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?

Monday, 9 September 2019

EDA Conference and Training day pt 1.

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.

Monday, 26 August 2019

Sunshine

 The Sun blazing down on me,
Heating the air like an oven around me,
The air clear and fresh, colours so bright,
A cooling breeze making it bearable.

Windows open to kill the house,
Hoping to stop the temperature rising,
A battle I cannot win, starting to sweat,
Cars passing breaking up the silence,
The only sign that time was moving.

The yellow glow of light hanging in the sky,
Seemingly motionless with the heat overbearing,
Not a single cloud to block its sight,
Ever seeing, ever bright, ever burning.

Every floor showing under its inspection,
The glow-giving no quarter, clear of vision,
Every second wife renewed, give him energy and hope,

It is the spring the time of renewal. 



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The Sun dances in and out,
But when it is here it screams and shouts,
Say I'm here, for now, to sweat you out,
Hydration is key in these times of heat,
If I get dehydrated I will taste defeat.

Some days Hotter than the fires of Hell,
Next comes rain and coolness for all,
This is summer here in Scotland that is true,
Waking up in the morning with absolutely no clue,
Will, it be Hot or will it not,
Sometimes you have to go outside and just take a shot.

This is our penance for the gifts we are given,
A landscape that was surely from heaven,
Water so clean and so very pure,
River fill with fish I'm absolutely sure,
We here in Scotland are so very fortunate,
For we have everything you could ever have needed.

So in this the summer that has burned so hot,
I say roll on autumn so I can finally move,
For all of this heat for me is bad news,
A danger to stoma it is very true,
But here is a secret just for me and you,
I am thankful every day that I am alive,
For too close to its end, I have come.



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Hey Guys I am still alive but between the heat, preparing for the EDA conference and teaching day and a lack of inspiration I have been a bit quiet but I found the first poem I wrote in the spring so I decided to add one about summer so that it was 'up to' date. I have a lot of things going on with my health at the moment so I have been a bit less motivated but I am trying to get back into writing my poems as they help me cope. I hope you all enjoy them and if you are experiencing the heatwave at the moment whether you are a doctor, nurse,  patient or anyone else please make sure you drink enough dehydration is very easy to get into but can be a lot harder to get out and can be very dangerous.

Thank you, everyone, for reading these and I really hope you enjoy them.





Saturday, 3 August 2019

Delirium: A bullet to the brain!

Ok, so I don't normally put warnings on my writing because I think if you come here you know what to expect. It is after all a blog/poem page about my medical life. However, this poem is a little different and being at least slightly self-aware I know that my experience may be upsetting to others.
If suicide or self-harm topics will cause you distress or upset please stop reading. If it is a topic you are not comfortable talking about or do not feel comfortable with do not read any further. Have a lovely day and please understand that the experiences that follow are mine and are from my delirium. I did not actually do them but I believed I did in that state as I thought it was the best thing to do at the time. I am safe, happy and not a danger to myself. Thank you for your concern it is greatly appreciated and I love every single one of you. Scroll to find the poem I am putting a large block of white space in an attempt to make it so you don't read it accidentally when you don't want too.

Resources Regarding Delirium NB. these are endorsements and my recommendations:

http://www.scottishdeliriumassociation.com/
http://www.criticalcarerecovery.com/




TW suicide and self-harm
















































Delirium is crazy it makes you insane,
Believing things that make no sense,
Being hunted down worldwide by nameless foes,
Being held down in water drowning to death,
Brought back to suffer some more.

Cut open and made to bleed from my wrist,
Suffering for information I won't give,
Put in situations designed to cause harm,
Put in a freezer to try and kill me.

Shock probes in my arms to force the truth,
But in my defence I was absolute,
I would not betray the safety of my family,
I would not give in to those who harmed me,
They have so much to live for and achieve,
So Stalwart in my resistance and belief.

The toll it was taking in seven years,
Poking at my weakness and vulnerabilities,
Breaking me down with time I sensed,
Found a gun and put it to the side of my head,
Pulling the trigger hoping for death,
Keeping my family safe with the last act,
Time slows, the fire burrowing deep in my brain,
Then darkness for a second, then back to hell again.

