Thanks for this. I run a suicide prevention charity which responds to suicidality using indigenous and sociological rather than medical approaches. The only thing I disagree with in your article is the statement that we can’t know why some with suicidal thoughts end their lives and why some don’t.
My child killed himself 15 days after being prescribed Prozac. Both my government and Mylan Pharmacueticals conducted causality assessments and found the drug to be the probable cause of his suicide. In some cases, the reason people end their lives is because of the pharmacological treatment they are given.
The Joiner model also explains some suicides as being a product of social isolation, a sense of being a burden and the ability to overcome the survival instinct through either the use of drugs or desensitisation to pain and suffering.
My charity’s work suggests that along with these factors, those who die are distinguished by their lack of self efficacy. They do not believe they have the power to change the circumstances causing their suffering. In our experience, no matter how bad the situation, if people believe they are capable of changing their circumstances through their own efforts, they will survive.
Hi Jolie. Yes my son made a choice. He chose to end the torture of antidepressant induced akathisia. Much as he would have chosen to cut off his arm had it been trapped on a railway track with a train approaching. A choice he would never have wanted to make but one over which he saw no other choice.
My son did not ‘commit suicide.’ People commit sins or crimes – his taking of his life was neither. My son died by suicide with both my government and Mylan Pharmaceuticals assessing Prozac as “the most likely cause” of his death. He was neither a sinner nor a criminal. He was a victim.
You suggest my child should not be spoken of in total sympathy. It is hard for me to imagine what about a child being tortured by medical professionals he trusted and going through the terrifying process of making a noose and hanging himself in order to end his pain deserves judgement or criticism.
I think that you are suggesting that my expressing my love and sympathy for Toran sets a bad example to others. You perhaps believe my message should be that if you kill yourself your parents will stop loving you and will publicly condemn you. You perhaps believe that this would act as a deterrent to suicide. Let me be clear about a couple of things. First, my son is not defined by how he died. He is defined by how he lived. Second, I HATE suicide. I hate what was done to Toran and I hate what he did to himself. My son was a child any mother would be proud of, his death is a death any mother would hate passionately. I will love my son forever. I will hate suicide forever. I will never condemn my son for being a victim of iatrogenic suicide.
Two years after my son died, my sister died during chemotherapy treatment and a blood transfusion. It has been acknowledged that her death too was iatrogenic. My sister could have chosen not to have treatment for the leukemia she was diagnosed with. Should i also condemn my sister for her choice? Should i stop loving her because she chose to accept treatment that killed her? Am I setting a bad example by publicly saying I love my sister?
Finally thank you for your good wishes. They are appreciated.
I want to thank Michael for an article that taught me so much and to comment on the concept of failure as a positive.
As a mother and a teacher I have spent my life promoting the idea that failure is one of our greatest achievements. I have never seen failure as something to be afraid of but rather something to be celebrated. I don’t think it makes us any less worthy of admiration or respect, takes away from our successes or defines us as anything other than brave, forward-thinking and ambitious. Small people set achievable goals, heroes like Thomas Szasz set huge ‘not achievable in my lifetime’ goals and analysis of why they are not achieved overnight and meet so much resistance teaches those to whom the torch is passed how to get closer to success. Failure is our greatest teacher and thanks to Thomas we are all wiser and closer to achieving the change he wanted to see in the world.
I personally have learned far more from failing to reach an ambitious goal than from succeeding in smaller ones. If I’m not failing regularly, I suspect I am being complacent and not challenging myself enough. I relish failure as presenting me with opportunities and sometimes inspiring more successful efforts in others.
Of course Thomas Szasz failed. My child would not have been told he had a chemical imbalance, given drugs to fix it and violently killed himself because of those drugs, had Thomas succeeded. I would not have been thrown into a psychiatric institution following his death against my wishes. Had Thomas succeeded, none of us would be here on MIA. Does that make his achievements any less worthy of recognition? Of course not. He failed because he promoted ways of thinking and behaving that will change the world, benefit the masses and undermine the privileged. He failed because he was great and had a vision beyond his peers. As Michael points out, his failure says little about him but speaks volumes about his detractors, our society and what is needed to achieve lasting and effective change. Is changing the world ever achieved in one person’s lifetime or do the big humanity-changing goals have a longer timeframe before they are truly bedded in?
My goal is to eradicate suicide. I will be remembered as a failure. On the back of my failure though, lasting rather than superficial, short-lived change may be made and as such my failure and my success are intertwined. I’m no Thomas Szasz and no one will write such a thoughtful, thought provoking article when I die as Michael has but if someone talks about my failures, I’ll feel like I’ve succeeded because my work and ideas will have outlived me.
I think it is imperative that we recognize that as a movement aimed at ending coercive psychiatry we are failing. Yes we need to celebrate our successes and acknowledge our heroes but if we are afraid of admitting that we are not achieving the change we seek or critically appraise the efforts of our leaders, then I don’t think we’ll ever get there. Let’s not delude ourselves or be afraid to honestly evaluate progress towards our goals. Being afraid to acknowledge that we have not yet succeeded would, in my view, be our biggest failure.
I agree. The state has too much vested in keeping patients vulnerable and afraid to have any interest or ability in the empowerment of those involved in the system. Demand for change would need to come from the public and be driven by those of us who have been harmed. Sadly the myth of the violent, irrational mental patient who is a risk to society and the myth that psychiatrists are practicing evidence based medicine serves to make the average person on the street comfortable with human rights abuses within psychiatry.
Hi Alix
I accept totally that people make mistakes and psychiatrists are no different from anyone else in that respect. What I’m concerned about is that many standard practices in psychiatry are nothing more than abuse and many psychiatrists routinely engage in abusive practices for which there are no challenges and no accountability. Making mistakes is one thing…deliberate abuse is another and that’s what I think needs addressing.
I couldn’t agree with you more. The New Zealand police are currently reviewing the evidence in relation to my son’s death as I have submitted it constitutes manslaughter. I’m waiting for the police to complete their review and advise whether they are laying criminal charges against the psychiatrist. Cross your fingers for me 🙂
The evidence for copycat murder is much stronger than for copycat suicide – primarily because murderers can be interviewed about what influenced their behaviour while those who die from suicide cannot. We don’t see calls for the media not to report on individual cases of murder though.
I agree Joe and the way the stories are framed, using the current guidelines, means the stories of people who have died as a result of the mental health system are used as a call for more screening, diagnosing and mental health treatment.
One of the problems with censoring the media around suicide is that the associations with both SSRIs and cannabis are not highlighted. I think of you (and so many other mothers) every time I see the claim that cannabis is not associated with any harms. I know that is not your experience or the experience of the mothers of so many other children who have died from suicide after using the drug.
Much love to you and the memory of your lovely son.
Thanks for the links Neil. There is far more evidence of a causal association between SSRIs and suicide than of links between media reporting and suicide. As you and I know only too well though, it is ideology not science that drives thinking, policy and practice in this field.
I’m familiar with the studies you mention but don’t consider they establish a causal relationship between suicide reporting and suicide deaths. They fail to control for a number of factors that could affect suicide rates – social and economic factors as well as factors Niederkrotenthaler has identified in more recent studies including train speed and frequency and the use of stations for drug deals. Correlation is not causation.
The countries where I found guidelines around not mentioning specific drugs or brands are Korea, Japan and Australia but there may be others.
I guess we will have to agree to disagree on whether the evidence for suicide contagion )the Werther Effect) is convincing. My view obviously is that it is very flimsy and that theories such as homophily are far more convincing.
Just wanted to say that many of us who are survivors of suicide loss are also survivors of our own suicide attempts. After my son died as a result of prozac induced suicide, I made three medically serious suicide attempts. It would be a shame to suggest that those of us who watched our children tortured and killed by psychiatry and in the aftermath were forcibly detained and medicated and attempted suicide do not have a ‘survivor’ perspective to offer. We have had to fight very hard to be heard. In my country it is perfectly legal to speak out about attempted suicide but an offense to talk about the medication induced completed suicides of our children.
Thanks for this Sera. My suicide prevention organisation CASPER has a policy of not only not accepting Pharmaceutical company funding but not accepting government funding. Few people would understand how hard this is – not being paid for months and having to sleep on other people’s floors to survive – but this article highlights how important it is and why we make the sacrifice. Funding influences philosophy and practice and can corrupt the best of intentions.
One of the most powerful and effective things psychiatrists could do to educate the public about these drugs is to challenge their colleagues publicly when they state that they do not cause suicide or violence. In Ireland, high profile psychiatrist Patricia Casey who is a paid speaker for Lundbeck Pharmaceuticals, states that there is no evidence these drugs cause either suicide or violence. Mothers whose children have died and/or killed others soon after being prescribed the drugs are left to challenge her while psychiatry is silent. And of course we are dismissed because we are not medically qualified. We need some back up from psychiatrists (apart from Prof David Healy who carries the burden of challenging other psychiatrists almost single handedly) who are willing to make statements such as the one in this blog. Sadly the majority of the over 2 million people who saw Patricia Casey speak about these drugs on Irish television last week will never read Mad in America.
Thanks for your support David. For psychiatrists to conduct a mental state exam the child psychiatry killed is a little like having your child’s rapist criticize her for wearing a short skirt. Neither my son nor Shane Clancy were diagnosed with any mental disorder by the medical professionals who assessed them because they did not have one.
Its ironic that people tell us “at least they can’t take away your memories.” Well with the benzos they give us after our kids die they can (which of course is another story altogether) but they can also taint those memories with their ‘diagnosis after death’ nonsense.
Thank you both. Dead people have no legal rights – they can’t be defamed nor do they have any privacy rights. That makes them fair game. What was done to our children by psychiatry when they were alive is appalling, to continue to use them to further the agenda of psychiatry and big pharma by suggesting their deaths were as a result of undiagnosed mental illness rather than SSRI induced suiciality, is despicable. As their mothers we will protect them from further abuse until we take our last breath. Your support means so much.
