A message to future health-activists on World AIDS Day 2013. [This is a mirrored article which was originally published in December 2013]

The recently launched film “How to Survive A Plague” shows us some of the story of HIV-activism in the USA in the 80s and 90s, through the lens of ACT-UP and the Treatment Action Group (TAG). It’s a remarkable and unprecedented story of guts, anguish, and loss. I’ve lectured at a few universities on the history of failures and successes in the response to HIV, providing my own perspective to the pandemic that started with setting up Europe’s first HIV-charity, the Terrence Higgins Trust, followed by my going on to become a clinician-scientist specialising in HIV myself, and eventually founding the Tuke Institute. Thirty-two years with HIV myself gives me some perspective to speak from.

The original, American groups of ACT-UP sought to create responsiveness in the US government to address the pandemic; among other things, they realised that treatment was necessary and that there was none. We had never had a lethal, human, retroviral disease before and we had absolutely nothing in terms of biotechnologies to address it. Today we do, and the path from there to here was paved by groups like ACT-UP and TAG. It showed what committed — and desperate — members of the public can do to create change through participative science and policy-making, especially when most decision-makers just don’t want to know.

I saw the film in a dark basement bar in mid-November, at a meeting organised by Dan Glass and friends at The Glass is Half Full. The guest of honour was Peter Staley, a central figure in this history and in the film itself, who discussed the film and helped create a discussion around what health-activism in HIV might look like in the future. What or who should be targeted for activist intervention and why? It’s clear that activist intervention is necessary today, when we have these miraculous biotechnologies and yet they’re not delivering on the promise — there a miracle that failed to save the life of treatment-activist Spencer Cox, for example, because pills-only health-services aren’t anywhere near adequate. We know this, but it seems that most clinicians and scientists don’t and neither do the pharmaceutical companies that provide the biotechnologies. Sounds familiar? So, can there be another wave of activism and, if so, what should the newer generations of activists be aware of?

In the screening-room, there were a number of people, including myself, who had been activists “a while ago”. Grey hair was fairly common among us — at least in those of us who have any hair. We still want to make change, but our approaches are different now. It was interesting to think what we were all doing now: scientist, journalist, community-services’ manager, historian, film-maker. Happily, we still respect street-activism for what it forces attention towards; without it, complacency would have free rein as it did in the earliest days. Activism is what gets a self-satisfied ass to move on, and there are far too many such asses around, particularly in health-services and non-profits that used to be community-based. But for us grey-hairs, activism has mellowed to something else. We’re not extremists, radicals, or zealots by any means. In fact, in our eyes, we never were. But we were certainly protestors and we still protest, if today we advocate through different means. What a few of the wider group of us have forgotten, in our quest for comfort, acceptance, and career, is that street-activism is still — and always will be — essential to help us focus on our goals for progress. It’s also helpful for us to remember that advocacy is not limited to progressive activists. For example, it would be equally reasonable to see much of what the British Medical Association promotes in terms of physician-centred health-services as ‘activist’ — that is, radical (conservatism), militant (elitism), and zealous (self-service) since the physician-centred model it proposes was outdated in 1970. To agitate for it now certainly meets the criteria for ‘activism’, albeit a radically regressivist one.

Sitting through the film, I was reminded bittersweetly of times and places I’d not have remembered otherwise. I went to some ACT-UP meetings when in New York, took part in demonstrations, and always admired (and was rather afraid of) ACT-UP’s brassiness. It spoke up with courage. The film also showed footage from the March on Washington, which I attended, and from International AIDS Conferences in Montreal and San Francisco, where I presented the first public health research on the futility of the HIV-immigration and travel-bans — and its lack of ethics. That led later to a tense Jim Lehrer Newshour segment with myself as an HIV-positive immigrant, the regressivist Senator Dannemeyer, a redneck physician from Arkansas (what on earth does a clinician know about public health?), and the supportive US Assistant Secretary for Health, Philip Lee. It’s worth remembering that the only reason it was even on national prime-time TV was because of the efforts of groups like ACT-UP insisting on awareness of the issues. From these and other experiences, it’s clear that more experienced advocates need to share their knowledge and skills with newer generations, not just around HIV and not just within one country, but around health-activism generally and internationally. Russia’s and Ukraine’s current problems around both HIV and equal rights are an HIV-redux, even as their soaring epidemics are driven largely by injective drug-use.

