'Positive risk taking' and young people with EUPD.

I have had a few blogs that I ‘meant to write’ over the last few months. Particularly one I wanted to post on 12 May, regarding why Florence Nightingale is an inspiration; not just because she was the ‘founder of modern nursing’; but because she recognised that hospitals, and those that work in them CAN do more harm. This also leads to a piece I want to write on how writing about trauma informed care for fellow clinicians has helped me to come to terms better with my own – and what I have learnt along the way- something that I wish professionals had told me.

But things have been pretty busy. Coping with the impact of Covid-19, working full time, studying for a masters ?! and to become an ISVA, lots of deadlines. And of course, there is managing my own mental health. Which is a full time job in its own sometimes. And trying to make sense of the current state of the world.

But sometimes what you want to write, isn’t necessarily what you should write. And so here I am tonight. One of the reasons that I started to blog, wasn’t particularly because I wanted an audience, but more because I wanted to express myself in a way that even the thread tool on twitter couldn’t do. (Plus I seem to be quite good at writing (1/3) (2/3) and before I know it my thread is 32 tweets long.

I was ‘tagged’ in a tweet, from Donna, a ‘warrior woman’, mother with lived experience, and perinatal mental illness. I came across and followed her tweets and her journey, as she spoke so openly about their experience of perinatal mental health. She is one of many twitter accounts, who without a doubt, have shaped who I am as a nurse and a person, and I feel privileged to have the opportunity to have so many windows into people’s lives, who have educated me, challenged me, and made me determined to do better in a way that no university lecture could.

The tweet was asking for my opinion on a policy. I did not want to admit, but despite spending time as a student on a community CAMHs placement, did bank shifts at the time on an inpatient unit, I was actually oblivious that mental health diagnosis’ existed for more than a few young people, let alone one such as personality disorder. Aren’t emotional swings, feelings of emptiness, explosive anger, unstable relationships, impulsive behaviours typical of the average teenager? Are these not things that for many define this period? And in asking this question I am not belittling or dismissing the experiences of children with mental illness, or their need for support. I am just questioning whether diagnosis is necessary or indeed beneficial. In my opinion, no it isn't for the majority. EUPD is a diagnosis of stigma and exclusion, difficult enough to bare in adulthood let alone as a child and emerging EUPD is not very much different.

I was given a diagnosis of emotionally unstable personality disorder in 2016. Having recently read my notes, I was struck by a sense, of despair, for that person that had repeatedly been asking for help, from the age of 17 and instead was placed on a series of proverbial conveyor belts. In 2013, it was changed from EDNOS/depression to cyclothymia. For 18 sessions I actually accessed therapy. When I was re-referred to secondary mental health services 3 years later, my diagnosis was changed to EUPD. I do not remember being explicitly told, or given a ‘leaflet’ as documented. But I do know that day I was discharged back to my GP as a referral had been made to the personality disorder service. Only they rejected me, said I didn’t meet the threshold for an assessment. And three years later this  repeated all over again. There is more that I would like to write, but I am not where I need to be in my own recovery to do that.

In many ways I have felt that I have been abandoned by mental health services, that my own desire to heal from trauma has never been enough for them to offer me support to help me to do that (I am currently on a 2 year waiting list for psycho-something therapy, but have not heard from the psychology department since my assessment in November so who knows.) My readiness to heal has grown in that time, but the readiness of services has not. I think much of that is due to my current diagnosis. And of course a lack of funding, parity of esteem remains a myth.

And the more and more I learn about the experiences of so many, far too many often who have had contact with secondary and tertiary mental health services, the more I wonder if my experience or lack of, has actually put me in a better place to heal, or at least not caused me further harm. And that in itself is tragic. I so believe in the ability of mental health services to make a positive impact, or I would not have become a nurse. So please don't be deterred from seeking help if you need it; there are very good professionals and services out there, far more than those who have become a little lost.

Anyway… I have more than been distracted. So back to the purpose. The first thing about Donna’s tweet that struck me was that we needed a policy for children in the first place; whose minds and personality are still not yet fully developed. A diagnosis that places the blame on them for the what others have done to them. As I said earlier, in my opinion we shouldn't.