We have so much in common Sarah. I am so sorry. In Toran’s case there were some significant departures from usual practice including telling Toran to stop his meds on a Friday, drink up to six bottles of beer a night over the weekend and resume the meds on each Monday. His doctor also forgot to ask if he had any general medical conditions or was on any other meds – he was on a migraine med that interacts with prozac and can cause serotonin syndrome. The doctor failed to read Toran’s file before medicating him despite the file recording a severe adverse reaction to prozac previously which included suicidal thoughts and behaviours. These along with the doctor admitting Toran was not depressed and his colleagues testimony that when I raised the issue of side effects he told me to ‘stop reading research and trust his professional judgement’ are, I hope, sufficient to prove a significant departure from the practice of other psychiatrists and coupled with the causality assessments from my government and mylan showing the causal link between the drug and Toran’s suicide in my view reach the threshold. I believe a jury would find him guilty – I just hope the police will give a jury the chance to hear the evidence and make a decision.
Thanks Sally. I will never forget how shocked I was to discover, months after my son’s death, that the drug he was prescribed was not approved by our regulator for children. I blamed myself for a long time – why didn’t I ask if it was approved as safe and effective for children – but the reality is that I like most people had no idea that off-label prescribing was legal and pervasive. I trusted my government and my doctor.
Richard I’ve read your paper and wonder if any analysis was done on the proportion of those who died from suicide with a diagnosis of psychogenic pain who were treated with SSRIs or other psychiatric drugs known to increase suicide risk? While it is plausible that the diagnosis led to feelings of hopelessness / worthlessness / sadness that in turn led to depression, it is more plausible that psychiatric drugs caused the suicide as in my son’s case.
Thank you. My son’s death meets all the ingredients of the offence of manslaughter in New Zealand. According to the police though I need a higher standard of evidence given “juries never convict doctors.” I believe the evidence I have provided to the police including two causality assessments showing the drug was the most likely cause of his death meet that standard and want the police to let a jury decide themselves. Should hear soon whether the police are willing to take action.
Hi James. I am regularly asked by children about my son’s death which was a suicide by hanging. I am also often asked about cremation as I have his ashes at home. Generally these questions come from children aged 6 to 10 years. Do you have any advice on the best way to respond when children ask me how Toran died and what his ashes are?
Hi Peter. I don’t disagree that ecological studies have problems, not only with between country confounding but with issues around the direction of the influence of each of the factors shown to have an association. I note however that across the western world, ecological studies are used to inform policy such as that which governs media reporting of suicide (and in my country makes me a criminal for talking about my son’s suicide). This evidence is at least as strong as the ‘copycat suicide’ evidence and yet is being ignored by governments in developing suicide prevention policy. I, like you, hope that more robust studies will be conducted but in the meantime, and in the spirit of the precautionary principle if nothing else, I think these are worth highlighting and using to generate discussion.
I wish I’d had a champion like you when psychiatry got their hands on my child and killed him. It is too late for me but if there is anything I can do from over here to support Justine’s parents please let me know. I feel pretty useless saying that because all I have is a loud mouth and the recklessness that goes with having nothing left to lose but if those can be of any use…
A factor of being a bereaved mother and having gone through 10 government enquiries and the longest inquest in history – no one believes a mad mother so you have to spend your life quoting others so people will listen to you! My research project for my MBA was on ethical boundaries in competitor intelligence gathering and i learned a lot about how to get information people would rather you didn’t have. When Toran died I felt like my study had been a total waste of time I could have spent with him but now I feel like it has its uses 🙂
The author didn’t but the university ethics department wrote to me and said they would review the study. Haven’t heard back so thanks for the reminder – will follow up.
Hi Vicki. I’m a mother whose child died from suicide 15 days after being prescribed prozac. Both my government and Mylan Pharmaceuticals have conducted causality assessments and determined the causal relationship between my son’s death and the drug he was taking as ‘probable.’
I established and am CEO of CASPER a charitable organisation run by families bereaved by suicide for families bereaved by suicide. Amongst our many services, we support families to present their cases at coronial inquests with a view to getting recommendations in relation to psychiatric drugs that may prevent more children killing themselves.
We are assisted in our work by a small number of psychiatrists who, free of charge, review our childrens’ medical files and provide expert evidence to the court in those cases where he believes there is a causal link between the drug and the suicide or where breaches of best practice around diagnosing and prescribing practice need highlighting.
Is this an area of work you are, or could see yourself involved in?
Great post Ted, thank you. No point me saying much as I would be repeating myself and repeating what you have said. I do want to challenge the notion that without diagnosis there would be no treatment. In my country psychiatrists are salaried employees of the state and do not have to bill based on diagnosis. My son had no diagnosis but was medicated and died. In the past 5 years, 75% of the children under 18 years who have died from suicide under the care of this health board, had no diagnosis but were on meds.
Yes Chris and where biomarkers are used to identify those who may be positive drug responders rather than those who are at elevated risk. Look forward to reading your blog.
My blog provides information and my opinion about psychology globally, not a country by country analysis. I am very aware that UK clinical psychologists called for an abandonment of psychiatric diagnosis and the “disease model” last year. I am also aware that that this has done little if anything to halt the use of this paradigm by psychologists around the world.
Contrary to your assertion, I explicitly stated in my blog that the number of prescribing psychologists is small. I provided evidence that psychologists in the US and other countries (including my own) are lobbying strongly for prescribing rights and offered the opinion that they will gain them and that this will change the face of psychology. Whether this will happen in the UK remains to be seen and is something I did not offer an opinion on.
We may have to agree to disagree about the current and potential links between psychology and big pharma. I believe they are strong and growing and provided evidence to support this position. You may wish to present the evidence that I am incorrect about this rather than merely stating your view that the links are “not significant.”
In response to your question about my motivation in writing this blog it is the same as it is with all the blogs I write – to encourage informed debate on issues related to supporting those in emotional distress. My vested interest is in creating a world in which my child would have been supported rather than medicated and would not have ended his life by suicide. I am always very explicit about my agenda.
In reference to your claim I have misrepresented your profession, I note that psychology exists outside of the UK and suggest that its practice in other jurisdictions may have more influence over its practice globally.
Finally while you claim that “psychologists here in the UK do not work within the psychiatric “disease model and the DSM”, the British Psychological Society statement on the open
letter to the DSM-5 Taskforce “recognizes that a
range of views exist amongst psychologists, and other mental health professionals, regarding the validity and
usefulness of diagnostic frameworks in mental health in general, and the Diagnostic and Statistical Manual (DSM) of the American Psychiatric Association in particular.” http://www.bps.org.uk/sites/default/files/documents/pr1923_attachment_-_final_bps_statement_on_dsm-5_12-12-2011.pdf
This suggests that your views, while of course entirely valid as opinion, do not represent all UK psychologists.
I have reported on public perceptions of psychiatry as per a survey conducted by the WPA, not given my personal opinion of psychiatrists. I do have a very poor view of the competence of psychiatry as a profession, one I might add that surveys show is shared by their colleagues in other medical specialties, patients and the general public. I agree that psychiatrists are ignorant rather than evil but note that my son is just as dead whether his psychiatrist operated from a position of ignorance or ill intent.
Of course emotional distress is real. In my view and my work this means environments need alteration not that a person’s broken brain needs ‘fixing’ with a drug. How is my approach more stigmatising than the label and drug approach?
You exhort me to take some action but are perhaps unaware that after my son’s prescription drug induced suicide I sold my home and everything I own to devote my life to changing the way emotional distress is viewed and addressed and to prevent suicide. I currently sleep in the bottom bunk of a friends 6 year old daughter’s room, have everything I own in the world in two suitcases and work 24/7 lobbying government, supporting families with suicidal kids or kids who have died from suicide. That doesn’t make me a hero but it makes me someone who doesn’t need a lecture about taking action to prevent suicide, which in my country has reduced by 20% since my organisation started.
Haha! No, not from Texas. I’m a Kiwi who is currently living in Ireland. I used to date a Texan who was frequently bemused by things I said (although to be fair that may not be entirely about geography). We were once cleaning out the car and I told him to biff something in the boot. He still laughs about that 8 years down the track while I have no idea what he finds funny.
Sera, your comments on reframing the question of how to motivate someone are really important and have helped me formulate some new thinking around helping parents of suicidal kids. Thank you.
Thank you so much Alex. Its such a gift to me when people tell me they believe Toran’s consciousness survived his death and are not just humouring me. Thank you so much.
I wrote a blog a while back on why anger is a positive emotion and agree with you totally on that. My anger, as much as my sadness, is a measure of my love.
Thanks Duane. When I was a child and asked questions about life and the universe my mother would respond “because that’s the way God made it.” When i ask questions of psychiatry now I get a similar response with God replaced by an academic psychiatrist, the DSM or ‘clinical experience.’ At least my mum made it clear she was trying to fob me off while psychiatrists try to make it sound like they know the answers.
Thanks Ted, I feel like we are on the same page too. Before Toran died I believed dead was dead and yet when it happened I could not believe that his energy, his laughter, his love had just ceased to exist. Quantum theory, which I knew nothing about but he had mentioned to me a week before his death, helped me find hope that there is a possibility his consciousness survived death. That possibility allows me to sustain the hope that is necessary to the maintenance of life – without it, I would have ended my life. Quantum theory is one of the many gifts my son gave me and has become a very important part of my life.
I find it hard not to get stuck in the negative and within the limits of warning others about the system that led to my son’s death. The challenge I have set myself is to give equal focus to creating a world in which my son could have lived.
I live in an ethnically diverse nation too but I find I’m often thinking in ethnocentic ways that my fellow New Zealanders from ethnic minorities wouldn’t fall into, so I think I do mean ethnocentric.
I agree that the marketing plans of pharmaceutical companies extend beyond their use of doctors as a distribution channel and recently wrote about the way in which pharmacists are being engaged in drug marketing but the scope of this blog was confined to my thoughts on the reasons behind the changing relationship between pharma and doctors.
I think its slightly ethnocentric to give such weight to the impact of DTC advertising and patient advocacy groups. It ignores the 26% growth in emerging markets against 7% decline in profits in Europe and 2% growth in America. In Asia, India and other emerging markets there is no DTC advertising and there are no patient advocacy groups. Consumers get their information from doctors as, I would argue, the majority in traditional markets do too.
Thanks Wayne. I agree that Motivational Interviewing should be about empowerment and informed choice but in the literature on motivational pharmacotherapy there are so many references to overcoming resistance to medication and ignoring patient reports of adverse reactions which don’t fit with these constructs that it appears to me it is being used for manipulation rather than empowerment.
