Educating others through lived experience involvement

People with lived experience are increasingly being asked to take part in teaching for trainee clinicians, to offer a first-hand perspective of what it’s like to live with a mental health condition and the impact of being involved with professionals for care and support. One of our FReSH START collaborators reflects on his experiences of working with student nurses, and why he believes it is important to contribute to their education.

How it all began

My name is Phil. I am a father to two amazing daughters, an avid Liverpool fan, and animal lover: I have a cat, and have been a vegetarian for over 40 years. I am a qualified teacher, but due to a severe mental health illness have not taught for a significant number of years. I have self-harmed for nearly 30 years.

I can go for periods without turning to self-harm, but there are other times when I self-harm on a frequent basis.  People may not understand this, but self-harm has been a major part of my life.

I first became involved in nursing education around 12 years ago. I was asked by my then care co-ordinator if I could co-teach a lecture on self-harm for my local University. When he asked me, I was flattered and scared all rolled into one. I had questions, such as why would nursing staff want to listen to me (my confidence was very low) and would they be overtly critical of a service user giving a lecture on self-harm? I could think of endless reasons as to why I couldn’t possibly teach the students. For a start, they were adults, whereas I had taught children. However, my care co-ordinator very carefully chipped away at my concerns, and I finally agreed to deliver the lecture. I knew there was a chance I may be challenging some commonly held pre-conceptions. With my care co-ordinator with me for support we ventured across to the University. There began my first taste of service user involvement in the education of nurses.

Over the years my confidence has grown. The lecture has developed and evolved over time to become what is now a very successful lecture. I agreed to first deliver the lecture because my care co-ordinator believed I could make a difference (he was correct) and I wanted to share with nursing students just how it feels to use self-harm as a coping strategy, the rationale behind it. I use the analogy of an iceberg when teaching and I wanted students to understand that it was under the surface that was of most relevance, what is going on in that individual’s life or their history that brings them to self-harm. We discuss what real-life events, e.g., childhood trauma, bullying, exam stress and hearing voices could bring an individual to self-harm. I also help them to understand that self-harm is complex, and there may be different reasons at different times for each episode of self-harm. For example, someone could self-harm at 9am before a stressful exam, but if this individual self-harms later in the day we shouldn’t assume it’s for the same reason.

The personal impact of being involved in nursing education

I have delivered my lecture to students on many different health-focused courses, including mental health nursing and general nurse trainees. I always get nervous before a lecture, but I believe this makes the lecture more heartfelt. I rely upon my teaching skills heavily, as it’s important to be articulate and a good communicator in these situations. I also bring bravery, passion, and an openness to share my personal experiences. With this comes several challenges, such as personal questions from the students that may well be a trigger. Hearing other people share their own personal experience during the lecture resonates deeply with me and has made me reflect on the impact of self-harm on my immediate family. Looking after my own mental health, in the lead up to a lecture, during and after is vital. I do this by using my personal coping strategies and distraction such as catching up on the football, and tapping exercises: in particular the butterfly tapping* I have been taught in psychology.

I believe that those with a lived experience of self-harm bring a unique a personal perspective to the learning. The lecturers who I work with give me the opportunity to debrief afterwards, and their email inbox is always open. This results in me feeling supported and safe. One interesting element is that lecturers who have worked with me extensively and know me well ask if I’m happy to deliver the lecturer alone which I am. Students tend to be more open when left alone with me, asking more probing questions about my personal experiences, as well as sharing their own.

Having the courage to be open about self-harm

People may wonder why I put myself through talking about such an impassioned subject and laying bare some difficult emotions in a room full of strangers. My philosophy is that if I can help one student understand what self-harm is and why individuals self-harm then I have done a good job. In my opinion, there is still a lot to be done to challenge the “attention seeker” stigma. The feedback I get from students is that I change their understanding and ingrained perceptions of self-harm. To quote their written evaluations, they say “I have a better understanding of people who self-harm”, my sessions are “well led and interesting” and “Phil is a very brave person”. This is why I believe training led by someone with a lived experience is so vital for the future nurses and other healthcare professionals, teachers, and other allied healthcare professions. I do believe my teaching degree adds to the training I deliver and makes it unique. I wish I had known beforehand how emotionally draining giving the lecture is and being in the right place to give the lecture is vital. The University have been supportive and understanding if I need to rearrange a lecture. I am grateful for this level of support.

I have had several acute admissions over recent years, as well as receiving support from my community mental health team. Someone who recently supported me as a care co-ordinator as well as staff who treated me in an acute setting told me they remembered attending my lecture as students at the University. All have commented on how the lecture had influenced their practice for the better and developed their understanding of self-harm.

Lived experience involvement should be central to the learning experience taught alongside the theory, as this helps students to see the person behind self-harm so they can put the theory into practice. Those with a lived experience of self-harm can help nursing students understand what it feels like to be an individual that all too often is judged and misunderstood.  I believe it is important to share the positive experiences I have had with nurses and other healthcare professionals, so they can see the real difference they can make to people’s lives.  I have received compassionate, real empathetic care where a member of nursing staff has got down to my level of emotion and “walked that journey” with me, when all I have felt is utter despair. This I believe has made a difference to me and my experience of being supported, in that I have felt validated and listened to. The difference this makes cannot be underestimated. Similarly, I have also encountered staff who have had little additional training of self-harm from a lived experience perspective and at times their lack of knowledge and understanding has impacted on the nursing experience I have received.

Improving practice through research

Something that is also important to me is including lived experience in research, because improving and changing practice is imperative and can only be achieved through quality research. I became involved in Fresh Start/SafePIT because I wanted to make a difference to the lives of people who self-harm.  I want to share my knowledge, understanding and experience of self-harm to help future and current healthcare staff be the best they can be when supporting people like me. I was also drawn to the research because it placed lived experience involvement at the centre of what it does. I believe that by asking those with lived experience what they had found beneficial in their support and therapeutic interventions, and learning from this, we can move forward with the best interventions possible.

*If you’d like to read more about these techniques here are some resources to get you started:

Butterfly Tapping Technique - Bing images

The Butterfly Hug: A quick and easy calming technique - YouTube

Managing Anxiety Through The Butterfly Method | (saferelationshipsmagazine.com)