Anyone on site know when one might expect a decided care package to commence. Assessed for CHC on Nov 8 , granted on Nov 25, care needs discussed Dec 28 and not a word since. I had a meltdown last week and I'm heading fast for another. What's the hold up ?????? It will be the 3 month review soon. Xx
CHC and care package: Anyone on site know... - PSP Association
CHC and care package
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gypsywoman1947
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22 Replies
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Make sure CHC is there when you have the meltdown.....No sense ordering flowers if you're not gonna send it to anyone! Send it girl.....
I'd call chc directly and find out what the hell their playing at! Unacceptable!! X
Yes call them and find out, our care package was put in place straight away, you need the help now, you are going to be ill yourself if they don't get a move on!!!!! Xxxxxx
Get in touch with CHC manager tomorrow. I heard my hubby had been awarded it on a Friday and the following Wednesday our first night carer arrived.
X
Phone them up and create merry hell it's the only way to get things moving .
Hi
unacceptable wait, they should have allocated a named nurse speak to her asap. Do you already have some care in? If so can they not extend their service, must admit we waited over a month but was then backdated.
They are a very powerful organisation and should be more aware of the stresses this puts on us. Quick thought have you got a social worker who can give them a poke?
Julie x
We had a nightmare getting CHC agreed and it took months and months, but when we had the final meeting I broke down in tears - I was at my wits end. They rang through got the package agreed and my husband booked into respite there and then.
It is awful but I agree until you are at breaking point they don't seem to want to help.
Ours was granted early December and back dated to November 16th. G started day care yesterday. The first funding from CHC. This only happened because I contacted the centre, then CHC then back and fro chasing since 6th Jan. You have to do the leg work I'm afraid. Just another example of how money is wasted in the NHS. The centre wouldn't give availability without the contract and CHC wouldn't send the contract without the 2 set days. Yes it was me who persuaded the home to give any 2 days with the promise that I would be flexible once the contract was in place. Further delays over transport so I take him myself.
Thank you all for your replies, I get the picture.....it's another battle to fight. I had no idea!! Social worker has now taken us off social services books as we are CHC funded If we lose the CHC we go through all the motions from stage 1 again. I will call them this morning while I am ratty with no sleep and can barely be civil. XxxGW
Once chc is awarded and with a progressive illness as is Psp it should NEVER be reversed!! X
Amanda
It is reversed though! Just been told by a nurse today that one of her patients has had it taken away! As she said he is not going to get better and is exactly the same as he was when he got it! It's a total disgrace. She also said I was the 5th person to ask her for help with this issue. She said she doesn't know what is going on and wondered if they are trying to save money.
An hour later the Community Matron rang to say my husband had been granted CHC! However we have waited since September!! To round it all off she said the panel would not agree to him going to the Nursing Home we had chosen. It's near to me but she said the Nursing Home won't sign some form so CHC don't deal with them! If we insist that's where we want him to go his case will have to go to the panel again. Has anyone ever heard of this before? I really feel I am going to have a breakdown.
I am now in a blind panic as that is the only care home near to me with decent standards...or it appears to have decent standards. Does anyone know what this form could be? I was so upset I couldn't ask anything else. Feel like I am going to crack up totally to be honest.
I don't drive so need to have him near. The list of Nursing Homes which are acceptable means 2 bus rides there and 2 back! I just can't do this anymore.
Marie x
Aww Marie!! I'm very very very surprised to hear of chc being reversed and would be kicking up the biggest stink they ever saw!!
Re the nursing home, fight for it darling, fight!! They should NOT be making this so bloody difficult for you!!
Where abouts in the uk are you?? X
Amanda, just up the road from you in Cheshire! It has taken ages to get it and now we are being told we can't have the Nursing Home we want? Suppose that's money too? Typically the manager of the Care Home is off today. Not sure if it's one day or maybe until next week? So the nurse is dealing with it and she will do as she's told? Not sure who to talk to about this to be honest. Nobody from CHC has ever spoken to me apart from a brief telephone call to say they had his phone....in December! He was assessed in September. So if they are to be believed it would seem the nurse who is meant to sort this out now probably had the Assessment forms all that time? I really just feel like giving up!
What I can't understand is the Care Home he is in is a Barchester Home. The Nursing Home is also Barchester! So surely they have the same rules wherever they are?
Marie x
Lol marie we are in Surrey!! I'd google the chc peeps for your area and find the name of the highest person and ring them and go mental! Only way forward in my book!! X
Yes we were told by assessor someone with psp on her books has had changed funding removed because they are now bedridden and tube fed and so falls is not an issue nor choking and some risks are therefore removed. What a nightmare. Xx
pspa-helplinePartnerPSPA
It is difficult to give you a timescale on something like this as every area in the country is different. If you've called them to chase it up and you are getting nowhere please give the helpline a call on 0300 0110 122 and we can see if we can gather any more information for you.
Thank you for offer of help, I called CHC and it's almost sorted and hopefully will commence later next week. Gw
Hi, when we were awarded CHC funding, they immediately took over paying for what was already set up. The care package was discussed a few days later and I got regular sits and help in the morning to get Steve out of bed. The problem came, when I needed to up the care package, they agreed straight away, but there was no help available. It took six months to finally get a single person to come and help put him to bed. Another four months, to finally get a double up, the night he died! Push straight away for respite weeks. It does help.
Lots of love
Heady
We did the last CHC through the d nursing sister , I had just moved care companies and I rang the DN and the care company and Noone seemed to have heared anything . It took a month at least for all the different people to get to sing from the same hymn book ,
For something so important there was no one to coordinate it ..
Our coordinator is the D N sister , have had two three minty reassessment .. I think they just like to keep you fretting .. I've not had any feedback from any of those meetings ,
Once you do start though it will be much better . Get new OTs ..ask for an new assessment from their Ot , I did and they measured John for a new chair and dommode support pillows etc ..
Keep asking for anything you need , they don't knock the door and ask u .
Took me. Along time to recognise that ..
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