Thanks Steve. When I first started blogging for MIA I struggled to find a picture which wasn’t taken by the media and showed me in floods of tears. This one was taken on a friends phone and my other friends give me such a hard time about it 🙂 Recently a magazine did a story on Toran and I and took this photo amongst others which finally shows me with my actual hair colour and no tears!
Hi Chaya. No insurance companies involved in New Zealand. Our government buy the drugs and we pay a small fee for our prescription. I paid only $3.00NZD for my son’s 3 month supply of Prozac. Incidentally I wrote to the drug manufacturer after Toran died (and they admitted the drug caused his suicide) asking for a refund citing comsumer legislation around refunds if the product was not fit for purpose. They refused my request.
I’m so sorry Iarmac. The cannabis / suicide link is only too clear in the work I do with CASPER and I can only imagine what it must be like to hear people talk about how smoking it is a ‘victimless crime.’ I hate the stuff because I see it inducing younger and younger children to take their lives.
Two weeks out from Christmas I’m sending you much love and wishing you the strength you and I know it takes to get through the holiday season without our childrens’ physical presence.
Because I have a very short attention span, I’ve had a lot of career changes and for a period of five years to 2007 was the manager responsible for gambling regulation for the North Island of NZ. Around the world the gambling industry is associated with money laundering, drug dealing and loan sharking, children are left unattended locked in cars while their parents gamble and those who cannot afford it are offered incentives to continue gambling until they lose everything.
In relation to detention, yes I think sometimes people might need to have their freedom restricted for periods of time but just as with a child who needs to be restrained from running out on the road, the appropriate place for this to occur is within families and communities, not institutions which employ the coercive power of the police.
A few weeks after my son died, I was handcuffed by five police officers and involuntarily committed to a psychiatric hospital on the grounds I was a risk to myself. I was put in restraints and had my clothes cut off me in front of two male security guards. As a result of the police action, I was x-rayed for a suspected broken wrist and extensive bruising was photographed. When I asked for a patient advocate, the nurse with the scissors in her hand laughed and said “that’s what nurses are – I’m your patient advocate.” I was not forcibly medicated but that experience has left very deep scars. I needed family and friends to be with me. I needed them to let me talk about the trauma of finding my only, deeply loved child hanging from a noose. I needed to be given hope for the future. I was intensely suicidal and a serious risk to myself but I did not need to be locked up in an institution, I needed to be in my own home, cared for by people who knew and loved me.
I think the problem with your argument is this. First, there are many people in society who pose a risk to themselves and others but we apply different standards and protections around detention for those who are labelled mentally ill than those who are not. Under criminal law, the police do not go into someone’s house, ask them a series of risk assessment questions and then lock them up to prevent them committing a crime in the future. Even where there is evidence they may have already committed a crime, the police must have very strong evidence to detain them pending trial and then prove beyond reasonable doubt that they are criminals before detention orders are considered. For those assessed as mentally ill via an entirely subjective assessment process which has been shown to have little validity or reliability can see them detained indefinitely. No proof of mental illness is required and if the test was beyond reasonable doubt, no one would ever be diagnosed.
Second, in practice, compulsory detention is almost invariably combined with compulsory pharmacological treatment. Separating the two ignores the real world experience of involuntary commitment.
Third, Professor Roger Mulder of Otago University has recently published a paper which presents evidence that suicide risk assessment and involuntary commitment are conducted primarily to manage clinician anxiety rather than patient safety.
Fourth, research is very clear that psychiatric hospitalisation is a key risk factor for suicide and violence rather than being a risk prevention measure.
If as a society we are prepared to manage the risk of non-mentally ill people perpetrating harm on themselves and others through means other than preventative detention, I wonder why we would not afford the same rights to those experiencing distress.
In my view, if we provided places of support and safety where those who are sad, scared, worried or angry, those dealing with violent or self destructive feelings as a result of negative life experiences or drug use, places where people were given love and hope and compassion, we wouldn’t need laws detaining them. They would want to go there.
Yes detention and treatment are separate entities but both are harmful and there are alternatives to both which are more humane and manage risk more effectively.
I get quite a lot of tv, radio and print media exposure through CASPER on the issue of suicide and psychiatric drugs but don’t get to air my views on wider issues around psychiatry anywhere except on MIA and in cafes where my friends and I solve the problems of the world. Perhaps its time for MIA TV where we bloggers can preach to the world. Maybe we could pass legislation mandating MIA TV viewing for everyone over the age of 18. People who refuse to rip up their prescriptions could be detained at the pharmacy maybe and forced to watch us for an hour a week.
Just to let you know that I’ve had an email from the ‘institutional official in charge of human research protections’ at Stonybrook University advising that the university will be reviewing their files on this study and will get back to me when the review is complete. Will keep you posted. Maria
Haha! I’ve just sold everything I own and am heading to Ireland to set up a branch of CASPER there. After that, America is a distinct possibility. At CASPER we only employ troublemakers so I’ll look you up when I get there 🙂
I love Cosgrove’s argument that critics of industry are actively recruited on the various panels. If that happened, and those with conflicts were disqualified then the DSM-VI panel would have no psychiatrists and would be written entirely by the critics of the DSM-V 🙂
And yet the families I work with didn’t have lots of time. Their children died from SSRI induced suicide within days of being prescribed. In my son’s case, 15 days. In light of other comments you have made I feel the need to add that the causal relationship between the drug and his suicide was assessed both by our regulator and the pharmaceutical company as ‘probable’ so I am talking causation not correlation.
Thank you so much for sharing your mum’s writing with me. I connect with everything she says – that’s my life too. I would so love to sit down and have a coffee with her! Just reading her post made me feel so less alone. Tell her thank you 🙂
They did a DNA test on my son after he died. He was an intermediate metaboliser with mismatched allelles. Lot of good finding that out did me after his death. Toran was a victim of the Russian Roulette psychiatrists play with our children when they prescribe these drugs.
I agree with you Duane regarding the soul and thanks for pointing that out. I hope we get to meet with him too. I’m trying to persuade Leonie we should ride Donkeys to the Vatican like another mother whose child was sacrificed but she seems strangely resistant 🙂
As a mother whose child killed himself 15 days after being prescribed a drug that both the manufacturer and my government have admitted is the most likely cause of his suicide, I of course agree with you totally. I am now told that the prozac he was given is close in chemical composition to methamphetamine.
Had my son taken a street drug he would have known he was taking a risk. Because it was a prescribed ‘medicine’ he did not. The drug didn’t behave differently because it was handed out by someone in a white coat rather than a jacket with a gang patch.
Lol! You should know that Leonie Fennell and I are working towards getting an audience with the Pope. Yes seriously. If it is a sin to usurp God’s role by killing yourself, is it not also a sin to usurp God’s role by playing with the chemicals in God’s greatest creation – the human brain? We want to ask Pope Francis about the churches position on this.
Any system which has a basis in the notion that normal human distress renders someone defective and practices the commercialisation of a cure for being human (often fatally) has, in my opinion, no hope of being fixed and should be scrapped. There are good, evidence based alternatives located within families and communities rather than clinics and research facilities. Psychiatry is to medicine what orphanages are to families.
Oh I’m nowhere near past the anger believe me. I’m absolutely white-hot furious. I guess doing the hunour thing helps me redress the power imbalance dynamic a little. These people take themselves so incredibly seriously and I don’t think my anger touches them at all but my sarcasm may. Humiliation and not being seen as gods are things they are afraid of. Anger they just pathologise. My son was a specialist in sarcasm and I think he would appreciate me fighting back that way.
I’m so sorry for your loss Eric and for your brothers loss of his life. The song is simply beautiful and such a lovely tribute. Have tweeted and facebooked it and will put it up on the CASPER website.
Thanks for this Douglas. Those of us who have lost our children to suicide know that nothing heals that particular wound but that a community of concern can allow us to survive the injury.
We have a scheme in NZ known as Accident Compensation, administered by the Accident Compensation Corporation (ACC). It provides for compensation from the government in the event of injury or accident including ‘treatment injury.’ It was designed to make sure we didn’t have to wait years to get to compensation as a result of delays in the Court system. It provides a statuory bar on suing doctors.
The problem is that while the bar applies to families bereaved by suicide, the compensation does not. The best lawyers in the country have told me that despite Toran having died from a treatment injury (on the balance of probabilities) i cannot take a case against his doctor, nor can I get compensation on his behalf from ACC.
In relation to compensation for my suffering, the Act only covers physical injury, not mental injury. Which is why I have a letter from ACC adivisng that if I suffered a strain or sprain injury taking Toran down from the noose, I am covered but if it is ‘just’ the mental trauma of finding him dead, the Act does not apply.
With admissions from the government and Mylan that the drug was the probable cause of Toran’s suicide, I suspect I would be a wealthy woman in the States – particularly as there are no black box warnings here nor patient information leaflets. But in NZ I am left without income or compensation and thrown on the scrapheap, particularly as I don’t have any other children.
Wow! Thank you. In New Zealand there is a statutory bar on taking civil cases against doctors so this is the only way I can expose what they do and try to get some accountability. I so appreciate your support 🙂
I know. How creepy is it that Brendel lists all the information that might be gathered on patients and THEN says ‘and clinically significant information such as suicide plans.’ A total admission that the bulk of information being gathered has no clinical significance and is pure invasion of privacy. I hate the attempt to legitimise it by giving it a name and acronym.
Yep was sectioned twice after Toran died. Found to have no mental disorder both times but that didn’t stop them from locking me up and trying to ‘treat’ my grief. Toran’s suicide was all over the papers and on TV and I was saying in interviews the drug killed him and being sectioned may have been an attempt to undermine my credibility. Would be nicer to think they were genuinely concerned that I may kill myself but sending me home to an empty house with enough drugs to do the job doesn’t seem like very good suicide prevention.
Thanks Richard. In my life, if you don’t laugh you’re going to do a whole lot of crying and using sarcasm helps me laugh at things I’m sick of crying over. As for being thought provoking, I’m still trying to make sense of the world following my son’s suicide and I’m not at the point of having the right answers just hoping to ask some of the right (or at least interesting)questions.
