“To me, the model of success is not linear. Success is completing the full circle of yourself”
All the way back in April last year, I received an email from Cumbria, Northumberland, Tyne, and Wear NHS Foundation Trust’s (CNTW’s) Involvement Bank with a request for those on the Bank (service users, ex-service users, and carers) to help Newcastle Hospitals with the creation and development of their new Mental Health Strategy. Having had a number of experiences with one of the Trust’s sites (the Royal Victoria Infirmary aka the RVI) from a patient point of view; I applied to be part of the project…
The attraction for me to this opportunity was mostly centred around my previous, mental health related patient experiences with the Trust. Well, one experience in particular…
In the summer of 2012, upon discharge from yet another psychiatric hospital admission, a Psychiatrist made the recommendation that I be assessed to go into a long-term hospital that specialised in my diagnosis of Borderline Personality Disorder (BPD). After an assessment with the nearest of those hospitals turned into a refusal to accept my ‘flight risk,’ I was assessed for a psychiatric hospital 127 miles away from home. During the assessment though, they told me the daily schedule of morning meetings, therapeutic groups, Dialectical Behaviour Therapy, trauma therapy, medication, reflection meetings, bedtimes etc. and I was so resentful of everything that even though they offered me a bed, I refused to go.
Not long later, I made a third suicide attempt that left me in A&E of the RVI and after finally managing to find a vein to begin administering the life-saving antidote, I was admitted overnight and moved to their Assessment Suite ward. In the early hours, though, the vein collapsed and when the Doctors said their last/only option was to put in a central line because there was every chance I might die without this treatment which has to be given through IV access; I refused to cooperate.
I remember having numerous Doctors come see me and then I remember being wheeled out of the ward and towards the resuscitation area of A&E where there was a whole crowd of professionals who instantly surrounded my hospital bed. Someone in a surgical mask and scrubs came towards me whilst these security guards held me down to the bed and she said “you need to agree to the treatment or we’re going to put a tube down your throat” and the last thing I remember saying was: “I hope you do something wrong and I die anyway!” before everything went kind of black and I ceased to exist.
With no real notion of how much time elapsed, I woke up, but they had put tape on my eyes so I couldn’t open them, the life support breathing tube was nipping against my lip, and I could feel them putting a catheter in. But I couldn’t move. I couldn’t speak. I remember feeling a tear trickling down my cheek and a female voice said “her pulse is going up, has she had enough Propofol?!” And then I was out again and that one nightmare experience was over, but another rolled right on in…
Apparently, my Mum had gone to visit me on the Assessment Suite to be told I had been moved to the Intensive Care Unit and when she arrived at my bed there, she said there was a gaggle of Doctors gathered around and she thought she’d lost me. Then, whilst I was still sedated, the Psychiatric Liaison Team in the Hospital came to the Unit and spoke with my Mum. They told her that once I was woken from the coma (if/when my blood tests came back better) they would be sending me home and my Mum – having just almost lost her daughter – really wasn’t in agreement with that plan and made the statement that she wanted me to be transferred to a psychiatric hospital. The Liaison team refused and when my Mum asked what would happen if she said I couldn’t go home, they told her that I’d be sent to a homeless shelter or hostel! My Mum was instantly on the phone to my Community Mental Health Team and a plan was agreed upon to have me sectioned under the 1983 Mental Health Act and taken to the hospital if I refused to go upon coming out of the coma.
The first thing I remember from coming off life support was my Mum’s face and her saying “you might hate me forever, but you’re going to that hospital!” Almost instantly, I had a plan in mind and so I agreed to go with the idea that once I was far away and surrounded by professionals who didn’t know me, I could fool them, get out of the hospital, and make a suicide attempt where my Mum wasn’t there to be upset or to stop it from happening. I guess the stupidity of my thinking just evidences how poorly I was.
When we finally left the RVI, I remember being torn between two contradictory schools of thinking… I was torn between being terrified that if I stuck around my hometown and ever ended up back in this hospital, they’d go to huge lengths to save me again. But I was also convinced that after the Liaison’s attitude, no mental health services would agree with saving my life. It was like I couldn’t decide whether I was suicidal or not – and surely if I really was, I wouldn’t have any contradictory thoughts and feelings? That was part of the struggle, though, the uncertainty. I worried that I might feel suicidal, make an attempt, regret it later and have no one save me.
Of course, I ended up going to the specialist hospital for two and a half years and a combination of everything that happened on the admission, saved my life and left me with a more positive outlook, skills to combat the abuse memories that occasionally flooded my brain, and a better control of impulsive thoughts and unsafe feelings, and the medication worked to eradicate the hallucinations.
Moving back up North and into my own home, I was comforted to have I’m NOT Disordered (which I had created in 2013 whilst I was in the hospital) because it had really given me the belief that I had found a purpose – to help others. So, as worried as I was that the mental health services would still be poor, I was also encouraged with the thought that if there was the opportunity, I would do all that I could to help change and improve them. Fortunately, CNTW had formed some specialist services to help and support those with a diagnosis of a Personality Disorder and their new Chief Executive (John Lawlor) was so invested and passionate about continued improvement that I met with him numerous times to discuss that.
