Tuesday, 27 November 2012

NHS frustrations!


Andrew Pickles
The other night I had an anxiety dream. I had to drive someone (I think I know who it was) to the airport, and we had half an hour. The signposts were misleading and we finished up on the wrong road. We could see the airport so doubled back and tried again, reading the signs carefully. Same result tried again, wrong road, took the alternative road and finished up getting lost, tried a totally different route, which passed the airport but not into it…and time was ticking away….
Adam is still trapped in limbo land at the hospital, rehabilitation cant take him because he has a tracheotomy, the hospital ward is not geared up to provide full rehab, proposals for alternative centres are going through committees and panels and nothing happens. We have family meetings, nothing happens, we have an
other meeting, but staff have been moved round and nothing happens, we have another meeting and only one person turns up that we have not met before. We have only spoken to his consultant once for 10 minutes. He has a new registrar and we have never spoken to her…..and time is ticking away.
The complaints department, contacted over three weeks ago has sent a letter and a form for Adam to sign, nothing else.
One shining light is Adam’s occupational therapist who is doing her very best to provide as much support as she can, but it is still short of what he needs.
So we have escalated to senior level and director level in the NHS trust in the hope that someone with the ability to change the situation will listen to us.
Like ·  ·  · Yesterday at 08:59
  • Martin Gerard Walsh Sounds bloody awful - never easy fighting institutional inertia at the best of times! Keep pushing and don't take any prisoners - this is a dip before the situation starts to improve! It's no accident that Ad has balls of steel and the heart of a lion - stay strong, keep fighting and take care of yourselves xx!
    Yesterday at 09:09 via mobile · Like · 2
  • Sarah Norwell Hear hear Martin! It must be do incredibly frustrating for you both. But, as always, you are looking towards the positives and that is inspirational. There are people all over the world thinking about you, Adele, and of course Adam. Keep fighting, you will get there xx
    Yesterday at 09:22 via mobile · Like · 4
  • Neil Clappison Bloody hell Andrew, let's use this group again, give us their name & email and we'll all write. Stay strong, I wish I were there to help you at the moment.
    Yesterday at 09:36 via mobile · Like · 8
  • Tracey Gudonis-Page Yes as Neil says, maybe we need to use a bit of people power again and get everyone writing in to the relevant people? Thinking of you all x
    22 hours ago via mobile · Like · 1
  • Maria Leisha Give us the details... W made a difference before. We can do it again! <3
    21 hours ago · Like · 1
  • Judith Mitchell I would love to bombard them with emails and fire to burn their red tape and bottoms!! Please do let us have names and addresses. Disgusting and archaic. Thinking of you. There are many voices in the wings to make a very load noise. x
  • Alison Butterworth Agreed with Judith above!
  • Barbara Hunt my thoughts and prayers are with you all , and in the hope that everything gets sorted out by the powers that be very quickly ! stay strong you are doing a fabulous job for adam and you have so many people who love adam willing you on xxx
  • Thomas Rawlings All the best luck and wishes with the continuing struggle x
  • Caroline Delhommeau As you can see we are all behind you! Positive energies to Leeds. Yours and Adeles determination and love for Adam will get you over yet another frustrating hurdle. Let us know wheat we can do and who we should contact to offer our disgust at the situation x
  • Chandy Chima let's do it
  • Jonathan Ogden We're all here and happy to help.
  • Danielle Nicholls How awful - what happened to patient care being at the heart of the NHS? Evidently some bureaucrat forgot to pass that memo to the other bureaucrats whose job is to talk down at the nurses, give hell to the cleaners and make coffee for the consultants! Good luck Andrew it is never easy dealing with people who only hear what they want to. X
  • Megan East How frustrating, and totally mind boggling, what about alternative medicine, didn't you mention the peole that can help bring him out of the coma, surely he has been in a coma long enough now that they can help, I remember you talking about this group a few months back or whilst you were in Thailand.
  • Cafrin Hart Le What a frustrating situation. As Neil says, let's use this group and harness the people power. Please do let us know if there is anything we can do. Love tou you all, as ever. xx
    7 hours ago · Like · 1
  • Andrew Pickles Thanks for all the support. I wanted everyone to know the situation before asking for your help. One of the letters has been sent to an official at LGI who has been highly recommended to us from a few sources. I would like to give a few days for a response before applying any further pressure.
  • Andrew Pickles Hi Megan East. We are also chasing this. We have requested the use of this medication, but at the moment, this too has vanished into a black hole.
  • Bob Charlton So frustrating
Posted by at No comments:

Friday, 23 November 2012

Update 3 from Andrew (18/11/12)