He did Ted, he was pretty mean to me but in retrospect I think it was a good thing that he and I didn’t trust each other. If he’d been kind and respectful to me I probably would have done anything he wanted including taking the mix of TCAs,Benzos and Hypnotics he recommended and a lot of unhelpful stuff around severing attachment to my son. I’m glad that because I didn’t like him or trust him my default position was to be wary of his recommendations and look for flaws in his proposals.
It feels very counter-intuitive to me to be suggesting that warm, respectful, collaborative relationships can be harmful but I guess what I’m trying to say is that when we keep our distance and wait to see whether the therapist is competent not just nice, we keep ourselves a little safer than if we trust too much, too quickly and run the risk of trying to please and being less able to critically assess treatment plans, approaches etc. Sometimes I think the emphasis on therapeutic relationships can be a bit like falling in love with someone totally unsuitable but being blind to their faults or incompatibility.
Really just saying I found this hard to write to and am not sure I’m convinced but thought it was a useful discussion to have.
As a CEO Maria, I know the buck stops with me. I am of course aware that as Mylan’s counsel, you provided Mr Price with advice that guided his treatment of me but as with any legal advice, he could have chosen to reject rather than accept it. That was his choice. Just as it is his choice to lead a company that acts unethically. CEOs do far more than conform with company standards and policy – they shape those standards and policies and they collect large salaries for implementing them. They are therefore accountable for their actions which can and should be challenged. As a CEO, when my behaviour and ethics are questioned, I am not at all threatened by being challenged and happy to engage in discussion around the issues. I think it would be hugely helpful if Mr Price would do the same.
Hi ChelonianRiot. Do you have any evidence to support your statement that suicidality is often the reason mental health treatment is sought? That’s not my experience and I’d be interested to see any evidence that that is the case.
I am so very sorry. To know that our children were tortured and killed is a pain like no other and I’m sorry we share this. I have no doubt you will find the perfect way to honour your son and provide him with a suicide prevention legacy. If there is anything I can do to support you in this don’t hesitate to contact me. Take care, Maria xx
Thank you so much Duane. I don’t think you are over-simplifying things at all. On the contrary, I think the medicalisation of suicide has rested on convincing people that it is a hugely complex issue that can only be understood by ‘experts’ with white coats and prescription pads. Its as simple in my view as making people feel they matter. Kindness, love, respect and acceptance – cheap and effective suicide prevention.
Love it and have just subscribed to your blog. I suspect that in proposing Prodromal Anosognosia you exhibited symptoms of Psychiatric Disrespect Disorder. It may be that your recommendation is on hold pending treatment and remission. Exciting to think our disorders could be DSM neighbours and are likely to become common comorbidities.
My son killed himself 15 days after being prescribed an SSRI by a psychiatric registrar who despite conducting what he considered a thorough assessment, found no mental disorder. At inquest, he told the Coroner that when he was advised that my 17 year old had hanged himself he “couldn’t remember his name or face.” That says much about psychiatry. The fact he would say it in front of the mother of his dead ‘patient’ says just as much.
1. universal awareness of the risks of SSRIs
2. fully informed consent to their use
I am far more interested in these things than I am in whether Sundance’s test works or not.
I will take any opportunity to raise awareness of risk and promote fully informed consent to as broad an audience as possible. Those who dismiss Toran’s story as anecdotal or as an idiosyncratic response and CASPER as an anti-psychiatry lobby group may be less quick to dismiss the science discussed in this discussion.
To sit back and wait for anything, including the success of Sundance, condemns more children like Toran to a horrible, lonely, painful death so waiting is not an option for me.
I am not endorsing Sundance, I am endorsing science and business recognising the harms of these drugs and working to reduce those harms. It makes a nice change from science and business promoting their use and denying they cause harm.
Thanks Kim and Sam. The last couple of days, and yesterday in particular have been difficult to say the least. My heart is broken. I yearn for my son with an intensity I can’t describe. I spent most of the day in bed yesterday, unable to face the world which without Toran feels so lonely and empty. Today I was out doing a suicide prevention education session in his memory. So…I have missed this exchange and having read it quickly now, need to read it again before I can make any sensible response. But not tonight. Tonight I am going to do absolutely nothing 🙂
Thanks Rachel, wise advice and I appreciate it. I understand sundance have been in contact with David Healy and are hoping to engage him in reviewing the data. I am hoping they can make this happen. Those of us who are cautiously optimistic about this research have also talked to David who I believe supports the idea of testing for adverse reactions (rather than testing for therapeutic response)as does Dr Dee Mangin who we at CASPER also work with. Their professional opinions are ones we respect completely and whose views will influence our own.
I have discussed with Sundance providing my son’s post mortem blood sample for this project and would not do so without fully exploring all the issues you raise and obtaining clear written agreements around data transparency and independent review. I would be devastated if Toran’s DNA was used to perpetrate any fraud or harm.
I hope the comment from Sundance diagnostics, posted elsewhere and copied here, explains the initial focus on SSRIs
“The reason to start the project with SSRI’s is a scientific one. It is imperative that the first whole genome sequencing study for heightened drug risk is successful. If the science is questionable, studies for genetic prediction of drug risk with other drugs will be hampered. The critical need in this type of study is to find exceptionally well diagnosed patients with extensive and complete medical records. With such, we can defend the results of our research. Well diagnosed patients with complete medical records are much easier to obtain for suicidal ideation than for any other drug side effect at the moment. That is why we are starting with the risk of suicidal ideation. We have the DNA prepared and ready to sequence for the first SSRI we will study. The cost of the study and the confirmatory trial will be anywhere from $12 to 20 Million. With success we will move to the next drug. Predictive genetic markers may be consistent througout all drugs in the SSRI class. If we find that to be true, our research with SSRI’s may go much more quickly and we can move on then to other drugs.
I run a suicide prevention organisation Belinda and am certainly not under the illusion that everyone who kills themselves is taking an SSRI.
Sundance has been very clear to say that regardless of the risk rating returned by their test, these drugs carry a risk of suicide for everyone who uses them. Here’s a link to an interview with the test developer if you want to see what they are saying publicly http://fiddaman.blogspot.co.nz/2013/03/antidepressant-suicide-gene-solution.html.
I think you will find that your statement that “This company is doing this, because they believe totally that these drugs save lives and that we need to actively promote and encourage their use” is completely incorrect. If that were the case, they would be developing a test showing genetic markers for therapeutic response, not suicide risk.
Currently available DNA testing would not show that “99% of people will not be adversely affected” so I’m not sure why you would think that this test would lower, rather than raise the percentage of people shown to have elevated risk.
You have every right to be skeptical about this and to challenge and question it. As I said in my blog, I had many reservations initially too. I’ve been fortunate to have months of being able to ask them questions directly and one of the reasons for blogging about this was to give other people the opportunity to do the same. As you’ve seen, Sundance CEO Kim is happy to respond.
My personal strategy for educating the public about the risks (and lack of benefit) of these drugs is to share my son’s story, run free public education sessions, get in front of key opinion leaders and politicians in my country and conduct research. I believe I make a difference but I don’t believe for a minute that the average person is going to take as much notice of me as they are of their doctor. I believe that while for some people Toran’s story is compelling, the majority believe it couldn’t happen to them.
While I do my little bit, I support everyone else who is doing their little bit too. Sundance and their test are not the key to abolishing SSRI harm. They are one part of the multi-pronged approach to this issue.
Doctors will never tell their patients my son’s story but they will give them test results that include information that clearly states the drugs carry a risk of suicide. And people who think that what happened to all the suicide victims couldn’t happen to them will see their own personalised results and realise that it could.
Yes there are risks associated with this process but there are risks in not implementing new strategies too. Antidepressant prescriptions are increasing by 10% per annum in my country. We have the highest rate of youth suicide in the english speaking world. I think we have to be pragmatic as well as principled and for me, saving lives will always have priority over winning against pharma.
Agree with what you say Stephen except the bit about it needing tons of money. Major marketing campaigns were not needed to abolish slavery or to give women the vote. Public education can be achieved in lots of ways and we can’t let a silly thing like being broke stand in our way.
One of the things I like about Sundance’s approach is that they don’t pussyfoot around suicide and violence with medical terminology. They name these drug reactions for what they are rather than talking about suicidal ideation or agitated depression they just say these drugs cause suicide and violence.
Personally I’m glad a corporation is fronting up with some money to confront the reality of what these drugs do to people. Its criminal that individual activists, many of whom have been financially devastated by their experience of psych drugs, sell their homes and assets and work for nothing to mount this challenge.
Why spend more money on something no better than a sugar pill? That’s a question for Regulators who in my country fund 16 different antidepressants, none of which work, all of which cause harm.
Why spend money raising awareness of the dangers of these drugs? Because people will continue to use them until they understand there are safe, effective alternatives and continue to be harmed.
Personally I hope Sundance spend a fortune on this and more importantly make a fortune on it. Because then they will develop tests around antidepressant withdrawal and drug use in pregnancy and in specific ethnic groups being targeted by pharma and a heap of other areas that need exposing.
Thanks for this. I run a suicide prevention charity which responds to suicidality using indigenous and sociological rather than medical approaches. The only thing I disagree with in your article is the statement that we can’t know why some with suicidal thoughts end their lives and why some don’t.
My child killed himself 15 days after being prescribed Prozac. Both my government and Mylan Pharmacueticals conducted causality assessments and found the drug to be the probable cause of his suicide. In some cases, the reason people end their lives is because of the pharmacological treatment they are given.
The Joiner model also explains some suicides as being a product of social isolation, a sense of being a burden and the ability to overcome the survival instinct through either the use of drugs or desensitisation to pain and suffering.
My charity’s work suggests that along with these factors, those who die are distinguished by their lack of self efficacy. They do not believe they have the power to change the circumstances causing their suffering. In our experience, no matter how bad the situation, if people believe they are capable of changing their circumstances through their own efforts, they will survive.
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Hi Jolie. Yes my son made a choice. He chose to end the torture of antidepressant induced akathisia. Much as he would have chosen to cut off his arm had it been trapped on a railway track with a train approaching. A choice he would never have wanted to make but one over which he saw no other choice.
My son did not ‘commit suicide.’ People commit sins or crimes – his taking of his life was neither. My son died by suicide with both my government and Mylan Pharmaceuticals assessing Prozac as “the most likely cause” of his death. He was neither a sinner nor a criminal. He was a victim.
