Why Should I Care?

Yesterday, the beloved children's author, Judith Kerr, died aged 95. She had started writing and illustrating when her own children were learning to read, and was a firm favourite with my own children when they were growing up, with stories like 'The Tiger who came for Tea' and 'When Hitler Stole Pink Rabbit'.  Judith's early life had been eventful. Born in Weimar Germany in 1923 to Jewish parents, the family fled the country in 1933 to escape the Nazi atrocities that were becoming commonplace. After a time in Switzerland and France, they settled in Britain in 1936. It was a shrewd decision that her father, Alfred Kerr had made and one which undoubtedly saved the family. He had openly criticised the Nazis, and his books were publicly burned after the family had fled.

When her death was announced on the BBC news yesterday morning, I felt a sense of loss at yet another well loved character from this era leaving the earthly realm. My own parents were born in 1924 and 1925, my Dad a WW2 RAF pilot - they were a generation who witnessed the ultimate in brutality and showed us just what the human spirit can endure. I was deeply touched by her words. "Millions of people would love to be in my shoes" she said. "I've been ridiculously lucky." No doubt she had in mind the family's narrow escape from the death camps, where so many millions perished. She recognised her good fortune.



It lead me to think about just how ridiculously lucky I have been, and it also shed light on a question that has caused much head scratching in the last six months or so.  

For some time now, I have been involved on Twitter with the Prescribed Harm Community, a group of people who found each other and came together on social media, united by their shared experiences of being harmed iatrogenically by psychiatric medications or ECT (or both). I came across this community of people quite by accident because of my own interest in all matters mental health, and because I have seen many clients who have been labelled 'disordered' or 'mentally ill' and medicated, when all they had done was respond in quite understandable ways to what life had unkindly dealt them.  Prior to this, I was, and still am, involved with the AD4E events and Drop the Disorder!, which bring people from all walks of life to discuss alternatives to the biomedical model which currently dominates this arena.  Knowing just how helpless my clients have often felt up against a system that misunderstands, labels and medicates, I have offered my support to this prescribed harm community, a community which is so rich in terms of how they support each other. They have accepted me into their midst and have sometimes expressed surprise and gratitude for my support as an 'outsider'. The medical profession could learn a great deal from these people in terms of iatrogenic harm and the impact of not being listened to. If only they would shut up and listen, but they don't seem to know how.

I suspect it was anticipated that my interest in supporting this community would fizzle out, but if anything, my resolve has grown stronger. It seems it's rare for someone who has not been iatrogenically harmed to attempt to understand or to take an interest in many of the issues, and I personally have not taken a single antidepressant, benzo or antipsychotic, and I have never experienced ECT.  So what keeps me here? Why should I care? What on earth has it got to do with me? I think now I can explain. But to do that, I must share a story with you. 

In the late summer of 1960, my mother must have started to suspect that she was pregnant again. She was - with me. My parents already had two girls, aged 9 and 4, and tragically they had lost a baby boy, born between these two daughters, who had only survived 2 weeks following his birth. This tragic loss was the result of a serious medical error.  The nursing home where my mother gave birth to him had been shut down as a result of a dangerous infection.  When she went into labour, my father was told the nursing home had reopened, was perfectly safe, and he was instructed to take her there for the birth. It wasn't safe, and the infection claimed the lives of several babies at that time, my brother being one. The loss of this beloved infant son would quite naturally have led to heightened anxiety in her subsequent pregnancies.

When in the early months of her pregnancy with me she started to be violently ill with morning sickness, my grandmother took her to see the family doctor to see if anything could be done to alleviate the symptoms. He was not unsympathetic, he could see that it would temporarily cause inconvenience and distress, but his response to her was simply this. "Your mother had to put up with it, and I'm afraid you must too". She left the surgery, disappointed and a little annoyed. But there was nothing for it, she had to get through it, it did pass, and she did, after a long and difficult labour, give birth to me in the spring of 1961!

The reason for telling you this story? But for that doctor, my life could well have taken a very different turn.  In the late 1950s and early 1960s, women were being prescribed a new drug for morning sickness. It was called Thalidomide, managed by German pharma company Grunenthal. The name strikes fear into hearts due to the devastation this drug caused. The Thalidomide disaster has to be one of the darkest periods in pharmaceutical history and around ten thousand babies were born worldwide with seriously deformed limbs. I am aware, without any shadow of a doubt that had that doctor prescribed Thalidomide, my life might have been very, very different.  That doctor holding his ground and my mother's temporary discomfort saved me from the unimaginable, and her from a lifetime of guilt.

Judith's words come back to me. "I've been ridiculously lucky". I really have.

Pair of artificial arms for a child. 

Roehampton, England 1964

And that, I've worked out is one of the reasons why I'm here.  Because I've been ridiculously lucky. I too could have been so seriously iatrogenically harmed by a pharmaceutical company, which has spent the intervening period trying to minimalise (how could you?) the harm done, and to pay as little in compensation as possible to victims of it's greed and recklessness.  I could so easily have been born without these precious limbs of mine that creak a little now in their sixth decade of valiant active service.

It would be reasonable to assume or at least hope that lessons had been learned from that time, and that pharma would behave more responsibly towards it's target markets, but unfortunately this would not appear to be the case.  Even more distressing is the role that psychiatry and it's Key Opinion Leaders appear to be taking in their financial dealings with pharma, and the strenuous efforts made to avoid transparency in these dealings.  What possible reasons could anyone have (apart from nefarious ones) to actively avoid transparency in any financial relationships with this sector? 

I have seen the various ways in which attempts have been made to silence the Prescribed Harm Community, the discrediting, denial, abuse, labelling, mocking, ignoring and sarcasm.  But they will not be silenced. Their stories will be heard as they fight for informed consent to make explicit the effects of drug treatments and ECT, and for those harmed by psychiatry to be offered the support they need and deserve.  They will continue to fight for responsible prescribing, and every day more mental health professionals, GPs, researchers and service users are finding the means to say, enough is enough.

But for me? Why should I care? In the words of John Stuart Mill in 1867, “Bad men need nothing more to compass their ends, than that good men should look on and do nothing.” Let us make sure that doing nothing is no longer an option.