So I had grand plans for blogging every day from the training day and conference but as you will have no doubt gathered that it didn't happen. It was not because I was too tired like I had worried about before coming to Edinburgh it was because there was no time. not only was there a packed program during the day but there was also evening events which took the time I was planning on using to blog away. So what comes next is this I noted leading up to heading to Edinburgh before the conference.
Monday 2nd Sept: I am frantically printing slides and rereading poems, you might say why did you not prepare before then. Well thanks for asking random person, it comes down to anxiety, if I prepare then the anxiety and thoughts of what if I screw up start which makes me feel like garbage. Plus this is my life story so I don’t really need to prepare it’s coming from the heart so it’s best raw.
Heading to Edinburgh myself for three days is scary because if my health takes a turn I have no safety net. No one here really knows me or my health conditions the Dr's in Edinburgh don’t have my entire medical history. This is anxiety-inducing as my health often takes turns at the most inopportune moments so the thought of needing medical help when I am away from my safety net is scary. However this opportunity to help tell Healthcare Professionals about what it is actually like to have delirium is too important to let my worries or other issues stand in the way. If I can help change thinking about delirium it’s my duty as a survivor to do so.
Tuesday 3rd: Anxiety has hit, I am not ok, I am very sad. I worry about everything. What if they don’t like what I say, what if I get unwell, what if my stoma bag fails. Today is hard. I am staying with my aunt and uncle so the journey to Edinburgh tomorrow is an hour shorter to help not having to wake up so early. Being up here has helped to reduce the anxiety for now but it will return tomorrow I have no doubt. I want to do well because this will affect delirium patients after me, I want to help make the medical world as good as possible for those who come after me.
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Day 1 The training day: I left early enough to leave me plenty of time to get to the College. I took a taxi from the station as I remember the last time I was here it was a hill to climb to get to the college, I am no longer able to do that it would burn my lungs too much. I come in through the door of the college and the anxiety which had been suppressed by being busy travelling hit me like a hammer. Thankfully once I reached the registration area things improved for my anxiety, as Margret Farquhar was there to greet me. Margret is a wonderful woman, she is kind and welcoming and had made things very easy for me to get to the conference and supply all the information I needed to. Emails that had huge sways of text to delve through were qualified by a note at the bottom telling me what I needed to supply. She told me where I was going to be speaking, who was chairing my session, timing and other things. She helped me feel comfortable in what was a strange place with strange people.
I remember talking to Dr Hazel Miller, I am no longer sure what we talked about, I am sure it was maybe something delirium related but it might have been about the train journey or any other topic. She was a lovely Lady and has been a person I knew on twitter since I think delirium awareness day this year? It was so great to meet people in the real world who you have just known on twitter or through emails. I was the first speaker which is always best for me as it allows me to get the talking over and done with. I will let you all into a secret, I hate talking. I love to help people and helping people understand what delirium is like is great but standing in front of people is scary. Telling people about the single worst time in my life is scary, showing my scars is scary. But in the end, nothing can compare to my time in ICU so I know I can survive it.
Helping people understand what it is like to be delirious and its after-effects are very important to me, helping make care better for those who are in the situation I was in and make Delirium identification and treatment better. The other speakers on the training day where all brilliant but two stood out and stuck in my brain which these days is not a simple task. Dr Gillian Scott's talk titled Care of the highly agitated patient with delirium- a care-based approach. I found it engaging and interesting and was interest to learn about ward 52 at Queen Elizabeth University Hospital Glasgow, which from my understanding manages more complex delirium cases, which fascinates me as I would love to hear more about it and how successful it is. My feeling not just from the talk but from understanding the world it must be working as we don't tend to keep putting money into things that don't work.
The second speaker was Dr Andy Teodorczuk, who spoke about education and how to get learning to stick in those you teach. He spoke about reinforcing learning and addressed the different types of teaching that exist and which ones are best for ensuring they are retained. It was to me, a very important topic because it doesn't matter how good your lessons are if they are taught in a poor way and not reinforced it doesn't matter. It is the teacher's job to ensure the very best environment to learn, I will be talking about Dr Teodorczuk in part 2 as he spoke and had a workshop in the main conference.
In the afternoon I had hoped to attend a few of the workshops but I was asked to be part of the consensus group which would create core outcomes for delirium research going forward. Del-COrS lead by Dr Page and Professor Rose is a great initiative bringing standardisation and comparability to the future of delirium research. This means that research going forward will be able to be compared and aggregated to find useful conclusions which means better outcomes for people like me. In the end, I am kind of selfish, I want the next time I have delirium, because as a person with over 50+ hospital stays I am highly likely to get it again, to be better than last time. It was great to be on the group and was absolutely a great use of my time as a patients voice should be part of these sorts of groups but I am sad that it meant I missed out on the workshops.
Day one ended with a Reception at night, which once more was a terrifying concept to me, groups of people are scary not just from a social anxiety standpoint but also from an immunodeficient standpoint. I spoke to people for hours about different medical topics mostly based on delirium but also got to know a few people. I was not an outsider invading the historic college of physicians, I was not an inferior but a peer. That is a big deal, these world leaders, field experts, highly skilled practitioners looked at me as they looked at each other. Now that speaks to the character of the people involved, it would be very easy for a doctor to be aloof or above non-healthcare professionals (or even all non-doctors.) but not the attendees here. An excellent group of healthcare professionals but above all great people.
Just to end this part I want to say how much of an honour it was to be part of this event and being asked to speak was very humbling. I believe my talk went well as many people came up to me and said how they thought it was great and been impactful. I am very happy when people tell me they found my talks useful as it validates that I didn't waste mine and their time. And on a final note I am aware that a horde of people started to follow me after the conference so maybe didn't see the poem I read out on here so here is the link : https://autoimmunedisorderjourney.blogspot.com/2019/08/delirium-bullet-to-brain.html
Thank you, everyone who attended, everyone who spoke to me, I have a heart full of love for every single one of you. Please keep pushing the standard of delirium: care; research; management forward so we can be a much better place.
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