Patient safety and lived experience, a blog by Anthony O'Connor

Summary

I work primarily in the areas of lived experience and in co-production, and I strive to have both of these concepts better understood, and more effectively utilised wherever possible. Nowhere is this more important than the world of patient safety.

In this first blog for Patient Safety Learning I will concentrate on lived experience, its definition, its usage, and its impact. 

Content

What does lived experience mean?

There are broadly 3 kinds of lived experience: lived, living, and learned.

The lived experience is when an individual has been through a health issue (either physical or mental), has been successfully treated, and that issue has been resolved. The living experience is when an individual is undergoing treatment, but there is no immediate or foreseeable resolution in sight. The learned experience is when an individual is close to another person who is going through, or has been through a health issue, and that proximity has given the person an insight into that healthcare pathway. Everybody reading this will meet at least one of these criteria and this is the starting point for learning how best to use the concept of lived experience.

Sharing insights and experiences

In my own life I have direct experience in all three categories and experience of patient safety issues with all three. One of my lived experiences is my personal journey with cancer which, owing to shortcomings in the structure of Primary Care Networks had an unpromising start. I visited my GP over a period of nearly twelve months with a persistent, and increasingly painful, irritation at the back of my throat. The GP practice where I live has a high turnover of staff, uses a considerable number of locums, and I saw four different doctors during this period. Eventually, I was sent for a scan with stage 3 cancer of the throat diagnosed. The consequent course of treatment was intense, exhaustive, and saved my life. The specialists conceded that they only just got to me in time, and it had been touch and go.

My living experience is my ongoing mental health journey which I have lived with since I was a teenager (I’m now 62). I am a multi-suicide attempt survivor and have been in and out of therapy for a number of years; at one point in my life, I was sectioned and spent time in a Secure Mental Health Unit. It was following this incident that I was placed on a waiting list to see a Clinical Psychologist; I waited nearly two years for this to happen. The Psychologist manged two appointments before informing me that they were dropping their caseload and taking indefinite leave due to work-related stress. This had a devastating effect on me, and I withdrew from any meaningful contact with the outside world altogether. I became a recluse, rarely left the house, and this state of affairs went on for several years.

Both of these examples highlight clear themes regarding patient safety. The first is to do with the patient and the lack of information and support that a good healthcare system should provide; the second is a complete absence of a trauma-informed, person-centred approach with a focus on shared decision-making.

Both of these examples also highlight the safety issues around the people who are delivering the care. Healthcare Professionals are being asked to work in circumstances that are not conducive to maintaining high standards and are given caseloads that are unrealistic. There appears to be an emphasis on quantity rather than quality when it comes to treating people in the NHS. This is the antithesis of what good patient safety should look like.

Working together for a safer future

I have used my own lived and living experience to illustrate how systems put people’s safety at risk, and I have tried to identify the key indicators that are behind this. This is the essence of lived experience and how it should be used. It would be simple for me to just complain about bad service, poor management, lack of resources or insight. It is far more constructive to use the experience to inform the service providers, and to do so without resentment. It is important to remember that the people delivering services are as trapped in the system as the service users.

It is only by working together, identifying the problems, finding the solutions that we will move to a safer service.

Related content:  Patient safety and co-production, a blog by Anthony O'Connor

Share your insights

Do you have lived experience insights to share that could help improve patient safety? Are you a patient, or health or social care professional who has been involved in work that is guided by lived experience? Could you tell us more about the benefits of working this way and the impact it can have on care? Comment below (sign up first for free) or get in touch with the editorial team at content@pslhub.org.

About the Author

Anthony O’Connor currently works as a Participation Lead at a Mental Health Trust and teach es Lived Experience and Co-Production at a NHS Affiliate Organisation. He also works as an Expert by Experience Consultant across Health and Social Care and in Academia.