In that spirit, I have some words of possible advice to newer advocates and activists; perhaps some of them might be useful.

Firstly, be clear about: what your goals are and why; what the most efficient ways are to achieve them; what the key methods of leverage are to create systemic change; what the key points of political leverage are (which nerves are live and which are dead); what the needs and weaknesses of your targets are (is it brand-profile, self-image, or share-holders?) and how you can speak to their issues while aiming to focus their attention on yours; which are the most efficient and effective ways to create attention and pressure; which alliances you think you need most and why; who you can rely on, those who will never become allies, and who are those somewhere in-between; which issues are superficial or short-term issues (albeit important ones) and which are deeper, structural issues that need to change; how the current, very stable system will adapt to neutralise the change you wish to bring, and how you can best prevent that; and how you will translate short-term change into long-term change. That last is one we’ve never been good at.

In the fray, be aware and protect your biggest assets, which are integrity, transparency, authenticity, courage, cohesion, creativity, an acting on social values, ethical independence, a willingness to learn, and a lack of shame — which is quite different from a lack of introspection or insight, both of which are essential. Without protecting these assets, you become useless and pointless, if not destructive.

Be strategic about how to create your impact: avoid scattershot actions and also have a clear approach to stepped escalation. There’s little point in putting unnecessary pressure on targets if it’s possible to create change and alliances with less effort and conflict; it also helps sustain future co-operation. The other part of the balance required here is not to be co-opted by the dominant perspective simply because you’ve been allowed ‘inside’ and feel comfortable now. Your independence and autonomy are key to progress and to your integrity. A careful balance is possible.

Be clear on your methods, have multiple and varied methods, and make them work with others’ methods in order to punch above your weight. Don’t get stale and don’t allow targets to become numb to your interventions. The most effective tool of the street-activist is political embarrassment, which creates motivation for decision-makers to do something differently. But it can’t be through empty stunts; you also have to make your case evidentially — and the more strongly you can do that, the greater your effectiveness. This was one of the keys to the success of TAG in tandem with ACT-UP.

Join up with socially-aware scholars and academics because, today, things are so much more complex than they were 30 years ago. You need more sophisticated knowledge, methods, and skills. A few scholars and academics want to be engaged in creating change. You need to find those who do and who can translate their specialist knowledge into well-communicated and expert messages, delivered with the impact of street-activism where necessary. You need to make your case with impact, not just make an impact. Part of that means that you also have to demonstrate solutions, often provided through translating social, behavioural, and biological science into applied policy, supported by the motivation that street-activism provides to complacent decision-makers. This is where TAG showed its strengths: it led the way towards new types of clinical trials, community-based and ‘guerilla’ trials, and new biotechnologies that have helped to prevent millions of people from dying. Finding solutions needs the knowledge-base of scholars and the creativity of activists together.

Be clear about what you do when you are successful, even in little ways. The immense success in eventually getting effective medications to patients seemed to have stunned treatment-activist groups. They have had an essential and crucial focus that became unmoored from the larger picture of health-services; success left most treatment-activists without a goal and they then made poor new priorities in line with their self-image rather than in line with the next level of needs of the people they had been trying to help. A very human failing that we can learn from and avoid in the future. We should debate such questions as “Is advocacy for a cure for AIDS more important than advocacy for ensuring health-services help people get well and stay well in a way that can translate to other chronic conditions? Which would have far greater impact on patients and on society?”. It’s probably obvious that I think the advocacy for an AIDS-cure, although glitzy and sexy, has missed the point.

So, don’t lose sight of how your issue relates to a larger picture. This will help in developing alliances, in creating cogent arguments that are more generally applicable, and will also help in devising solutions. This is a key problem of HIV-activism to date, which has failed to see that pharmaceuticals are neither a solution to problems of clinical illness (other than preventing someone from dying) or to wider social, mental, and behavioural determinants of transmission, illness, and recovery. This is a crucial focus of activism in the future and it joins up well with the movement towards re-designing national health-services, especially for chronic conditions. HIV-activists have something to give and to benefit from through creating such alliances, as argued in a related piece.

