‘I have tried to start again’ - A lived experience reflection on PBS
As part of our series of ‘Against PBS & ABA’ campaign blogs, this reflection, from our Guest contributor, shares a deeply impactful lived experience of undergoing PBS whilst in psychiatric inpatient care.
I always try to be careful with the language I use, sadly the NHS tends not to be! I have been especially conscious in writing this, and the word ‘enforced’ is my perspective of how a PBS plan was used ‘on’ me during my treatment in an inpatient mental health ward. I also detest the use of the phrase ‘positive behaviour’, but reflection on that is for another time!
The background or context is that I am a person who overall does quite well, I have two amazing children, a full-time job, some truly special friends and enjoy many things, from walking my beloved dog, especially at the beach, to plants and tattoos! I also live alongside bipolar and complex Post-Traumatic Stress Disorder (cPTSD) – my understanding of cPTSD is that I have experienced sustained and multiple traumas in my late childhood and this has caused many symptoms that align with a post-traumatic response. One of these symptoms is that I experience bodily sensations or hallucinations almost constantly, but they vary in intensity. Secondly, when very poorly I can experience fully immersive flashbacks of the trauma I experienced many years ago. Both symptoms, for me, are like experiencing what happened all over again, as if it was happening in the present.
I was in an adult acute ward when it was decided after some months that a PBS plan would be enforced upon me, it felt very much like the staff had become fed up of having to support me through periods of high risk of self-harm or actual self-harm, and also having to be with me during times of acute distress due to flashbacks. It is important to note that although I struggle to trust people, I never hid what it was that I was experiencing. I was then, and I am now, desperate for help.
“I had moved from a position of trusting nobody to starting to trust people, which was then completely ruined by the PBS plan process.”
The clinical psychologist attached to the ward and their assistant psychologist wrote the PBS plan – maybe with the nursing staff – I don’t know – I wasn’t involved. The aim of the PBS plan was to stop the self-harm and stop the intense distress due to flashbacks. This was presented to me like a contract of some kind. It felt demeaning and like punishment for what I was experiencing and how that made me present to the people around me. It was stuck on the wall of my room for all my 1:1 support workers to see and for me to constantly have in my sight. It just further compounded the shame I felt, the feeling that people didn’t understand the lack of control I had over these symptoms, and it made me feel ‘done to’.
There were various elements to my PBS plan. One of the responses in the plan was to use seclusion when I presented as ‘distressed’, but I was never sure what led to this response, and it was never consistently applied. I would suddenly find myself in seclusion again – alone with my mind and with no access to the things I have worked so hard to put in place to help myself. Another response required by the plan was that if I self-harmed in any way they would take away my leave. What I couldn’t understand is why when things got difficult for me, people were removing the things they knew helped – like my precious walks – a felt freedom.
The consequences for me were a complete breakdown in the trust and rapport I had built with staff on the ward, I felt punished and dehumanised. The PBS plan felt like a system of punishment for bad behaviour – my distress was not bad behaviour it is was a consequence of years of abuse that now results in symptoms of a mental illness. I refused to engage with the clinical psychologist and the assistant psychologist any longer, it had been made very clear they had no understanding from my perspective of what was happening for me, and I gave up speaking to people about what was going on and what I needed. The PBS plan had no positive consequences, I was a few weeks later moved to a Psychiatric Intensive Care Unit (PICU) 5 hours away from home, where a kind and compassionate psychiatrist and staffing team helped me to rebuild somewhat – changing my medication and listening to me.
“What I couldn’t understand is why when things got difficult for me, people were removing the things they knew helped – like my precious walks – a felt freedom.”
I was eventually discharged home, after six months. Although this was several years ago, the hidden scars remain. I had moved from a position of trusting nobody to starting to trust people, which was then completely ruined by the PBS plan process. I have tried to start again and managed to maintain some of my trust in my friends.
I don’t know if I will be able to forgive what happened, I don’t know if I will ever ‘get over it’ or resolve it somehow in my mind. It has made me more terrified of being detained in mental health hospitals and it has increased my shame about the things that I experienced and my subsequent illness. For something with the word positive in it, it is beyond me how, for people like me, such a dehumanising and punitive application of such an approach could ever be considered appropriate.