You suggest my child should not be spoken of in total sympathy. It is hard for me to imagine what about a child being tortured by medical professionals he trusted and going through the terrifying process of making a noose and hanging himself in order to end his pain deserves judgement or criticism.
I think that you are suggesting that my expressing my love and sympathy for Toran sets a bad example to others. You perhaps believe my message should be that if you kill yourself your parents will stop loving you and will publicly condemn you. You perhaps believe that this would act as a deterrent to suicide. Let me be clear about a couple of things. First, my son is not defined by how he died. He is defined by how he lived. Second, I HATE suicide. I hate what was done to Toran and I hate what he did to himself. My son was a child any mother would be proud of, his death is a death any mother would hate passionately. I will love my son forever. I will hate suicide forever. I will never condemn my son for being a victim of iatrogenic suicide.
Two years after my son died, my sister died during chemotherapy treatment and a blood transfusion. It has been acknowledged that her death too was iatrogenic. My sister could have chosen not to have treatment for the leukemia she was diagnosed with. Should i also condemn my sister for her choice? Should i stop loving her because she chose to accept treatment that killed her? Am I setting a bad example by publicly saying I love my sister?
Finally thank you for your good wishes. They are appreciated.
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Do you have links to those studies Steven? I’d be really interested to read them.
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I want to thank Michael for an article that taught me so much and to comment on the concept of failure as a positive.
As a mother and a teacher I have spent my life promoting the idea that failure is one of our greatest achievements. I have never seen failure as something to be afraid of but rather something to be celebrated. I don’t think it makes us any less worthy of admiration or respect, takes away from our successes or defines us as anything other than brave, forward-thinking and ambitious. Small people set achievable goals, heroes like Thomas Szasz set huge ‘not achievable in my lifetime’ goals and analysis of why they are not achieved overnight and meet so much resistance teaches those to whom the torch is passed how to get closer to success. Failure is our greatest teacher and thanks to Thomas we are all wiser and closer to achieving the change he wanted to see in the world.
I personally have learned far more from failing to reach an ambitious goal than from succeeding in smaller ones. If I’m not failing regularly, I suspect I am being complacent and not challenging myself enough. I relish failure as presenting me with opportunities and sometimes inspiring more successful efforts in others.
Of course Thomas Szasz failed. My child would not have been told he had a chemical imbalance, given drugs to fix it and violently killed himself because of those drugs, had Thomas succeeded. I would not have been thrown into a psychiatric institution following his death against my wishes. Had Thomas succeeded, none of us would be here on MIA. Does that make his achievements any less worthy of recognition? Of course not. He failed because he promoted ways of thinking and behaving that will change the world, benefit the masses and undermine the privileged. He failed because he was great and had a vision beyond his peers. As Michael points out, his failure says little about him but speaks volumes about his detractors, our society and what is needed to achieve lasting and effective change. Is changing the world ever achieved in one person’s lifetime or do the big humanity-changing goals have a longer timeframe before they are truly bedded in?
My goal is to eradicate suicide. I will be remembered as a failure. On the back of my failure though, lasting rather than superficial, short-lived change may be made and as such my failure and my success are intertwined. I’m no Thomas Szasz and no one will write such a thoughtful, thought provoking article when I die as Michael has but if someone talks about my failures, I’ll feel like I’ve succeeded because my work and ideas will have outlived me.
I think it is imperative that we recognize that as a movement aimed at ending coercive psychiatry we are failing. Yes we need to celebrate our successes and acknowledge our heroes but if we are afraid of admitting that we are not achieving the change we seek or critically appraise the efforts of our leaders, then I don’t think we’ll ever get there. Let’s not delude ourselves or be afraid to honestly evaluate progress towards our goals. Being afraid to acknowledge that we have not yet succeeded would, in my view, be our biggest failure.
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I agree. The state has too much vested in keeping patients vulnerable and afraid to have any interest or ability in the empowerment of those involved in the system. Demand for change would need to come from the public and be driven by those of us who have been harmed. Sadly the myth of the violent, irrational mental patient who is a risk to society and the myth that psychiatrists are practicing evidence based medicine serves to make the average person on the street comfortable with human rights abuses within psychiatry.
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Hi Alix
I accept totally that people make mistakes and psychiatrists are no different from anyone else in that respect. What I’m concerned about is that many standard practices in psychiatry are nothing more than abuse and many psychiatrists routinely engage in abusive practices for which there are no challenges and no accountability. Making mistakes is one thing…deliberate abuse is another and that’s what I think needs addressing.
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I couldn’t agree with you more. The New Zealand police are currently reviewing the evidence in relation to my son’s death as I have submitted it constitutes manslaughter. I’m waiting for the police to complete their review and advise whether they are laying criminal charges against the psychiatrist. Cross your fingers for me 🙂
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Thanks Darryl
The evidence for copycat murder is much stronger than for copycat suicide – primarily because murderers can be interviewed about what influenced their behaviour while those who die from suicide cannot. We don’t see calls for the media not to report on individual cases of murder though.
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I agree Joe and the way the stories are framed, using the current guidelines, means the stories of people who have died as a result of the mental health system are used as a call for more screening, diagnosing and mental health treatment.
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Hi Iarmac
One of the problems with censoring the media around suicide is that the associations with both SSRIs and cannabis are not highlighted. I think of you (and so many other mothers) every time I see the claim that cannabis is not associated with any harms. I know that is not your experience or the experience of the mothers of so many other children who have died from suicide after using the drug.
Much love to you and the memory of your lovely son.
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Thanks for the links Neil. There is far more evidence of a causal association between SSRIs and suicide than of links between media reporting and suicide. As you and I know only too well though, it is ideology not science that drives thinking, policy and practice in this field.
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Hi Bipolardoc
I’m familiar with the studies you mention but don’t consider they establish a causal relationship between suicide reporting and suicide deaths. They fail to control for a number of factors that could affect suicide rates – social and economic factors as well as factors Niederkrotenthaler has identified in more recent studies including train speed and frequency and the use of stations for drug deals. Correlation is not causation.
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Hi there
The countries where I found guidelines around not mentioning specific drugs or brands are Korea, Japan and Australia but there may be others.
I guess we will have to agree to disagree on whether the evidence for suicide contagion )the Werther Effect) is convincing. My view obviously is that it is very flimsy and that theories such as homophily are far more convincing.
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Just wanted to say that many of us who are survivors of suicide loss are also survivors of our own suicide attempts. After my son died as a result of prozac induced suicide, I made three medically serious suicide attempts. It would be a shame to suggest that those of us who watched our children tortured and killed by psychiatry and in the aftermath were forcibly detained and medicated and attempted suicide do not have a ‘survivor’ perspective to offer. We have had to fight very hard to be heard. In my country it is perfectly legal to speak out about attempted suicide but an offense to talk about the medication induced completed suicides of our children.
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Thanks for this Sera. My suicide prevention organisation CASPER has a policy of not only not accepting Pharmaceutical company funding but not accepting government funding. Few people would understand how hard this is – not being paid for months and having to sleep on other people’s floors to survive – but this article highlights how important it is and why we make the sacrifice. Funding influences philosophy and practice and can corrupt the best of intentions.
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One of the most powerful and effective things psychiatrists could do to educate the public about these drugs is to challenge their colleagues publicly when they state that they do not cause suicide or violence. In Ireland, high profile psychiatrist Patricia Casey who is a paid speaker for Lundbeck Pharmaceuticals, states that there is no evidence these drugs cause either suicide or violence. Mothers whose children have died and/or killed others soon after being prescribed the drugs are left to challenge her while psychiatry is silent. And of course we are dismissed because we are not medically qualified. We need some back up from psychiatrists (apart from Prof David Healy who carries the burden of challenging other psychiatrists almost single handedly) who are willing to make statements such as the one in this blog. Sadly the majority of the over 2 million people who saw Patricia Casey speak about these drugs on Irish television last week will never read Mad in America.
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Thanks for your support David. For psychiatrists to conduct a mental state exam the child psychiatry killed is a little like having your child’s rapist criticize her for wearing a short skirt. Neither my son nor Shane Clancy were diagnosed with any mental disorder by the medical professionals who assessed them because they did not have one.
Its ironic that people tell us “at least they can’t take away your memories.” Well with the benzos they give us after our kids die they can (which of course is another story altogether) but they can also taint those memories with their ‘diagnosis after death’ nonsense.
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Thanks Mary. I was interested to receive this statement on new research showing 8-13% of those using SSRIs are at risk of suicide or homicide today
http://www.casper.org.nz/node/303
One might think that biological psychiatrists would find this compelling.
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Thank you both. Dead people have no legal rights – they can’t be defamed nor do they have any privacy rights. That makes them fair game. What was done to our children by psychiatry when they were alive is appalling, to continue to use them to further the agenda of psychiatry and big pharma by suggesting their deaths were as a result of undiagnosed mental illness rather than SSRI induced suiciality, is despicable. As their mothers we will protect them from further abuse until we take our last breath. Your support means so much.
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Disruptive Beahviour Disorder *shakes head*
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We have so much in common Sarah. I am so sorry. In Toran’s case there were some significant departures from usual practice including telling Toran to stop his meds on a Friday, drink up to six bottles of beer a night over the weekend and resume the meds on each Monday. His doctor also forgot to ask if he had any general medical conditions or was on any other meds – he was on a migraine med that interacts with prozac and can cause serotonin syndrome. The doctor failed to read Toran’s file before medicating him despite the file recording a severe adverse reaction to prozac previously which included suicidal thoughts and behaviours. These along with the doctor admitting Toran was not depressed and his colleagues testimony that when I raised the issue of side effects he told me to ‘stop reading research and trust his professional judgement’ are, I hope, sufficient to prove a significant departure from the practice of other psychiatrists and coupled with the causality assessments from my government and mylan showing the causal link between the drug and Toran’s suicide in my view reach the threshold. I believe a jury would find him guilty – I just hope the police will give a jury the chance to hear the evidence and make a decision.
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Thanks Sally. I will never forget how shocked I was to discover, months after my son’s death, that the drug he was prescribed was not approved by our regulator for children. I blamed myself for a long time – why didn’t I ask if it was approved as safe and effective for children – but the reality is that I like most people had no idea that off-label prescribing was legal and pervasive. I trusted my government and my doctor.
