Read part 1 – Read part 3
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 2: Finding Me, ECT as a Last Resort, The Problem with Diagnoses and the Wider Systemic Issues
ECT as a Last Resort
MIND states on their website ‘Repeated ECT is only recommended if you have previously responded well to it, or if all other options have been considered’.
The Royal College of Psychiatrists has information on its website under ‘What is ECT and why is it used?’
It states, ‘ECT is a treatment for some types of severe mental illness that have not responded to other treatments’.
So, what about ECT being purported as the last resort? And how and who monitors this? I have to date 3 years of those 8 years hospital notes.
I attended a 10-week self-harm psycho-education group followed by a 16-week mentalisation based group.
I saw a Personality Disorder Psychotherapist 1:1 for a limited period. In context then, I received 6 courses of ECT over 7 years and had the equivalent of approximately one, maybe two years ‘intervention’.
Not having all my notes, I can’t be more specific. I was a risk to be managed and a disorder to treat.
Medication, ECT and weekly visits to my Community Psychiatric Nurse (CPN) were my primary “treatments”.
And as I will go on to explain, my diagnosis has since been changed. Hence, I was receiving treatment for a ‘personality disorder’ which apparently was to blame for my self-harm, suicide attempts, anxiety, depression and psychotic episodes.
Therefore, what little treatment I was given, did not address the actual causes of my malaise. Trauma.
The Problem with Diagnoses
I was apparently deemed too unwell for therapy.
Being diagnosed with Emotionally Unstable Personality Disorder (EUPD) otherwise known as Borderline Personality Disorder (BPD) at age 37/38, meant that everything was seen through this lens.
My notes clearly reflect this. Over the years I’ve also been diagnosed with Schizoid Personality Disorder, Schizotypal Personality Disorder, Bipolar Disorder, Major Depression with Psychotic Features, Anxiety Disorders and Eating Disorders.
So, what really was ‘wrong’ with me? I was clearly very ‘disordered’.
All this despite the knowledge of a significant history of trauma and never once was Post Traumatic Stress Disorder diagnosed.
I also entered this dark time through the Eating Disorder Team.
Once it was deemed my presentation was ‘more complex’, I was moved out of that service into general mental health.
The eating disorder was no longer treated. It’s rather like addictions and mental health.
We compartmentalize people into boxes that fit the system rather than adapting the system to understand and meet the needs of the person within a wider context.
In 2019 I was seen by and completed numerous psychological assessments with a Clinical Psychologist which indicated very clearly that on a number of points I scored quite opposite to what is expected for someone diagnosed with EUPD.
I do not agree with telling anyone their personality is disordered and talk more about this in Part 3.
What it did reveal is that I have Complex Post Traumatic Stress and Dissociative Disorder.
I leave off the word ‘disorder’. My diagnosis was changed because the evidence was clear.
A lifetime later I was seen and heard.
Wider Systemic Issues
In my case I believe that ECT was not a last resort on each occasion.
I’m not sure how anyone could NOT question how it was administered 6 times over 7 years and nobody queried what needs were NOT being met and why I was continuing to go in and out of crises?
The changes and increases in meds, the short time I did get some ‘specialist’ treatment and repeated hospitalisations only led to me getting more unwell and self-harm worsening.
It became a matter of when I would die, not if.
I would challenge anyone to read the 3 years of my records I do have and not say they read like the movie ‘The Matrix’.
The ‘system’ had swallowed the blue pill and could not see beyond the diagnosis, symptoms and illness. Who was stepping back and looking at the bigger picture?
I cannot ignore the issue of an ‘accurate’ diagnosis. From the age of 14 I believed I had a mental illness.
As time went on, I accepted I would always be mentally ill.
That’s who I was and I would learn to live with it.
I took some form of medication most of my life and functioned very well for significant periods of time.
But the dark night always crept back in.
My current diagnosis is regarded as a mental illness and given my history with inaccurate labels I wanted that diagnosis.
I wanted psychiatry to name what had been ‘wrong’ with me all along.
But untreated trauma and all that comes with that is not an illness in my eyes.
I’m not anti-meds but polypharmacy seems to have become the norm and no pill was ever going to ‘fix’ what had happened to me.
Medication can be a part of someone’s way forward but so often is a first course of ‘treatment’ because nothing else is offered and/or available.
I was heavily overmedicated which in itself left me barely able to function.
I now take what I need from an informed place where I have choice and control in decisions.
Where I know what my rights are in terms of frequency of reviews and having been through protracted, painful withdrawals, I also understand the effects they have on me.
Informed choices? A choice implies options.
Informed means knowing all the potential benefits and risks. Including withdrawals.
Are people given options and choices and are they given comprehensive information?
I am now working with an EMDR Consultant who has been helping me learn the basics of regulation, understanding my dissociation and creating safety so that we are slowly able to do trauma processing.
This is not about rehashing my past but rather working with what continues to impact on my life today.
It is about reconnecting with my body which holds so much of the trauma and understanding all of my ‘symptoms’ and ‘maladaptive’ behaviours such as self-harm, suicidal thoughts and eating difficulties through a different lens.
What seemed so disordered was actually very understandable and useful in the context of my experiences.
Healing is ongoing and I remain under a psychiatrist and I have needed help from services.
I see it as a sign of health that I know when I need more intensive support.
My experiences in services have been totally different since my turning point in 2017.