I don’t need to or want to analyse the posts, many of my esteemed peers have done this already. But wanted to rewrite the highlighted boxes in a way that MAY be helpful.

 I know that the Trust have a newly appointed CEO, I hope that he was part of getting the policy reviewed with such urgency. I also hope that the review committee is genuinely co-produced from the offset. These are immediate actions that can be done to make things better. I hope Donna is invited to be part of that. I will not change the words from EUPD/ BPD although I do believe that we need to continue to campaign to change it to a diagnosis that acknowledges the impact of trauma. But I do not think the label is relevant in this conversation.

It is not just policy or one trust, that needs to change, but a culture that allowed it to be approved in the first place, the view of people like me, about people like me, as attention seeking, irresponsible, having control over their choices, splitting, underserving of care, or of kindness. I have felt let down, but what concerns me about this protocol, what alarms me, it that perhaps after all I have been lucky. For I have had four years to cope with consequence of my diagnosis, 13 years with a particularly damaging response to trauma and the symptoms themselves. I can not imagine if I had felt punished, had to make choices between an unsafe home and a potentially less safe ward environment, had been called a liar, or an attention seeker or made to feel that I was in choosing this, or difficult, even before I was allowed to buy cigarettes in the shop, or to legally vote what the outcome would have been!?

I also add, when I have been in crisis, I wish someone, had explained that my self harming was my way of coping, of surviving, of stopping myself from becoming overwhelmed. That there were other ways that were less destructive to myself and guided me to explore ones that may help. I wish someone had explained the response to sexual trauma, or the five f's. Introduced me to the possibility of how trauma was linked to my difficulties. I hope to go forward in my career as that person. Please continue to educate me.

The changes in the wording are not written from text book, or nursing knowledge, they are largely unedited. They will not work for everyone. But I hope they illustrate my point and that our job is relatively 'easy', when be base it on what we would want for ourselves, or our children, often it is we that make it difficult for ourselves.

Recovery for people with borderline personality disorder must be defined by the person with the diagnosis themselves, however, the role of practitioner's is to enforce the message that although it may not be linear, and the person’s definition may change over time, it is possible.

A care plan is a dynamic process that must be based on the young person’s current and long term goals. It should be co-produced, written in first person, and available 24 hours a day. All interventions should be considered with their compatibility to the person’s goals and must take into account their values and aspirations. Risk management should be based on views of the young person, and their families, must be relevant, take into account the need to promote trust, safety and choice at all times.

Hospitalisation, enhanced observations, mixed sex wards, crisis teams that involve interactions with people that are unfamiliar must be recognised as often being retraumatising and can invoke feelings and emotions that can remind a young person of some of the events or experiences that led to their contact with services in the first place. However, they can also be essential in the short term to manage risks that can not be managed safely by the young person and those involved in their care in the community. The young person and their advocates must be involved throughout in any such decision making, given opportunities to have their voice heard, taking into account their wishes, their advanced safety plans, and their longer term goals.

Optimal care for young people with a diagnosis of BPD+ involves enhancing a persons choices and protective factors, supporting them to understand and recognise the impact of trauma, identify triggers, enhance their coping mechanisms, and improve their self esteem so that they are able to see their potential for grown. This involves sharing responsibility for risk that recognises the persons experiences, skills, ability, strength, and personal expertise. It also recognises that there are times when the person is unable to safely manage their own risks, and in these times, interventions are done that minimise retraumatisation and promote respect, safety, and acceptance.

For young people with BPD+ as with all psychiatric diagnosis’ perhaps the most essential prerequisite for recovery is hope. When a person is unable to feel this themselves, they may rely on services to hold this for them, at these times we must re-evaluate the level of expetion that we are placing on our young person. It is the responsibility of professionals to feel and share optimism with the service user, and to enhances their sense or identity, purpose and self advocacy skills so that they are able to become active participants in their care and see recovery as a possibility in themselves.

Night all

Rachel x