PSP Association
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I am not mad - I've been Kafkared.

Franz Kafka - come home you got it so right.

I telephoned CCG asking for a small extension to the home care service that they are already paying for under CHC.

You need to imagine two or three phone calls and each involving being passed along until I got this...

"No we cannot give you any more care time because Liz does not qualify for CHC."

"But you are already funding the care"

"We might be, but she does not qualify, so I can't extend it... I need to check... the system is down. I will talk to the manager and call you back in a few days."

A few days later...

"No, I think that Liz does not qualify for CHC... but the system is still down... what care do you need?... Yes, I will call the agency and authorise it."

These guy's are so weird!

Don't they know the stress they cause?

When the system does come online she will find that last CHC review is password locked and the password lost... Its true... I was told that last month.

Roll on the next review.

Hey, tomorrow has yet to come, but today is good.

Smiling at our good fortune...

Kevin

xx

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Oh Good Grief, Kevin, and so your saga goes on! Thank God for a sense of humour. When their sysyem "goes up" let's hope it also brings them some common sense. Good Luck!

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Oh my goodness.. And I thought if you actually managed to get chc funding it would all be ok! If we ever get it I may have gone crazy by then anyway . Kafka and Catch 22 rolled into one.

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I suspect its the little white mice in the Hitchhikers Guide to the Galaxy too...

I read so much about the regulations... I want to appeal their decision... but they keep saying we don't qualify and then fund the care... They are not playing fair!

I am learning so much about living in the moment with all of this and PSP.

Chuckles

Kevin

PS Following the Kafka thing - I will probably get life imprisonment!

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Keep smiling 🤗

Tillyhugs

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I know what you mean.

I keep thinking " Beam me up Scottie " Is that too long ago for you ?

My grand children often look at me bewildered !!

Jean xx

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My problem Jean, is they beamed me down in the first place ;)

Know what you mean tho'

Kevin

xx

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Ever feel there is no control anywhere ?

I include the political and world situation !!

Jean xx

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So much now... So much...

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...president twitter face....she says hoping nobody sees that she's an ugly american.....

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hahahahah

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hahahah....My uncle and I used to watch that show together after school.....only thing I get to do before my homework! them were the days , eh?

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Kevin you are very patient! I would be onto my MP to ask them to sort this mess out! It's enough to drive you to drink!

How is Liz? Have been wondering where everyone was. Not entirely sure if it was just me or if everyone has been quiet. Glad to see you back.

Marie x

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Hey Marie, not just you, it has been pretty quiet for several days ! Ljinglesx

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Hi Marie

We've been in 'busy times' on all sides not just PSP.

I've just been too tired in the evening to read threads and to post.

Things are easing up here again... Liz is slipping gently down the slope. Sometimes she seems so distant. It's like losing someone in a fog on a hillside.

How are you doing today?

Kevin

x

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Kevin I am still breathing so that is good? Not really sure what to expect to be honest. Went to buy a black top the other day and was asked by a young assistant " is it for a special occasion"? I said a funeral. She then asked me if it was anyone close! So I said: 'my husband' and promptly burst into tears! Then she was mortified, and an older woman who had been roped into helping was making a fuss of me and I just wanted them both to leave me alone! Not going in there again until they have forgotten me! Apart from that I haven't made a show of myself...yet! Probably will on Monday at the funeral. Dreading it beyond words.

Lots of cards and people who didn't know ringing me today. All very weird and as someone said surreal. You wonder if this is your life or a dream. Maybe both?

Take care of yourself and love to Liz. Tell her I said she has to behave and not send carers home! She is full of mischief isn't she?

Marie x x

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Hi Marie

Reading your other posts about the funeral too:

You'll get through it and if you cry? So what... let others with that.

The clothes shop thing sounds a nightmare.

Yes, life feels like a dream sometimes.

We're thinking of you.

Liz is full of lovely mischief... She told the carer to tell me to come in as I was doing too much in the garden too. Ah, well - seed planting today and its sunny.

Were thinking of you.

Kevin and Liz

xx

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omg that's so laughable.....Bruce got a letter recently (january) stating from our social security that he is available for work now.....so believe me It's not just your part of the world that's whacko.....and besides that, we have president tweeter! beg your pardon to any of you who may be republicans out there....(I'm not a democrat either!)

AVB

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Hi AVB

I don't know whether to laugh or cry over the letter.

Waiving and wishing you the best.

Warmly

Kevin

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What a bunch of !!!!!!!!!!!!!!!!"s it's beyond belief Kevin. I don't think that I could keep smiling if that were me ( and it may be very soon) Is it a case of'"computer says No" and that's the end of story, are you sure you're not communicating with droids?

