I wanna sing, I wanna shout,
I wanna scream till the words dry out.
So put it in all of the papers, I’m not afraid,
They can read all about it, read all about it
Okay, I'm not Emily Sandé and I didn't sing but the sentiment is right. Yesterday I got up and said it as it is and told a room full of consultants, paramedics, nurses and medical professionals a patient's experience of dealing and coping with the reality and following fallout caused by critical illness.
As you know dear reader, I was invited to speak at
Saving Lives-Sepsis Conference down in the Big Smoke. You'll notice in the above paragraph I did not say sepsis. Sepsis is not a thing on its own. Certainly in my case, it's one part of a very bigger jigsaw and you need all the pieces to show the whole picture: how it all began, hospital, home, coping..... ultimately everything that is contained within this blog. This is something that I had always kind of wanted to do. "Just put me in a room full of doctors and I'll bloody tell them how it is. They have no idea!" and that is sort of true. They don't have any idea. Once you leave the hospital, they have to move on to the next case. I guess they cannot take an active interest in every patient BUT they do need to know what can happen and how lives are effected. Enter Phil Crow, soap box under my arm!
Putting my 20-25 mins together was quite difficult emotionally. Thank goodness I have this blog to refer to as bits would have been forgotten or possibly more traumatic in redressing in conversation with the family. This was always something I needed to put together on my own, then and only then, bounce it off a couple of trusted friends (thank you Frank, Lynn, Simon and of course, my Helen) edit and go again. The first time I read it out loud I couldn't stop crying. Bloody hell Phil, pull yourself together! Wow, this is gonna be more difficult than I thought. Ok, read it to a few more people and you'll desensitise yourself to it. That sort of worked. So I got the text complete and me 'desensitised' before I went into hospital for the hernia operation. I'd made Aggi, my Lincoln sister, promise that if anything happened during the operation that she would go and read this out for me. Good. Sorted. Off to Nottingham.
Right, that seems to have gone well, I'll be fine doing the presentation myself. The day before going, I checked over the text, made a couple of changes and read it out loud on my own. Not too bad. Note to self - look up a bit more! In the afternoon I read it out to my very good mate, Simon who does alot of presenting. I blubbed. I wasn't supposed to but I got caught on a couple of bits and choked. "brilliant" he said. You need some of that. It makes it more real, more you and that is why you're doing this... It has to be emotional. I guess he was right. Amongst a day of clinical presentations and the possibility of 'death by PowerPoint' my bit was to be heartfelt and on the day, it was.
Petrified in the build up and listening to
Ron Daniels opening presentation, I got more and more nervous. Listening to him introducing me (slightly embarrassing as I'm not very good about blowing my own trumpet, or anyone else blowing it for me...so to speak!) nerves just disappeared, I got up and got on with it. Looking up was not as difficult as I thought. Looking at the audience they actually seemed attentive. Yes, I choked WAY more times than I expected but it was genuine. By the end I was almost in tears. Blimey. Was that okay then?
And then it was over and on to a small Q&A followed by coffee break.
Feedback was actually quite humbling. The majority of it was something like "that was brilliant. I could not have got up and done that!" Jeez, someone even used the word 'inspirational' again. I really do not feel inspirational at all. All I wanted was to drill it into their heads what survivors of sepsis and their families have to go through and how we are treated by the outside world (by that I mean by insurance companies, self employed/sick pay etc) and how, even years later counselling may still be needed and the effect on the family unit. I think they got the message.
Twitter was also buzzing under the hash tag #sepsis2013 all day, and I got a couple over very kind remarks:
Best of luck to good mate @digitalcrow who's giving a speech at #Sepsis Conference today
@digitalcrow Thanks for an inspiring talk from the patient's perspective #Sepsis2013
#sepsis2013 Emotional talk given by sepsis survivor, hitting home how sepsis can impact on people's lives, thank you. @WeParamedics
A most humbling & inspiring story of surviving sepsis from @digitalcrow #sepsis2013
After listening to @digitalcrow story today, this quote I read via @skram at #TEDMED resonates "recruit the heart and then train the brain"
Thank you @SepsisUK @digitalcrow @MicrobLog_me_uk for the excellent presentations today. Informative & thought provoking #Sepsis2013
Hugely proud of my inspirational friend @digitalcrow for telling it like it is @SepsisUK today
So there you go. That was the day I got the opportunity to tell it as it is. Do I feel better for it? I think so. I'm glad I did it. Would I do it again? Depends on who the audience is and if it would help make a difference. Ha, a room full of insurance companies would be good. Sepsis... No a critical illness?!...Shame on you! Financial Ombudsman.... PTSD, not exceptional circumstances?!.... shame on you as well! Bastards.
There will me a paragraph to follow. Apparently my presentation will be evaluated from questionnaires that all delegates at the conference fill out. Good or bad, I promise to post results for your delectation. Watch this space!
1 June and I'm finally posting the comments... unedited, as I got them!
1.
How did you rate the conference?
|
|
Sepsis
|
Sepsis %
|
|
Excellent
|
5
|
63%
|
|
Good
|
3
|
38%
|
|
Average
|
0
|
0%
|
|
Poor
|
0
|
0%
|
|
Very Poor
|
0
|
0%
|
|
Total
|
0
|
101%
|
6 Thank you for such a motivational event
2.
How did you rate the individual sessions? Please rate each speaker and session
on a scale of 1 to 5 (with 5 being very good and 1 being poor).
|
Speaker
|
Presentation
Skills
Rating
|
Subject
Content
Rating
|
|
Phil Crow
|
1
|
2
|
3
|
4
|
5
|
1
|
2
|
3
|
4
|
5
|
|
0
|
0
|
1
|
5
|
6
|
0
|
0
|
0
|
1
|
11
|
|
0%
|
0%
|
8%
|
42%
|
50%
|
0%
|
0%
|
0%
|
8%
|
92%
|
|
Comments:
|
2 Moving. Pat perspective always important
4 My main reason for attending
today was to re-motivate me to continue my sepsis journey. Phil’s story has given me this
8 Powerful
|
6. What topics would you like to see covered at future conferences?
Maternal/paed sepsis/obstetric difficulties
Future challenges – eg multiple drug resistance
Manual obs – back to basics
Intentional rounding – do we have to prescribe care?
Nurse prescr vs accurate drug admin
When sepsis can be managed in community
Major trauma network ops
8.
What was your overall impression of the conference?
2 Hopefully
will give my trust the impetus to introduce a pn (?) hosp screening tool
3 Excellent
– motivational and inspirational speakers and topic – flowed well
5 V good
speakers. Informative and from a wide
range of specialities
6 V much
enjoyed whole event. I have learnt many
points from the various speakers. I am
really excited about the future of our abilities to treat sepsis more
effectively
10 V
relevant to practice
