I never expected to become critically ill……..So I certainly never expected to be invited to speak at the Intensive Care Society Conference, State of Art 2023!
I don’t know why I first started sharing my story, it just felt like the natural thing for me to do. It has never been about making myself look important or unique, it has ALWAYS been about educating and helping others. Having experienced severe ICU Delirium, and much later PTSD, I often get asked to share my story at medical conferences and learning events. I enjoy giving others an insight into what critical care and rehabilitation can look like from the patient perspective and I know that in a tiny way, I am making a difference to the future experiences of others. The use of patient stories within the healthcare profession is very slowly being recognised as hugely valuable, educational and insightful.
When I received the email inviting me to speak, in person, at the Intensive Care Society conference, I was shocked!! My initial thought was ‘Why’! Why would they want me to speak, why would they want to hear my story! After a few conversations, it became clear that this was a huge opportunity and I would be in a unique position to prove how powerful the patient voice really could be. So, I accepted. I was invited to talk about my experience of ICU Delirium, sharing the stage with two ICU professionals sharing their own knowledge of Delirium from a professional perspective……they were both legends in their own right, and I would be sharing the stage with them….in front of a live audience!
After much preparation, the conference arrived. I was very lucky to be attending all 3 days of the conference and I was very excited. I had no idea what to expect but I knew it would be hugely exciting. As I sat in the hotel restaurant the night before, imposter syndrome dropped on me out of nowhere. There I was, sitting amongst highly intelligent, educated individuals, discussing profound topics that went way above my head. What was I doing! How on earth did I think this was a good idea, and how on earth did I think anyone would take any notice of me. How wrong would I be!
After some supportive, stern words from a couple of good friends, I’d slept well and woke up in the morning feeling a little more confident. I just about managed a tiny muffin at breakfast because I knew I had to eat, especially as my presentation wasn’t until the afternoon. I put my big girl pants on, walked to the conference centre and the reality of where I was hit me!! Little old me, someone who had ‘only’ experienced a period of ill health, was now representing all patients and about to walk into an environment that could change the perception of the patient voice forever.
Amongst the glitz and glamour of the conference, I met people who I’d only met online or through social media. It was lovely to put names to faces, to immerse myself into this unknown world that quickly felt like I was born to be part of. As time progressed, I felt as though I’d found my tribe. And then it was time……1530, Hall 8.
I was ready, I was ready to show the audience just how important it was to hear the patient voice. I met my fellow presenters and reality set in. However, once I was fitted with my ‘Britney’ microphone, I felt empowered, it was time to do this. The room began filling slowly to start with. If I’m honest, I didn’t expect a huge audience as there was a fantastic patient speaker in the main auditorium and lets face it…..if you’re in the main auditorium, everyone will go to that one! However I began to notice that the room filled, extra chairs were brought in and then people were turned away – we were at capacity. 308 people in the room, many more online and unbeknown to me at the time, a live stream area in the exhibition hall for those who couldn’t get into hall 8. (I’m glad I didn’t know any of this before I went on stage!!). After introductions, it was my time. ‘Britney’ mic secured, I walked onto the stage as calm as a swan…..but truly flapping underneath. I had to nail this, it was too important to mess up!
My 8-minute presentation started immediately with the Delirium animation that I co-created with the BBC and Plymouth College of Art (https://youtu.be/JrK5zZC1rbw). The animation is so powerful and did much of the work for me, but I had to make sure that my words matched. As the animation ended, my microphone came to life and I shared a brief insight into what ICU was like for me. I chose to give a nod to the fantastic team at University Hospitals Plymouth who cared for me and who continue to deliver fantastic care and support, always learning from past patients. As quick as a flash, my presentation was over. Relief washed over me but more than anything, a huge feeling of pride.
My fellow presenters were brilliant and captivated the audience so much, you could almost hear a pin drop. Before I knew it, we were done and were invited back onto the stage for audience questions. I had already told myself that very few questions would be for me, if any. I was just honoured to share the stage with such wonderful people. What I hadn’t expected was the response from the audience, both in the room and online. The 3 of us had worked so well together, we had blown the audience away. I became slightly embarrassed as many of the questions coming through were for me. People wanted to know so many different things – what it was like for me, how I felt things could’ve been done differently, how I felt things could be improved. So many questions I hadn’t prepared answers for…. What became really evident was the passion and hunger for the patient story. I’ve always said that people can learn from textbooks and simulations, but hearing first-hand accounts is the best way to learn….and I stand by that.
For the rest of the day, into the evening and the next 2 days, the enthusiasm and excitement from many who had attended the presentation was far bigger than I anticipated. I was flattered by the compliments and gratitude but I still stood by my belief that it wasn’t about me. Yes, I shared my story, but I wanted to prove how valuable the patient story could be……and I think we achieved that.
I could write pages and pages on my experience of the conference. I was looked after and made to feel so welcome. I met people for the first time and made new friends. I was able to continue the patient story conversation, talking to so many people who wanted to take ideas back to their own units. The whole conference was a fantastic experience and I would do it all again if I could.
I took so many things away from my week at SOA23, but the biggest thing for me was the overwhelming enthusiasm to learn from patients. I learnt that all units do things differently, don’t always have the budgets they would like, or need, and some wished they were allowed to do more. I genuinely believe that hearing a patient story made people think about how they deliver care, thinking more about what it’s really like for the patient and realising that those small, seemingly insignificant things, really do matter.
If you’re a healthcare professional reading this, I urge you to encourage the use of the patient voice, if you don’t do so already. Not just ICU, but across all disciplines, so much can be learnt from hearing first-hand accounts. Patients, and their families, often want to give something back. Offer them the opportunity to share their story to help others. It can be a letter, a card, a video, a drawing…..it doesn’t have to be huge. I have experienced for myself, through my ICU rehab volunteering, how often patients, and relatives, appreciate hearing from someone who has been in a similar position.
Never underestimate the power of the patient voice.
fromdeliriumtoreality.com 
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