Finally, I have to laugh when I say: be careful about accepting input from older activists and advocates. While we can share our longer experience, a usually wider perspective, sometimes greater clarity, and some essential knowledge and skills, there are a number of pitfalls when working with us. We don’t have the ‘oomph’ that younger advocates have (and we don’t like to admit it); we can also show outdated and ossified political ideologies, reduced relevance to the situation of younger people (and yet increased relevance to the situation of older people!), a smugness or patronising complacency, and a reduced ability to learn. In short, we’re older. We can be both a lesson and a warning, and we don’t like to think of the latter. While we do have a place and a role in framing future goals and road-maps, the real progress will now be driven by you. Do it well.

I hope that helps.

Should these statistics make us concerned about what’s happening with HIV in the UK?

Should these statistics make us concerned about what’s happening with HIV in the UK?

Should these statistics make us concerned about what’s happening with HIV in the UK?

Should these statistics make us concerned about what’s happening with HIV in the UK?


This blog-post is a mirror of the page at www.tukeinstitute.org/ihse in order to facilitate comments.

Title: Index of Health-Services’ Effectiveness (IHSE) in HIV: Discussion-document

Date: 2013.01.10 (ISO 8601)

Version: 1.2

Author: Rupert Whitaker

This document is presented for the purposes of comment and feedback. Due to a failure of the WP commenting system at the moment, please provide comments via the Contact Us (www.tukeinstitute.org/contact-us) page. We would be grateful for feedback on questions such as:

  • what could be better in this Index and how?
  • what should be removed and why?
  • is this a good/helpful/necessary idea?
  • how should this be promoted?
  • which organisations should promote the use of this Index, if any?
  • etc


An index of the health-effectiveness of services is proposed as a measure of the degree to which such services are effective in helping people maintain or resume a normal, healthy, daily life. This is a universally relevant Index but we are looking to pilot it in the area of HIV, one of the chronic conditions most obviously influenced by a complex interaction of physical, mental, behavioural, and social issues. If HIV is not your field of interest, please consider it in the light of other chronic conditions.

Most health-services for HIV focus currently on treatment of the virus, where treatment-success is measured in terms of the amount of virus detectable in the blood and whether the T-cell count is within a normal range; assessment of illness is limited and primarily focused on bodily signs. Research shows that this approach is insufficient to ensure that people with HIV are able to lead full, healthy lives; people with undetectable viral load and ‘normal’ levels of T cells can still be unnecessarily ill, due to the interaction of complex physical, mental, and social — or “biopsychosocial” — issues.

Although the physician-dominated British government’s Expert Advisory Group on AIDS called these issues “window-dressing”, the clinical and public health evidence available shows strongly that it is these issues that are significantly responsible for the continuing transmission of the virus as well as the diverse co-morbidities of HIV infection related to poor health-outcomes among those already infected.

Scientific research has also identified various factors that contribute to services’ effectiveness in creating good outcomes, defined in terms that are relevant to daily life and health. These factors include comprehensive/biopsychosocial services that are integrated, easily usable, of good quality, delivered by appropriately-trained professionals in a patient-centred manner, and — crucially — services that empower patients to take responsibility for their health and health-behaviours. Empowerment means that people with HIV are able to participate in, and have influence over, the emotional, occupational, social, political, and health-service contexts in which they move. Empowerment enables health and minimises disability; conversely, disempowerment — as with unresponsive, inadequate, or irrelevant services — promotes disablement and disability. The concept of empowerment in HIV-services stems from the Denver Principles and relates to work currently underway on the Denver Principles Empowerment Index, led by Sean Strub (cf. www.seroproject.com).

The effectiveness of services can be measured, but the mediating factors that enable and promote health can also be measured. Their measurement can contribute significantly to the betterment of services and, thus, the betterment of the health of people with HIV. The  Tuke Institute proposes measures for six central criteria, each with sub-criteria, which would form an index of the health-effectiveness of services for people with HIV.


