Blogs

02 Feb 2011 06:34

Jon Henley wrote a remarkably generous article on my work and the experience behind it in the Guardian newspaper yesterday, accompanied by photos from Martin Godwin. It was a real pleasure to chat with both of them and I had a great laugh with Martin as he helped me relax in front of the camera. Certain anecdotes about a Hollywood actress and the advice she gave to help you look fresh and engaged in the photos proved invaluable.

It was a little bit of a shock to see the facts as someone else might see them. It reminded me of a time when a patient of mine, in the middle of a successful treatment for suicidal depression, said how glad he was that I was still here to help. When he said that, I felt raw and uncovered as I realised that he had googled me and knew not only I was gay but that I have HIV. I hadn’t even thought that someone might do that. Naive of me, I know. But both then and now, it was disconcerting to see myself and my work from the outside in, not just the ever-present inside looking out. What might look rather good on the outside is just so hard on the inside.

I have had some marvellous emails in support—and only one that said I had wasted my life because I don’t believe in his tradition of medicine (which, ironically, I do). These emails of support are always invaluable to me as it is rather a struggle to feel that I’m getting things to move forward. A recent update to the Advisors to the Tuke Institute reassured me that, despite my misgivings, a lot has actually been achieved. But creating change still lies ahead. That is where the rubber meets the road, as the saying goes.

How many of us have been put to the side of the road when we have not been able to keep up, through illness? Some such people have contacted me, offering their help, and I hope very much that this will be possible; the more people who can help build this Institute, then the better for all of us. Through the article in the Guardian, it has been great to know that this work means so much to people from all over the country. And the people who have been ill themselves really ‘get it’. That’s great. Let’s make this a success.

07 Jan 2011 09:45

Nick Clegg has announced that he is to introduce real changes into England’s libel laws—a long overdue move in the effort to shuck vested interests out of their protective shells and make English society a more equal and open place (http://bit.ly/eeOp5n). Currently, it takes a very brave person to speak up and risk a libel suit—and there are very few of us who can afford that. Yet it’s very important for the public to be able to speak up and say when a particular individual is not doing their job—especially when that job is in public services and paid for by the public.

It may be a good step towards making the English public, at least, far less timid about speaking up and telling it as they see it. I don’t care for unnecessary confrontation, but coming back to Britain after so many years in the USA showed me that people here are afraid to speak up. Criticism is indirect, ‘diplomatic’, or avoidant and all too often ineffectual. Little changes until people are pushed to unnecessary extremes to be heard and then we get shouting in the clinics—whereupon the complainant is ejected and everything continues badly as before. It is simply oppressive. Whistleblowing is punished, even when it is killing people—we only need to look back at the Bristol Inquiry and the current Stafford Inquiry to see that.

A while ago, I mooted the idea of a well-structured, scientifically based review-website to assess the quality of clinicians’ performance in helping people get well during treatment for an illness. It would show how health-effective a clinician’s practice is and it is more accurate and proactive than simply making a body-count of the dead as we do now. This idea effectively was shut down because I was told “we can’t say that Dr. X has been ineffectual publicly, because it will cause a libel suit”—and this is when Dr. X has been paid by public taxes to provide a service to the public in order to help the public get well from illness. This reality is one of the reasons why clinicians have been untouchable and have had no greater motivation than their own integrity to do a good job. When a clinician has integrity—and we know many who have—she does her best to make sure she is doing a good job; but I also know many clinicians who really can’t be bothered, who see themselves as the victims of a difficult system and weep all the way to the bank as they cash their annual salary of £150,000. Furthermore, what is a good job to a surgeon can be quite different from what it is to a patient: “the surgery was successful but the patient died”. The patient might have reviewed the adequacy of the surgeon’s performance as other than ‘successful’ if he’d lived.

If the NHS or any medical system is to become patient-centred, it has to mean making medical services about helping people become well long-term. How each clinician does that needs to be reviewed publicly. But it’s not a case of using the ludicrous 5-star system of recent times or the current fad for measuring ‘patient satisfaction’; it needs to be a thorough system that looks at all the variables that go into helping people get well. I’ve researched this for a number of years and it’s a complex, scientific issue. It can be done and the public has an essential role in such a review. We need to be able to say it publicly when things are less than adequate, without fear of a lawsuit for libel. Nick Clegg’s initiative is a very, very welcome step in the right direction. Let’s hope he succeeds.

