PSP Association
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CHC review update

Well, just as I anticipated - the CHC review nurse has indicated that our funding may well be withdrawn.

P `scored` lower on one category of the DST (behaviour) but higher on 3 others. She said more or less that because the nursing home are doing their job well, his needs are less !

To have to fight yet again for funding - I just feel so depressed.

xx

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NanBabs wish I could give you a great big hug. It is so stupid it's not worthy of discussion?

The real truth is they are trying to save money? So take a few deep breaths and get angry!! Then calm down enough to appeal. It's unfair that you have to do this and bloody cruel too. But do it you must. We will all be behind you and cheering you on.

Maybe you need to talk to the Nursing Home first to see what exactly the situation is with your husband? If he is terminally ill and it's progressive he is entitled to CHC remember that! Don't let the b******s get you down!

Lots of love and hugs to you.

Marie x

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Thanks so much for your support Marie. I feel sick to my stomach at the moment but I will certainly appeal, kick, shout - whatever !

The nurses were great, told the truth - that P is very high dependency etc.

xx

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I'm shocked how they think they can withdraw CHC when it is a progressive illness, there's simply no logic. Marie is right, you must stand your ground and not let them do this to you both. They simply can't fathom how much stress you are under already, it's just not needed. It's simply cruel. Lost for words xx

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I was shocked, but not surprised as I know they threatened to withdraw funding for someone with a brain tumour (who has since died).

xx

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NanBabs, try not to get too stressed out yet, it may not happen. The reviews have to happen. I know someone getting CHC (not PSP) who is definitely improving and hopes to be independent soon. Everyone with CHC gets reviews, however dependant they are on others. P still needs continuing care so let's hope common sense prevails. As Marie suggested, talk to those caring for him and see if they know what was put on the form and if it is withdrawn, then appeal. Hopefully it won't be.

X

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I always try to be optimistic, but some days (like today) it is harder !

Thank you for the support.

xx

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❤️XxxX

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Bloody hell that makes me sick!!!! Fight all the way!! I'm so sorry you just don't need this added unnecessary shit!! X

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I couldn`t have put it better !

I will fight of course.

This is the only place where I know you all have experience and knowledge of PSP, so it felt like the only place to vent !!

Thanks.

xx

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NanBabs, my advice is this, get the hospice, gp, dn, local mp involved! Take zero nonsense from anyone!! Give it everything you've got!! Scream, shout, cry, and scream again!! Don't let em win! This is one battle you HAVE to win!! Thinking of you and sending huge hugs! X

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Yes I agree with what has been said, it is disgraceful taking it away, he is not going to get better, I wish they could come and stay with us for a week!!!!!! Bloody joke xxxxx

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Thanks Yvonne.

The irony is that P is in the nursing home because there are not enough home carers available in this area and if I were to bring him home (and thus get CHC funding ) I still would not have the carers to keep him safe and well at home !

Ever feel you just can`t win ?

xx

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So who pays for the nursing home ?

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CHC now, me in the future I suppose , or the Local council.

xx

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Thank you Satt, wish I could give you a big hug - you`ve made me smile.

xx

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Surely they can't say that because the Nursing Home [ or carer ] is doing their job, they don't need to pay ?

I'm increasingly thinking that , if you manage, they know they can back off. We are being taken advantage of because they know we won't let our loved ones suffer.

Makes me sick.

Lets hope it isn't so - - -

love, Jean x

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Thanks Jean.

I know, it doesn`t make sense does it ? I got the impression that she had made her decision even before I got to the meeting.

Of course I argued my case on each of the 12 disciplines of the DST but in 3 cases she was the one who decided that the rating should be increased; she just emphasised that because P`s behaviour has calmed down therefore his need has decreased (he is passive mostly now) this means he no longer qualifies for funding !

xx

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It all just enrages me. !!!!

xx

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I've was warned when we were awarded CHC that as my husbands illness progressed and his needs met it would be less likely he would meet the criteria and it would then be withdrawn. Absolutely stark raving bonkers , who gets paid for thinking this up .

Stress stress stress, anything to give one a bit more stress stress and stress. If it happens, keep appealing. Hopefully all will be ok.

Love GW

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Thanks GW,

Stark, raving bonkers is right.

xx

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Things change all the time, because he is passive now, doesn't mean it won't all Change tomorrow? This illness is unpredictable, surely the read up about it. Also sending you a big hug. Yvonne xxxx

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When I pointed this out, she just said, `well you can re-apply in 6 months time if things change again `.

Thanks, a big hug is needed !

xx

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Joining hands with you all! BIIIIIIG HUUUUG !!!!

Jen xxxxxxxxxxxxxxxxxxxxx

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Yes big hugs it's bonkers ,you should be getting more help not less x x

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I think the short answer is PSP is progressive so needs are going to get more rather than less.

So sorry youve had this added burden placed on your shoulders nanbabs. Good luck and bring out the boxing gloves again.Marie

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Hi NanB

Sorry to hear your news. Well actually I am damned angry that CHC's do this to us folk.

CHC scoring is supposed to be 'as if' no care going in.

So saying that, for example, the home is doing it job well and he scores lower' is nonsense!

On that basis there would be no care at all. Because they would come in and say, "Wow, the home care agency is doing a great job and so we no longer need to pay for them"!

This effectively what they have said re. the home.

Time for a telephone conversation with Beacon NHS advocacy?

You cannot loose by it and they are excellent.

Do private message me if you want.

Warm wishes to you both

Kevin

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Thanks Kevin.

I spoke to Beacon last year when we were chasing the appeal and they were helpful. I won`t give up but I just feel drained at the moment - feel I have no fight left.

I will message you -if you don`t mind.

xx

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Hi NanB

I know the 'drained' feeling. All to often I feel like that. Usually when Liz is 'working her ticket' to use an old phrase.

Yes, do PM me when you want.

XX

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A bloody disgrace that the powers that be are allowed to operate in such a callous manor, especially when it is a progressive disease. The stress that it causes is counterproductive when it is supposed to be helping people in these dire situations. I do so hope that you don't have another fight on your hands NanBabs, Ben has just been awarded CHC funding but has never shown aggression just apathy. He was always a busy man, always on the go, travelling the world with his job, apathy was not him, the total opposite. Fingers crossed that you get the continued funding without the fight.

Love and big hugs

Kate xxx

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Thanks Kate.

P was similar to Ben, always busy with work, sport etc. He is a shell of himself now, he was always the noisiest, loudest - could talk for England - now he is mostly silent and passive.

I know he deserves CHC otherwise I wouldn`t be so upset. He asked for nothing and worked hard all his life and now he is being dismissed by our `caring` NHS as needing no funding.

I have my fingers (and everything else ) crossed but I doubt that the panel will look much further than the assessor`s recommendation.

xx

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