  1. effectiveness in terms of health-status, in which clinics must show:
    1. that they measure patients health-status on entry and at various stages of service, to measure the effectiveness of their services
    2. that the measures of health are comprehensive —i.e., embracing physical, mental, behavioural, and social health
    3. that the measures of health are patient-centred and meaningful to the patients in their own lives
  2. empowerment and participation of patients
    1. clinics must show that they empower patients to participate in various levels of service, from clinical decision-making to complaints-handling, audit and governance, and planning and policy-development
    2. that participation is systemic rather than using unelected ‘representatives’
    3. patients must be enabled to take responsibility for their health, addressing all aspects of their physical and mental health in social context
  3. comprehensiveness of services
    1. clinics must show that they provide services that address all aspects of illness, including physical, mental, behavioural, and social
    2. that they integrate services addressing clinical prevention, treatment, and rehabilitation
  4. integration of services
    1. clinics must show that they have integrated biopsychosocial services
    2. they must demonstrate integration through various methods (e.g., nurse-leadership, case-conferencing, case-management, co-localisation, etc)
    3. they must show how they integrate therapeutic interventions with both primary and secondary preventive interventions
  5. quality — clinics must show that their services are of good quality in terms of:
    1. the ready availability and variety of primarily evidential treatments and treatment-modalities (chemical, psychological, nutritional, surgical, etc)
    2. clinicians’ competence in reference to their role — clinicians working only within their areas of qualified expertise (e.g., physicians not providing psychotherapy/counselling unless they are also qualified as psychotherapists)
    3. the clinic’s physical quality (structures, aesthetics, cleanliness, etc)
    4. the clinic’s cultural health (staff morale, pro-patient attitudes, team-function, communication-skills of both clinical and non-clinical service-providers, positive responsiveness to complaints, etc)
  6. usability — clinics must show that they provide services of good quality in a way that is most efficient and easy to use for the patients, particularly in terms of:
    1. geographical accessibility
    2. temporal accessibility (opening-hours, weekend and evening opening, waiting-times, etc)
    3. flexible communication-methods with patients


Data on each of these measures would be collected by a variety of respondents, including the Tuke Institute directly, service-users, service-providers. The data would be reported to the public as buyers of the services and to the commissioners of the services as guardians of public funds, to ensure effective commissioning.


The performance of any given service would be reported based on weakest-link analysis, in which criteria are reported by the lowest score achieved in each sub-criterion, rather than the average of sub-criteria. The rationale behind this lies in the fact that, as services are systems, a break in the chain of delivery means that all elements in the system therefore are either reduced in effectiveness or fail. This Index brings with it a graded kitemark of quality from basic (bronze) to excellent (gold), with explanations as to areas in which a provider can better its services.


The proposed Index is valuable for a number of reasons. As well as being a tool for promoting effectiveness in health-services in HIV, it is a resource for service-providers: it identifies standards to which all services should aspire while educating both service-users and service-providers about the ingredients and importance of health-effective services. Using this Index, clinics will be able to show their commitment to the well-being of people with HIV by meeting the criteria for optimal services, and ensuring that they are fully up-to-date with the best practices in serving the health-needs of people with HIV through appropriate training. It is a means also for service-providers, as leaders in quality, to achieve public recognition for their commitment to the health of their service-users. It can also provide a blue-print on which measures of services for other chronic-terminal conditions can be based, thus demonstrating leadership by the HIV-sector once again.

By educating service-users, it also raises reasonable and informed expectations as to the quality of services, and provides leverage with which to promote health-effective services. It is also a resource for people with HIV to identify those services that are committed to providing health-effective services and which, therefore, are committed to the well-being of people with HIV.

We’ve just posted a discussion-document about one of our projects, the Index of Health-Services’ Effectiveness (www.tukeinstitute.org/ihse). This is proposed as a tool to help us as public and patients know which services help us to get well and to stay well — the essential purpose of health-services, after all. Current measures don’t do this, focused as they are on quality issues that, in themselves, are all well and good but don’t relate to health-outcomes. So, our document supports the government’s current draft of the NHS Mandate and shows a way in which health-services can be monitored in terms of their effectiveness. It would use information from a number of sources, including patients, providers, independent organisations, and the Tuke Institute itself. The document also identifies ways in which the results might be reported and used. We hope that you will have a look at the page (www.tukeinstitute.org/ihse) and give us your feedback. We think it’s a crucial element missing in the toolkit of service-evaluation and it would ensure the most effective services are delivered for the patients’ benefit first and foremost. And that’s what the Tuke Institute is all about.

