We are being reassessed for CHC really worried because from my understanding we could loose it? Because George is not going to die soon, I don't know how I will cope without it, I explained that this illness is unpredictable and compulsive behaviour really feel stressed out, just sitting here crying, he is not going to get better what don't these people understand about PSP , social worker has been so good, I would not cope without CHC . Feeling stressed Yvonne xxxxx
CHC : We are being reassessed for CHC really... - PSP Association
CHC
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Yvonneandgeorge
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Yvonne,what exactly is CHC?
Always something to get at us, unfortunately CHC review is standard a way professionals can check the patient is still poorly. Usually review is after 6 months of initial provision then annually. If George has not improved it is unlikely you will lose the funding but if they do you are entitled to appeal.
Check out Kevin1's posts.
Start keeping a diary of falls, constiptation, feeding issues, etc. Just in case the assessor often a DN and social worker have questions always give worst days, it may help if you or George has an issue while they are there. M had spectacular choke at our 6 month review, even DN was upset.
As Corporal Jones used to say in Dad's Army and Hiitchhikers Guide to the Galaxy says "Don't Panic". Best wishes and good luck Tim
It is when you are funded from NHS national health service xxxx
Yvonne my darling try not to stress as it is extremely unlikely that you'll lose chc!! I had this worry a few weeks ago, and I needn't have got myself in such a state, if they do a re assessment explain everything as in worse case scenario (I know it's bad already) but you know what I mean, I said in our reassessment that mum n I were knackered n now we get 2 X 4 hour a week respite so what I'm saying is, pile it on n on n on and say you would like some respite care twice a week, chc cannot be removed from a Progessive life limiting illness that will only get worse!! Big hugs and have a glass of 🍷 X
Satt wished I liked wine !!!!!
Ok Yvonne how about a vodka, or Bacardi, or a Jack Daniels n Coke lol x
No don't really like any booze wished I did though xxxxx
I am on a diet, but Satt I feel like I could just pig out on chocolates, but will I regret it tomorrow? George goes to be at 7.45 so will have a bath when he has gone to bed and sit down a watch the bake off, hopefully he won't blow his whistle, which he usually does most night !!!!!!! Xxxxx
Bless you! Ok a bath with candles = zero calories and watch bake off, do all this whilst ensuring the whistle is hidden (joking bout the whistle) !! X
Hi Yvonne
Yes, it is possible to loose it, but that is unlikely on the grounds that George has worsenned and you already have it.
It is not about being near to death - that is a Fast Track criteria.
Remember the benchmarks have not changed. So the level of illness and need is the same as when you first got it.
Remember also that if a symptom or need is lessened with medication or care that is coming in they score as if the medication or care were not given or the care not in place.
There are things you can do to increase the certainty of getting the funding.
Gather up any Consultants, or other specialist letters and hand them copies when they come to assess.
Make a list of all of his symptoms and needs and risks. Yes, that is three separate items.
Here's a couple of examples.
1 'X' has no sense of balance and needs assistance to walk his maximum of 15 feet. He is at risk of falling uncontrollably and injuring himself as without a sense of balance he does not protect himself when falling because he is unaware of the fall.
2 'X' has marked muscle weakness and so is unable to manage the toilet unassisted because he cannot self support or clean himself.
Get every, and every again, item and hand them a copy.
Write out your needs too. Include any physical, emotional and other limitations to the care you are abler to give. Include also your need to go to the shops and that he cannot be left unattended (if that is the case) and your need to have 'down' time. CHC has to support the carers too.
Do not mention money at all. Verboten - They are not allowed to even mention it themselves - This is about health needs.
If you have the energy download and print out the decision support tool they will be using. It explains how to score
gov.uk/government/publicati...
You are interested in the part starting at the bottom of page 23 "1. Behaviour" Just work through the list starting there and ending on P. 46. You can give them a copy, but as they interview and work through the same scoring you can discuss the score with them and hopefully come to an agreement. If you disagree with them make a note of what and why. This is useful for an appeal if you need to do that. It sounds a lot, but do it in short sessions if you like and remember: As you go along the form tells you what the score should be for each part - It gives examples and it is not rocket science.
I do hope this helps.
Do come back to me if you need more info or clarification.
Warmly
Kevin
xx
Kevin it is mind blowing George has got no better he has got worse, he can't do anything for him self, some day he needs help with feeding, so tired of this X thank you Kevin xxx
Y'know I was having a meltdown yesterday on this. Our situation is more complex. We are having a review (computer generated trigger) and technically we are not on normal CHC. I really did not want the CCG to notice that. Our CCG nurse just takes it all in her stride bless her.
So, yes it is more stress we both don't need.
From what you are saying you will be fine. Make the first list up at least and give it to them. It will go on file and help, but more than before I am sure you will be fine.
Any issues I will help as best I can, should you want.
NannaB's post is so spot on.
Kevin
xx
So any update Kevin on your situation? X
Hi Satt :
Seriously?
Here it is:
We are on fast track, but I have managed all of the care, changing agencies (again) as if we were on a Personal Budget. I am upfront and well behaved, so I keep them informed.
We are going before a Personal Budget panel in the next week for a large increase in funds that I will manage as per P.B. (We are on a small fund at the moment).
Whether we get that is another question. We need it so much. I can't leave the house now except to the garden - been like that for months now.
You cannot have a P.B. on Fast Track - different funding streams.
Meanwhile the review of Fast Track (by a contractor) generated a CHC assessment because they recommended we go onto normal CHC on their last FT review.
I cancelled this assessment because they didn't know why they were doing it and two days notice was no good to us.
Today I have been informed, in reassuring language, by the CCG that this is actually only a CHC normal funding review.
