Saturday 21 September 2019

EDA Conference Part 2: The greatness of people

(Day 2 for me) Day one of the conference was exciting, it was the start of when I could actively engage with the speakers as I now was not dealing with the anxiety of speaking and getting to Edinburgh. But boy was level of understanding required to keep up with the speakers much higher. It started off with a very interesting section by Dr. Karin Neufeld (Johns Hopkins) about things that might present like delirium and as such should be excluded. I was so engrossed by the material I forgot to take notes, but it was really interesting to think that perhaps delirium is not delirium. These are important things to think about when we are implementing new systems of identifying delirium.

This point was reinforced by the Patient cases presented by Prof. Meera Agar (the University of Technology, Sydney), Dr. Adam Al-Diwani (University of Oxford),

 Dr. Babar Khan (Sleep in the ICU)(Above) (Indiana School of Medicine) and Dr. Alessandro Morandi (Fondazione Camplani Casa di Cura). Which brought up so many interesting points for discussion and comparison like Catatonia vs delirium and the difficulties of distinguishing between them. As well as Autoimmune Encephalitis (which one of the ICU nurses in 'my' ICU has Pauline Murray) which could be a differential for delirium but also as co-present which is extremely scary. But most of the talks where academically stimulating to me but in the context of my life as an autoimmune magnet it was not that important to me that was until Dr Khan started to talk about agitation in ICU. It addressed the obvious things that agitation in the ICU is dangerous, the patient might pull their intubation line or central lines out impairing their ability to get the help they need. Managing agitation to allow safe treatment is important as is getting the patient mobile as soon as possible as it can help reduce delirium on its own. All very interesting but at this point I was starting to get a kick of a sore head, the coffee break came at a key time. I got to take in some water, talk to some people and recenter myself for the next parts.

Session 2 is the most important part of the conference, why you might ask because it brings context for everything that happened in the training and the rest of the conference. What was so important that it has such a pull? Patient and Carer experience, it is easy to forget that we are talking about people. So like my talk on the training day, these talks by Alexandra Adams (Patient and Med Student Cardiff University) and Dr. Julie Lustig (Daughter of Delirious Mum) bring context to everything that everyone does. After all, if you forget the people at the centre of the situation then you might quickly forget the most important aspect of care, you might forget the humans affected by everything you do. In my mind, the scariest parts of my delirium can be directly linked to procedures done to me. It is key to me that Doctors, nurses, other healthcare professionals, friends, and family understand that what you do can affect the delirious patient. You might be the soothing presence of a Quintan (the only 'good' guy in my delirium) or the evil overlord. It doesn't take much time to tell the patient what you are going to do or administer a little local anaesthetic before placing a line. These things might seem obvious to you and if it is then I bet you have lower than average delirium cases. I always say just because a person is delirious or in a coma doesn't stop them being a person, you wouldn't do these things to someone who was compos mentis.



These contextual talks were followed by a very interesting presentation by Dr Emma Vardy it was titled A New Digital and quality improvement programme to improve delirium care. It was very interesting in the application of digital tools in what is becoming a more digital medical record based world. It increases patient safety and reliability of diagnosis of delirium as well as reducing variance in spotting it. So from my memory and notes the core point was when certain criteria are met you are prompted by the system asking you is the patient suffering from delirium and opens diagnostic suggestions and things that may help with the delirious patient. This to me is a great thing because it is not solely relying on someone to spot it but giving a gentle reminder that hey maybe the person has this? Really great and it is shown to make big differences and this, in my opinion, should be implemented in all digital records based systems.

So that was Lunchtime and for those who want to know the food was good and I drank about 4 litres of sparkling water. I then attended: state of the science in delirium education Dr Wolfgang Hasemann PhD chaired the session which included Prof Andy Teodorczuk, Dr Claire Copeland , Dr Elke Detroyer PhD and Dr Emily Gallagher. Before I get into this section I want to apologize to Dr Gallagher I remember her presentation was great but I was having brain fatigue and with having to run at a high level for so long on the day I simply was just unable to take notes and engage. It was not a reflection of her work but more my now limited ability to concentrate and process data for that length of time. So that aside it was an extremely interesting section filled by brilliant people doing brilliant things.