The rewarding feelings I got when I helped someone else or did something positive to change things so that others wouldn’t go through all that I had, were really heightened when the Trust created the Involvement Bank a while ago. The Bank was basically a means of different wards, teams, and departments creating opportunities for service users and carers to be involved in, and be able to contribute to, making changes and improvement to the Trust and the services it offers. So, of course I signed up!
When I saw the opportunity to work with Newcastle Hospitals, the memories of my experiences there (including the occasion I was put on life support) flooded back and I was motivated to apply. Unlike so many other occasions with the Involvement Bank, I was contacted to say that there had been a huge amount of interest in the opportunity and that the Trust’s staff who were key to the project were going to begin doing informal chats with everyone who applied as a sort of interview to ensure they had the right – and best – people for the roles (there a few others alongside the one I had applied for) they were hosting. Now, this is probably going to sound strange to a lot of people, but I actually really enjoy interviews! I find them to be really good learning opportunities to earn experience in recognising my strengths and talking more about my passions and achievements.
With the beginning of my mental illness being so long ago now, it’s been extremely rare for me to bump into someone who had taken care of me when I was an inpatient, but it turned out that one of the staff on this ‘informal chat’ actually used to be my Community Psychiatrist in 2012 and – and I’m not just saying this! – was my absolute favourite because she did something really special for me. She recognised the need for an Advanced Directive, which is basically a document that states what I would want to happen when I’m poorly and I don’t have the capacity to say those things for myself. Or when I’m so poorly that I say I want the opposite to happen e.g. when the hallucinations aren’t bad, I want to be alive, but when they’re loud, I would be suicidal. Creating this document really helped to provide a better understanding for the Doctors and Nurses in A&E who would frequently, totally misinterpret the thoughts and feelings I would voice when I was poorly.
Realising it was this Psychiatrist who was on this Microsoft Teams meeting, I instantly felt grateful that it was the one Doctor who I had actually found to be helpful when my mental health was at its most poor. I mean, I knew for a fact that had it been another Psychiatrist, I might have been instantly reluctant to continue with the chat and decide against pursuing the opportunity. Also thankfully, the Psychiatrist actually recognised and remembered me too and it was a lovely chance to be able to tell her how I grateful I became for her idea of creating the Advanced Directive, and for her to see how far I had come from needing a document like that in order to stay safe and well.
Fortunately, the chat went well, and I was originally first chosen to be part of a focus group who would provide their thoughts and opinions on the ideas of another group(!)… I attended two meetings with a number of others who were chosen to contribute in the same sort of way/role as mine, and I really enjoyed how quickly it became apparent that we were all totally on the same page. Everyone had the same values and appreciated the same qualities in the care that Hospital staff provided for them when they attended A&E or another of Newcastle Trust’s services/wards etc.
Then, though, the discussions in the focus group turned to utilising social media to aid the process of publicising the Strategy, I quickly found myself taking on a whole new – more fitting – role in focusing on the digital side of the Strategy and marketing of it. So, over the last few months I’ve been meeting with the lovely, inspirational, and passionate Fardeen and Gemma who are part of the Trust’s Patient Experience team and are pretty much leading the way in this project. It’s honestly been so reassuring to see that people like Fardeen and Gemma exist in the Trust because it brings me confidence that things will continue to improve and that there are people who are making active steps to make this happen.
My first few tasks from my meetings with Fardeen and Gemma were to create mock-ups of social media posts (something which is really time-demanding, but which I enjoy doing) detailing the creation of the Strategy, the ideas behind it, and links to the survey that we’re encouraging patients to complete. Then, we started talking about how we could collaborate on I’m NOT Disordered, and I put together a Q&A (which you’ll see on the blog soon) and then wrote this blog post!
I’m hoping that this post really highlights the idea of hope. That you can see that it’s so possible to go from being at such a very low and dark position, to the complete opposite of being happy and genuinely loving your life and all that you have achieved in it. One important thought that might help with this, is one that I really believe and focus on a lot if I’m having a difficult day: I remind myself that I wouldn’t be where I am – or who I am – if I hadn’t gone through all that I have. It really helps me (and hopefully you too!) to feel as though everything has been sort of… Worthwhile, almost. As though all those terrible and scary moments, have led to something positive.
It's not all about me and my mental health though. I’d also like to take this post as an opportunity to give Newcastle Hospitals a pat on the back! I think that for a lot of services and professionals, it can be incredibly difficult to say, “we’re doing something wrong; we need to change it.” And that is exactly what the Trust are doing in creating this Mental Health Strategy and including the people who the Strategy will actually affect, is the icing on the cake! It really illustrates that the Trust have their priorities straight and that they acknowledge just how influential a person’s experience of a healthcare service can be on their entire life; and their mental health in particular.
I’d like to think that as much as I really want for people to find inspiration in my recovery and for it to instil a sense of hope and positivity for themselves, the Trust’s actions with this Strategy should also be inspirational for other services. I’d like other Trusts and healthcare providers to look at Newcastle Hospitals as a role model in this and to see just how appreciated it is from their patients who can feel more respected in the Trust acknowledging the importance of their input.
Below, are the links for Newcastle Hospitals social media and the survey we’re asking people to complete, and keep an eye on here for more posts in collaboration with the Trust and this project…
Newcastle Upon Tyne Hospitals NHS Foundation Trust links: