Mark recounts his experiences with delirium and highlights the need for a stronger understanding for everyone involved in care.
The worst time in my life happened on 28th December 2015 when I was admitted to Intensive Care (ICU). Why? Because while I was there, I experienced ICU Delirium.
Words can’t do justice to the horror, terror and fear I experienced while suffering from delirium. I had delirium for approximately three weeks but during that time, I believed seven years had passed. For much of that time, I was assaulted, tortured and cut open. I couldn’t tell that what was happening to me was not real as it was my brain that was ‘tricking’ me.
As a result of this experience, I lost my self-confidence, my concentration and ability to remember things as well as process information as quickly as I used to. On top of these immediate issues, which some are still affecting me, I developed psychological issues in my recovery including depression, anxiety and PTSD.
Despite having had delirium, it was never spoken about in the hospital or even noted in my discharge letter. In fact, it was only at InS:PIRE (Intensive care Syndrome: Promoting Independence and Return to Employment) clinic that the word ‘delirium’ was first used. My initial focus as a patient was my physical recovery. All I could think about at the time was returning to ‘normal’ life. To help cope with the psychological issues, I started to write, eventually starting a blog and publishing poems. I was then asked to become the InS:PIRE peer volunteer which I was ecstatic to do, helping survivors who came after me understand that their experience with delirium was normal and that it does get better.
People expect me to be angry at HCPs but I am not. I am however very angry at educational institutions, for not giving them enough knowledge and tools to deal with delirium effectively.
Through my volunteering and writing, I was asked to speak at my health boards delirium training day. I was finally able to bridge the gap between the reality of delirium and what it ‘looks’ like which would improve the understanding of the Healthcare Professionals (HCPs) in attendance, helping improve how they treat and manage delirium going forward. I also discussed the things I felt were not helpful in my recovery. For example, when I had a flashback while in the High Dependency ward, I was told it was just a bad dream and to go back to sleep. This affected me deeply as it showed a fundamental lack of understanding of what delirium was and its aftereffects; this was the driving force behind me wanting to speak about delirium.
After the training day, I was asked to speak to one of the excellent intermediate care teams, who treat patients in the community. These teams had likely encountered a lot of delirium patients but didn’t understand what delirium was like for the patient and were stunned silent after my talk revealing my personal experience. This is one of the hurdles that must be overcome to ensure high-quality delirium care in all settings. The biggest step forward for standardization of evidence-based care for delirious patients was the publication of the SIGN (Scottish Intercollegiate Guidelines Network) guideline for delirium.
Most recently, I was given the honour of speaking at the European Delirium Association’s training day this year in Edinburgh. Talking at the event was both easy and scary for me, but is an integral part of training HCPs – sharing the worst moments of my life helps to bring context and supports HCPs delirium education as well as understanding why person-centred care is so important.