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Richard I’ve read your paper and wonder if any analysis was done on the proportion of those who died from suicide with a diagnosis of psychogenic pain who were treated with SSRIs or other psychiatric drugs known to increase suicide risk? While it is plausible that the diagnosis led to feelings of hopelessness / worthlessness / sadness that in turn led to depression, it is more plausible that psychiatric drugs caused the suicide as in my son’s case.
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Thank you. My son’s death meets all the ingredients of the offence of manslaughter in New Zealand. According to the police though I need a higher standard of evidence given “juries never convict doctors.” I believe the evidence I have provided to the police including two causality assessments showing the drug was the most likely cause of his death meet that standard and want the police to let a jury decide themselves. Should hear soon whether the police are willing to take action.
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Yes of course and thanks for your kind words and for the link to your article which I look forward to reading 🙂
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Hi James. I am regularly asked by children about my son’s death which was a suicide by hanging. I am also often asked about cremation as I have his ashes at home. Generally these questions come from children aged 6 to 10 years. Do you have any advice on the best way to respond when children ask me how Toran died and what his ashes are?
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Hi Peter. I don’t disagree that ecological studies have problems, not only with between country confounding but with issues around the direction of the influence of each of the factors shown to have an association. I note however that across the western world, ecological studies are used to inform policy such as that which governs media reporting of suicide (and in my country makes me a criminal for talking about my son’s suicide). This evidence is at least as strong as the ‘copycat suicide’ evidence and yet is being ignored by governments in developing suicide prevention policy. I, like you, hope that more robust studies will be conducted but in the meantime, and in the spirit of the precautionary principle if nothing else, I think these are worth highlighting and using to generate discussion.
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I wish I’d had a champion like you when psychiatry got their hands on my child and killed him. It is too late for me but if there is anything I can do from over here to support Justine’s parents please let me know. I feel pretty useless saying that because all I have is a loud mouth and the recklessness that goes with having nothing left to lose but if those can be of any use…
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A factor of being a bereaved mother and having gone through 10 government enquiries and the longest inquest in history – no one believes a mad mother so you have to spend your life quoting others so people will listen to you! My research project for my MBA was on ethical boundaries in competitor intelligence gathering and i learned a lot about how to get information people would rather you didn’t have. When Toran died I felt like my study had been a total waste of time I could have spent with him but now I feel like it has its uses 🙂
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The author didn’t but the university ethics department wrote to me and said they would review the study. Haven’t heard back so thanks for the reminder – will follow up.
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Hi Vicki. I’m a mother whose child died from suicide 15 days after being prescribed prozac. Both my government and Mylan Pharmaceuticals have conducted causality assessments and determined the causal relationship between my son’s death and the drug he was taking as ‘probable.’
I established and am CEO of CASPER a charitable organisation run by families bereaved by suicide for families bereaved by suicide. Amongst our many services, we support families to present their cases at coronial inquests with a view to getting recommendations in relation to psychiatric drugs that may prevent more children killing themselves.
We are assisted in our work by a small number of psychiatrists who, free of charge, review our childrens’ medical files and provide expert evidence to the court in those cases where he believes there is a causal link between the drug and the suicide or where breaches of best practice around diagnosing and prescribing practice need highlighting.
Is this an area of work you are, or could see yourself involved in?
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Great post Ted, thank you. No point me saying much as I would be repeating myself and repeating what you have said. I do want to challenge the notion that without diagnosis there would be no treatment. In my country psychiatrists are salaried employees of the state and do not have to bill based on diagnosis. My son had no diagnosis but was medicated and died. In the past 5 years, 75% of the children under 18 years who have died from suicide under the care of this health board, had no diagnosis but were on meds.
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Yes Chris and where biomarkers are used to identify those who may be positive drug responders rather than those who are at elevated risk. Look forward to reading your blog.
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Are you familiar with Sundance Diagnostics work on identifying biomarkers for suicide risk? Their trial results are fascinating.
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Here’s a link that explains who Virginia is http://www.newseum.org/yesvirginia/
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My blog provides information and my opinion about psychology globally, not a country by country analysis. I am very aware that UK clinical psychologists called for an abandonment of psychiatric diagnosis and the “disease model” last year. I am also aware that that this has done little if anything to halt the use of this paradigm by psychologists around the world.
Contrary to your assertion, I explicitly stated in my blog that the number of prescribing psychologists is small. I provided evidence that psychologists in the US and other countries (including my own) are lobbying strongly for prescribing rights and offered the opinion that they will gain them and that this will change the face of psychology. Whether this will happen in the UK remains to be seen and is something I did not offer an opinion on.
We may have to agree to disagree about the current and potential links between psychology and big pharma. I believe they are strong and growing and provided evidence to support this position. You may wish to present the evidence that I am incorrect about this rather than merely stating your view that the links are “not significant.”
In response to your question about my motivation in writing this blog it is the same as it is with all the blogs I write – to encourage informed debate on issues related to supporting those in emotional distress. My vested interest is in creating a world in which my child would have been supported rather than medicated and would not have ended his life by suicide. I am always very explicit about my agenda.
In reference to your claim I have misrepresented your profession, I note that psychology exists outside of the UK and suggest that its practice in other jurisdictions may have more influence over its practice globally.
Finally while you claim that “psychologists here in the UK do not work within the psychiatric “disease model and the DSM”, the British Psychological Society statement on the open
letter to the DSM-5 Taskforce “recognizes that a
range of views exist amongst psychologists, and other mental health professionals, regarding the validity and
usefulness of diagnostic frameworks in mental health in general, and the Diagnostic and Statistical Manual (DSM) of the American Psychiatric Association in particular.” http://www.bps.org.uk/sites/default/files/documents/pr1923_attachment_-_final_bps_statement_on_dsm-5_12-12-2011.pdf
This suggests that your views, while of course entirely valid as opinion, do not represent all UK psychologists.
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I have reported on public perceptions of psychiatry as per a survey conducted by the WPA, not given my personal opinion of psychiatrists. I do have a very poor view of the competence of psychiatry as a profession, one I might add that surveys show is shared by their colleagues in other medical specialties, patients and the general public. I agree that psychiatrists are ignorant rather than evil but note that my son is just as dead whether his psychiatrist operated from a position of ignorance or ill intent.
Of course emotional distress is real. In my view and my work this means environments need alteration not that a person’s broken brain needs ‘fixing’ with a drug. How is my approach more stigmatising than the label and drug approach?
You exhort me to take some action but are perhaps unaware that after my son’s prescription drug induced suicide I sold my home and everything I own to devote my life to changing the way emotional distress is viewed and addressed and to prevent suicide. I currently sleep in the bottom bunk of a friends 6 year old daughter’s room, have everything I own in the world in two suitcases and work 24/7 lobbying government, supporting families with suicidal kids or kids who have died from suicide. That doesn’t make me a hero but it makes me someone who doesn’t need a lecture about taking action to prevent suicide, which in my country has reduced by 20% since my organisation started.
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Haha! No, not from Texas. I’m a Kiwi who is currently living in Ireland. I used to date a Texan who was frequently bemused by things I said (although to be fair that may not be entirely about geography). We were once cleaning out the car and I told him to biff something in the boot. He still laughs about that 8 years down the track while I have no idea what he finds funny.
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Sera, your comments on reframing the question of how to motivate someone are really important and have helped me formulate some new thinking around helping parents of suicidal kids. Thank you.
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Thanks Greg 🙂
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Thank you so much Alex. Its such a gift to me when people tell me they believe Toran’s consciousness survived his death and are not just humouring me. Thank you so much.
I wrote a blog a while back on why anger is a positive emotion and agree with you totally on that. My anger, as much as my sadness, is a measure of my love.
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Thanks Duane. When I was a child and asked questions about life and the universe my mother would respond “because that’s the way God made it.” When i ask questions of psychiatry now I get a similar response with God replaced by an academic psychiatrist, the DSM or ‘clinical experience.’ At least my mum made it clear she was trying to fob me off while psychiatrists try to make it sound like they know the answers.
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Thanks Ted, I feel like we are on the same page too. Before Toran died I believed dead was dead and yet when it happened I could not believe that his energy, his laughter, his love had just ceased to exist. Quantum theory, which I knew nothing about but he had mentioned to me a week before his death, helped me find hope that there is a possibility his consciousness survived death. That possibility allows me to sustain the hope that is necessary to the maintenance of life – without it, I would have ended my life. Quantum theory is one of the many gifts my son gave me and has become a very important part of my life.
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I find it hard not to get stuck in the negative and within the limits of warning others about the system that led to my son’s death. The challenge I have set myself is to give equal focus to creating a world in which my son could have lived.
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I live in an ethnically diverse nation too but I find I’m often thinking in ethnocentic ways that my fellow New Zealanders from ethnic minorities wouldn’t fall into, so I think I do mean ethnocentric.
I was interested when I did the research for this blog to find that corruption was a key concern of chinese citizens http://www.pewresearch.org/fact-tank/2013/11/08/inflation-corruption-inequality-top-list-of-chinese-publics-concerns/ and that the GSK scandal was first discussed on a chinese social media site http://www.ft.com/intl/cms/s/0/93990558-2156-11e3-a92a-00144feab7de.html#axzz2ox8Itdux
I have no idea to what extent the chinese public is aware of or concerned about this but suspect levels of both would be higher than in my country.
I agree that the marketing plans of pharmaceutical companies extend beyond their use of doctors as a distribution channel and recently wrote about the way in which pharmacists are being engaged in drug marketing but the scope of this blog was confined to my thoughts on the reasons behind the changing relationship between pharma and doctors.
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I think its slightly ethnocentric to give such weight to the impact of DTC advertising and patient advocacy groups. It ignores the 26% growth in emerging markets against 7% decline in profits in Europe and 2% growth in America. In Asia, India and other emerging markets there is no DTC advertising and there are no patient advocacy groups. Consumers get their information from doctors as, I would argue, the majority in traditional markets do too.
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Thanks Chrys 🙂
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Right no more talking about my hair or I will have to shave it off!
