Author Topic: Kings College Hospital - mixed experience  (Read 2222 times)

itsbruce

  • Lavender Bike Menace
Kings College Hospital - mixed experience
« on: 08 June, 2014, 03:24:19 am »
Back on the 4th of May, I was sent flying off my bike, through the air and landed on the edge of the curb - on my head.  I ended up in Kings College Hospital, where the surgeons of the ICU performed a craniotomy to relieve blood pressure on my brain.  Thus far, as medical treatment goes, so good.  After a day and a half in ICU, I was moved to a care ward and a different team, at which point things became much less good.  The team was very poor at communication - with each other and with the patients.  The nurses refused to explain my status or the purpose of their actions.   The doctors were better but mostly very uninvolved; they didn't bother the nurses much and if they did, the nurses didn't listen.  I quickly learned that any questions or requests for alterations to the routine would be classified as symptoms of brain damage and get me in trouble.  This was a particular problem given that the nurses simply did not let me sleep.  For 7 days. 7 days.

It was important to check my blood pressure, absolutely.  The nurses checked my blood pressure and tested my reactions every 90 minutes.  Every 90 minutes.  I tried to explain to them that this was preventing me from sleeping.  My head was sore (not least because it had three dozen metal staples holding my skull together) and so were my shoulder and ribs; getting to sleep after any disruption was slow.  Disturbing me every 90 minutes guaranteed no sleep.  I tried to reason with them that after the first few tests - which showed that not only was my blood pressure safely down but that my mental capacity was well restored - it might be smart for them to lengthen the period between tests, so that I could get some rest.  Not only did they not listen, they accused me of being mentally unstable, so I shut up.  They had a scale of 0 to 15 for mental agility/capacity and since the sedation had worn off (on the second day), my score had gone up to 15, but any questions or complaints from me would see me classed as a violent and aggressive patient.

7 days.  Near the end, my blood pressure began to rise again.  Small wonder, given the lack of sleep and resulting tension.

I did encounter one doctor who listened to me and who tried to get the nurses to co-operate, but while they did, at his request, remove the staples, they refused to change the rest of their routine.

I had no access to my mobile phone, was not given access to the hospital phone system or the internet.  If a friend hadn't happened to learn of my situation on the first day, my family, workplace and friends would have had no idea where I was.

On the eighth day, I walked out of the ward.  I live a few minutes from the hospital and I hadn't slept for a week.  I needed the sleep.  Living in the rougher edge of Camberwell means that walking down the road in pyjamas caused no comment at all.  The nurses called the police, who knocked on my door, talked to me, realised I wasn't mad but just tired and left me alone, on the condition that I did, as I had explained I would, return to the hospital the next day.

I had a night's sleep.  It was wonderful.  I contacted my work, friends and family.  I returned to the ward and said "I feel much better, let's continue.".  They told me to get lost.  As far as they were concerned, I had checked myself out.  They were going to reuse the bed.  Given the seriousness of my injury, this was more than a little disturbing.  I went to my GP practice, which has not only an excellent duty nurse but a GP who is also a qualified surgeon.  They looked after me so much better than the KCH team that I could have cried from relief.  Apart from anything else, they gave me useful painkillers which helped me rest and sleep.  My blood pressure is healthily low, my strength and energy is back.

My mental faculties were restored very quickly after the accident.  My physical resources were restored once I got off the damned ward and had some proper medical care.  This week, I happened to look through the bag of pills the hospital gave me when I left (and which I never touched, because I did not trust the team).  Was it painkillers or antibiotics?  No.  It was powerful anti-psychotic drugs - which they put me on shortly after I moved to their ward  Do you know how recommended anti-psychotics are for simple head injuries?  They aren't at all.  They either do no good or make things significantly more dangerous (one of the side effects is the risk of passing out and falling over - great for somebody with a head injury and a skull still healing).  But I had questioned their behaviour and this was my reward.

A "therapist" from KCH rang me a couple of weeks ago.  It became clear, quite quickly, that either he had not read the notes on my treatment or there simply were no notes.  It took some time to make him realise that I'm not some barely functioning vegetable.  He said I would be asked to go to the head injuries unit for a check-up.  No letter has arrived since that conversation.  The hospital has refused to give any information to my GP practice about my treatment at KCH.

There are good departments and  teams in KCH (A&E, Radiology, Fracture clinic, to name just a few), but the one I ended up under is horrible and dysfunctional. I don't think I will ever feel secure walking through the doors anywhere in that hospital again.  I would, at the very least, need to know that I could safely walk back out a door without any risk of the staff restricting me as those bastards did.