Dr Copeland and Dr Teodorczuk (above) addressed similar issues and as such, I am going to talk about them as a pair except for a few points. Dr Teodorczuk spoke about how to teach better and how to plan teaching so that you are reinforcing learning which is very important. Both of them spoke about the need for the end-user/patients to be involved in the training as they will be the recipient of the care as well as integrating education into QI to ensure its maintainability. But there were a few points Dr Copeland spoke about that was interesting and terrifying: first, a patient with delirium costs an EXTRA £13,000 per admission, that is a huge sum considering 20% of the hospital population are getting it (at least much higher in ICU and post-operative situations); Secondly addressing delirium education at the undergraduate level not just for medical doctors but nurses and any other healthcare profession requiring undergraduate education. The latter point is extremely important as it is the best way to change the culture of delirium and its diagnosis. The former point is mind-boggling as those are huge sums of money.

Dr Detroyer showed that e-learning can replace traditional learning but used correctly can augment traditional learning and help to create easier access to knowledge and learning which can be a huge hurdle in a hospital as capturing everyone to be taught certain things like delirium can be difficult but a e-learning program that augments the existing system can help ensure people are not missed or feeling disempowered by others who have had training they have not.

And after this, we had a break which I was thankful for as my brain was hurting right about now and a water break. We are nearly done for this blog honest, I know its a lot but I broke it up with pictures for your viewing pleasure? I know, I know I am getting sidetracked with my witty repartee.




So next was the second last session of the day for me was another one close to my heart. Assessment and management of distress in delirium by Dr Jude Partridge and Ms Ffion Pritchard(Above). It was an engrossing presentation which touched on the lack of aftercare for delirium and even mentioned InS:PIRE and the importance it plays in Post-ICU delirium recovery. These are things I feel strongly about given I am a post ICU survivor who had delirium. But they spoke about something that maybe doesn't get talked about enough and that is the shame of delirium, everyone here has known me post ICU, I didn't have twitter or this blog before so you don't know about my time immediately after my delirium. 

There is a reason for that and it's simple I write about what I want to and what I think is important and this is a topic that is hard to talk about or understand when looking from the outside. When I was back in the world after my delirium, I was told what I had been like, paranoid, untrusting, belligerent, things that are very much not me. I was then moved back to the medical high dependency unit I had been in before being admitted to ICU and the nurses said how much better I was looking than the last time they saw me. Now this should have been a positive and uplifting moment but it put me to the floor because they knew what I had done, they saw me act that way. I remember apologizing to one of the nurses and crying because I was ashamed of how I had acted. Being the extremely kind and considerate lady she was the nurse told me it was alright and that she knew I was very unwell and it wasn't the real me. But I just want you to understand that the shame of delirium stays with you, I am still saddened when I think about how I was then, even knowing that I had no control over it or even been able to change it in any way.

I was greatly helped with my ICU delirium by the InS:PIRE clinic but not everyone who has delirium receives any aftercare. In fact, not everyone with ICU delirium receives aftercare, this needs to be addressed. Delirium destroys you, it leaves behind a broken shell and we need to help people who have overcome it to get back to something like normal life.

The Last session of the day for me was Dr Teodorczuk's The wicked problem of Delirium education: aligning medical education and research. I won't lie this was not aimed at me or even anything I could really contribute to but I thought it sounded interesting. From the people I talked to it sounds like it was a great session but was more relevant as you might have guessed to HCP particularly educators in those settings. Anyone Involved in delirium education and wants to share things you are doing if you use #DelEd on twitter to help show the world the great things you are doing. Below is a video I did with Dr Teodorczuk at the conference. 


















I hope you all enjoyed this blog, it has been a slog through me being unwell after the conference, college work and it just being a huge topic. Thank you for reading and I hope you enjoyed it. If I can ask a question of you, What do you think is the most important thing in Delirium care?

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