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Thanks Wayne. I agree that Motivational Interviewing should be about empowerment and informed choice but in the literature on motivational pharmacotherapy there are so many references to overcoming resistance to medication and ignoring patient reports of adverse reactions which don’t fit with these constructs that it appears to me it is being used for manipulation rather than empowerment.
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Thanks Steve. When I first started blogging for MIA I struggled to find a picture which wasn’t taken by the media and showed me in floods of tears. This one was taken on a friends phone and my other friends give me such a hard time about it 🙂 Recently a magazine did a story on Toran and I and took this photo amongst others which finally shows me with my actual hair colour and no tears!
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Hi Chaya. No insurance companies involved in New Zealand. Our government buy the drugs and we pay a small fee for our prescription. I paid only $3.00NZD for my son’s 3 month supply of Prozac. Incidentally I wrote to the drug manufacturer after Toran died (and they admitted the drug caused his suicide) asking for a refund citing comsumer legislation around refunds if the product was not fit for purpose. They refused my request.
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Ah thanks Ted. Its mutual 🙂
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Thanks Chrys. Best right back at you 🙂
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I’m so sorry Iarmac. The cannabis / suicide link is only too clear in the work I do with CASPER and I can only imagine what it must be like to hear people talk about how smoking it is a ‘victimless crime.’ I hate the stuff because I see it inducing younger and younger children to take their lives.
Two weeks out from Christmas I’m sending you much love and wishing you the strength you and I know it takes to get through the holiday season without our childrens’ physical presence.
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Hey Jonah
Because I have a very short attention span, I’ve had a lot of career changes and for a period of five years to 2007 was the manager responsible for gambling regulation for the North Island of NZ. Around the world the gambling industry is associated with money laundering, drug dealing and loan sharking, children are left unattended locked in cars while their parents gamble and those who cannot afford it are offered incentives to continue gambling until they lose everything.
In relation to detention, yes I think sometimes people might need to have their freedom restricted for periods of time but just as with a child who needs to be restrained from running out on the road, the appropriate place for this to occur is within families and communities, not institutions which employ the coercive power of the police.
A few weeks after my son died, I was handcuffed by five police officers and involuntarily committed to a psychiatric hospital on the grounds I was a risk to myself. I was put in restraints and had my clothes cut off me in front of two male security guards. As a result of the police action, I was x-rayed for a suspected broken wrist and extensive bruising was photographed. When I asked for a patient advocate, the nurse with the scissors in her hand laughed and said “that’s what nurses are – I’m your patient advocate.” I was not forcibly medicated but that experience has left very deep scars. I needed family and friends to be with me. I needed them to let me talk about the trauma of finding my only, deeply loved child hanging from a noose. I needed to be given hope for the future. I was intensely suicidal and a serious risk to myself but I did not need to be locked up in an institution, I needed to be in my own home, cared for by people who knew and loved me.
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I think the problem with your argument is this. First, there are many people in society who pose a risk to themselves and others but we apply different standards and protections around detention for those who are labelled mentally ill than those who are not. Under criminal law, the police do not go into someone’s house, ask them a series of risk assessment questions and then lock them up to prevent them committing a crime in the future. Even where there is evidence they may have already committed a crime, the police must have very strong evidence to detain them pending trial and then prove beyond reasonable doubt that they are criminals before detention orders are considered. For those assessed as mentally ill via an entirely subjective assessment process which has been shown to have little validity or reliability can see them detained indefinitely. No proof of mental illness is required and if the test was beyond reasonable doubt, no one would ever be diagnosed.
Second, in practice, compulsory detention is almost invariably combined with compulsory pharmacological treatment. Separating the two ignores the real world experience of involuntary commitment.
Third, Professor Roger Mulder of Otago University has recently published a paper which presents evidence that suicide risk assessment and involuntary commitment are conducted primarily to manage clinician anxiety rather than patient safety.
Fourth, research is very clear that psychiatric hospitalisation is a key risk factor for suicide and violence rather than being a risk prevention measure.
If as a society we are prepared to manage the risk of non-mentally ill people perpetrating harm on themselves and others through means other than preventative detention, I wonder why we would not afford the same rights to those experiencing distress.
In my view, if we provided places of support and safety where those who are sad, scared, worried or angry, those dealing with violent or self destructive feelings as a result of negative life experiences or drug use, places where people were given love and hope and compassion, we wouldn’t need laws detaining them. They would want to go there.
Yes detention and treatment are separate entities but both are harmful and there are alternatives to both which are more humane and manage risk more effectively.
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I get quite a lot of tv, radio and print media exposure through CASPER on the issue of suicide and psychiatric drugs but don’t get to air my views on wider issues around psychiatry anywhere except on MIA and in cafes where my friends and I solve the problems of the world. Perhaps its time for MIA TV where we bloggers can preach to the world. Maybe we could pass legislation mandating MIA TV viewing for everyone over the age of 18. People who refuse to rip up their prescriptions could be detained at the pharmacy maybe and forced to watch us for an hour a week.
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I agree but at least they responded to me unlike Dr Carlson who has ignored my email to her completely.
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Just to let you know that I’ve had an email from the ‘institutional official in charge of human research protections’ at Stonybrook University advising that the university will be reviewing their files on this study and will get back to me when the review is complete. Will keep you posted. Maria
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Thanks Neil. I don’t know if I will ever let go of my anger but I haven’t achieved the results you have so maybe one day…
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I have written to Dr Carlson and to the ethics committee who approved the study asking how they justify this. No response yet…
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Valinda I am so sorry – for your loss and for Will’s loss of his life. My email is [email protected] if you want to talk. Much love, Maria xx
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Haha! I’ve just sold everything I own and am heading to Ireland to set up a branch of CASPER there. After that, America is a distinct possibility. At CASPER we only employ troublemakers so I’ll look you up when I get there 🙂
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Thanks Ted. Yes, would love to move to America – make me a job offer and promise not to laugh at my accent and I’ll be there 🙂
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I love Cosgrove’s argument that critics of industry are actively recruited on the various panels. If that happened, and those with conflicts were disqualified then the DSM-VI panel would have no psychiatrists and would be written entirely by the critics of the DSM-V 🙂
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And yet the families I work with didn’t have lots of time. Their children died from SSRI induced suicide within days of being prescribed. In my son’s case, 15 days. In light of other comments you have made I feel the need to add that the causal relationship between the drug and his suicide was assessed both by our regulator and the pharmaceutical company as ‘probable’ so I am talking causation not correlation.
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Thank you so much for sharing your mum’s writing with me. I connect with everything she says – that’s my life too. I would so love to sit down and have a coffee with her! Just reading her post made me feel so less alone. Tell her thank you 🙂
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They did a DNA test on my son after he died. He was an intermediate metaboliser with mismatched allelles. Lot of good finding that out did me after his death. Toran was a victim of the Russian Roulette psychiatrists play with our children when they prescribe these drugs.
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I agree with you Duane regarding the soul and thanks for pointing that out. I hope we get to meet with him too. I’m trying to persuade Leonie we should ride Donkeys to the Vatican like another mother whose child was sacrificed but she seems strangely resistant 🙂
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As a mother whose child killed himself 15 days after being prescribed a drug that both the manufacturer and my government have admitted is the most likely cause of his suicide, I of course agree with you totally. I am now told that the prozac he was given is close in chemical composition to methamphetamine.
Had my son taken a street drug he would have known he was taking a risk. Because it was a prescribed ‘medicine’ he did not. The drug didn’t behave differently because it was handed out by someone in a white coat rather than a jacket with a gang patch.
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Lol! You should know that Leonie Fennell and I are working towards getting an audience with the Pope. Yes seriously. If it is a sin to usurp God’s role by killing yourself, is it not also a sin to usurp God’s role by playing with the chemicals in God’s greatest creation – the human brain? We want to ask Pope Francis about the churches position on this.
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Any system which has a basis in the notion that normal human distress renders someone defective and practices the commercialisation of a cure for being human (often fatally) has, in my opinion, no hope of being fixed and should be scrapped. There are good, evidence based alternatives located within families and communities rather than clinics and research facilities. Psychiatry is to medicine what orphanages are to families.
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Have you considered social prescribing? There is a lot of good evidence to support the prescribing of things other than drugs.
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Oh I’m nowhere near past the anger believe me. I’m absolutely white-hot furious. I guess doing the hunour thing helps me redress the power imbalance dynamic a little. These people take themselves so incredibly seriously and I don’t think my anger touches them at all but my sarcasm may. Humiliation and not being seen as gods are things they are afraid of. Anger they just pathologise. My son was a specialist in sarcasm and I think he would appreciate me fighting back that way.
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I’m so sorry for your loss Eric and for your brothers loss of his life. The song is simply beautiful and such a lovely tribute. Have tweeted and facebooked it and will put it up on the CASPER website.
Take care
Maria
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Thanks for this Douglas. Those of us who have lost our children to suicide know that nothing heals that particular wound but that a community of concern can allow us to survive the injury.
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We have a scheme in NZ known as Accident Compensation, administered by the Accident Compensation Corporation (ACC). It provides for compensation from the government in the event of injury or accident including ‘treatment injury.’ It was designed to make sure we didn’t have to wait years to get to compensation as a result of delays in the Court system. It provides a statuory bar on suing doctors.
The problem is that while the bar applies to families bereaved by suicide, the compensation does not. The best lawyers in the country have told me that despite Toran having died from a treatment injury (on the balance of probabilities) i cannot take a case against his doctor, nor can I get compensation on his behalf from ACC.
In relation to compensation for my suffering, the Act only covers physical injury, not mental injury. Which is why I have a letter from ACC adivisng that if I suffered a strain or sprain injury taking Toran down from the noose, I am covered but if it is ‘just’ the mental trauma of finding him dead, the Act does not apply.
With admissions from the government and Mylan that the drug was the probable cause of Toran’s suicide, I suspect I would be a wealthy woman in the States – particularly as there are no black box warnings here nor patient information leaflets. But in NZ I am left without income or compensation and thrown on the scrapheap, particularly as I don’t have any other children.
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Wow! Thank you. In New Zealand there is a statutory bar on taking civil cases against doctors so this is the only way I can expose what they do and try to get some accountability. I so appreciate your support 🙂
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I know. How creepy is it that Brendel lists all the information that might be gathered on patients and THEN says ‘and clinically significant information such as suicide plans.’ A total admission that the bulk of information being gathered has no clinical significance and is pure invasion of privacy. I hate the attempt to legitimise it by giving it a name and acronym.