But as above we are not on that.
Eventually the contractor will set up another.
Because I cancelled the review with the contractor all the balls are yet again drifting around in the bureaucratic stratosphere.
I sleep at night by carefully maintaining a state of denial.
But I'll say again the CCG nurse is so damned caring and supportive. She looks after us and told me that if we ever felt stressed she would come over for a cup of tea and a supportive chat. I am very strait with her.
Hugs
A rather confused (and totally stressed)
Kevin
xxx
Omg Kevin! I'm so so sorry your having to go through all this unnecessary and stressful nonsense that you seriously do not need!! I can't understand why everyone and by that I mean everyone has to make everything so bloody hard! I'm sending you the biggest hug, if I was nearby I'd come and look after Liz a couple of times every week so you could actually get out! Keep me posted x ❤️
Kevin so sorry you are feeling like this, me too sending you a big hug, and if I lived closer I would sit with Liz to give you a break, and get my daughter to sit with George, it's not fair all the ****** we have to take xxxxx
Hi Yvonne
Thanks for the hug. Y'know it does make a difference. So I am sending one back to you with added stress buster. 
Such a lovely offer too, As we will get there eventually.
It's this added stress of uncertainty which neither you nor I need.
So hugs back and good luck with your review - Sounds like you are on very safe ground.
Warmly
Kevin
xxx
Oh Satt
What a lovely offer.
I forgot to say we do get out a little - When I am taking Liz to appointments - but that's just hard work really. I try to work a treat in for her like going to a Cafe which is nice.
We will get there eventually... I'm not sure what to do if I get a get out of jail key... perhaps take myself on country walks.
Well, I think there are others here who have a tougher time. You certainly get your share.
Thanks again
And hugs back
Warmly
Kevin
xxx
Your most welcome Kevin, you've helped me above and beyond and you know I cannot thank you enough! Keep going my lovely you WILL get there I'm sure of that because you are a fighter!! Trust me you'll find something to do.....a country walk with a lil stop off for a 🍺 Or 🍻 would be most welcome I'm sure....x
I really feel for you. I find that now I am on " pretty stressed " permanently, any extra, even a phone call about arranging car insurance [ latest test ] and I am in the stratosphere, heart beating , head ringing.
And angry on your behalf because it isn't necessary. Think of what is spent on all these assessments !! Its crazy !!!!!!!
Hug from Jean x
Thanks Jean. Really appreciated.
And thanks about what you say about car insurance and phone calls. I used to be so capable and confident and know things like that seem like mountains to climb. When I get of the phone I am full of self doubt that I handled it well.
I know from training that some of this is to do with increased social isolation and some to do with stress and the drip drip of continual loss. Its still a hard place to be eh?
Hugs to you too thanks for being there.
Kevin
xxx
Kevin I feel the same , kids say oh come on mum you can do it, I am permanetly stressed , Kevin it is horrible thing to feel, loss of confidence so hard to deal with, sending you also Kevin a big hug Yvonne xxxxx
I hope your reassessment was like the one we had a couple of months ago, our 3rd. It was done by the case worker we saw at the beginning of the process and for all reassessments. She came in and accepted a cup of tea. She went through the form and said things like, does he still do this, I can see this has deteriorated, he can't do this any more etc. It was very friendly. C has received CHC since October 2013 and nearing death has never been mentioned.
Try to relax Yvonne. Getting stressed won't change a thing, easy to say I know. If the decision is reversed (highly unlikely) you will need all your emotional energy to fight it. I hope you get a good night's sleep and feel happier about it tomorrow.
Sending you a big hug.
X
Thank you NannaB feel totally drained George has got much worse that when they did first assessment, sometimes you can hardly now what he is saying, I am so tired without all this xxxxx
Colin doesn't speak at all now and it is so hard not knowing how he feels. It must be awful for him. I had an itchy foot the other day and it was driving me bonkers. I thought of C. He must have lots of niggly things that he can't do a thing about; an itch, pins and needles, cramp, tummy niggles all the little aggravations we get and he gets but can't do anything about. It's so cruel and I feel helpless when he is in obvious discomfort. I just hope the paracetamol I give him at these times does something to help.
X
Oh NannaB I just hate this PSP it is so ruthless, hitting you in different ways, George gets so agitated, then he starts calling me, I go over to him, then I can't understand what he wants, he gets agitated because I can't understand him straight away, he tries to pull my clothes and I have to step back and wait, it is so hard. Yvonne xxxxx
I'm with you, Yvonne. Chris is increasingly difficult to understand, especially when he's tired or distressed. He is also so unco-operative it drives me mad. So I am "on alert " all the time.
I could just sit and cry. Just imagine the Lake of Tears we would all produce !!!
Good Luck !!!
love and a big hug, Jean xx
Feels like my lake has dried up, woke up this morning feeling really dizzy, lucky George is so tired does not want to get up, just sitting having a tea, what do I do if I am ill, know I am crying, just can't believe what this PSP does to us all xxxxx
Do you have anyone to call and sit for a while ?
Its desperate, isn't it ?
Paracetemol and a cup of tea , I know.
Big hug. from Jean xx
Thank you jean feeling ok now, but George has been a nightmare today xxxx
Dear Yvonne, mum has just been reassessed this week for chc. It was explained to us that basically even if she gets withdrawn the care will still stay in place, it just won't be funded by the NHS but probably by social services. They only turn to the patient for self funding if they have over £23,000 in savings and even if this was the case once the savings drop below that they would start funding. So unless George is sitting on a gold mine just think of this as a paper exercise and try not to worry. That's out motto.
Love and best wishes Michele xxx
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