28 Dec 2010 10:02
Every month or so I get a copy of Buddhadharma, a magazine that re-connects me with my spiritual values and helps me both feel good and refocus on doing something positive for society. This week it is a reminder of the spirit of Christmas and a refreshing source of support in the times when the Tuke Institute’s challenges form a seemingly impassable mountain. The current edition is about the historical oppression of women within Buddhism and how things have started to change since Buddhism developed a foothold in the West. This has allowed a less polluted form of religious practice to emerge from the tension between spiritual integrity and religious tradition, often returning to a more authentic spiritual practice that existed before religious ‘professionals’ and their vested interests developed.
It reminded me of the same problems in medicine between the professionalisation of Western male physicians, where they became the sole owners of the concept of medicine, and the fact that, for many thousands of years, medicine was defined instead by the needs of the ill person. It is no co-incidence that women were kept out of both religion and modern medicine for so long and that, in medicine, it took some strong women to re-introduce basic humanity into its practice, even though they had to call it by a different name: ‘nursing’. But as nursing became professionalised (though still subordinate to male medicine), it too became heartless: one only has to read Denton Welch’s “A Voice Through A Cloud” to remember what it used to be like with fierce and unkind nurses. While nursing has always been the most forward-looking of the medical professions and is far more in line today with what people need and require, medicine in all its forms struggles to remain humane as it becomes increasingly professionalised and distant from the reality of illness. Humane medicine is civilising and empathetic, it relates to the experience of illness, and thereby finds out what a particular person needs in order to get well. Inhumane medicine makes you sick, in all senses of the phrase. 


The balkanisation of medicine into ‘medicine proper’ (i.e., what Western physicians provide) and ‘ancillary’ services, such as nursing, is still one of the greatest failings of modern medicine; it is also one of the biggest obstacles to focusing effectively on the needs of the ill. As a person with chronic illness myself, I define ‘medicine’ as whatever I need to get and remain well, and this is sometimes quite distinct from anything the most caring physician can provide. It is a pity that such a simple truth has been marginalised by the vested interests of providers, interests that are so woven into the fabric of society that it takes ‘outsiders’ to show where the problems lie; ‘insiders’ can’t see it themselves, because they have no alternative perspective until they become so sick themselves they have to question what they know. The very fact that the ill are considered ‘outsiders’ in medicine identifies the core problem and if there is one over-arching rationale for the participation of ‘outsiders’ in medicine, it is to help ‘insiders’ remember their purpose. Otherwise, we get bureaucratic bean-counters causing multiple deaths (as at Stafford Hospital) or narcissistic clinicians causing multiple deaths (as at Bristol). Both have forgotten why they are there.

Over recent years, I have felt an increasing need to bridge this divide between providers and their purpose (patients)—not least because of the dreadful and inhumane ‘care’ I suffered myself as a patient in the NHS. It is the reason why I focused on getting other people like me—clinicians, scientists, and other providers who also have chronic illnesses themselves—to help find a way to bridge that divide through the work of the Tuke Institute; after all, we have to do this every day in our own lives and it helps us to not forget why we do what we do. Bridging this divide requires the active participation of patients, something that is already forcing medicine to change, but medical providers are fiercely resisting that change, protecting their turf from ‘outsiders’—often in the name of professionalism. Again, they have forgotten why their professions exist in the first place. Medical professionals need ‘outsiders’ to remember why they are there and, just as women have helped Buddhism regain its authentic spiritual values in religious practice, so patients can help medicine regain its authentic humane values in professional practice. Only a medical  professionalism imbued with a real understanding of illness will be able to help the ill get fully well. 

16 Dec 2010 09:40

There has been a recent report of a man cured of HIV infection. I do hope it’s true but, having seen the ups and downs of the decades of this pandemic and knowing the biology of the disease, I sincerely doubt it.

The article appeared in the scientific journal Blood (http://bit.ly/icF40a); the report is not available to the public despite the fact that the research was funded by public money. However, it’s worth tracking down the report and the previous ones to which it refers (http://bit.ly/g9QwfU – in the New England Journal of Medicine—full text publicly available). In this report, a man was transplanted with stem cells following treatment for acute myeloid leukaemia—treatment for which included destroying his native immune system and bone marrow cells (where HIV lives). This outcome took several treatment attempts of chemotherapy and ‘ablation’ therapy until it was successful. The stem-cell transplant took hold and several years later, the man still has no detectable HIV in his blood-stream.

Nice. But there’s a wrinkle. There are a couple of highly separated compartments in the body, one of which is the brain. In order for HIV to get into the brain in the first case, it needs to be actively transported there; it can’t get there itself unless there’s a tear in what’s called the blood-brain barrier. The blood-brain barrier is normally very difficult to cross and only specialist cells can do it. Of the few cells that can cross this barrier (using a set of molecular keys) is one of the monocyte-macrophage type—which happens to be one that HIV infects and uses to piggy-back across that barrier into the brain. This is how we get HIV-associated cognitive disorders and ‘dementia’. Having studied HIV-dementia and having grown bits of brain with HIV in the lab many years ago, it’s an area of particular interest to me. Having HIV in my own brain makes it of even greater interest.

A significant proportion of people with HIV have the virus in the brain. This man may well have had it too—and still have it; he may be the only one who has it in the brain and not the rest of the body. He may stay HIV-negative (by blood-test) for the rest of his life yet still come down in due course with HIV-dementia. Or, of course, the virus may find a way to get back into the rest of the body too in due course.

All in all, this is an interesting and extremely important case-report—but it’s not evidence of a ‘cure’.  I do wish people—especially non-scientists such as these physicians on this team—would be very, very careful about using that term. And I wish groups like the AIDS Policy Project would be more circumspect and less political in their awards (http://bit.ly/etmf1w). It doesn’t help those of us who are actually living with the reality of the disease.

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.