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Yep was sectioned twice after Toran died. Found to have no mental disorder both times but that didn’t stop them from locking me up and trying to ‘treat’ my grief. Toran’s suicide was all over the papers and on TV and I was saying in interviews the drug killed him and being sectioned may have been an attempt to undermine my credibility. Would be nicer to think they were genuinely concerned that I may kill myself but sending me home to an empty house with enough drugs to do the job doesn’t seem like very good suicide prevention.
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Thanks Richard. In my life, if you don’t laugh you’re going to do a whole lot of crying and using sarcasm helps me laugh at things I’m sick of crying over. As for being thought provoking, I’m still trying to make sense of the world following my son’s suicide and I’m not at the point of having the right answers just hoping to ask some of the right (or at least interesting)questions.
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He did Ted, he was pretty mean to me but in retrospect I think it was a good thing that he and I didn’t trust each other. If he’d been kind and respectful to me I probably would have done anything he wanted including taking the mix of TCAs,Benzos and Hypnotics he recommended and a lot of unhelpful stuff around severing attachment to my son. I’m glad that because I didn’t like him or trust him my default position was to be wary of his recommendations and look for flaws in his proposals.
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It feels very counter-intuitive to me to be suggesting that warm, respectful, collaborative relationships can be harmful but I guess what I’m trying to say is that when we keep our distance and wait to see whether the therapist is competent not just nice, we keep ourselves a little safer than if we trust too much, too quickly and run the risk of trying to please and being less able to critically assess treatment plans, approaches etc. Sometimes I think the emphasis on therapeutic relationships can be a bit like falling in love with someone totally unsuitable but being blind to their faults or incompatibility.
Really just saying I found this hard to write to and am not sure I’m convinced but thought it was a useful discussion to have.
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You made me laugh out loud Steve – undoubtedly the best treatment for ‘treatment resistant depression.’
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As a CEO Maria, I know the buck stops with me. I am of course aware that as Mylan’s counsel, you provided Mr Price with advice that guided his treatment of me but as with any legal advice, he could have chosen to reject rather than accept it. That was his choice. Just as it is his choice to lead a company that acts unethically. CEOs do far more than conform with company standards and policy – they shape those standards and policies and they collect large salaries for implementing them. They are therefore accountable for their actions which can and should be challenged. As a CEO, when my behaviour and ethics are questioned, I am not at all threatened by being challenged and happy to engage in discussion around the issues. I think it would be hugely helpful if Mr Price would do the same.
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Hi ChelonianRiot. Do you have any evidence to support your statement that suicidality is often the reason mental health treatment is sought? That’s not my experience and I’d be interested to see any evidence that that is the case.
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Haha – thought I was undercover for a minute there 🙂
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I hope you never do and you know I never will.
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I am so very sorry. To know that our children were tortured and killed is a pain like no other and I’m sorry we share this. I have no doubt you will find the perfect way to honour your son and provide him with a suicide prevention legacy. If there is anything I can do to support you in this don’t hesitate to contact me. Take care, Maria xx
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Thank you so much Duane. I don’t think you are over-simplifying things at all. On the contrary, I think the medicalisation of suicide has rested on convincing people that it is a hugely complex issue that can only be understood by ‘experts’ with white coats and prescription pads. Its as simple in my view as making people feel they matter. Kindness, love, respect and acceptance – cheap and effective suicide prevention.
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Love it and have just subscribed to your blog. I suspect that in proposing Prodromal Anosognosia you exhibited symptoms of Psychiatric Disrespect Disorder. It may be that your recommendation is on hold pending treatment and remission. Exciting to think our disorders could be DSM neighbours and are likely to become common comorbidities.
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My son killed himself 15 days after being prescribed an SSRI by a psychiatric registrar who despite conducting what he considered a thorough assessment, found no mental disorder. At inquest, he told the Coroner that when he was advised that my 17 year old had hanged himself he “couldn’t remember his name or face.” That says much about psychiatry. The fact he would say it in front of the mother of his dead ‘patient’ says just as much.
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Morias, I endorse two things
1. universal awareness of the risks of SSRIs
2. fully informed consent to their use
I am far more interested in these things than I am in whether Sundance’s test works or not.
I will take any opportunity to raise awareness of risk and promote fully informed consent to as broad an audience as possible. Those who dismiss Toran’s story as anecdotal or as an idiosyncratic response and CASPER as an anti-psychiatry lobby group may be less quick to dismiss the science discussed in this discussion.
To sit back and wait for anything, including the success of Sundance, condemns more children like Toran to a horrible, lonely, painful death so waiting is not an option for me.
I am not endorsing Sundance, I am endorsing science and business recognising the harms of these drugs and working to reduce those harms. It makes a nice change from science and business promoting their use and denying they cause harm.
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Thanks Kim and Sam. The last couple of days, and yesterday in particular have been difficult to say the least. My heart is broken. I yearn for my son with an intensity I can’t describe. I spent most of the day in bed yesterday, unable to face the world which without Toran feels so lonely and empty. Today I was out doing a suicide prevention education session in his memory. So…I have missed this exchange and having read it quickly now, need to read it again before I can make any sensible response. But not tonight. Tonight I am going to do absolutely nothing 🙂
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Thanks Rachel, wise advice and I appreciate it. I understand sundance have been in contact with David Healy and are hoping to engage him in reviewing the data. I am hoping they can make this happen. Those of us who are cautiously optimistic about this research have also talked to David who I believe supports the idea of testing for adverse reactions (rather than testing for therapeutic response)as does Dr Dee Mangin who we at CASPER also work with. Their professional opinions are ones we respect completely and whose views will influence our own.
I have discussed with Sundance providing my son’s post mortem blood sample for this project and would not do so without fully exploring all the issues you raise and obtaining clear written agreements around data transparency and independent review. I would be devastated if Toran’s DNA was used to perpetrate any fraud or harm.
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I hope the comment from Sundance diagnostics, posted elsewhere and copied here, explains the initial focus on SSRIs
“The reason to start the project with SSRI’s is a scientific one. It is imperative that the first whole genome sequencing study for heightened drug risk is successful. If the science is questionable, studies for genetic prediction of drug risk with other drugs will be hampered. The critical need in this type of study is to find exceptionally well diagnosed patients with extensive and complete medical records. With such, we can defend the results of our research. Well diagnosed patients with complete medical records are much easier to obtain for suicidal ideation than for any other drug side effect at the moment. That is why we are starting with the risk of suicidal ideation. We have the DNA prepared and ready to sequence for the first SSRI we will study. The cost of the study and the confirmatory trial will be anywhere from $12 to 20 Million. With success we will move to the next drug. Predictive genetic markers may be consistent througout all drugs in the SSRI class. If we find that to be true, our research with SSRI’s may go much more quickly and we can move on then to other drugs.
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I run a suicide prevention organisation Belinda and am certainly not under the illusion that everyone who kills themselves is taking an SSRI.
Sundance has been very clear to say that regardless of the risk rating returned by their test, these drugs carry a risk of suicide for everyone who uses them. Here’s a link to an interview with the test developer if you want to see what they are saying publicly http://fiddaman.blogspot.co.nz/2013/03/antidepressant-suicide-gene-solution.html.
I think you will find that your statement that “This company is doing this, because they believe totally that these drugs save lives and that we need to actively promote and encourage their use” is completely incorrect. If that were the case, they would be developing a test showing genetic markers for therapeutic response, not suicide risk.
Currently available DNA testing would not show that “99% of people will not be adversely affected” so I’m not sure why you would think that this test would lower, rather than raise the percentage of people shown to have elevated risk.
You have every right to be skeptical about this and to challenge and question it. As I said in my blog, I had many reservations initially too. I’ve been fortunate to have months of being able to ask them questions directly and one of the reasons for blogging about this was to give other people the opportunity to do the same. As you’ve seen, Sundance CEO Kim is happy to respond.
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My personal strategy for educating the public about the risks (and lack of benefit) of these drugs is to share my son’s story, run free public education sessions, get in front of key opinion leaders and politicians in my country and conduct research. I believe I make a difference but I don’t believe for a minute that the average person is going to take as much notice of me as they are of their doctor. I believe that while for some people Toran’s story is compelling, the majority believe it couldn’t happen to them.
While I do my little bit, I support everyone else who is doing their little bit too. Sundance and their test are not the key to abolishing SSRI harm. They are one part of the multi-pronged approach to this issue.
Doctors will never tell their patients my son’s story but they will give them test results that include information that clearly states the drugs carry a risk of suicide. And people who think that what happened to all the suicide victims couldn’t happen to them will see their own personalised results and realise that it could.
Yes there are risks associated with this process but there are risks in not implementing new strategies too. Antidepressant prescriptions are increasing by 10% per annum in my country. We have the highest rate of youth suicide in the english speaking world. I think we have to be pragmatic as well as principled and for me, saving lives will always have priority over winning against pharma.
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Agree with what you say Stephen except the bit about it needing tons of money. Major marketing campaigns were not needed to abolish slavery or to give women the vote. Public education can be achieved in lots of ways and we can’t let a silly thing like being broke stand in our way.
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One of the things I like about Sundance’s approach is that they don’t pussyfoot around suicide and violence with medical terminology. They name these drug reactions for what they are rather than talking about suicidal ideation or agitated depression they just say these drugs cause suicide and violence.
Personally I’m glad a corporation is fronting up with some money to confront the reality of what these drugs do to people. Its criminal that individual activists, many of whom have been financially devastated by their experience of psych drugs, sell their homes and assets and work for nothing to mount this challenge.
Why spend more money on something no better than a sugar pill? That’s a question for Regulators who in my country fund 16 different antidepressants, none of which work, all of which cause harm.
Why spend money raising awareness of the dangers of these drugs? Because people will continue to use them until they understand there are safe, effective alternatives and continue to be harmed.
Personally I hope Sundance spend a fortune on this and more importantly make a fortune on it. Because then they will develop tests around antidepressant withdrawal and drug use in pregnancy and in specific ethnic groups being targeted by pharma and a heap of other areas that need exposing.
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