This has evolved with learning about and understanding what has actually been going on all these years and finding and using my voice.
I have a very comprehensive safety and crisis plan which has been invaluable.
It has worked effectively for me, my supporters and the staff working with me.
I’m also not saying that all mental illness arises from trauma or that there aren’t a myriad of factors impacting our mental health.
But we know that social determinants and trauma in all its forms affects every part of us.
Telling people that they are ill and disordered is a convenient way of locating blame with individuals and not addressing root causes found in social inequalities and injustice.
Social determinants of health! It maintains a ‘doing to’ and ‘othering’ mindset which is in direct contradiction to so much policy espousing person-centred, collaborative and compassionate services.
It ignores the need to build more connected, cohesive communities.
And if we really understood and applied trauma informed values and principles, everybody, whatever the causes of their distress, as well as staff working with people in distress, would benefit. (see appendix 1 below)
The Department of Health Mental Health Strategy 2021 – 2031 in Northern Ireland commits to a trauma informed and responsive service.
There needs to be acknowledgement that early intervention is too late for those of us who have been caught in the mental health system for so long.
Years upon years of untreated trauma (in the broadest sense), not seen as such, for some has resulted in more trauma.
This compounded by a paternalistic, medicalised system overly reliant on medications.
Investment into alternatives has been sorely lacking for too long.
We cannot turn a blind eye to the very real and deep suffering that cannot be ‘fixed’ by 5 steps to wellbeing and personal responsibility.
I had no voice all those years. I sat in my dressing gown huddled on the floor bandaged and broken.
I felt totally stripped of any agency and self-respect.
Already in 2013, I stated in a 1:1 with a nurse that I believed the medical team had lost confidence in me so I couldn’t believe I would ever lead a ‘normal’ life again.
Recovery focused? What do we even mean by that?
Another word co-opted to serve the purpose of the service with little education or understanding about what it really means or how it translates into practice.
Being trauma informed means issues such as PIP, universal credit, housing, poverty, marginalised groups, domestic violence and other abuses in all forms need to be addressed.
If we don’t start truly working in a way that honours the values of co-production and give ongoing, reliable financial support for resources such as counselling across all GP’s, specialist therapies, third sector voluntary and community led groups, arts, movement, dance, writing and story-telling etc, we will find those who could have been supported early on, stuck in the system like I was.
These issues are just as applicable to suicide prevention.
Lack of funding and resources continue to create barriers. Nobody questions that mental health has always been the Cinderella service and this urgently needs redressed.
But how are the finances that are available being spent?
· NICE give a figure of 6 treatments of ECT estimated cost = £2475
I had 6 x 12 sessions = 72 treatments = £29 700
· In 2014 I spent 23 weeks as an inpatient over 4 admissions
Average £450 a day for a bed therefore 161 days = £72 450.
This is without the cost of medications, ED visits, ambulance services and ICU.
How many years of once or even twice a week specialist trauma therapy would this year have given me?
A peer worker to help in-between sessions? A 24-hour crisis centre where I could go when distressed staffed by people who could simply listen and provide a safe, homely space?
Staff trained in trauma informed, responsive ways of working and the importance of regulation and meaningful activity?
And how are we supporting and caring for staff?
A culture in which they feel valued, listened to and heard. Blame cultures create huge levels of stress.
Is staff wellbeing prioritised?
Time available for training, reflection, supervision and just the basics of having time to eat and drink?
Dysregulated staff will struggle to help dysregulated, distressed people.
Staff represent all the issues affecting the wider community.
Everything is interlinked.
Nobody disputes that staff shortages and finances are huge issues but workforce issues and staff retention have been problematic for years.
What is being done now to ensure things are different in 10 years’ time?
What is the Government investing? We can’t ignore that the dominant culture purports to be recovery focused but inpatient units predominantly keep people safe and contained for a period of time.
Community based statutory services also have a long way to go.
I delivered educational based workshops through the Recovery College to people who were in services.
What I saw time and again were people finding their voices, learning about their rights, then real collaboration not being honoured by services.
I also trained staff. When exploring with staff the barriers and potential solutions to working in recovery focused ways, the outcomes were never taken any further despite doing all I could.
The health service is on its knees, so firefighting is understandable, but what will the consequences be if we don’t also invest in building stronger foundations?
This is not a them and us issue. It’s all of us. All our wellbeing.
Recovery focused practice cannot be separated from trauma informed values and principles which should become infused into every part of organisations (see appendix 1 below).
It is not an intervention or model we ‘implement’. It is an ongoing way of being which recognises continuous learning, adaptation and changes consistent with those values and principles.
Humility and curiosity, I believe, are especially lacking.
I have been in and worked in the service. Any naivety I once held has been stripped and I have gained a deeper appreciation of the complexities of some of the issues.
But I also saw how small, doable, affordable changes, if prioritised, could make a difference now.
Culture change is not a quick fix but whilst we continue to do what we always did under a new guise; we will continue to get what we always got.
It’s time for some brave and new conversations. Much more space for the messy stories and realities of people’s lives.
Place around ‘the table’ for true diversity and appropriate compensation to reflect the value and contribution that brings.
More compassion and willingness to be open to respectfully hearing different views and perspectives and the courage to build on what is working and change what is not.
In Part 3 I reflect on ECT, Women and the Mental Health System
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