Love Kate xxx

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I love that you have such a good sense of humour you certainly made me giggle. Thanks Kevin. When you ring next time ask if the system is working before going through it all as you may need the breath your wasting later on. I cannot believe a system can be down that long in this day and age x

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Hi York

I try to see the funny side... Its better than banging my head against the wall, but I do that too sometimes!

Y'know I don't think it is down... They have broken so many of the guidelines and regulations and somehow we are on the 'wrong' side of the net... I have complained once and mentioned we are now being guided by Beacon (Specialist CHC advocacy service).

I will not start shouting foul whilst its going in our favour.

Sleeping dogs lie time.

x

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I believe every bit of it .I am trying to get an independent review and they don't answer my letters.Thelast response that I was able to get from them was a letter dated 24th November thanking me for my letter which they said they had received on 16th December!!!

What a well run organisation .

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Have you tried Beacon Advocacy (Specialist CCHC)? - One free hour telephone consultation and then very reasonable rates?

I found them excellent.

Good luck.

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Would any of these people hold down a job in a business?

I got there eventually so hang in there

I have not yet received actual funds but a written promise of funds on the way

Thinking of you all

Px

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Hi Kevin,

Welcome to the mad, mad world of the NHS. CCG, CHC - XYZ, ABC - oh whatever !

Keep smiling, a sense of the absurd has kept me going this far.

xx

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Every cloud....... You have the patience of Job and the wisdom of Solomon, Kevin. Glad it paid off. X

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Thanks :)

And developing the madness of King George I'afraid!

X

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Hi Kevin sorry to hear the CHC issue. I was part of tour of Houses of Parliament last Friday with our MP poor fellow he did not know where to run after I had earwigged him for an hour on PSP (he was a GP never heard of it so he was educated), CHC funding and access again no idea, and Research into small number conditions as he is on the medical research committee. He was rescued by his local organiser but I have an appointment to see him locally. Did I feel good, YES, did my fellow CAB volunteers get a word in edgeways No but told by them they all learned something.

Rest of weekend good, first time away since M's passing, saw a couple of brilliant shows British Library and V&A. M would have loved it. Foot weary tired but realising what I have been missing during the caring. Must bring up respite for carers with MP.

Kevin you look after yourself hope Liz is not slipping to fast from you. Best wishes with your CHC care.

Tim

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What a sweet encouraging letter Tim. Did you say there was life after caring? fancy that...I'l have to look into it....I am supposing an MP is not a Military Police as it is in the US? I told someone I feel like I am on an island ...I guess sort of looking at life from a distance....it hasn't been much more than a week but social security already found me a put a nix on things benevolent.....so Not to much moaning for me I ve got to get off this island......I guess thats my life after caring.....ha

Good to hear from you Tim

AVB

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Thanks AVB like the idea of Military Police I think my Member of Parliament (similar to House of Reps) hoped to find some Mil Police while I nagged him.

Best wishes hope you are beginning to climb out of the grieving process, hope the family helping, good luck. Tim

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Good for you Tim! And well done on doing CAB. I had planned on doing that or a Mental Health drop in Centre... Maybe one day.

We could do with a Parliamentary PSP Bull Dog... And your clearly good at grabbing their trouser legs! Good for you.

Glad you like the shows. It must be a little odd the first time out.

I do hope you're doing OK Tim.

No Liz isn't slipping so fast. Were hoping for another summer in the garden.

She's in the doghouse today ;) We've just got some respite in... We kept having to cancel because of appointments. Today was my first afternoon to get a good crack at the garden... three whole hours. The respite worker has done a lot of care for Liz and they get on well. After a couple of hours she came out to say Liz had sent her off as Liz was watching a film and there was no point in her staying. I got that put right very quickly! She is good though and we take care of her. She gets a lunch too as she feeds Liz. Its nice.

Re. CHC... Could Putin be behind it do you think? :)

Take care Tim

Best

Kevin

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Tim good to hear from you. Well done to you for bending your MP's ear! They have no idea what is really happening to people. I have been sending email to MP's on and off over the past few months. I have to say I am not impressed by them! Anyway when I get to your stage I will do exactly what you did. I was invited to the House of Lords last week so might take that invite up too. They talk for ages in there!! Maybe we could write an essay for the one I have in mind? He talks a lot so we could do a topic for him?

Thinking of it maybe everyone should do the same as and when they can? Then they might all get the message?

Glad you are doing something with your life. Margaret would be proud of you.

