Loss & Anger Part 1
You can watch the video of this blog at https://youtu.be/CDymtc3S02I
See the BBC NI Interview at https://www.bbc.co.uk/news/av/uk-northern-ireland-58800716 and https://www.bbc.co.uk/news/uk-northern-ireland-58800710 Please note: Although my therapist worked as a Psychiatrist, she now works as an EMDR Consultant
The following 3-part blog arose after agreeing to be interviewed about my experiences of receiving Electroconvulsive Therapy (ECT) by the BBC NI. The purpose is to share my views, experiences and questions arising from facing the reality that I had received ECT on far more occasions than I remembered. I have also since, received some of my records which had been requested because of my sketchy memory. These validated issues I have raised through my work but were quite challenging and at times distressing to read. This is a bog-standard reflection of my thoughts on ECT and the system in which it was delivered as I try to make sense of my own journey through mental health services. It has helped me take what felt overwhelming and ‘too big’ and translate it into a narrative which I hope will contribute to positive change. I have not tried to give all perspectives or reference multiple research papers. This is just my story. I intentionally refer to ‘the system’ and not individuals as I believe, in the most part, people wanted to help.
Part 1: Loss and Anger
Background, Effects, Informed Consent and Regulation
Trigger warning: suicide, self-harm
Background
In October 2017, I was flying back to Northern Ireland (NI) after 5 months in a treatment centre in South Africa. I had not seen my precious children for six months. It was the first time in many years I felt hope and possibility stirring within. I was nearly 3 stone lighter. The result of detoxing from 2 antipsychotics, 3 tranquilisers, an anti-depressant and a sleeping tablet. I had gone in to the centre after 8 years in and out of the local psychiatric inpatient unit and there were more occasions than I could count being stitched and stapled in the Emergency Department following self-harm. Suicide attempts found me in resus on one occasion and on another in ICU on life support. I’d lost my marriage, my job and hope. In August 2013 my hospital notes say ‘Feels that the medical team have lost confidence in her and due to this she (that’s me) does not have confidence in herself ever being able to have a “normal” life’. Subjective yes. But how I felt. I’m lucky to still be here.
Dates I received ECT, 12 sessions every time
1. 00/12/2009 - 19/01/2010
2. 30/09/2011 - 08/11/2011
3. 11/05/2012 - 22/06/2012
4. 26/09/2014 - 04/11/2014
5. 20/11/2015 - 05/01/2016
6. 18/10/2016 - 25/11/2016
I also had 12 sessions when in a psychiatric institution at age 19 and again at age 27 when living in South Africa.
How did I feel about getting ECT at the time?
At the age of 19 I was terrified. I’d been in a lock up ward in an old psychiatric institution and did not know what to expect. ‘One Flew Over the Cuckoo’s Nest’ came to mind. Not that I properly remember. However, my experiences in Northern Ireland were of relief. I wanted ECT because it meant that when general anaesthesia was administered, I didn’t have to feel or think anything. I could float away into oblivion. Away from the pain, heartache and turmoil. The flashbacks, voices and self-loathing. The mess my life was in. There is something just not ok about that for me. My views now, with a few years distance and slowly healing, are different. You can read about these in Part 3.
The Effects of the Treatments?
Dissociation as a result of multiple traumas as well as very high quantities of various psychiatric medications at different points in my life can and have affected my memory. Yet some of the memories I have lost were at times when I was not on high doses of meds and functioning well. How do I know I don’t remember? My longsuffering husband is rather like my personal external memory drive. Since moving back to the family home there have and continue to be times when we realise significant chunks of my memory are missing.
For example, I took a career break when my son was a toddler and registered as a childminder. I did this for a whole school year. In 2018 I was out with a friend who mentioned that her boys had talked so affectionately about me from the time I minded them. I have no memory of this. Gary had to show me the protective film we’d had to put up on single glass doors. My children’s birthdays, first days at school, significant events that happened to them, in the most I do not remember. I made them character birthday cakes when they were young and only for photos, I wouldn’t have known this. There is so little from my childhood I remember. Friends Gary and I made in NI, groups we belonged to, holidays we went on, my graduation for my Honours Degree in 2008, gone. I remember very little from the 8 years in and out of crises.
Informed Consent
According to the Oxford Dictionary informed consent is ‘permission granted in full knowledge of possible consequences, typically that which is given by a patient to a doctor for treatment’.
Given that I was glad to get ECT because of the anaesthetic, I now question my actual capacity to give informed consent. I also wonder, if ECT is, according to the National Institute for Clinical Excellence (NICE) recommendations, ‘for acute treatment of severe depression that is life-threatening’ as well as ‘catatonia’ and ‘a prolonged or severe manic episode’, what capacity does one really have to make an informed decision? And where an information leaflet is given, what does it say? I did receive one. Was there any reference to long term memory loss with examples of what this might be? Perhaps if I’d known I could forget significant occasions with my children I might have thought twice. I don’t recall it referencing the fact that there is no clear scientific evidence for how ECT works? Was I made aware of NICE guidelines suggesting psychological therapies being tried first where appropriate? Given the best- and worst-case scenarios in the leaflet? But then I’ve forgotten so much!