An overview of collected works published by the Tuke Institute and other organisations on the topic of patient-centred health-services.


10 Jul 2012 04:32

A good Guardian Comment article here on why home-based HIV testing is a bad idea. Health-services should increase quality, not outsource their failures to the sector or rely on technology and ignore the social problems that accompany it. Bisi Alimi writes eloquently of the problems surrounding the real-life use of home-based HIV testing. Orasure have been trying for years to access this market, without due regard to the mental and social damage that this technology can cause. It is not like testing for pregnancy, but more like testing for a genetic disease for which the treatment is not curative. A great disappointment to those who are concerned for the health of people with HIV.

WASHINGTON, DC - FEBRUARY 7:  AmeriCorps volun...
WASHINGTON, DC – FEBRUARY 7: AmeriCorps volunteers Michael Fox (L) and Isabel Hirsch (C) talk while a client waits for the results of an HIV test during a free HIV testing event at by the Whitman-Walker Health February 7, 2012 in Washington, DC. Whitman-Walker Health held the event to observe National Black HIV/AIDS Awareness Day. (Image credit: Getty Images via @daylife)
Enhanced by Zemanta

03 Jul 2012 08:57

This article appeared today, briefly surveying some of the history of HIV in the UK and the role of the Terrence Higgins Trust. Accessible on the Times site here

As the Terrence Higgins Trust turns 30, Laura Dixon finds out how the lives of HIV sufferers have changed

In 1982, Rupert Whitaker received a birthday card from his partner, written from a hospital bed in St Thomas’ in London. At the time he had suspicions that Terry, a previously healthy young man who was wasting away, could be suffering from “this American disease”, a frightening new illness devastating the gay community in San Francisco. It was clear that he was hallucinating from the message in the card and Dr Whitaker could see he was deteriorating quickly, but doctors did not know exactly what was wrong.

A little more than a month later, on July 4, Terrence died. He was 37 and, it was later established, was one of the first people in the UK to die with Aids. 

His friends grieved the private tragedy of a life cut short, and the terrible evidence that HIV was spreading to these shores. Dr Whitaker helped to set up the Terrence Higgins Trust with the aim of raising awareness of the virus and campaigning for funding for research. It would be two years before scientists identified HIV and one more before a test was established. By then, many people had died and more were very sick.

Nick Partridge, chief executive of the Trust, first became involved on the charity’s helplines, taking calls from London hospitals when they believed they had another case. “Classically people would get pneumonia, and had lost a lot of weight. Many were seriously ill by the time they got to hospital, the virus had demolished their immune system. Seeing people, young men, get so sick so quickly and die was totally shocking for all of us. There was an extraordinary level of fear.”

“We would have ten deaths a week in our department,” Professor Brian Gazzard, director of HIV research and education at Chelsea and Westminster Hospital, says of the early years. “Everybody died, you did your best to make sure people died with dignity. We had a rota to go to the funerals, a lady who went to every one. We would go to the pub every Friday night and have a drink for them.”

The problem, says Dr Whitaker, who later had HIV diagnosed himself but went on to train as a doctor and immunologist, was figuring out how these various symptoms were linked. “How do you relate these disparate diseases? Lung infection, sarcoma, skin cancer, infections. In a healthy young man, how do they develop such an immune deficiency that they would be susceptible to these diseases?”

Talk to anyone who worked in the field in the early Eighties and they speak of fear and prejudice. In one school all the parents withdrew their children after it emerged that a child who had received a blood transfusion may have been infected. A rumour that a lifeguard had it prompted the evacuation and draining of a swimming pool. According to Partridge, it was not until 1986 that the scale and scope of the virus became clear. “When the epidemiologists and insurers started doing their calculations, we realised the potential for this had spread,” he says.