Andrew Pickles
I suspect many people on this site share the confusion expressed by Mark. The image of coma we have of someone being totally unconscious and unaware is not the whole picture. There are many degrees and levels. The closest to the common image is the vegetative state, where as far as you can tell there is no consciousness. Above this there are lots of levels, starting at minimally conscious, through partial conscious to conscious. At all of these stage patients can understand or communicate to a greater or lesser degree. The patient opening their eyes can be a significant step, but this is not always the case. Patients can have eyes open but not consciously be “seeing” anything.
With all the things that have been happening, I forgot tell everyone that Adam is not in a vegetative state. We have believed this for a long time, but it has been confirmed by the therapists. He is now conscious to some degree, but still in a coma, with his eyes closed. He
 is starting to communicate. The therapists believe they are getting close to getting a Yes/No signal from him. He is responding to commands such as move your hand, point your finger etc. This is very difficult process because he has been moving his left arm for quite a while and working out what is reflex and what is under conscious control takes a long time, it is easy to be mislead.
He responds to external stimulus, showing discomfort, responds to pain, smell etc and his face is very expressive. You can tell when he is content, happy, not happy and distressed.
He has had very little movement for six months in his right side (arm and leg). This is why getting a command response from his right hand was so significant. There has also been little head and neck movement,
We know he hears and recognises voices. We also know that if more than one person is talking at the same time in his room he gets distressed. Too much input is difficult for him at the moment, but this is a good sign because it shows he is listening and trying to understand. The interesting thing is that the music Adam loves so much (heavy rock) at the moment causes distress and through much experimentation we have found that Mozart helps him to relax (I know, unbelievable isn’t it).
Other sounds distress him. One time I walked into his room and one of the machines was sounding an alarm. This is a particularly annoying sound and Adam was clearly distressed. He was rubbing his ear and forehead which was red raw and scratched (this is partly because he wears a glove when no one is with him so he cant pull at tubes). This is one of the issues we have taken up with LGI.
I hope this helps, sorry it is so long.
Unlike ·  ·  · 18 November at 10:04
  • You, Katie Jones, Cafrin Hart Le, Tom Haygarth and 52 others like this.
  • Martin Gerard Walsh Good to have a clear picture upon which to focus the positive energies and even better to know that slowly but surely he's working his way back :)! Thanks for the update Andrew - take care of yourselves and keep on keeping on :)!
  • Melanie Brown Thank you for updating us Andrew. I have been thinking of you and Adele a lot lately. Hearing how Adam is doing is very heartening. I'm hoping all the positive thoughts from everyone here is helping.
  • Tracey Gudonis-Page Wow, no apology necessary Andrew! This makes for excellent reading! I recently learned that a friend of a friend of mine was attacked and hit over the head in Plymouth a few years ago. He was left in a natural coma for 4-5 months and after a period of rehabilitation (i am not sure how long, but will try to find out more) he is now able bodied, has his speech back and is able to go out socially with friends and look for work again. I have every faith in Adam and look forward to hearing of more and more positive events in his route to full recovery! I will hopefully make it up to see him before Christmas. Thank you for this update x
  • Maria Leisha Its always good to hear news Andrew.. thank you! I can remember saying to Rick that I thought we should be playing him something more relaxing and classical, when he was in Bangkok. There is a lot of research about the effects of music on the brain. Also about the effects of sound and music on babies who are still in the womb. Its surprising what a huge effect it can have. Rock music is distressing for babies, so I can understand why it would be distressing for Adam in the delicate state that he is in. Sending you all love as always xxx
  • Joseph Moore Can't believe he is getting into Mozart! I will have to give him a private marathon piano recital at some point ;) Very pleased to hear that things are moving in the right direction xxx
  • Joseph Moore Actually I attended a conference in Bangkok called 'The Mozart Effect' and they talked about how great Mozart is for improving overall academic intelligence and there is a lot of proof out there that shows music can heal people greatly! Maybe Adam would benefit from some music therapy sessions? Just an idea?
  • Denise Rigby Thank you for all that info. I look for bulletins daily. I worked with Adam at Cathedral and WILL him back each and every day.
  • Mark Taylor That's cleared up my confusion! When someone says 'coma' all I see is someone laid in bed, eyes closed and unresponsive, but this obviously isn't the case!
  • David G Mccabe Thanks for all the information Andrew. Great to hear about the right side responses as well as everything else.
  • Caroline Delhommeau Thanks for this as you know we all pray for Adam and now l know how to channel my energies. Each and every day he is getting stronger. Love to all xx
  • Jan Ashton Thanks for this post Andrew, it's helped clear up some mis assumptions I had about coma. The music therapy idea sounds like a very good one... I'll do some on-line searches and e-mail them to Adele. Jan x
  • Bob Charlton Thanks Andrew
  • James Harris Thanks for the update Andrew Pickles
  • Paula Cat Wow! Thank you and, as always, you are all in our thoughts. Xx
Posted by at No comments:
Subscribe to: Posts (Atom)