The team was named after it's consultant, whom I never met.  From my experience, he's either incompetent or malign.  Either he does nothing to repair the various bad practices of the team (poor communication, secretive and paranoid behaviour), or he causes them.  He's the boss.

The ward had two other guys who had been there for a couple of months and had no idea why they were still there or what the timetable for their treatment/release might be.  I really hope things have improved for them.  I pity anybody under the hands of that team.
I saw the best minds of my generation destroyed by madness, starving hysterical naked: Allen Ginsberg
The best minds of my generation are thinking about how to make people click ads: Jeff Hammerbacher

Re: Kings College Hospital - mixed experience
« Reply #1 on: 08 June, 2014, 08:53:33 am »
Sobering reading, glad you are better. From here it sounds like material not just for a complaint but discussion with the press, although there are those here who will know the systems more intimately.

Re: Kings College Hospital - mixed experience
« Reply #2 on: 08 June, 2014, 09:41:18 am »
Shudder, that sounds nightmarish. Very glad you managed to get good care and are feeling better. Good luck in whatever you plan to do next about your experience.

Re: Kings College Hospital - mixed experience
« Reply #3 on: 08 June, 2014, 11:35:08 am »
Blimey. Glad that you're getting better. Judged by outcome for the very severely injured, Kings is the best major trauma centre in the country (although only marginally better than Leeds, where Yours Truly works.  :demon: ;D)

To be fair, the experience (initial emergency care and ICU good, ward care much less so) is not uncommon. Head-injured patients may likewise have disabling mental faculty and personality change even when their Glasgow Coma Score is back to the normal 15. The GCS is geared towards monitoring the acute severe situation. Yours also wasn't a simple head injury - not if you ended up with a craniotomy! Antipsychotics do have a role in that group of patients. So I can't say that what happened to you was all wrong.


BUT. The ward care and management of you as a person rather than as a collection of injuries sounds piss-poor. What you're describing actually sounds like unlawful deprivation of liberty to me. Were you sectioned during the initial phase?

Make some notes now. Then consider whether to complain once you're better. I'd suggest that you do, if your recollection of events is clear.

hellymedic

  • Just do it!
Re: Kings College Hospital - mixed experience
« Reply #4 on: 08 June, 2014, 11:58:14 am »
Sorry to hear of your crash and I hope you continue to recover well.

I spent half an hour watching 'Hello my name is Kate' yesterday.
http://play.buto.tv/HMzZc
Great education for doctors and others!

Kate experienced many of the issues you describe; you are not alone!

Production-line medicine, with too many tick-boxes and too little thought produce this crap care.

GET WELL SOON!

Be gentle with yourself; whilst you have good cognitive function, some head injuries have subtle long-lasting effects.
These include short temper, poor concentration, poor attention span, headache and fatigue.
If you have these, accept they are part of the injury and don't beat yourself up. If you don't have them, GREAT!

Getting over a head injury can take a very long time. Give yourself this time if you need it.

GET WELL SOON!

itsbruce

  • Lavender Bike Menace
Re: Kings College Hospital - mixed experience
« Reply #5 on: 08 June, 2014, 03:14:11 pm »

BUT. The ward care and management of you as a person rather than as a collection of injuries sounds piss-poor. What you're describing actually sounds like unlawful deprivation of liberty to me. Were you sectioned during the initial phase?


No.  I was heavily sedated for the first day and not entirely on planet Earth, mentally.  On day 2, as I returned to reality, I discovered I was wearing some bizarre mittens - gauze things with huge pads covering the underside of my hands.  When I asked what they were for and if they might come off, the nurses quite seriously said that it was to stop me from attacking anybody.  I'm still not sure whether that was a wry joke, delivered in deadpan style, because I would hope the actual reason was to stop me picking at the scar on my head while I was sedated.  Got them off when I was moved, anyway.

I know KCH staff do suffer assaults and verbal abuse from injured patients and I really don't have any reason to complain about my time in ICU.  But the team I was handed over to treated me like an idiot child; if I made any requests for information or attempted to communicate about the nature of my treatment, it was treated as problem behaviour.  I was told that persisting would see my "behaviour score" marked down, sedatives reintroduced and my eventual discharge delayed.  Since I was alert enough to see the problems caused by their protocols, and to see what a slow, remote round-trip was the communication about my status, this was very frustrating.

Because the craniotomy was on the side of my skull, near my temple, it aggravated my sinuses.  This caused a constant trickle of mucus onto my epiglottis, which made it very difficult for me to drink, eat or breathe deeply.  Not only was this another reason why it took me time to get to sleep (not that they ever let me), it made it difficult for me to take medication (big risk of choking).  Despite my determined co-operation and my attempt to tell them why taking a pill (and drinking the cup of water they gave me with it) was slow and difficult, this was also treated as bad behaviour on my part.

