For the first in our series of Spotlight interviews with ieso’s Lived Experience Partners, and in conjunction with UK #MentalHealthAwarenessWeek, we introduce Paul Edwards.
Paul was a Detective in the Police for over 25 years before he was medically retired in 2016 having been diagnosed with PTSD in 2009. In retirement he volunteered for his local mental health service, which grew into him becoming a Lived Experience Advisor.
Paul uses insights from his own experience, and the experiences of others, to inform patient-centred improvements and ways of working for organisations such as the NHS and the British Association for Behavioural and Cognitive Psychotherapies (BABCP). He was also part of the recent national NHS Talking Therapies Help Us Help You campaign and has worked with a number of UK universities to help educate students on their journey to become therapists.
Hi Paul. Can you tell us about your journey to become a Lived Experience Advisor and what brought you to work with ieso?
It all began in 2018 with what was then NHS IAPT (Improving Access to Psychological Therapies), when I asked if I could volunteer to give something back to the mental health service that had helped me with a course of therapy that I started in 2016. After all, I knew what it was like to walk through the door and what had been good and bad about the experience for me. I remembered the smiley eyes of the first person to greet me and the many steps it had taken just to get to my first therapy session, let alone say anything to this person I had never met and tell them my deepest thoughts. That first volunteering role blossomed into becoming a Lived Experience Advisor for healthcare organisations like the NHS and the BABCP, and a speaker at universities that are training the next generation of therapists. I use knowledge from my own experience, and the experiences of others, to shape improvements for patients. I am honoured that people think I make some sense! I first crossed paths with ieso at IAPT’s (now known as NHS Talking Therapies) 10-year celebration event in 2019. When I first worked with Louise Marshall in 2022 to explore what responsible mental healthcare, research and product development looks like to patients, I realised I had found someone who really cared about the patient voice. And from there, we have worked together to co-create a lived experience involvement programme for the whole of ieso.
What does involving people with lived experience mean to you?
Everyone has a perspective on all things in life, but you get a unique view when you speak to people who have been there and got the T-shirt. Listening to - and learning from - both the good and the bad is the most important thing. Working collaboratively with people with lived experience to understand what is important to them can help organisations to piece together the jigsaw puzzle that is mental healthcare, so that they can bring real benefits to patients’ lives. I once gave a talk entitled “Do You Use Tripadvisor?” because I wanted people to understand that those with lived experience do not have all the answers, just a different view – but this view can provoke new ways of thinking that challenge the status quo and inspire new solutions to tough challenges.
Why do you think it’s important to involve people with lived experience in the development and deployment of digital mental health products – and how have you been helping ieso to do this?
For me, involving people with lived experience is about helping teams that are developing digital mental health products to remember to pause and think: “How will what I’m doing, or what I’m thinking about doing, improve the life of the patient?”. It is imperative that lived experience is embedded from the very beginning: while engaging patients later in the process to user-test and refine the product of course adds value, not consulting people with lived experience from the inception and design stages risks (1) overlooking questions you should ask as part of your user research, and (2) wasting time and money later down the line reversing assumptions that don’t meet patients’ needs.
Working with ieso, I have helped to build and test an approach to lived experience involvement that ensures the patient always comes first. Everyone is an individual with their own needs, and this is always paramount in our thinking. I have collaborated with staff across the organisation to embed lived experience into their work in ways that add value for them and for ieso’s patients. For example, we have worked on several marketing campaigns to encourage more people in need of mental health support to try therapy. We have written new FAQs for the ieso website that clearly explain the research ieso does, and the choices patients have in how their data is used. I am helping to co-develop deployment pathways for ieso’s digital products within the NHS that will work for patients and prioritise patient choice. In everything I do, I support teams to make their materials more understandable and relatable for patients. After all, we can all become blind to technical jargon!
The theme for this year’s Mental Health Awareness Week is ‘Movement’. What benefits do you think being active has for our mental health?
I am a person that finds real benefit in doing exercise, whether it is getting my 10,000 steps in walking the dog twice a day or lifting weights at the gym. For me, these activities are about more than exercise. The movement isn’t just physical – it’s also chatting with people I meet while out walking or at the gym – people whose ages range from 16 to 90. At the gym, I’ve noticed that being open about my own struggles and the reasons I am working up a sweat has helped others to open up themselves. Recently, I was honoured to be featured by my local gym, Lichfield Health and Fitness Club in a ‘Strength Beyond Weights’ campaign. The gym does a lot to support awareness of mental health and NHS Talking Therapies. The feedback I have received from people who have seen the campaign and come for a chat proves to me that moving in whatever way we are able can help improve our own mental wellbeing, and the wellbeing of others.
In collaboration with our Lived Experience Partners, ieso co-developed a set of Responsible Innovation principles that we use to inform the way we work – read more about them here.
