10 Dec 2010 01:14
Recently, I was asked to lead the response of the British Psychological Society to the Scottish Government’s draft standards of services for people with HIV. The standards were interesting, confusing, and not a particular surprise. Mostly, they were about what the NHS thinks people with HIV need rather than being based on the experiences of having HIV. They also were far from “evidence-based” (excuse the jargon) in that they were primarily about what the NHS thought it might be able to provide and focused on treating the virus more than helping people get well. Really, they don’t seem to know the difference. As such, it is difficult for us to call these standards. 

Still, they did show an interesting nod towards behavioural and social issues. Now, when you realise that HIV is an epidemic caused by behaviour, fed by social inequalities, and affecting people even more than bodies, it’s quite stunning that these standards still reflect the old, physician-centred model of services. An historical perspective is useful here: before 1996, when physicians had very little to offer, the HIV-affected community participated quite deeply in the services, which were about people. There were integrated physical, mental, and social services, albeit still within the rickety NH-framework, but they were very successful given the limit of what could be done at all. Nice of them to share the responsibility. After 1996, when effective drugs came in and made it possible for us to live a lot longer, the NHS as a whole reverted to physician-centred services, with ancillary staff (literally, ‘handmaids’ to physicians). Nice of them to take back control. 

OK, everyone who had survived was deeply burned out and wanted to make the best of the good news. But the subsequent expansion in HIV-infection rates and related illnesses over the last 15 year have shown this reversion to a physician-centred model of practice to be unwise. Now, we have a whole new generation of people with HIV. Surely, patient-centred services are necessary to help people stay and/or get well? It’s not the virus that suffers from chronic illnesses—particularly clinical depression, addictions, other (often sexual) infections, heart disease, diabetes, metabolic and kidney diseases, and cancers—it benefits from them. And, just like HIV, most of those diseases are related to either specific behaviours or their failure. 

The Scottish draft standards brought this into full view. HIV is an infection transmitted by behaviour and—like every other chronic illness—has long-term physical, mental, and social consequences for those of us infected and for the people who support us. So, if publicly-funded medical services are hoping to create health, then they need behavioural medicine to be up there at the front. It’s nothing more than what the scientific literature says, as my own research on this issue for the Tuke Institute shows. But how on earth does one prod a government to raise its eyes from such comfortably low aspirations and look, instead, to serving the public? 

Hmmm…. quite. Hold that thought.  

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.