Foreign Correspondents

As we approach world hearing voices day 2013 Karen and I are in Canada. We have just enjoyed running a preconference workshop for about 100 people in Winnipeg. I am sitting in my room before breakfast writing this piece and as I sit I am thinking back twenty-three years ago; I am in a psych unit in Manchester and I have a new support worker called Lindsay. By then I had been a psych patient for almost ten years and was fast approaching spending the rest of my life in the system. My support worker had convinced me to go to a new group that was starting in Manchester called a hearing voices group.

I am proud and happy to announce that our webpage DrivingUsCrazy was launched today. It will help us to get the word out about the international film festival taking place in Gothenburg, 16-18 October, 2015, and also to highlight the issue of madness every day until then — and hopefully for many days afterwards.

The invitation from the London Review of Books to review Ben Goldacre’s Bad Pharma™ reads: “We were unsure, at first, what a review could add that isn’t already in the book – scrappy summaries and bits of praise are not for us. The book is of sufficient importance that the main thing is to get someone who knows what they’re talking about to present the material confidently... frame the discussion”. My head said it was inconceivable that the LRB wouldn’t take a review, even if it was at odds with the invitation to praise Bad Pharma. But my gut told me the inconceivable was about to take flesh.

During the past 29 years I have been diagnosed with anxiety, depression, PTSD, Biploar II and complex PTSD. I have tried numerous drug combinations and have been through ECT several times. None of this helped me. My road to recovery started when I decided to rebel against conventional psychiatry.

What does the new DSM-5 have in common with an Alfred Hitchcock mystery?  They both use a plot device, a “MacGuffin,” to drive the story. Hitchcock explained a MacGuffin as on the one hand “ridiculous”, “non-existent”, “empty” and inherently without meaning, and at the same time the central point around which the entire story turns.  Which narratives, and whose, are served by the "diagnosis MacGuffin”? Are there more socially desirable alternatives to replace this particular plot vehicle? 

Access to data is more important than access to information about conflicts of interest. It is only when there is access to the data that we can see if interests are conflicting and take that into account. Problems don’t get solved unless someone is motivated for some reason. We need the bias that pharmaceutical companies bring to bear in their defense of a product, along with the bias of those who might have been injured by a treatment. Both of these biases can distort the picture but it’s when people with differing points of view agree on what is right in front of their noses that we can begin to have some confidence about what we have.

A little over a year ago, there was consternation in psychiatric circles as a French psychiatrist, Daniele Canarelli was found guilty after her patient hacked a man to death. She had not recogized the hazard he posed. Doctors didn’t like the implications they saw. In a series of lectures I have raised the question as to how long it might be before doctors would be found guilty for a suicide or homicide linked to an antidepressant, given that we have known that these drugs can cause suicide or homicide for over 50 years.

"I want to change the way we think about mental health care so that any child, whether they have a mental illness or simply need support through a difficult time, can get the right help at the right time." This was said by Care Minister Norman Lamb and quoted by the BBC on March 17th 2015. Mr. Lamb is known to have a son who has suffered mental health difficulties and it may well have come from the heart as much as it did from the election fever which is beginning to infect British politicians. However it says something worth picking up upon. I want to change the way we think about mental health care… and … simply need support through a difficult time. These are important shifts of language, and doubly important when they come from a government health minister.

Through the ISPS listserve, I read a blog this morning written by Thomas Insel, director of the NIMH. The way he described people I daily meet in work and in my own life created a rising pulse, so I decided to find out some more about his thoughts and practice. I am not saying that what I read on his blog is unknown to me, but still it made me wonder how on earth is it possible to invest so much money - and resources - in research which is so distant from practice, and so far away from humanistic and holistic ideas and theories.

Good Pharma is the story of the Mario Negri Institute. Mario Negri was a wealthy patron who on his death in 1960 bequeathed a large sum of money to support independent pharmaceutical research to an upcoming researcher Silvio Garattini. Garattini and Alfredo Leonardi set about building an Institute centred on the new drugs and new techniques. They continue to grow without ever having patented any of their many discoveries or concealing any of the data from experiments that didn’t work out or accommodating any of their trials to industry’s wishes.

We are among an increasing number of people around the world who know the importance of holding on to a humanistic idea, and of keeping in mind that people need—first and foremost—other people. People who are willing to take part, to share with us the horror and confusion, to invite the telling of a narrative, and to keep the hope alive.

On Monday a new study was published with the finding that there is a three- to four-fold increase in the rates of Autistic Spectrum Disorder and Developmental Delay in children, especially boys, born to mothers who have been on antidepressants through pregnancy. There are further studies with comparable findings in the offing. Not only this but it looks as though the SSRIs may redefine what it means to be a teratogen. Other teratogens produce their effects in the first trimester of pregnancy when organs are first being formed. But it looks like antidepressants used in the third trimester can lead to autistic spectrum disorder and developmental delay.

One of the most remarkable aspects of Robert Whitaker’s (2010) outstanding book Anatomy of an Epidemic was his comparative data that contrasted outcomes for mental disorders prior to the introduction of pharmacological treatments with outcomes for mental disorders after pharmacological treatments became the main, and often only, course of action. I have asked people in workshops to estimate who might be better off – someone diagnosed with what we now call bipolar disorder prior to the introduction of lithium or someone diagnosed after lithium became a standard treatment. Almost without exception workshoppers estimate that the people diagnosed before lithium was available do much worse. Whitaker’s data indicate exactly the opposite. It’s a staggering finding.

A new generation of multilateral and bilateral trade agreements is likely to significantly threaten access and cost of healthcare, and limit signatory Governments sovereignty to prioritise health care policy to protect and improve the health of citizens. The Trans Pacific Partnership Agreement (TPPA), a Pacific Rim regional trade agreement involving 12 countries — including New Zealand, Australia and the US — is one such agreement, and it has the potential to significantly alter the domestic environment for health policy-making.

In recent months the English pharmaceutical company GlaxoSmithKline (GSK) has assiduously portrayed itself as an advocate of transparency, and in support of access to clinical trial data. Well, in support of "Responsible Access." "Responsible" here essentially means that a researcher commits to the primacy of RCTs and statistical significance over an analysis of adverse events. It would not, for example, be responsible to claim that an SSRI causes suicide, a statin muscle damage or cognitive failure, or hypoglycemics cause hypoglycemia unless a trial has shown this to happen to a Statistically Significant extent – and they never do.

Faced with questions about the $3 Billion fine imposed on GSK – is it just the cost of doing business? - Andrew Witty snapped back: “Although corporate malfeasance cases end up looking very big, they often have their origin in just… one or two people who didn’t quite do the right thing. It’s not about the big piece. The 100,000 people who work for GSK are just like you, right? I’m sure everybody who reads the BMJ has friends who work for drug companies. They’re normal people… Many of them are doctors."

Dutch peer support education has changed dramatically over time since its inception. Peer support education has evolved over time from empowered and independent peer support education to institutionalized peer support education. In effect the (future) peer support workers in the Netherlands could become clinician-friendly peer support workers who merely represent peer support work in name but not in practice.

Doctors in the 1950s and 1960s made psychiatric diagnoses on orphaned children that led to treatment with antipsychotic drugs, and one of the drivers of this seemed to be that the Church got more money from the State as a result. The doctors, of course, also got paid. This feels like a seriously corrupt nexus operating with near impunity on the basis that no one is going to be bothered to investigate the fate of some orphans.

It would be a shame if Andrew Scull’s Madness in Civilization did no more than draw well deserved applause for his authorship and historical expertise, and a prominent place in the bibliography of madness. My own copy of Madness in Civilization arrived last week, and it is great; comprehensive, brilliantly written, lots of colourful and many disturbing illustrations. Madness’ continuing story, “From the Bible to Freud, from the Madhouse to Modern Medicine” is told as never before, but there seems to be something missing...

Pharmalot has just posted a piece - 'Controversial FDA official, Tom Laughren, retires.' This is a must read for anyone with anything to do with mental health - both the post and the comments afterwards where some have posted that they still believe the Black Box warnings on antidepressants arose because of pressure from the Church of Scientology rather than in response to the data.The post will likely seem boring to many. But the comments won't - they seethe with anger.

Facing a sexual abuse lawsuit, the archdiocese of St Paul and Minneapolis made a big deal of putting an independent panel in place to investigate. They put the Reverend Reginald Whitt in charge of appointing the panel and receiving its reports on behalf of the archdiocese. Rev. Whitt told priests and deacons that the task force may review specific files to determine whether the policies of the archdiocese concerning clergy sexual misconduct were properly followed. But, he wrote, “Access to these files will be within my control, and limited only to what is necessary for the task force.” This sounds terribly like the approach Sir Andrew Witty is attempting to put in place for GSK, AbbVie and the rest of the branded pharmaceutical industry vis-a-vis abuses, including child abuse committed in their name. They are asserting their right to spin their version of what it is you put in your body even though this clashes fundamentally with your right to know what you are putting in your body.

On 25 October 2013, the World Health Organization issued a press release promoting guidelines produced by the Patient-Reported Outcomes Safety Event Reporting (PROSPER) Consortium. The consortium aimed to “to improve [drug] safety reporting by better incorporating the perspective of the patient” with the aim of the guidance produced “to ensure that the patient ‘voice’ and perspective feed appropriately into collection of safety data.” Rather than 'quietly protecting the health of every person on this planet, every day' it seems clear that WHO is quietly protecting the interests of pharmaceutical companies and their advisors on planet 'profit from patients', every day.

We want to start an international initiative to promote the writing of recovery stories in every country, with the ultimate goal of sharing at an international level the most compelling ones from each country. Our proposal is born from an awareness that recovery stories are necessary today in order to give back to mental sufferance its meaning and transparency, to fight the biographical opacity of biological theories (the broken brain) and to guarantee decisional power to those who are offered (or imposed) mono-dimensional or dehumanizing treatments.

I’ve had some criticism of the recent Doctor Munchausen posts. They’re not fair on doctors. Many people have told me of lives saved by good doctors. It’s not fair to tar these good doctors with the brush of a few Dr Munchausens here and there. So there’s bad doctoring and good doctoring and great doctoring. What would great doctoring mean?

The norm in science is that there is free access to the data underpinning experiments. If free access is denied; it’s not science. In the case of branded pharmaceuticals, we do not even know what trials have been done. What is put in the public domain is not data. The selected highlights of a football game and the comments of the pundits afterwards don't change the score. The selected highlights of pharma studies and the comments of pundits routinely change the score.