People started to recognise that this was not just a disease that affected gay communities in the big cities in the West, but heterosexuals too and that it had travelled to sub-Saharan Africa. But treatments were still limited. Dr Margaret Johnson set up the HIV clinic in the Royal Free in London in 1987. “In those days it was really firefighting. We would have a ward of 28 beds, they would all be full. Seventy per cent of the patients in the clinic would die within the year.”

In the late Eighties a cancer drug called AZT started to be used, but made only a marginal difference. So the funerals continued. Dr Whitaker said that he stopped counting after losing 35 friends by the early Nineties. But in 1996 there was a breakthrough. A combination treatment that transformed the field: an antiretroviral that could halt the earlier progression of the disease and significantly delay the onset of Aids.

“I saw many, many patients almost rise from their deathbeds, Lazarus-like,” Dr Barry Peters, head of the HIV research unit at King’s College London, says. “They had said goodbye to the world. From having a fight that was measured in weeks or months, we had halted the disease and it could be many years.”

Len Hughes was one of those “miracle” patients. He had been sent home from the Lighthouse, a palliative care centre, after having been told he was dying. “I had oxygen deprivation, bacterial meningitis, bronchial infections. They were killing me all at once. I could not stand up or balance. I remember coming home by taxi, and looking out the windows and not knowing anything. I was coming home to die. It is still fresh in my memory.

“I took the combination drugs and after about ten days I remember sitting in my living room and I felt my mind clearing. It was incredible.”

Dr Whitaker had also not expected to live long. “In 1984 I met Terry’s physicians and they said ‘we thought you were dead’. That stayed with me for a long time. I was expecting to die within a year, then within three years, within five. It is hard to express what it’s like to see so many people literally coming off their death beds.” Thirty years on from Higgins’ death, the HIV landscape has changed beyond recognition. Becoming infected with HIV in this country no longer means a death sentence, as long as it is detected early. The charity says it is now helping people with HIV plan for their old age.“The really good news is that treatments really work,” Dr Johnson says. “There are still problems with late diagnosis, you want to start treatment well before you are at risk of opportunistic infections and HIV- related diseases. But there’s no reason why someone diagnosed early should not have a normal life expectancy. And the treatments are much better.

“If we look back to the mid Nineties when this therapy became available for many patients, they were taking tablets three times a day. That’s 16 tablets a day, some with food, some on an empty stomach, some with water. They were very complicated regimens.

“Now many patients are on a combination of one or two pills a day. If you looked at the ward here 15 years ago, it would be filled with patients on drips, now it’s people on mobile phones, late for work.”

Professor Gazzard says the advance in HIV treatment is “one of the miracles of my lifetime”.

“But it is about education. While one pill a day sounds very easy and is much better than dying it is still a very big price to pay,” he says. Dr Whitaker, who now runs the Tuke Institute, a health policy think-tank, says that while the current treatments are a “doddle compared to the old regimes”, that too has its dangers. “I have been taking medication since 1993, that’s almost 20 years. For eight I had chronic diarrhoea. Four or five times a day for eight years. I also had to take medication three times a day, 25 pills. I had to fast for nine hours. I did that with perfect adherence because I did not want to die. I knew what dying looked like.” The number of people living with HIV is creeping upwards — last year there were 5,600 new diagnoses in the UK, and health protection officials estimate that there are now 100,000 people living with the virus. “People think they can take a pill and they are OK, that is not the case. I can tell you,” says 

Len Hughes, now 69. “It is life-long. You can’t stop or let up because the virus is waiting to pounce. It lives in your body. It’s a fantastic survivor and a clever little bastard.”

The Terrence Higgins Trust will this week launch a campaign thanking Terry “for inspiring 30 years of better sexual health”. His extraordinary legacy, they say, meant the UK put in place the first safe-sex campaign in Europe, meaning fewer people caught HIV and died, and for those that did there was a support network to help. But they still point out there is a long way to go.

“We have come an amazing distance, Dr Whitaker says, “but there is a very large distance to go, and in some ways I think that’s larger than the distance we’ve come.” Dr Peters says: “Historians in 50 years will be looking back to today and saying we are at the beginning of the HIV epidemic.

