar of society”, and not long after I had qualified a nurse mouthing to me “make sure you wear apron and gloves before talking to them, you’re HIV positive”.

This made me feel ashamed of myself, embarrassed and at an all-time low.

It also made me more determined to hide my status, and I lost my confidence as a nurse. Many months later, I opened the little box – and I told some of my close friends and colleagues that I was HIV positive and the response was overwhelming.

Rather than feeling judged and ashamed, I felt supported and respected. I would most certainly have done this much earlier if I had known this would be the response I got.

My career took a change in direction at this point, and I decided to work in the specialist area of HIV and GUM.

I was determined to take this negative event in my life and turn it into a positive and use my experiences to help others.

It’s very easy for us to give advice based on the medical expertise we know and it’s easy to tell others what they should be doing but I can speak from personal experience.

If I can use my experiences to change the attitudes and outcome of even just one person then I will have made a real difference.

For more information on locations and times for tests see www.tht.org.uk