Lumbar puncture: a patient experience
One patient who was treated for encephalitis (inflammation of the brain tissue) used Twitter to record his day at the Wessex Neurological Centre. He came in for a lumbar puncture, where a sample of fluid is taken from the spine.
We asked permission from the author (@encephsurvivor) before publishing his tweets on this website, and the photos are his, too. We’ve edited out a few of his messages to other people and where you see […] we’ve also edited out a couple of words to make the transcript easier to follow as a story.
Further down the page, read the response from the Wessex Neurological Centre, and find out how you can give us your feedback and follow us on Twitter.
Here’s how our patient got on:
The day before
Lumbar Puncture in the morning! Let's hope they don't breathalise me. Not looking forward to it! Won't sleep tonight! […] #encephsurvivor
On the day (approximate times)
Well I'm here, & for a change I'm early for something! Not been on Level E before. What a dump! I'm a survivor!! #encephsurvivor
Sat in the Day Room […] having had my MRSA test. Going to be a long day but I have my […] coursework to do #encephsurvivor
Thanks to everyone for kind words. I'll be fine! I'm just a Big-Girls-Blouse who hates needles. #encephsurvivor
Just been sent from 1 side of the hospital to the other for blood tests! More needles! I seem to be doing blood tests every month at the mo!
So I'm thinking of tweeting the diary of my day in Wessex Neurology having a lumbar puncture. Will it make interesting reading? Thoughts??
Blood test done. At least at phlebotomy they do it all day and so do a professional painfree job! Only 2 tubes worth #encephalitis
As I come to understand twitter more I realise we're not always doing it right to raise awareness. We MUST start trending #encephalitis
If you have the encephalitis twibbon make sure every tweet ends #encephalitis that way we raise awareness & maybe 1 day we'll be top trend
Top 'Trends' get mentioned on the radio, in papers & everyone gets to see them in the right and twitter column headed trends #encephalitis
Ok so I'm back in the day room! Missed the tea trolley while I was doing bloods! Typical! 1 other guy here also for LP. #encephalitis
Me & the day room! Hardly the cosiest or most comfortable of places to spend a day #encephalitis
@SUHT nice to know you're there and following. #encephalitis #encephsurvivor
Ok nearly 11am. Still sat in dayroom bored listening to iPod, thank god for #Glee. Other guy has just been taken away. Gulp #encephalitis
View from Dayroom window. Starting to brighten up outside not that I'll be getting out there for a while #encephalitis
Nearly 12! 3 hours, bored bored bored! Dayroom not exciting and no one communicating anything to me! How much longer! #encephalitis
Communication at the beginning of the day would be SO useful! Procedure, timings, delays. Not difficult to do, Courteous too #encephalitis
Apparently it's advisable to drink plenty of water before & after a lumbar puncture... There isn't any... & my cup of tea :-( #encephalitis
OK here we go folks, consent form signed and equipment prepped! B*llo*cks!! #encephsurvivor #encephalitis
I'm done. 7 vials totalling about 10mls of fluid plus lots more blood for comparisons. Was going to take photos but didn't #encephalitis
Flat on my back recovering with a ham sandwich at hand as I mustn't lift my head. #encephalitis
Not got a cuppa yet but have to drink all of that over the next hour. Time for my Pure Calm CD. & relax #encephalitis
And so this is me, not an average day but I've had worse! Wish my FH was here to keep me company #encephalitis
So far I've managed to drop 2 drinking straws down the side of the bed! Too embarrassed to ask for another #encephsurvivor #encephalitis
Someone sucked my brain out! I'm sure I could hear my brain draining during the LP it was a strange inside my head noise #encephalitis
@DoctorChristian can people hear the CSF running out of their brain as it's being drained during a lumbar puncture? #encephalitis
No rest for the wicked! Times up, hour's over! stood up, bed was stripped before I could sit back down! Released but sore #encephalitis
Made it down to the cafe... Now how to get home as I'm earlier than planned with nearly 4 hours till my lift comes... #encephalitis
@SUHT despite my infernal whining thanks for the high level of care today. You all do a great job & you're rarely praised #encephalitis
Wessex Neurological Centre response
As a result of reading this patient’s commentary on our service, the Wessex Neurological Centre said:
"We’re glad to hear that you had an overall positive experience when you came in to the unit and that you received a high standard of care from us.
"We understand it can be a long and frustrating day, especially as you have to have other tests before this procedure can be performed. Unfortunately sometimes there are also delays when we have patients with complicated or unexpected conditions coming into other parts of the department.
"We agree we could improve our communication especially when there are delays, and we have raised this with our team. We are also looking into ways we can make the waiting environment better for our patients."
Feedback about your experiences
There are several ways to tell us about your experiences.
If you or a friend or relative are currently in hospital, you should first raise issues by talking to the ward staff and the matron, so we can help as soon as possible.
Find out more about getting help, raising concerns or making a complaint.
UHS on Twitter
You can follow @uhsft on Twitter and read our latest tweets at http://twitter.com/uhsft
We regularly monitor Twitter for feedback from patients, visitors, stakeholders and everyone else who uses our services but we may not pick up every comment. If you’d like to draw our attention to your tweets about your experience in our hospitals, please send us an @ message or DM.