What it is like to not be involved in risk management, care planning or significant decisions in mental health care

Recently, the manager of my local crisis team was invited to talk to post graduate nurses working in mental health and A&E about service user involvement in care planning/risk assessments and suicide prevention. She asked if she could use my case as an example both of how badly things can go wrong in this area and how much improvement there can be with service user involvement. With my permission, my case was used throughout to give examples to back up the theory but she also asked if I would be willing to provide a statement that she could end on so that attendees could hear it directly from me – the following is what I came up with; the Crisis Team Manager said that it was met with stunned silence and had quite the impact, so I thought it was worth me sharing here in the hopes that it might help professionals and service users alike. If it can make a difference to even one other person it will have been worth me going through this all.
Please be warned that it does directly mention suicide, including attempts and methods.

You can listen to me read it here: 

Or read it here:

When assessments, decisions and plans are made without my presence, let alone my input, it isn’t a cause of annoyance or anger but instead the source of complicated hurt, distress, mistrust, hopelessness and destruction of the self.
In the most extreme situation, I found myself in Intensive Care, finally coming round after a suicide attempt to discover that, whilst my life was still hanging in the balance, managers who had never met me had made the decision to remove my care coordinator – the only mental health professional I had ever trusted and the only source of care at that time – without consulting me, my family or even my care coordinator herself. The very last fragments of ground, hope and safety were ripped from under me via a brief phone call from a manager to my mum, with no explanation or support. This news was soon followed by a visit from the Senior Practitioner of the Crisis Team: this meeting was antagonistic, blunt and without room for even discussion, let alone any input from me. As I laid in my bed in Intensive Care, days after pleading for help from that team, I was told that it had been decided that I was not to receive any support upon my discharge…after all, “What exactly did [I] expect” from them when the two phone calls they had offered me after I begged for their help whilst telling them where when and how the monster in my head had decided I was going to die hadn’t stopped the attempt that landed me in ICU? When my mum questioned that decision, made it clear that she genuinely thought I was going to die without help, and asked for them to please reconsider, she was met with “That is the final decision, you will just have to make a complaint.” Over and over this refrain was repeated. Over and over I heard that people more important than me had decided that I was unworthy of help. Over and over I heard that professionals who had never met me had decided that it was ok for me to die.

And I was left with no choice.

That night I hung myself.

That night I died.

If I hadn’t already been in intensive care, I would have remained dead; but instead, and much to my extreme dismay when I regained consciousness, very experienced emergency medical professionals were on hand to administer CPR and adrenaline to save my life and reduce the impact of oxygen deprivation, to ensure I didn’t cause myself significant brain damage or paralysis. As I lay strapped to a backboard with tubes, machines and medical professionals all around me, I sobbed hysterically for them to let me go, knowing that with the entire lack of care that had been decided without me and without explanation or the opportunity for discussion it would just be prolonging the pain a bit longer before my death anyway. My nature is to entirely blame myself for my illness and my actions, careful to never draw linear or causal relationship between anything that anyone (professional or otherwise) does and how I might think/feel/act – however, this is the one occasion that I can honestly say that the combined actions of professionals that day resulted in me hanging myself and coming within a hair’s breadth of death.
Not long after, 48 hours after being discharged from Intensive Care, a room full of mainly unknown professionals confronted me with a pre-decided and non-negotiable care plan along the same vein as that which was presented to me in my hospital bed. 7 months down the line and the sheer devastation of not just the content of the decisions made by professionals at that time, but also the way that those decisions were made and delivered still affect me every single day. I was dehumanised and demonised: the monster within my brain, driven by mental illness and especially trauma and personality disorders, had been given solid evidence to back up what it had been telling me all these years, and now there was no fighting it…it must be reality that I am filled with such darkness that my existence doesn’t just damage me and my loved ones, but also negatively impacts highly trained and skilled professionals to the extent that it is unsafe for them to even work with or talk to me, and means that they think my death is preferable to their help.
Until these events, in the year that I had been under the care of my care coordinator and this Trust, there had only be the one suicide attempt that landed me in ICU and triggered these decisions. Since, my mental health and self-destructive behaviour (always driven by guilt, self-hatred and the need to rid the world of my toxicity) have spiralled out of control to the extent of over 15 admissions to general hospital, 4 visits to Resus, 3 stays in high dependency units, 3 damaged organs, and almost 30% of my body weight lost through a combination of serious self-harm and near-miss suicide attempts.
BUT – and this is a big but – over the past few months, key people within the Trust ( [Crisis Team Manager] especially) have revolutionised the way that they work with me; the contrast between that and what came before is indescribable. I have nothing but respect and gratitude for the reflection, honesty and understanding that [Crisis Team Manager] has shown in working with me in recent months. Nothing has been more significant, trust-building and validating than her and her team apologising for getting it wrong and putting such immense effort in to make things right; I don’t underestimate the significance and difficulty of this on a personal or professional level. But, because of this, not only has a much more appropriate bespoke, truly person-centred, and regularly reviewed care/risk plan has been made for me, I have been very heavily involved in the process and my voice has been heard; in fact, it has felt very much like [Crisis Team Manager] and I are equal partners in this, with a therapeutic relationship that is ever-growing in strength. Quite the opposite of before, I now feel that staff think me worthy of their time and help, that I’m a human, I know myself better than anyone else and my opinions matter.
Of course, there have been hiccups along the way – some quite significant, again involving managers or key members of my care team – but these have been quickly resolved as [Crisis Team Manager]‘s work with me has empowered me to have a voice and allowed me to make known the distress professionals have caused in their disregard, dehumanisation and disempowerment of me – and, fortunately, these professionals have begun to follow [Crisis Team Manager]‘s lead in being big enough to take a step back, reflect, admit they’ve got it wrong and sit down with me to try to co-produce solutions. Such transparency and honesty might seem counter-intuitive or uncomfortable, especially when things go wrong, but I promise that from a service user’s perspective nothing has been more powerful or empowering than the trust, hope, understanding and the strong therapeutic relationships that have resulted from this.

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4 thoughts on “What it is like to not be involved in risk management, care planning or significant decisions in mental health care

  1. I am a social care worker and I am constantly removed from situations that I would help my clients lives and futures. I do my job because I love the clients that I live for and work with. The hospitals that are involved in the evaluation of my clients are very segmented and never share information through and for our (my) clients best interest.
    Thank you for this brave message

    Liked by 1 person

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