19 Nov 2010 03:52
I’ve been prompted (read; prodded with sharp sticks) to start blogging, which is only slightly less dangerous to society than my writing a memoir. The idea of it is to talk about the things that I’m interested in and the work that I’m involved in, namely: HIV, medicine, and social justice. 
My interest has always been HIV disease, since the first time in 1981 when I fell inexplicably ill. At that time, my Hamburg physician said “It’s sumsing viz your vite blut cells but not zat kissing illness”. Then my boyfriend, Terry Higgins, died from the same sort of thing. Having started up the Terrence Higgins Trust with an ever-changing group of others (notably Martyn Butler and Tony Whitehead), I decided I needed to become as expert as I could about the illness. There followed 14 years of training in psychiatry, neurology, and immunology at the end of which, to my disbelief, I was still alive. I was then a doctor in those fields, a scientist and clinician, and still very much a person with HIV. Shortly after that, I was diagnosed with AIDS and I had a stroke—the latter due to an inborn error in a brain-vessel and utterly unrelated to my having HIV—followed by brain-surgery, which then caused epilepsy. Following a number of years of rehabilitation, I’ve tried to stop collecting diseases since then. 
It is almost thirty years since that first HIV-related illness and I have also lived in five countries, which has been an experience of contrasts as a patient, a clinician, and a scientist. Over this time, I’ve seen a huge number of things change in medicine—and a great deal that hasn’t. Most of the latter I can ascribe to either one of two things: a lack of awareness of what ill people need to get and stay well or, too often, self-centredness in those providing the services. 
It is not easy knowing as much about your illness as your clinician and this fact separates the men from the boys when it comes to competent treatment. There are times that I’ve had to struggle to assert the validity of my illness-experience in the face of denial by providers and, while the evidence later showed me to be right, it was at great cost to me. I’ve learned a lot from these instances but the saddest thing is that, most often, the clinicians learned nothing and moved on to do exactly the same to someone else. Many community-based services, too, have ossified and become as self-serving as public-sector services. 
So this blog is not going to be about me as such but about how I see things from my multiple perspectives. There is a lot of rhetoric today about ‘patient experience’, illness-narratives, public participation, etc, and there is some great research being done—but little gets into policy and even less creates any useful change in services. I’ve started up another organisation to try and change that too (the Tuke Institute). It’s still in its early days, but there’s one thing that I have not often lost in these past thirty years: hope.