{"id":2652,"date":"2023-09-13T06:36:08","date_gmt":"2023-09-13T06:36:08","guid":{"rendered":"https:\/\/blogs.cardiff.ac.uk\/centre-for-trials-research\/?p=2652"},"modified":"2023-09-13T06:36:08","modified_gmt":"2023-09-13T06:36:08","slug":"how-the-patient-voice-adds-to-community-healthcare-and-health-research","status":"publish","type":"post","link":"https:\/\/blogs.cardiff.ac.uk\/centre-for-trials-research\/how-the-patient-voice-adds-to-community-healthcare-and-health-research\/","title":{"rendered":"How The Patient Voice Adds To Community, Healthcare And Health Research"},"content":{"rendered":"

Using lived experience to improve health outcomes<\/strong><\/h2>\n

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.<\/p>\n

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?<\/p>\n

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 \u2013 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<\/a>.)<\/p>\n

Over the years I have shared \u2018Julie’s Story\u2019 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<\/a>. 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.<\/p>\n

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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.<\/p>\n

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:<\/p>\n