“We might be at the end of the beginning, to quote someone famous, but we are still at the beginning of the epidemic. There are many parts of the world where HIV is yet to cause its worst effects. Yes we know how to treat it but it’s still a major, major issue.”

Key facts about HIV and Aids

In the 1980s HIV was a fatal virus that could not be treated. It is now a chronic manageable condition and people can expect a normal lifespan.

It is estimated that there are more than 100,000 people living in the UK with HIV, both diagnosed and undiagnosed.

Since the first case 30 years ago in the UK 120,000 people have had HIV diagnosed, 27,000 cases have developed into Aids and 20,000 people have died.

In 2010, 3,800 people in the UK had HIV diagnosed. Last year there were 5,600. People who have the infection diagnosed late are ten times more likely to die within a year than those who had the diagnosis before treatment was required.

Early diagnosis can add an average of 43 years to the life expectancy of a man and 44 for a woman. Life expectancy has increased by 13 years over the past decade.

In 2010, there were 680 deaths caused by HIV compared with 1,723 in 1995. A 2008 study by The Lancet found that people with Aids can expect to live into their sixties and beyond.

Jack McCaughtrie © Times Newspapers Limited 2012 | Version (55030) Registered in England No. 894646 Registered office: 3 Thomas More Square, London, E98 1XY

02 Jul 2012 09:08

The BBC has been showing a series recently of “The Secret History of Our Streets”, readily viewed on iPlayer. Deptford in South London used to be a moderately prosperous lower-class area that was inspected by Lewisham Council agents and deemed largely slum, with houses hardly fit for habitation. The agents were social commentators, with no qualifications in architecture or surveying, with an agenda hatched in post-war planning aiming to make London a ‘machine’; it was a time of great theory and little relevance to the needs of the people there. Deptford was a sad and good example. As a consequence, large swathes of a prosperous community housed in historical buildings were moved and the buildings pulled down to make way for architecturally fashionable but socially destructive high-rise and modernist blocks. Today, we are trying to pull down those old blocks and create cheap facsimiles of the solid Victorian houses that were there originally; but the community can not be rebuilt. It is a fascinating lesson for people who are paid to provide services to society, including in health. The questions should always be asked: whose interests are you really serving? How do you know what you are doing is effective, and for whom? By being efficient by the lights of your profession or your perspective are you also destroying a community, failing to look at what works for that community from that community’s perspective? Are you privileging your financial capital over others’ social capital? Questions that should always be asked of health-services and community-providers alike—and answered with integrity. Whose interests are you really serving?

22 Mar 2012 05:46

I’ve been reading with dismay about the Health and Social Care Bill which will destroy the little remaining of the NHS. It happens that I’m studying Allyson Pollock’s book “NHS plc” at the moment and on page 215 of the hard-back edition she states: “It is easy to lose sight of the benefits the NHS secured: integrated hospital services with minimal internal administrative costs; district general hospitals, bringing specialist services for all but the rarest conditions within reach of every family; the evolution of general practice to offer 24-hour primary care by doctors trained for the job, and continuity of care for everyone; robust structures for data collection and planning in order to match reources to needs; the education and training of medical staff; and the gradual equalisation of service provision across the country, while sstill allowing for experimentation and innovation”.

It is also worth noting what she writes a little earlier: “The high-profile private sector failures of the railways, government information technology systems, the Benefits Office, the Passport Office, the Channel Tunnel and long-term care all illustrate the difficulties governments will face when confronted by the monopoly power of private suppliers of health services”.

It is well worth remembering what the NHS did in fact bring to the public. We now have the prospect of insurance companies’ obstructionism, a Financial Services Authority that is disinterested and toothless in protecting patient-interests, and privatised services where clinicians are gagged from speaking out against malpractice because it is against the shareholders’ financial interests. This is what the Conservatives and Labourites have jointly brought in synergy with the obstructionism and self-interest of unions and physicians. The government has the responsibility for protecting the public’s interests but has signally failed to do so. Where is the Royal College of Public Medicine that protects the public’s interests? No reputable scientist or researcher can honestly say that privatisation increases health-effectiveness, so why are we seeking to replicate America’s profound and evident failure? It boggles my mind.