Hi all
At the moment I'm hitting a brick wall . Archie is now 8 weeks in hospital and still no care being picked up . We have had chc for 2 weeks previously had asc and again nobody ,he's getting very unsettled and he's looking at me for answers which normally I do sort out but this I'm not sure which way to go
The sister on ward is reporting it to matron and powers above her.
Has anybody had this experience or any advice which way to go would be appreciated
Sue x
Aww dear Sue! Poor Archie and poor you! I'd contact the chc and ask to speak to a manager and tell them it's a formal complaint!! In the meantime I'm sure dear Kevin will give you some great ideas and advice....this is a terrible situation for you both and I'm very sorry x
Hi Amanda
Thanks for that and yes I'll get hold of them.
It's a living nightmare all his obs go up and down they do all checks for infection etc but I honestly believe that's it's because he's stuck in there
Sue x
Yeah I have no doubt about that either Sue! My mum came out of hospital with a chest infection and I caught a stinking cold which I'm sure was from going there so much and then ended up with a chest infection myself! Germ ridden places really! X
I agree with Amanda, starting complaining to as high up a person as you can reach. Threaten to get the press involved, I'm sure one of the tabloids would love a story like this, in our political climate.
Lots of love
Anne
Hi Anne
When I get home I'm going try look at things and see who to ring and I have a friend who know a reporter so that's another option
Sue x
Sue contact your friend! This is a total disgrace. It happened when Garry was in hospital too. The Ward Manager told me he would sort it out with the CHC people as he had more influence! In our case it was CHC not willing to pay for the Nursing Home I had found. Two days before he died we were told he could go there but it was too late! I wish I had contact acted the press early on.
Marie x
Hi Marie
Thanks for that
My friend is calling tomorrow and in the meantime I've spoke to social worker and she's sending an email to the people above chc and also told me to send she a letter of complaint regarding everything I'm not happy with
I won't let him go stay in a n/h because if he goes there he will have no chance then of coming home and he's content to be home .
His package is high and they have to be time critical for meds so I don't know if that's the problem
Sue x
Sue
Glad you have contacted your friend. They are out of order keeping your husband in there for so long! I bet you there are carers out there but they will cost? However if his package is high that shouldn't be a problem?
Looking back Garry's wasn't high enough which is why they gave me a list of Nursing Homes only one of which was alright.
When I rang to see when they would assess him I was told the room I had seen had been promised to someone else over a week before. I don't believe that was true but there was nothing I could do.
They just wear you down until you can't fight anymore or at least not as much as you would normally. Don't let them do that to you and Archie.
Love and hugs to you.
Marie x
Hi Sue
Sorry to hear he has another infection. Is this because of the hospital environment?
I would ask to speak to the Modern Matron. I might be mentioning the infections and the fact that being in the hospital and not being discharged when well is increasing the risks.
However the key thing is that the hospital probably needs the bed. That Matron has pleanty of power to get the CHC mobilised to get 'her' bed back. Sorry to put it in such cynical terms. They are probably very caring, but they have limited resources and its that Matrons job to keep the traffic moving amongst other things.
I do hope this helps.
Kevin
X
Hi Kevin
This time I think yes cause he normally has aspersion
I spoke to the sister on the ward today and she said that she going to get the matron involved and somebody higher than her
So hopefully fingers xed something might get moving
Sue x
When Ben broke his hip he was 13 weeks in hospital, almost half of that waiting for a care package. The matron was trying to get permission from us for him to go into a nursing home, there was a place already arranged for him but I adamantly said NO and was backed by the parkinsons nurse and Speach and Language Therapist, both knew him well and were horrified. The care package came quickly after that but not the free 6 weeks as matron said their was a waiting list for that. Ended up having to pay ourselves but it was worth it. Hope you soon get your situation sorted out, it's horrible being in limbo land and not knowing what's going on behind the scenes. Fingers crossed for you both.
Love Kate xxx
Thanks Kate
Yeah I'd already told them he's not moving till care provided again .we have got the funding but nobody picking up
Sue xx
It's a terrible state of affairs, can't make this work due to lack of carers. I think the government will have to start to subsides care agencies so that the can give a decent wage to the carers and make it a more attractive profession to be in. Good carers are essential to help the hospitals to allow patients to move safely back to their own homes, carers need to be given more status and a decent wage without impacting on folk who self fund. If only pigs could fly!
Love Kate xx
Hi Sue, are you in England and a county that provides CHC care in the home? Did you have a CHC package before? If your loved one I'd retirning home with the same package of care then they should be able to restart it with the agency. If there's any adjustments needed or increases etc then usually a social worker will need to be assigned to assess and implement a new package. If he qualifies for CHC then usually a discharge liaison nurse should be involved with sorting his care out.
My mum had 24/7 chc when we lived in Northamptonshire but I now live in Cardiff and work as a discharge support officer at the hospital. In Wales the most support you can get in the home for chc is 2.5 hours a day!! If any of this does or doesn't make sense let me know and if there's anything I can do to help! I was under the impression generally in England discharge Is much quicker and efficient !
Hi Kelly
Yes in England
We have full funding from chc and also agreed with the care package we had before
One nhalf morning 1 hr dinner tea and bed
Because the care company before won't do meds the s/w is looking elsewhere who deal with chc
The sister on ward is now referring to matron and above
S/w has sent an email to chc and I also have sent a letter of complaint
Sue x
Hi sue,
Glad to hear you have full funding and a package at home, that's half the battle. But sorry to hear it's being a nightmare and taking so long! The s/w is supportive though and helping you? Working in a hospital with discharge it can be quite shocking to see how long some of these things take and how frustrating it is! Can they use a step down / respire care option as an intermediate? So at least he's not in hospital for so long? I know with PSP it can be very hard to find suitable care homes but if it's going to take a while a couple of weeks in a home might be preferable to hospital?
Really feel for you Sue and your loved one. Maybe check if you can get advocacy via PSPA/ age concern /carers charity too to help support you with everything.
Best wishes x
CBD newly diagnosed 
Can anyone relate to these feelings?
Lost in France 
Breathing Difficulties and PSP
