CHC: Morning on this very rainy day! Just... - PSP Association

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CHC

Julieandrog profile image
15 Replies

Morning on this very rainy day!

Just received the letter from CHC following yearly review , we got it! Can breathe for another year , maybe I will sleep better tonight😂

Julie

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Julieandrog profile image
Julieandrog
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15 Replies
Satt2015 profile image
Satt2015

Well done Julie! It’s such a worry! We are awaiting Dads yearly review, I hate how much pressure this puts on us all!! Any tips to keep it continuing gratefully received! X

Julieandrog profile image
Julieandrog in reply to Satt2015

The CHC have a feeding frenzy for evidence, so i contacted every professional involved from cons to care company told them what written evidence i wanted from them and then with each domain i was able to provide the evidence. I had to argue the level a couple of times but just referred them back to the letters from the relevant professional.

Might be an idea to contact DN's to update MUST assessment and Waterlow scoring.

Best of luck

Julie

Satt2015 profile image
Satt2015 in reply to Julieandrog

Bless you, thanks Julie x

NanBabs profile image
NanBabs in reply to Julieandrog

Thank you for the tips.

I am still getting together my appeal notes ready for the meeting in 3 weeks time. I am still having problems though, with trying to prove `intensity, complexity and unpredictability` ! No-one can define the difference between what is social care and health needs. They are saying that although P needs 24/7 care, his needs can be met through FNC (Funded nursing care which is about £155 per week).

I am pleased that your CCG seem to have more common sense than ours.

xx

VronB profile image
VronB in reply to Satt2015

Good luck Amanda. I always found Melanie a great help. Xx

Trillo profile image
Trillo in reply to Satt2015

Ah that is worrying Amanda. Hope you'e well. I was disappointed I didn get to meet, just not enough time. Say hi to you'e mum.x

Satt2015 profile image
Satt2015 in reply to Trillo

Bless you Mary! No problem, another time! Hoping everything as ok as it can be for you all! Hugs x

NannaB profile image
NannaB

So pleased, what a relief.

🍷 XxxX

doglington profile image
doglington

What a relief. One less thing to worry about !

love, Jean x

Yvonneandgeorge profile image
Yvonneandgeorge

So happy for you both, another worry out the way xxxxx

Zeberdee profile image
Zeberdee

Brilliant news .... well done you. Only what all PSP sufferers deserve. Very happy for you. Jxx

Marie_14 profile image
Marie_14

Julie that is great news. It is all such a worry. People should be given it until end of life. Or would that be too sensible?Given the fact patients are not going to get better I really don't understand why carers have to go through hell each time.

Marie x

Robbo1 profile image
Robbo1

B is having another assessment for CHC on Friday. They haven’t said it’s for the appeal, but for the complaint that my son put in to them. I think that this is a way of not paying back payments if B. gets it this time. At present he is in a Home, unable to do anything for himself and mainly sleeping when I am with him. Despite peg feeds, the skin is hanging off him. It is so difficult to understand what he is trying to say, he can barely see and needs two carers to transfer him. Despite all this, it wouldn’t surprise me if they turned him down for CHC. I was told that if he gets it and comes home, he would only get four visits a day for peg feeds and medication. He dearly wants to come home and I want him here, but with only four calls a day, I would find it hard to find (and pay!) carers for the other 22 or so hours. It’s so sad.

Katiebow profile image
Katiebow

It's a pants system and just should never be challenged once you have received it. How can they possibly think that things get better of easier as the disease progresses, just a way of getting out if paying for essential care. What if you can't afford it! Listened to a radio interview on assessor who decide if funding should be in place. One guy, who was training to be an assessor was so appauled by the little tips they were given to trick people out of their rightful funding withdrew from the training in disgust. Enough said!

Lov kate xxx

Jafarrar profile image
Jafarrar

That is great news 😴😴😴👍❤️

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