29th July 2020 Blog

"I belong here as much as anyone else, having lived my field of expertise 24/7 for 17 years"

Lived experience •

Ellie Wildbore

I’m sitting around a large table discussing a study proposal with a research team. There are professors, academics, people with multiple doctorates, clinical professionals, people that come with a bibliography so large that it needs its own book, those who are at the top in their chosen fields and me.

I’m feeling an acute sense of imposter syndrome. Surely in a minute someone is going to stand up and shout, “Hang on! There’s an imposter in the room! What’s she doing here?”.

Someone is going to ask me for my qualifications, my alma mater, what the title of my latest published paper is. I clutch the strap of my bag under the table and perch on the edge of my seat, ready for the moment when I need to make a quick exit as I’m told to get out for fraudulent activity.

I am qualified, but my qualifications look quite different. The only letters after my name are BPD, PTSD, DBT and CBT. I haven’t spent 10 years researching at universities, I haven’t worked my way up the career ladder over the years.

My qualification is I have lived and breathed my field of expertise 24/7 for the past 17 years. My alma mater comes in the form of numerous psychiatric institutions. My latest publication was probably “Ellie’s Care plan – updated to print” that I was given last week.

And it’s taken me a long time to realise that one can’t go through what I have, without becoming somewhat of an expert by experience. I belong in this room as much as anyone else. I wouldn’t wish what has happened to me upon my worst enemy, but I believe that everything happens for a reason, even if it takes you 10 years to discover what that reason is.

I was 17 when I was given my first mental health diagnosis – no single aspect has shaped my life more than my mental health has.

It has affected my education, my housing, my finances; I have lost count of the number of jobs I’ve lost. It has ruined friendships, holidays, my childhood, my sister’s childhood. My skin is scarred from my face down to my ankles. My mind – which people have always praised for how quick it is – is scarred much deeper than my skin.

Will I ever fix my past? Probably not. Can I use my past to shape my future? Yes, I can.

My job title, “Patient Ambassador”, can sound a bit vague. I come with a pre-prepared speech to explain what I really do when people ask what I do. I sometimes think “Devil’s Advocate” might be the most appropriate description!

I was fortunate enough to be in the right place at the right time to land the role of Patient Ambassador in Medical Education and Research at my local NHS Mental Health Trust. It’s a fully paid role, which at the time was controversial (“Should we be paying someone when this could be a voluntary role?”, “Will we get value for money?”, “Is it more hassle than it’s worth to have someone with lived experience working in this field?”), and I sit across two teams in the Trust.

In the research team I act as a liaison between researchers and service users. I help service users participate in research and take on involvement roles that allow them to contribute to the research itself, and also use my extensive experiences and knowledge of the services and mental health to advise on various aspects of research development.

In medical education, I am part of a multi-disciplinary team that teaches student doctors and physician associates on psychiatry placement in the Trust. We have doctors, a nurse educator, myself (as a Lived Experience Practitioner) and a committed band of service user volunteers who all contribute to the students’ teaching.

I’ve been in the role 18 months and I can’t believe the changes that have happened in that time, both to myself and the Trust. I have gone from being someone who was written off as “will probably never work again” to someone able to teach university students and be a co-applicant in a research study.

Attitudes have changed around me – from uncertainty around lived experience roles to actively welcoming staff members with lived experience. There is now an active Lived Experience Staff Networking Group, and I regularly get e-mails and phone calls asking for my opinion on something from across the Trust and beyond.

However, I know this isn’t the case everywhere. Many have not had a pleasant experience working in a Lived Experience role and there is still a long way to go in the creation of a career pathway for Lived Experience Practitioners and equal pay. Read two fantastic (and at times, hard-hitting) blogs about this from Hollie and Tamar.

I didn’t necessarily choose to do this job to give back to services, but I do choose to do it, because it gives me influence that I hope will lead to positive change for others – whether that’s staff, researchers or service users.

Ellie Wildbore is a Patient Ambassador in Medical Education and Research.