Using lived experience

22nd May 2023

Dr Angela Kennedy, Consultant Clinical Psychologist explains why someone with lived experience of trauma can help others.

The term lived experience refers to that personal wisdom gained by first hand involvement. To be expert at using this, someone needs to be able to have self awareness of the power of their own story and the impact that this can have in motivating change. To be a lived experience leader may also require someone to be able to represent the diversity of lived experiences around a topic, to be curious and open to assimilating the wisdom from many different people, find themes and exceptions and communicate this fairly.

What does it mean to have lived experience when it comes to trauma informed care?

Different kinds of traumas impact in different ways, although some sequelae are common. For example being sexually abused by a primary carer as a toddler is a different experience to living through war as an adult or being unaware that you were born from rape or being restrained as a psychiatric inpatient. Lived experience of trauma varies and not everyone with a history identifies as having been traumatised. Not everyone who has felt the impact of severe adversity on their wellbeing, sense of self/ self worth, their relationships, hope or sense of place in the world, has used mental health services or identifies this impact as being ‘mental ill health’. I would argue that we need multiple lived experience perspectives because all bring something unique and contribute to a more rounded view of what ‘lived’ experience’ can contribute. When looking at the bigger picture it helps to have perspectives from lots of angles and by sharing that then we perceive its nature better.

When I started my NHS career in 1990, there was definitely a distinction between patients and staff. You belonged to one group or another. You were either well or unwell (or maybe part of that group called the worried well who were seen as not very much in need and not very ‘resilient’). Although therapy was available when I was training, it was difficult to be open about having any need for it. Staff with ‘lived experience’ were judged with a suspicion that maybe they were not resilient enough to carry out their NHS role. As a result, people would keep any personal experiences to themselves. Things have changed of course. The discourse is now that staff’s lived experience of mental health problems can bring some value to services and new roles have developed that places lived experience as the main area of expertise.

However, I have noticed that staff in traditional public sector jobs are not always willing to be open about their lived experience nor do they always feel valued for that dual perspective. Stigma is ongoing. I made a suggestion to a senior person asking where to start with a changing culture towards a more trauma informed approach, that their leaders be open about their histories and troubles and so lead by example. They told me that there was no one at a senior level who had any difficulties like that. That can only mean that, either, it isn’t safe enough for senior people to bring their whole selves to work, or, that there is bias in the recruitment to senior posts that unconsciously excludes people who are open from being seen as good leaders.

We need to suspend our judgement on colleagues who want to be open about the lived experiences that motivate them towards a trauma informed approach. They may not be fragile but rather be able to survive things that others can barely imagine. The principle of common humanity (seeing struggles as part of the nature that all of us share) is an important motivator for me and many others. I have always had the sense that I could have ended up a patient rather than a staff member had my life been different. I see that sharing the burden of suffering, being an advocate for justice and being part of a social movement towards a solution are critical to this philosophy of a trauma informed approach. Issues of power are at the core of recovery, growth or healing from trauma and adversity. This requires finding agency over one’s mind and life and this begins with owning and defining our own experience,  acknowledging both our uniqueness and similarities with others and finding value in the backstories of people, whether colleagues or those using our public services.

No I don’t have experience of using MH services. No I haven’t had ongoing struggles with my mental health. However, yes I have borne witness to many people who have and learnt a lot from that. Yes I have needed therapy and yes I have been traumatised by something. Yes that motivates me but not because I am ‘triggered’. Having lived experience of trauma does not invalidate my perspective by making me too subjective or mean I am forever damaged. I have healed but cannot ‘unknow’ what I have learnt. It means I can be both professionally objective and empathically subjective and know that both lenses together create something greater than the sum of their parts. By stating this I hope to contribute to making it easier for such dual perspectives to be witnessed. By joining with the wisdom of others lived experience and our own, becoming trauma informed becomes richer, closer to acknowledging the complexity of a meaningfully empowering and person centred experience and closer to the values and goals that it espouses.

If you want to read a briefing paper on this by one of our core action group members, then you can view it here.