My husband is very clear that he was desperate and afraid for me. As he says, he would have tried anything. And from his perspective it did help short term the first few times, but not thereafter. He also says there were no other options offered. I saw my CPN weekly, was put on increasing doses and varieties of medications and was hospitalised frequently. How was it all explained to him? If anyone knows the reality of a loved one seriously unwell, you’ll know how little space or energy there is for researching all this yourself.
Regulation and Monitoring
And how is ECT regulated and monitored? In NI how often have the Regulation and Quality Improvement (RQIA) inspected these facilities? How is data gathered about ECT? Is there a record of which patients did or did not receive NICE recommended psychological therapies? Is there a record of who had ECT without giving their consent? In my case there has been no longer term follow up. Shortly after the end of treatment a score sheet was filled in and nothing more. Are the standards and information given to people (including carers/supporters) the same everywhere?
The Charity MIND states ‘It’s very difficult to know how ECT works, or how effective it is. Many different theories have been suggested, but research hasn’t shown exactly what effects it has or how these might help with mental health problems’. NICE guidance states in 3.2 ‘… ‘there is no generally accepted theory that explains its mechanism of action’ p.8 (Read below٭). An electric current strong enough to induce a seizure for which there is no clear scientific explanation for how it works should surely be strictly regulated and monitored? Those still in support of ECT should surely be strongly advocating for this, especially if they are the person administering and/or making decisions about offering it? If this were a physical health treatment, would such vastly differing standards across Trusts in the UK exist or be tolerated? (Read independent audit 2019 below ٭٭). We talk about parity of esteem but what does it look like in practice?
Finally, I believe it is against my human rights: ‘freedom from torture and inhuman treatment’, ‘liberty and freedom’ and ‘no discrimination based on disability’ to not have the power to legally refuse this treatment. A treatment that has no clear evidence of how or why it works and has impacted my life so negatively! My husband and I have spoken extensively about this and I now have an Advance Directive. He supports my decision whatever the future holds. And yet our decision is not legally binding and can be overruled. This information appears in the leaflets given to me whilst detained under the Mental Health (NI) Order 1986.
In Part 2 I discuss ECT being a last resort, the problem with diagnoses and the wider systemic issues.
٭NICE Guidance
٭٭ “A second independent audit of electroconvulsive therapy in England, 2019: Usage, demographics, consent, and adherence to guidelines and legislation.” John Read, Christopher Harrop, Jim Geekie, Julia Renton, Sue Cunliffe. Click on the link
https://bpspsychub.onlinelibrary.wiley.com/doi/full/10.1111/papt.12335#.YVvq7klaris.twitter
Appendix 1: What do I mean by trauma informed and responsive?
I refer to trauma informed and trauma responsive in these blogs but believe that this is a word we can bandy about with little context. When thinking about this I often refer to the work of Dr Karen Treisman, Clinical Psychologist, Trainer and Author who teaches about trauma informed organisational culture with the following principles and values in her book “A Treasure Box for Creating Trauma- Informed Organisations” Volume 1, 2021: “Safety and Trust; Relationships, Connections and Humanising Services; Curiosity, Reflectiveness, Empathy, Compassion, and Understanding; Strengths, Hope, and Resilience; Cultural Humility and Responsiveness; Agency, Mastery, Choice, and Voice; Communication, Collaboration, and Transparency.” Dr Treisman also covers the very broad spectrum of what is meant by trauma. Visit her website at https://www.safehandsthinkingminds.co.uk
These are the values and principles I refer to when using those terms. They were very much modelled in my relationship with the BBC NI journalist Niall McCracken. Given how much poor practice I have experienced when bringing my lived experience to various platforms, I felt it was a good opportunity to highlight what I believe to be good practice.
Appendix 2: Good practice: Trauma informed values and principles in action
I want to thank Niall for the way I felt he honoured trauma informed principles and values in many ways. At all points over the months that we spoke I remained in charge of what I chose to share and had the power to decide at any point if I no longer wanted to participate. I was given background information about the content of the piece and was kept updated on any progress regularly. Everything was clearly explained including the stages and way these pieces are progressed. Safety protocols were excellent in terms of ensuring I understood the extent that my information would be shared and the impact that this could have.
I felt my wellbeing, not ‘my story’ was the priority and valid enquiries were made for me to consider the impact on my family. This was not done in a paternalistic manner and Niall saw beyond what would be considered my complex history. This could have been seen as a risk and affected whether or not someone was willing to trust I was well and able enough to do this. Niall showed great humility in never presuming to know or understand in depth about some of the issues I raised. He was open to learning and really listened. He did not shy away from difficult conversations but asked questions with sensitivity. I knew he really cared about the issue and the people affected. I felt heard and that my perspectives and what was important to me mattered. Whatever BBC NI legal responsibilities are, it was the way in which Niall conducted himself and his genuine concern and interest that made me feel safe and able to trust him with something so deeply personal to me. How we are with people speaks volumes.