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Hey guys thanks for reading I hope this gives a more in-depth idea of what delirium is like. It was the worst time of my life and I hope you can understand these types of experience and why it can cause mental health issues. Delirium is a nightmare you can't escape or tell it is a nightmare. I am three and a half years after my delirium incident but it still affects my mental ability, thinking and concentration. It is not a joke, it is an extremely serious issue.









Thursday, 25 July 2019

My Immune System

Its an oxymoron in reality,
Low counts with hyperactivity,
Low numbers but massive self-damage,
Weakening me to all sorts of infection.

White cell count constantly on the floor,
Count of .8 rarely more,
Prophylaxis administered to keep me safe,
Every runny nose or sore throat, a terror in my soul,
Every coughing person a threat to my life.

Reclusive I became as safety was my aim,
But mental health can't survive when left alone,
So, balance the risk of socialising I must,
Hand gel and hand wash my soldier in defence,
Reducing contact, another field of the fight,
Choosing carefully where and when I commit my life. 

For 2 years I was asked what chemo I was on,
As that was the logical explanation for my plight,
For the risk infection posses to my life,
Why I can't have live vaccines ever in my life,
It is easy to laugh and easy to joke,
But the simplest of infections can land me in hospital,
If even a day I delay, In ICU I might end up laid. 

Wednesday, 17 July 2019

My Friend: Kate

My Friend Kate, Isn't she great,
Helping all those patients rehabilitate,
With Hovis the dog and a dam cape,
Battling Delirium in her ICU,
Fighting for the garden for all to recuperate.

Bring positivity and bright light,
To all those who help in the rehabilitation fight,
Lightboxes distributed freely with joy,
Even gave one to this here boy.

Helping promote causes close to her heart,
Working really hard to mend what's torn apart,
Bring joy and happiness to everyone,
Bringing positivity on twitter I see,
Now in charge of @NHS for a whole week.

All those #RehabLegends being brought to sight,
All the hard work for all to see,
People working hard helping people like me,
Bring the NHS social Media might,
To show all the great people working into the night,
Every single hour of every single day,
Superheros of the NHS are saving the day.



Ok so this poem is about Kate Tantam I Have never met her in person but she sent me the lightbox you see on my twitter account. I really appreciated it, I don't do anything for acclaim but it is always nice when someone says your doing a good job. In fact, in this case, it brought me to tears, it was an act of kindness which touched me greatly.

I have not been feeling very creative the last few weeks so I had been thinking of ending the #MarksWednesdayPoetry but the last two weeks I have got inspired the day before. I hope you still like these but I can't see it happening weekly anymore as I am all creativitied out :) 

Wednesday, 10 July 2019

Pleasantly Confused?

Pleasantly Confused?
As a term leaves me utterly bemused,
Your lack of understanding can be excused,
With my words, this explosive term will be diffused,
It's not your fault this term you've misused,
A little understanding of the term I'll infuse.

Pleasantly Confused?
I was neither you see,
Delirium's not fun in any which way,
In a constant state of fear all day?
Absolutely certain I was being harmed,
Absolute clarity in the pain I was dealt,
Every single cut, every terror-filled moment felt.

Pleasantly Confused?
I'm absolutely certain you tried to slit my throat,
Wonder why I don't trust you?
Would you, you are my jailer, my abuser,
Confused, why your help is refused?

Pleasantly Confused?
I'm not agitated or confused, I'm Terrified,
Just because you can't see it doesn't make it less real to me,
Just because no blood test shows it doesn't make it less real to me,
Just because you don't understand it doesn't make it less real to me,
You understand other illnesses so why not Delirium?











Ok So thanks for reading the poem, Delirium is a very serious issue, as you will all know I had ICU delirium. So when I hear the term confused I get very angry, it speaks to a fundamental lack of understanding, now I get that the education on delirium hasn't been great and as such the medical profession has been severely let down. But you can help bring about the change and get rid of this term being used, Delirium is not a dirty word or a death sentence. Use the 4AT, CAM-ICU, CAM, DSM-V or whatever tool your hospital uses, speak to the trained people in diagnosing delirium. Everyone is on the same team, noticing, diagnosis and treating delirium can have a huge impact on the after-effects the patient suffers. So, please help make the world a bit better for Delirium sufferers and survivors.






SIGN created an excellent guideline which gives a whole host of extremely useful information:















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 d...