Your voice in your care

Published 27, Sep, 2016
Author // Alex Sparrowhawk

"All too often decisions are made with little involvement with the people that new arrangements will impact," says U. K. guy, Alex Sparrowhawk

Your voice in your care

A long and busy week – but a really informative and interesting one, especially the last couple of days! On Friday I attended the Second Joint Multidisciplinary Conference of the British HIV Association (BHIVA) and the Royal College of General Practitioners (RCGP), looking at HIV in primary care.

Throughout the day there was a lot of debate about cost, collaboration and communication. I believe the normalisation of HIV can only occur with increased involvement of primary care in HIV testing, care and support, the important ‘but’ of course being that those living with the virus must also be involved in any future decisions about the changes to the care they receive, and where they receive it.

All too often decisions are made with little involvement with the people that new arrangements will impact, or with people who fail to disseminate the information into the wider community of people with HIV. Changes to CD4 monitoring are just one such example in the past year or so. I personally back the decision to monitor people like myself, who are stable and undetectable, less often but this must be communicated clearly.

If changes can come as a shock to those who consider themselves ‘clued up’ then they certainly would to those who are unable, or choose not to, keep up to date with current clinical guidelines. And let’s face it, there are going to be far fewer treatment advocates and clinical guideline ‘geeks’ within the HIV community than those who simply want to trust the system will take care of them.

My personal experiences with primary care in relation to HIV have been varied from the very beginning. Between acquiring the virus and receiving my diagnosis at the sexual health clinic I had visited my GP three times and not once been offered an HIV test.

The closest conversation I had with a GP about HIV was in the final of the three appointments during autumn 2009 when the phrase ‘maybe you have a persistent virus?’ was used. The cogs started turning, the idea I could be at risk entered my mind again and I visited the sexual health clinic. But could they have been explicit and spoken to me about my sexual health? After all I was diagnosed ‘late’, with a CD4 at its lowest point of 213 and I had experienced many of the tell-tale signs of HIV: a flu like illness; fever; a cough that lasted months.

Some months after my diagnosis I was infected with a fungal skin infection, probably picked up from the gym. The GP was insistent they test me for syphilis ‘because I was HIV positive’, even though I had received a negative test result for it just a couple of weeks prior from the sexual health clinic. Eventually a sexual health consultant correctly diagnosed my skin issue, rather than the GP.

It is easy to focus on the negative experiences where we don’t receive the care we deserve. But I have also experienced many benefits to receiving aspects of care via a GP surgery. It is a lot easier for me to receive vaccinations from a nurse in a surgery with a quick appointment to get my yearly flu jab, for example.

I believe GPs are the best people to understand issues and complications that aren’t directly related to HIV. And there are benefits for people, who unlike me, aren’t open about their status. People are often a lot less anxious waiting for their appointment in a GP surgery than they would be in a sexual health or HIV clinic.

The clear message from Friday’s conference was that we are all individuals and there is no one size fits all solution to how our care can be managed. People will have varying opinions depending on their own experiences of primary care, how good they rate their specialised HIV care in secondary care and how comfortable they are in visiting the different venues, and speaking with the different health care professionals and doctors.

HIV is changing, it is a long-term but manageable condition, but there is still a great deal that is unknown. We’re still analysing the impact on the health of the first generation aging with HIV. We are still trying to ascertain how to allow people to live well with comorbidities.

There’s clearly no strategy in place at the moment to introduce any immediate changes, but I hope that people with HIV are involved and have a voice in their care when we start to seriously think about how people with HIV are looked after in future. What’s your view on the enhanced collaboration of HIV care with primary care and the specialised services? I’d be interested to know.

This article previously appeared on Alex's own blog, HIV and Me, here.

About the Author

Alex Sparrowhawk

Alex Sparrowhawk

“For the past five years I have been living with HIV and the last two years of that openly and with no shame. I use my blog to talk about my own personal journey, my opinions and thoughts and to fight for what is right and fair for all People Living with HIV.

Unashamedly an activist, advocate and voice for all things HIV and LGBT awareness and rights related. As my body continues to battle the virus I continue to fight the fear and ignorance that leads to the stigma associated with HIV and AIDS.”

Alex is from Manchester in the UK. His website/blog Alex Sparrowhawk: HIV & Me is here. He is on twitter at @birdy_tweet.