Is 15 minutes enough time to give someone a HIV diagnosis? Steve looks at the importance of a relationship with your HIV team and getting the best care…
What can you do in 15 minutes? Let’s keep it clean boys and girls…
If you’re looking for a suggestion, you could carry out a small DIY project (TJ and I built a flat pack bookcase in 14 minutes recently), go for a run, have a shower, you could make an omelette or a decent fry up, you could do some gardening (we all love to hoe), you could even make seven Pot Noodles one after the other (private fantasy).
‘Why do you care?’ I hear you ask – my reason is simple, this is how long a nurse at St Mary’s hospital in Portsmouth spent telling me that I had HIV.
I remember my diagnosis very clearly, I had been going to St Mary’s for my bloods for a while and was used to the routine of being taken into one of the clinical rooms to be told that everything was clear. It was brisk, efficient and I could be in and out in under five minutes.
On the Tuesday the first of August 2006 however the nurse and I were walking down the corridor to the clinical rooms when we stopped and turned into a smaller room with just two chairs and a desk.
My heart dropped like a stone and I wondered what the outcome would be.
The words the nurse said have stayed with me for ever, to be honest, every aspect of that moment in time is carved into my memory and preserved like a snapshot of someone else’s life. I remember the nurses spiked, short blonde hair, her ice blue eyes and the way her mouth moved as she said “One of your tests has come back positive, it was the HIV test”.
I remember that my mouth moved, though it felt like someone else’s voice. In my head there was no real train of thought, only white noise. I was quite practical and pragmatic, I asked “Ok, what happens next?”, the response came that I would be retested to confirm the result and then monitored, eventually I would need to start meds and when that time came I would then be on medication for the rest of my life.
She then asked if I had any other questions. I remember clearly thinking ‘Oddly enough, yes’, but nothing would come out. There were so many questions in my head, spiralling round and round, building on top of one another that my mind had become a storming vortex of emotion and words had become redundant.
I think she read my face and started to explain some more about HIV treatments and long-term prognosis, which unfortunately just piled more information into an already crowded brain. I weaved in and out of the conversation until she said at last “If you do think of any other questions you can call in.” to which I responded, “Oh, is that it?”
“I’m afraid so, we only get 15 minutes and I’ve got another patient to see now.” and with that, I was sent out into a world that suddenly seemed like a much scarier place and left to get on with it.
I had to walk from the clinic to the station and get the train back home. I was only just 20, I had no one with me and so I walked alone with a storm breaking in my brain.
I had no idea what to do, how to tell people and with no support offered through the clinic my mind took dark turns as I walked.
On reflection, there were several things I would have liked to have happened differently, particularly given that there is still stigma and misconception and a lot of people still think, despite the best efforts of UK charities and education that HIV carries a death sentence.
“15 minutes is nowhere near enough time”
Fundamentally though, I feel that 15 minutes is nowhere near enough time for someone with questions better able to articulate them than I was.
I went back to the clinic regularly for bloods, but my opinion of it was always skewed as ‘the place where it happened’.
Shortly after diagnosis, I moved up to Hereford and, once settled in, moved my HIV care up there too. I was invited in for an initial consultation at the Gaol Street Clinic and there met two women who, ever since, have occupied a very special place in my heart, Ali (the lead nurse) and Catherine, (the consultant).
I don’t know what I expected after my experiences in Portsmouth, but the Gaol Street staff exceeded them in every way.
It felt like the staff had all the time in the world and explained to me, in simple terms what I could expect, they were kind, human and allowed me the time to explain how terrified I was.
Over the next five years we laughed together, the team supported me through starting medication earlier than expected and came to the rescue when my first treatment regime, ATRIPLA nearly killed me.
I wish that everyone could experience the exemplary care that I did in Hereford, that nursing teams could have the time to spend with patients to understand how they feel about their health and their new, unshakeable travelling companion.
If this was possible, it would be so much easier for patients to build a two way relationship with their clinicians which would better enable adherence and understanding. That relationship with the clinicians is so important to the health of people with HIV.
The reality is, however, very different. Nurses are stretched with workloads increasing exponentially, funding is falling away and many sexual health centres are being privatised. We could very soon enjoy the irony of sexual health centres being run by Virgin.
This concerns me primarily because the regular appointments for people with HIV, including bloods, questions about sexual activity and medication need time for a relationship to be established between patient and clinicians, time which is rapidly being eroded.
It’s my belief that nurses are born and not made, I believe that nurses need to be looked after to ensure they can develop this relationship with their patients because then, even the scariest student nurse (I remember one coming at me with a needle like she was harpooning fish in a barrel) can become a great one.
For a long time after moving back down to Hampshire, I kept my HIV care in Hereford. As well as being my last link to the place, it was also down to the fact that the care I had received there was so good.
I was scared to leave because, having been so well looked after, I couldn’t imagine starting that relationship with someone else. They knew my history, they had supported me in starting medication and had shown me such care for nearly 6 years, that the HIV now seemed manageable and far less scary.
I had less trouble and emotional difficulty leaving my ex-husband than my clinical team.
Practical reality however rapidly kicked in and with my kidneys becoming more of a concern and the potential for needing to change my treatment it soon became clear that I needed to move my care back to Hampshire, rather than keeping it removed at a distance of about 130 miles.
Possibly I had been spoiled by the team in Hereford, but the need to move frightened me, I felt the need to find the right kind of care, something that fits with me and my approach to HIV, it needed to be a good fit. I suddenly realised I had become the goldilocks of nursing care. The saving grace was that, as yet there was no sign of the three bears…
Last week I had my intake appointment for a clinic in Basingstoke around the corner from work, I was nervous, yes. But after I got talking with my new consultant, Dr Raja, I found out that she had trained with Catherine, my previous consultant at university in Cardiff, we swapped stories and laughed and I suddenly felt quite safe.
Catherine, Ali, this blog is for you. You are both remarkable women and incredible clinicians. You stand as an example of how HIV care should be done.
I want to thank you for everything you did for me. I will miss you both very deeply and will always remember you as the dream team that saved me over and over again.
Steve – (@steveofthemarch on twitter)