About a month ago I read a book review of ‘Electroconvulsive Therapy in children and adolescents’ edited by Neera Ghaziuddin MD, MRCPsych (University of Michigan, Ann Arbor, USA), and Garry Walter, MD, Ph.D. (University of Sydney, Australia) in the British Journal of Psychiatry. The review was written by Dr Gordana Milavic, Clinical Director of the Child and Adolescent Mental Health Services at South London & Maudsley NHS Foundation Trust.
Where Dr Milavic said “It would appear that there are no absolute medical or neurological contraindications to ECT” and “Side effects in young people appear to be generally mild and transient”. I then read the write-up on Amazon where it said “This is a pioneering book and is the first book of its kind” and claimed the editors “spear-headed the re-introduction of ECT as a safe and an effective treatment option” (bolding is mine).
As a mother of 3 children, grandmother of 3, I was both shocked and disturbed to read that ECT was being promoted as a safe treatment for children and a viable option in healthcare. For I know that ECT causes fits to the brain, memory loss, headaches and trauma, to some if not many. I know this because I’ve heard it from people who have received ECT voluntarily. They tell me that it caused them to lose “good” memories, eg of holidays, and some have said it made no difference to their mental wellbeing, in terms of being able to come off psychiatric drugs or in dealing with low mood. They talk of having “maintenance” shock treatment and of not being allowed hospital discharge until agreeing to have it.
I began to wonder if ECT for children and adolescents in Scotland was in danger of becoming a reality and in fact was already happening but that I didn’t know about it. At the same time as considering this horrifying thought I was having Twitter dialogues with a psychiatrist colleague about ADHD and children, he a questioning voice, me a critical one. We were discussing the movement of Adult ADHD, influenced by pharmaceutical companies.
I remembered a meeting of the Cross Party Group on Mental Health at Scottish Parliament, January 2012, where this topic was raised and two psychiatrists gave presentations, trying to persuade us that Adult ADHD was a growing trend. I spoke out at this meeting against the use of neuroleptics in children said to have ADHD and faced opposition from another mother, as I remember.
Following the Twitter discussion I searched back Emails to try and find the correspondence I had at the time with psychiatrists about ADHD. However in my search instead I found another Email response from 14 October 2013, a conversation I had with a psychiatrist, neuroscientist, professor, now no longer with us. We were “pen-pals”, friends and adversaries, for over 2 years, since I had attended the Scottish ECT Accreditation Network (SEAN) Conference in November 2011, in Stirling University. The first and only event of its kind I had been to, and which I hadn’t found a pleasant experience. For I didn’t like hearing the testimony from a woman older than me who’d had many courses of ECT in her lifetime, was on psychiatric drugs and had tardive dyskinesia, having to take her soup through a straw.
In the October 2013 discourse with the ECT psychiatrist he said this “You don’t want children to die, I know that, but then again, you won’t have seen – just one example from my experience – a child in a severe catatonic state on the edge of death, saved by ECT, given by me.” (bolding is mine). I hadn’t remembered him saying this. Not sure why. I must have put it out of my mind at the time, not wanting to consider it. I decided I had to find out if there were children in Scotland regularly getting ECT and being “saved” by doctors or by ECT. It bothered me.
So I made an FOI (Freedom of Information) request to SEAN on 9 November 2014, asking “about numbers of children 16 and under receiving ECT in Scotland”, and the age ranges, from years 2008-2013. I received a response on 5 December:
“Based on SEAN data held centrally by NSS Information Services (ISD) there were no patients under 16 that received ECT in Scotland between the years 2008 and 2013 inclusive. There were 2 patients aged 16 who received ECT for the time period specified, the patients were from different Health Boards. There were no critical incidents or deaths associated with these two patients. Since the actual number of patients involved over this period is very low, our statutory obligation to protect patient confidentiality prevents the release of more detailed information regarding gender, diagnoses or health board. Section 38 (2) Freedom of Information (Scotland) Act 2002 applies. I am sure you will appreciate our responsibilities in protecting the patients identities.” (bolding is mine)
I was pleased to see that no children received ECT in this 5 year period but sorry to hear that two 16 year olds were given the treatment. I say this because I’ve had family members who were subject to ECT as teenagers, one occasion to a male relative which resulted in a critical incident. The other was to a female family member who never speaks of it. Plus my mother had many courses of ECT in the 1950’s and 1960’s when it was regularly given for nervous breakdowns or psychoses. I know that she resisted psychiatric inpatient care and I assume it was because of this. She isn’t alive now for me to confirm this with her. I do remember though how she did not want to go into the psychiatric hospital, I was 14 at the time, but there were no other options then, as now, for people in altered mind states who require respite and gentle care.
I want to see alternative ways of working with people, children, adolescents and older folk in mental distress and emotional crises, that doesn’t just have to mean coercive drug treatment or “life-saving” ECT. Alternative ways of working with psychoses and altered mind states so that people have the choice of coming back down to earth or transitioning with as little trauma as possible. Access to talking therapies when in a psychosis. Not being declared “non-compliant” because we resist the drug treatment. It made sense to me to resist the antipsychotics because they depressed me. The antidepressant gave me suicidal ideation and the lithium raised my blood pressure. Fortunately I was able to taper the drugs, myself, and make a full recovery, off the drugs and back to myself. But I shouldn’t have had to “do it myself”.
I don’t want to see children and young people being subject to ECT. Doctors should try and do their best to find other, more compassionate, less invasive, treatments for distressed children that do not involve causing further trauma. New pain for old. There has to be a better way. And anyway, why are children and young people getting into such a state that doctors think ECT is a viable option? Why is “maintenance” ECT necessary? Let’s put away the spears and put on our thinking caps before more damage is done.