John, aged 61, Surrey

Getting the best from relationships with my healthcare team

"I have known about my HIV status for 17 years now. But, having heard about hardships my friends living with HIV faced, I decided I needed to educate myself about my long-term conditions and medications. I wanted to understand how to keep well and live a full life.

I have learned so much about my medication and potential interactions with my HIV treatment, which is important because there is a void of knowledge outside specialist areas. I have the greatest admiration for the specialist pharmacists and my HIV consultant has been brilliant, providing me with great reassurance. My HIV clinic has a fantastic team.

At an early stage, I gave permission for my HIV consultant to write to my GP. I am delighted I did as my GP team is also great – but this did take some education from me. When I joined a big local practice, the nurse asked me if I had any health conditions and I informed her I was living with HIV and hepatitis C. Once I had picked her up off the floor she said to me “Well you look fit and well today so I think you should make an appointment to see the GP soon so he can see you whilst you’re well and not when you’re ill.” This interaction made me realise the importance of breaking through the stigma.

When I saw my GP for the first time, what should have been a 10-minute appointment turned into a 45-minute coaching session where I educated him about HIV and hepatitis C. But it was valuable time spent and was the start of a great GP/patient relationship.

I may have other conditions to manage, but I still exercise and socialise. I don’t particularly like being described as a patient. However, I recently was introduced by my HIV pharmacist as an ‘expert patient’ and that felt good. As an expert patient I embrace my own health and wellbeing. I focus on building strong relationships with my consultants, pharmacists and GP. I call it taking a pro-active approach to health and wellbeing.

My journey hasn’t been straightforward, but I have been determined to embrace any challenges that come my way. Finding a friend with whom I can speak has helped me focus on the journey, rather than worry about the past. HIV has made me more fearless. I have already lived longer than I was expecting. In addition to HIV, I have been cured of cancer and cleared hepatitis C. Now, I am ready to face anything else that is thrown my way.”

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