Marie x

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Unbelievable , yet expected.

I've never forgotten answering all questions as to what my husband could or could not do, can't toilet himself , has to be fed , and so on .......then the voice said...."last couple of questions....does he ever go out on a bus on his own"" and " how does this all affect you " To which I replied " bus? I wish " and " I thrive well on it " . It's all an exercise in how to make life more stressful. X

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I dare not even think of what I would say were we asked that!

x

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Hi Kevin. I wondered how you got CHC for Liz if you don't mind telling me. I assumed that I would be able to get it for John further down the line but my dad is in a nursing home and has been receiving CHC at the higher rate but now they are going to stop it. The reason given that he does not need nursing care but only care from carers. He is lying in bed and hasn't been out of it for 13 months. He is totally dependant on the staff. I say this because I thought I would be able to get care for John when I felt I couldn't manage it. At the moment I shave, dry him after showering and dress him. Help with personal cleaning.I give him his medication (I discovered he'd been dropping the tablets down of the side of his chair!), I can manage at the moment but realise having read all your posts that more care will be needed. So I wondered at what stage do you apply and do you get for "caring" as opposed to nursing. Sorry for long reply. Realise I should have done this as a separate post. Vron xx

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Hi VronB

I'm sorry you have so much to deal with right now.

They can't just hand the care over to the Social Services. The CCG must first re-assess his needs and if he no longer meets the CHC criteria then they can refer to Social Services. You should have been invited to that assessment. Has it taken place?

If it has the result can be appealed. (I can give you pointers on that it is not difficult)

No, all to often the CCG present it as a Social Care vs Nursing issue. The Coughlin case threw that out and the Judges findings made that case law...

To qualify for CHC one needs to meet certain 'needs' which are scored

See: caretobedifferent.co.uk/dif...

Next, if thay have done an assessment and referred to Social Services than Social Services need to do an Assessment (but don't forget you can appeal the CHC too). Again you need to be at that assessment to explain his needs in depth. This is vital. In addition you need to request them to assess whether or not this level of care exceeds their "Legal Limit". There is a level of complexity of care which they are legally not allowed to exceed. If they declare that the care is beyond that limit they are not allowed, by law, to give care. In that case it falls to the CCG and CHC.

If you would like more guidance please feel free to switch to private messaging. I am more than happy to help.

Either which way - Good luck.

Kevin

xx

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You're brilliant thanks so much. Xx

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Thank you

I missed a lot of detail out.

If you are following any given track I can give you quick overviews and links on how to proceed.

Best

Kevin

X

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I'm not pursuing anything yet but would appreciate the best way to approach getting care help. John's health is getting worse, I'm managing at the moment but am very much aware that my own strength is not going to be able to do it all on my own as he gets physically unable to move. He's a big man and I'm quite a smalll woman! So just thought I could do with advice as how to approach getting care. My gp who is very good just tells me it's not time yet. But it has taken me months to get back get help he needs now. Xx

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Hi

Sorry I was focusing on your Dad, who sounds like he may be eligible.

Do not trust anyone's opinion on Continuing Healthcare.

The regulations are very complex and few people understand them. It is not at all unusual for CHC staff to get it wrong. Certainly they give incorrect information all of the time.

Even a cursory glance of the caretobedifferent.co.uk website threads evidences this. Additionally many CCGs act unlawfully quite regularly. Bizarre, but true.

Ask the GP to make a referral for an assessment. It is your statutory right. If he says no remind him it is a statutory right. If he says no again you telephone them... it is your etc.

When they give you an appointment I will give you links to the info. you need.

The first assessment is called a DST. There are some very good advice pages on Caretobedifferent on how to deal with that. It is a brief ans simple qualifying assessment and the name of the game is to lay his and your needs on thick. Do not hold back. Your needs count too. Also because you do something like perhaps empty the commode does not make the need go away. The assessment has to assume you are not there. So emptying a commode is a need. So make a list of everything. One thing commonly forgotten is monitoring the effect of medication and changes in the condition and getting those addressed by Health Professional. Yes, you mare a nurse, you just didn't know it. (smiling).

I hope this helps a little.

I know how tough it is to manage on your own. It was only when I got to breaking point I started to sort this sort of thing out.

I hope this helps a little.

Best

Kevin

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Clarifying:

I would say to my GP - I want them to come out and take a look at the situation. The statutory right is to have the assessment, not the GP referring.

Sorry if my post sounded strident - it was typed at speed.

Best

Kevin

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I'm really grateful for all this. Thank you Kevin. Xx

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