I did actually manage one very brief doze on the 4th day, during a visit by some of my family.  My folks had been shocked by my clear exhaustion and fatigue, were happy to see me finally get a little rest - only to be appalled to see one of the staff shake me awake, put me through another test and make me sit up from then on.  Never managed another doze.

Most perplexingly, I was given no information about what the course of my treatment and recovery was likely to be.  No information about what I could expect, what I should prepare for, what they were planning.  I was just expected to do what I was told.  Even without the sleep deprivation, that would have been depressing.

In the end, I had no choice but to take control of my own life again.  It was a frightening thing to do, partly because of the way the team had intimidated me, partly because I knew I was seriously injured and needed support.


Be gentle with yourself; whilst you have good cognitive function, some head injuries have subtle long-lasting effects.
These include short temper, poor concentration, poor attention span, headache and fatigue.
If you have these, accept they are part of the injury and don't beat yourself up. If you don't have them, GREAT!


Don't have the short temper, don't have headaches per se (the healing part of my skull does throb a little, sometimes), but lack of concentration and fatigue are issues.  I'm back at work now, but am working shorter days and not pushing myself.
I saw the best minds of my generation destroyed by madness, starving hysterical naked: Allen Ginsberg
The best minds of my generation are thinking about how to make people click ads: Jeff Hammerbacher

Re: Kings College Hospital - mixed experience
« Reply #6 on: 08 June, 2014, 06:59:05 pm »
Very disturbing story, itsbruce.

Shades of One Flew Over The Cuckoo’s Nest.

if I made any requests for information or attempted to communicate about the nature of my treatment, it was treated as problem behaviour.  I was told that persisting would see my "behaviour score" marked down, sedatives reintroduced and my eventual discharge delayed. 

My first reaction was to suggest discussing this with PALS but, for various reasons, I suspect that this would be a total waste of time, as they will only take a serious interest if they suspect that money might be involved.


BUT. The ward care and management of you as a person rather than as a collection of injuries sounds piss-poor. What you're describing actually sounds like unlawful deprivation of liberty to me.

If this had happened to me, I’d be considering who to speak to in the press to ensure this matter is brought to public attention.

Most perplexingly, I was given no information about what the course of my treatment and recovery was likely to be.  No information about what I could expect, what I should prepare for, what they were planning.  I was just expected to do what I was told.

This is terrible.

Hope your recovery continues to go well.

Re: Kings College Hospital - mixed experience
« Reply #7 on: 08 June, 2014, 08:15:25 pm »
I was heavily sedated for the first day and not entirely on planet Earth, mentally.  On day 2, as I returned to reality, I discovered I was wearing some bizarre mittens - gauze things with huge pads covering the underside of my hands.  When I asked what they were for and if they might come off, the nurses quite seriously said that it was to stop me from attacking anybody.  I'm still not sure whether that was a wry joke, delivered in deadpan style


Unfortunately probably simply true. That initial coming-round is often stormy. The punches aren't usually aimed well, mind. And drips/drains/feeding tubes/breathing tubes are also at risk if folk have the full use of their fingers but not of their minds.

Good luck. GWS. Truly.

Ruth

Re: Kings College Hospital - mixed experience
« Reply #8 on: 08 June, 2014, 08:33:02 pm »
Yes, GWS Bruce.

Can I suggest that for now you put priority on your own healing, and try to put that experience out of your mind?  My experience of complaining was that it is stressful and exhausting, which you don't need right now.  Write down what you can remember for later on.  But concentrate on getting better. 

I'm so sorry you've been through this awful thing.

itsbruce

  • Lavender Bike Menace
Re: Kings College Hospital - mixed experience
« Reply #9 on: 08 June, 2014, 10:51:28 pm »
I'm not interested in complaining.  I doubt it would have any effect and I don't have the time.  I do need to get the right people at KCH to communicate with my GP and that will be tiring enough, from past experience of trying to get *anything* done with that team.
I saw the best minds of my generation destroyed by madness, starving hysterical naked: Allen Ginsberg
The best minds of my generation are thinking about how to make people click ads: Jeff Hammerbacher

Gattopardo

  • Lord of the sith
  • Overseaing the building of the death star
Re: Kings College Hospital - mixed experience
« Reply #10 on: 09 June, 2014, 01:03:56 am »
Is there a pals (patient and liason service) who could help?  Think the details are here : http://www.kch.nhs.uk/patientsvisitors/help-and-support/pals

Please do something, as there needs to be feed back as to what happened.  To help others in the same situation.


