Expert by Experience; the journey to NHS England
This time three years ago, I was an inpatient at a Tier 4 Specialist Personality Disorder hospital, over 100 miles from home, doing my best to battle symptoms which had taken over - and very nearly ended - my life. I was struggling to manage my condition and it had seriously affected my functioning. I had lost my job and I was the lowest I have ever been.
If someone had told me then that three years later I would be where I am now, I would probably have yelled at them about how ridiculous they were being and told them to stop giving me false hope.
Looking back now though, there was something about that time in the specialist hospital that lit a spark in me and really ignited my courage to change.
We were usually expected to go home for weekend leave from the hospital but one Friday towards the end of my admission, heavy snow prevented me going. That day, one of the staff explained that she was going to Twickenham Stadium (the home of English Rugby) to talk at the South West London Nursing Conference and asked if anyone wanted to go with her to share their experiences of treatment. Something inside me instinctively said ‘yes’ before my mind had properly engaged with the thought. (I think I was jumping at the chance to visit the stadium more than anything - being a big England Rugby fan!) Whatever it was, we were soon on our way there and the anxiety began to set in. Before I became ill, I was a primary school teacher so was used to standing up in front of a class of 30 rowdy seven year olds but I had no public speaking experience and was actually quite shy. As well as my EUPD / BPD, I also have social anxiety so doing things in the presence of others who may judge me negatively is absolutely terrifying.
When we arrived and found our way to the suite of conference rooms, it soon became apparent that there were well over 100 delegates listening intently to the speaker who we were to take over from. The staff member must have took one look at my sheet-white face and expected me to pull out - she certainly gave me opportunity to. But I didn’t. The spark inside me burned a little brighter and I pushed myself to the front of the stage, where I was thrust a microphone, and went for it. My voice wobbled, my hands trembled and my mouth went dry but I delivered a piece I had pre-written about my last 9 months as a patient in the therapeutic community. As I reached the end, the audience spontaneously burst into applause and I felt exhilarated. It felt so good to share my story with others and pass on a bit of hope, especially as someone for whom there had been little hope for, only a year previously.
I was discharged from the hospital just a few weeks later but the high I had felt from giving my talk stayed with me. When I re-engaged with the Recovery Team on my return home, they asked what my plans were to get back into the community. I tentatively said I thought I might want to become an Expert by Experience for the local Mental Health Trust. The rest, as they say, is history.
Spurred on by the adrenaline rush of the Twickenham conference and recognising a huge change in myself and my recovery, I was eager to share my experiences with anyone who would listen. I attended large Stakeholder events and spoke about my journey through the mental health system, I co-facilitated Time To Change training of mental health professionals at sites across the county, I even got invited to speak at a nationally attended conference by a local charity. Each time rekindled my anxiety but also that spark. I began to grow in confidence with each event and was soon becoming known for my friendly but candid approach.
At the same time, I also got involved with the local Clinical Commissioning Group (CCG) and was asked to sit on their Personality Disorders Strategy Group as an Expert by Experience. The first meeting was terrifying and bewildering - so much NHS terminology that went straight over my head and so many important people! I kept going though and shared my story with the commissioners who listened and always respected my views on things. It was then that I realised I was speaking up not just for myself but for others who were unable to do so themselves.
This realisation led to me starting my petition to get a local personality disorders service. We don’t have any specialist care for these conditions at all and I wanted to prevent others having to be sent out of county as a last ditch attempt to help, like I had been. Initially aiming for a heady 100 signatures, I presented the petition to the CCG after a year of campaigning with just short of 1200.
I am proud to say that I am now acting as an Expert by Experience on the project group that is developing such a service, which hopes to be treating patients by the end of the year.
At first, I could only do all of this by putting on an act. Much like when I was teaching, I would adopt a public speaking persona and act my way through talks or events as if I were the confident, knowledgeable person that everyone expected to see. With time though, I found I had to pretend less - I was slowly becoming the person I aspired to be.
The accumulation of all this experience at sharing patients’ points of views in meetings, at conferences and events, led to me impulsively applying for a recent vacancy I saw advertised for Experts by Experience at NHS England. They were looking for people to work on their Complex Emotional Needs project, ideally who had experience of Tier 4 treatment facilities.
And that’s where this blog post comes full circle... I was selected to become part of the NHS England project and will now have the opportunity to influence policy on a national level. All thanks to taking the plunge that snowy day and fighting my anxiety for the first of many, many times as I continue my journey towards recovery.
My life isn’t all rainbows and unicorns now and my mental illness still has an impact on it but time passes and things change. Please, if you’re struggling, have hope that you can feel better, and that you can challenge your anxieties.
