Editorial: James Moore on his Let’s Talk Withdrawal site has recently posted the following. The reason to reproduce here is that it seems to overlap so much with the Peter Goetzsche Affair – see below. In both instances we have an ex-Collaboration in one case and almost ex-College in another more concerned with their brand and business opportunities that with the integrity of the data or the wellbeing of patients. See what you think.
I originally wrote the opinion piece below following a social media event organised by the Royal College of Psychiatrists in August 2017, but at the time I decided against sharing it. Recent events have conspired to make me reconsider.
On Tuesday, November 20th, the Royal College of Psychiatrists participated in a video made by the BBC entitled “End pill-shaming in mental health”. In the video, Hannah describes her experiences of enduring criticism for taking medication and being mentally ill. Also, the RCPsych President, Professor Wendy Burn, shares the story of putting a 70-year-old gentleman onto antidepressants.
I thought that Hannah was brave and eloquent in speaking about her experiences and we can all benefit from hearing real experiences both good and bad. But, dear BBC, where is the balance? Where is the person harmed by the drugs? How can we let the viewers know that there is a range of opinions on this issue? Was anyone from the prescribed harm community even allowed a single comment on the video?
So it pains me to dust off the following piece. After I wrote it, I thought more of it and decided never to post it. The BBC video made me reconsider because, ironically, it seems that a professional medical body is content to shame and stigmatise those people – including patients speaking from personal experience – who point out the drawbacks of psychiatric drugs.
On July 31st, the Royal College of Psychiatrists asked for questions for a Twitter Q&A on ‘the facts behind antidepressants’ to be held on August 3rd2017. This was precipitated, in part, by the BBC Panorama documentary, A Prescription for Murder? broadcast on Wednesday, July 26that 9pm.
I welcomed this, a chance for those harmed by psychiatric drugs to ask questions of a profession that can come across as aloof and distant. An opportunity to fully engage and discuss pros and cons side by side.
The Royal College asked that questions were submitted using the hashtag #ADsMythBuster. With a tiny number of exceptions, the questions were polite, restrained and not personal in nature.
No sooner had we started than those with lived experience of withdrawal and dependence were accused of pill-shaming, scaremongering and stigmatisation. Why, because we have an opinion that differs to the mainstream? Are we singled out because our views are challenging or potentially upsetting to those that believe in their drugs? Are we called out because we really are just a collection of opinionated shamers, scaremongers and stigmatisers? What could the motivation be for someone to question our response to increasing levels of mental distress across the UK, does it serve the public interest or self-interest?
There is no amount of evidence that will change a closed mind, but I feel it necessary to stand up for myself. I write as someone who was prescribed a psychiatric drug without any opportunity to be able to weigh up the pros and cons, because I was never told about the cons and the officially provided information downplays the reality. In addition, once I started to struggle to come off the drugs, I was told the fault was mine and that I was alone in having such difficult experiences. The options for help presented were simple; ‘increase your dosage’ or ‘add an antipsychotic to your antidepressant’ when my expressed wish was to come off safely.
Why should my experience be invalidated because it bumps up against a mainstream view? Why should the damage to me, my family, the loss of my career, my self-worth, my esteem, be kept quiet? Why should the refusal of the medical community to acknowledge problems that they themselves caused remain unchallenged?
Let us be clear, asking legitimate questions, requested by a professional body, is not ‘pill-shaming’. Expressing your unease at the response to mental health difficulties in the UK is not scaremongering. Asking people to be better informed about their mood and behaviour altering medication intake is not stigmatising.
Far from stigmatising others, the community of those harmed by psychiatric drugs often feel stigmatised and judged. Stigmatised by doctors who refuse to recognise a syndrome that was prescribed for them. Stigmatised by the Government and refused benefits because their difficulties don’t fit neatly into a diagnostic category. And now stigmatised and accused by proponents of psychiatric drugs. Ignored, invalidated, unheard, judged and diminished, all because we dared to question. I have no expectation that anything will change as a result of this initiative, but I did see it as a chance for those who lack a voice to be heard. Unfortunately, it seems that our unpalatable views are so toxic to some that society would be better served by us living in fear of expressing ourselves.
I am not a shamer, I do not stigmatise others who need and rely on psychiatric drugs and I am not scaremongering. Those who have accused me and my colleagues and friends of this need to ask if the same is true of themselves. Many of those speaking out are getting help and treatment which makes me glad, but many of those, like myself, struggling with post drug withdrawal syndromes are utterly without help and support and don’t even get the benefit of common courtesy or understanding from people with whom we probably share a great deal in common.
I do not believe that criticism of a psychiatric drug carries with it overt or implicit criticism of someone taking that drug or anyone who feels they need to rely on it. Are people who question cancer treatment ‘chemo-shamers’ and therefore by implication critical of anyone struck by this dreadful disease? Is that really what we are suggesting with psychiatric drugs? I am critical of the drugs themselves and the professionals that don’t tell the whole story and don’t offer us all the chance for fully informed consent, but I try to remain respectful in my interactions at all times. Given how much I have personally endured and lost, at times this is very difficult. However, accusations of pill shaming are personally directed at me and my friends and colleagues. The two are not equivalent.
I feel that we need to decouple legitimate critical views of medical treatment or therapy from the propensity to feel shame and guilt about that treatment. Medical science makes progress precisely by being self-critical and self-analytical, not by accepting blind faith and rejecting all criticism. Most new and novel treatments or therapies have arisen because of dissatisfaction with previous methods of treatment. If we stop questioning ourselves in health and well-being we will not progress and part of that questioning needs to be by people who experience difficulty, not just by those who benefit.
The accusations of pill shaming, scaremongering and stigmatisation move this important topic not one inch further forward. Proper courteous discussion and debate might just do so.
The link HERE offers a take on recent events within Cochrane by Tom Jefferson, where he lays out is view that Cochrane are completely uninterested in the integrity of the data they are keen to market under a Cochrane brand. Jefferson suggests there is a peculiarly British disease here. Its difficult to agree with this in the sense that in a few years the Brits will probably regard Halloween as a peculiarly British holiday when everyone knows its Irish.
(There may be a better version of this on You-Tube by the time this gets posted)