Jakob

Re: Kings College Hospital - mixed experience
« Reply #11 on: 09 June, 2014, 08:38:55 am »
Ouch!. While I did find the communication loop a bit frustrating on my recent hospital stay, it was nowhere near as bad as this.
GWS!

Re: Kings College Hospital - mixed experience
« Reply #12 on: 09 June, 2014, 04:17:00 pm »
I'm not interested in complaining.  I doubt it would have any effect and I don't have the time.

I can quite understand that.


Re: Kings College Hospital - mixed experience
« Reply #13 on: 09 June, 2014, 04:36:30 pm »
That sounds dreadful.

The bit I really don't understand is that there seemed to be no attempt to contact a next of kin. I would have thought that taking those details would be standard procedure.

The waking you thing might also have been because people with brain hemorrhages can very easily just drift off in their sleep. Although many years ago I was in hospital for burns and was woken every two hours or less, for days on end. After a week I was going crazy for lack of sleep.
<i>Marmite slave</i>

itsbruce

  • Lavender Bike Menace
Re: Kings College Hospital - mixed experience
« Reply #14 on: 09 June, 2014, 04:52:01 pm »
The police took my mobile phone and used it to contact some friends.  The hospital paid no attention to that, nor did they provide any information or follow it up. 
I saw the best minds of my generation destroyed by madness, starving hysterical naked: Allen Ginsberg
The best minds of my generation are thinking about how to make people click ads: Jeff Hammerbacher

Re: Kings College Hospital - mixed experience
« Reply #15 on: 09 June, 2014, 05:00:38 pm »
You were visited by family - you've said that - who were told by a friend (was contacted by the police immediately after the accident).

So when did members of your family come into the hospital?
<i>Marmite slave</i>

itsbruce

  • Lavender Bike Menace
Re: Kings College Hospital - mixed experience
« Reply #16 on: 09 June, 2014, 05:02:51 pm »
On the 2nd and 4th days. It was my girlfriend - one of the people phoned by the police - who contacted my family, kept them informed and helped synchronise visits.  The police told her what they knew; the hospital team did nothing to help, nor did they do anything to keep them updated. The team seemed completely oblivious to anything other than my status as a piece of injured meat being monitored.
I saw the best minds of my generation destroyed by madness, starving hysterical naked: Allen Ginsberg
The best minds of my generation are thinking about how to make people click ads: Jeff Hammerbacher

itsbruce

  • Lavender Bike Menace
Re: Kings College Hospital - mixed experience
« Reply #17 on: 23 June, 2014, 11:07:54 pm »
I have been chasing the hospital to try and

  • Find out why there has been no contact from them since a therapist promised a referral to the head injuries unit for a follow-up.
  • Arrange the promised referral.  I had a very serious accident followed by critical surgery and need both a proper check-up, also proper information and advice.
  • Put the team which cared for me in touch with my GP, so that information can be forwarded/shared.
  • Find out anything definite about the surgery that was performed on me.  Since I was never told, all I can do is guess from the scars and the after effects.
None of the departments I have phoned have been able to help or find any information at all.  I'm now waiting for PALS to try and track it down.  Nothing so far.

It is beyond frustrating to be left in limbo after life-threatening injury and head/brain surgery.
I saw the best minds of my generation destroyed by madness, starving hysterical naked: Allen Ginsberg
The best minds of my generation are thinking about how to make people click ads: Jeff Hammerbacher

hellymedic

  • Just do it!
Re: Kings College Hospital - mixed experience
« Reply #18 on: 24 June, 2014, 12:08:05 am »
I suggest you try to get your GP to demand/request a detailed Discharge Summary and request a copy.

Hospitals are supposed to send a summary after every admission and your GP ought to have received one by now.

itsbruce

  • Lavender Bike Menace
Re: Kings College Hospital - mixed experience
« Reply #19 on: 01 July, 2014, 07:55:38 pm »
My GP practice is now on the case.  The one who had been helping me is on holiday but thankfully I dealt this morning with another good one, not the useless senior GP.  This guy was shocked to discover that the only information the practice has is the ambulance letter sent by A&E to tell the practice I had been taken to Kings.

  Sadly, PALS have been rather disappointing.
I saw the best minds of my generation destroyed by madness, starving hysterical naked: Allen Ginsberg
The best minds of my generation are thinking about how to make people click ads: Jeff Hammerbacher

hellymedic

  • Just do it!
Re: Kings College Hospital - mixed experience
« Reply #20 on: 02 July, 2014, 12:59:14 am »
Good to hear there's some progress! A good GP is your friend...