How The Patient Voice Adds To Community, Healthcare And Health Research

Using lived experience to improve health outcomes

In 2008 I was knocked off my bike in a road traffic accident. Initially, I recovered well after a few weeks in hospital. However, a couple of months later, and back at home, my health began to deteriorate. I had developed sepsis, probably from a closed degloving injury to my left leg. After 18 months, following eight operations, I was back at work and feeling much better, physically. Due to ongoing hospital appointments and very regular physiotherapy, I was unable to return to my full-time role as a Project Manager. I was asked to be the Patient Safety Lead for the Primary Care Trust I worked for. I represented the Trust at a Patient Safety Conference, hearing many tragic stories of patients who had sadly lost their lives. I had survived but felt there was much learning from my experience that could lead to improved outcomes for others.

However, I had never shared this with anyone and what should I do with this information? I felt I needed to speak out, but how and to whom?

In the breakout session I got chatting with one of the speakers, Martin Bromley, who was developing work around Clinical Human Factors. I shared my recent experience and Martin suggested I made a Patient Story film and made the introductions to the Patient Story team. Making the film was a personal challenge but I feel it began my full healing – narrative therapy perhaps? Each time I shared my story, I felt it had less power over me. It felt like I was turning a very painful and harrowing experience into something much more positive and productive. (See my patient story.)

Over the years I have shared ‘Julie’s Story’ at conferences, including at the Patient Safety Conference the following year, and across the community to groups including the Woman’s Institutes and Carers Forums. I have spoken to many Health Professional Groups, signposting many to the excellent support and resources available at the UK Sepsis Trust. I was accepted as a volunteer for the UK Sepsis Trust in 2011 and have raised funds and awareness over the years and continue to do so.

In 2013 I retired after many years working for the NHS, continuing to raise awareness and facilitate the sepsis support groups. As my health continued to improve, and my confidence returned, I took up open water swimming and running and have completed a number of charity runs. I swam the Great North Swim in Windermere a number of times raising much needed funds, increasing sepsis awareness and meeting some fabulous folk.

Through my attendance at conferences and through conversations with consultants and researchers, I have been approached by several organisations and have agreed to use my patient voice to contribute to:

• Resources for the UKST
• Time is Life – Sepsis Strategy with the Royal Liverpool Hospital 2017
• Sepsis Strategy for Lancashire Care Homes 2017
• The NHS Right Care Project on Sepsis 2018
• The PRONTO trial as a Patient and Public Involvment (PPI) representative.

PRONTO began in 2019 and is now nearing completion. The trial aims to discover whether using a bedside test for procalcitonin along with the NEWS2 score can improve outcomes for sepsis patients whilst also reducing the use of unnecessary antibiotics.

I feel listening to the patients voice can increase understanding of how it feels for the patient, their carers and loved ones. Patients can contribute to the bid for initial funding and provide a plain English lay summary of the project and what it aims to achieved. They also provide a valuable contribution to posters, leaflets and letters to patients about the research.

The role of a PPI representative is integral to successful research, as it helps researchers consider how language and tone can be used to ensure participants feel empowered to take part, increasing acceptability and involvement in trials. Additionally, it is a reminder to researchers that the abbreviations they use daily may need explaining to their patient representatives (or ideally not be used at all.)

Perhaps you are reading this and wondering if this is something you could get involved in? – why not make some enquiries, https://www.spcr.nihr.ac.uk/PPI/what-is-patient-and-public-involvement-and-engagement

It may be that contributing to research in this way helps you personally and also make a positive difference for others, and ultimately improve health outcomes.

– Blog contributed by Julie Carman