PSP Association

CHC appeal refused

Well folks, as I had feared - we have had P`s CHC funding appeal denied after he had been funded for 2 years.

Since the annual assessment in July was negative I have worked my socks off to gather more "evidence" to support P`s case. The fact that he is doubly incontinent, cannot eat without coughing/choking even on a pureed diet, has lost 4 stone, has to be hoisted, have everything done for him, is monosyllabic (when he speaks at all) ....... well, you all know the rest because it`s the same for all of us.

As one of our sons said to me "how ill do you need to be to qualify for CHC ?"

Even worse (if possible) I found out their decision by accident. The social worker - I have met once at my behest and the only one I`ve ever met - called me to say she`d had a message on 13th February to re-open the case. When I asked why, she said she`d been told that P does not qualify any longer for funding so we will need a financial assessment. I have been phoning the CHC office for 2 days before they were able to confirm it (oh, and apologise for how I found out).

I am feeling distraught, tearful, angry, frustrated ... and sick.

Worse still P is not eating or drinking very much at all and is sleepy all the time. He looks so unhappy, it is heart breaking.

Sorry for offloading so much but I know I`m among people who understand !

xx

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Hi NanBabs

Its heart breaking!

Your not offloading - this is our place and we can do that too if we want!

So sorry to hear this, but its not the end.

Three things:

1 You may be eligible for NHS-funded nursing care. The same people who assess for CHC assess for that. It does not require a further assessment they can us the information they already gathered. I seem to remember its worth about £180.00 a week.

2 Its not over yet. There is a higher level you can appeal to. If I were in your shoes I would go to Beacon NHS Advocacy. It is not desperately expensive (much cheaper than a solicitor bt a long chalk) and get them to go through the paper work to see if you have a case for further appeal. Write to them formally asking them for all paperwork surrounding the assessment as well as a written explanation of their decision. By law they should have sent that anyway. Put them on their back foot a bit.

3 You can re-apply after six months (I think), or, if his condition worsens at any time.

I will check the re-apply time scale should you want.

So sorry to hear this.

Hugs to you NB

Kevin

xx

PS I could give you more info about why he might not be eligible now - A lot of things we think of as nursing they now class as being ordinary care.

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Thanks Kevin,

I believe P was given an assessment re FNC after the CHC review in July and he was given this.

I engaged Beacon and their agent came to the appeal meeting with me. Although I valued the support and their advice on `Procedural Flaws` I felt that I had done most of the work, and their fees were 3 times the amount quoted in their brochures from 2 years ago.

I`m still reeling a bit but I know I will fight on - although I really don`t want to !

Thank you for your support, I even thought of writing to Jeremy Hunt en masse to ask him to at least standardise CHC allocation and not leave it as such a postcode lottery.

Really need those hugs !!

xx

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More hugs here:

((()))

You've been thorough. Impressively so.

Thanks for the info re. Beacon. Not good. If they charged beyond their published charge schedule I would ask for a refund or meet me in the Small Claims Court. However we are mostly running on empty as carers and need another fight like - not.

You have another level of appeal. It is more independent.

Writing to your MP as Amanda says, is very powerful. They have to furnish full explanations and they have to get it right. I've been at the other end of MP letters (in the NHS) the ground does quake.

Anyway more hugs.

Liz and I face this one in May and I am not hopeful.

Warmly

Kevin

xx

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God bless you Kevin.....I hope one or all of those things work for NB

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Thank you, I will try everything I can.

xx

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Oh NanBabs, what a ridiculous, cruel and distressing decision. How can anyone with a progressive condition who has been granted CHC, not need it any more. I can understand it being withdrawn from people who have improved but P isn’t going to is he. The Panel, who make the final decision, make it on what they read. They have never met anyone they have to make a decision on.

I feel so sad for P and for you and your family and hope you get any financial help you may need. It was bad the way you found out but I suppose it shows someone was concerned, informing the social worker to get an assessment done. I hope that outcome is more positive.

Sending you a big hug.

XxxX

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Thank you NannaB,

It`s beyond ridiculous isn`t it ?

Thank you for your hug and support.

xx

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I’m gutted to read this NanBabs!! As well as Kevin’s brilliant advice I’d try and get your local MP or councillors involved, apparently that kicks ars**s into gear pretty swiftly.....

This is a huge dread for me

Huge hugs

Please keep us posted x

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Hi Amanda

If you've got CHC at the stage your father is at you are likely to keep it.

Quite a few CCG's have hit upon this theing that when someone goes into care and is bed bound then their risks diminish and for that reason they no longer qualify.

They are pushing the bounds between what is nursing and what is ordinary care.

Your Dad may most likely be home and safe because even if the local CCG makes a policy change they cannot justify with drawing CHC as he worsens.

I do hope I am making sense here.

Waiving to you.

Kevin

xx

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Thanks K! Let’s hope your right!!!!!!! X

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Exactly what I was told by CCG, bedbound means risk diminished so likely to be withdrawn CHC. That's if you can get it to begin with. Here you really have to be dead before you do. I don't think we ever will get it.

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Concentrate on Risk. Especially stuff like non compliance with meds. and any problems with fluid intake, lack of urine, UTI's, ancillary issues such as blood pressure or other clinical conditions which need treating or monitoring as well as refusal of food and potential for bed sores. All of these things require nursing skills.

Hope this helps

Waiving

x

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I followed beacon advice booklet but still no joy! I think our CCG is particularly hard core!

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Absolutely Hard Core!

So much so they break the law regularly and twist the regulations beyond what is reasonably possible.

The CCG is making really tough decisions every day about funding hospital business units (each specialism has to bid every three years for funds) and everything else and they're trying to keep the underfunded NHS afloat.

I feel very sad about it all.

* insert here a thousand pages of fact about how enormously effective they are on their strangled budget. 2/3 the funding of comparable economies such as Germany, France and Holland and one fifth of the U.S. And the U.S, comes bottom of the league of positive outcomes in the top ten economies.*

Glad I got that out of the way.

So we must fight for what we need.

I do hope this is not too political.

Sighing.

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Unfortunately the state of our country now...not enough budgets in any services.

It makes me mad and sad and this whole caring role so much harder.

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And as someone famously said, "It does not have to be this way."

I'm so much in agreement with you.

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Thanks Amanda,

I went to the MP last autumn but he said he was `unable to interfere in procedure` but referred me to a procedural complaints department.

However your idea of a local councillor is a good one and I will follow up on that, thank you.

xx

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That was cowardice or laziness on the M.P.'s part.

they know they have full power to esquire on constituents behalf to ensure the service met regulations.

Shaking my head, but, I guess, not so surprised.

xx

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Probably both, but like you, I`m not surprised any more - I`ve become too cynical.

xx

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Your very welcome darling, thinking of you as this unnecessary added stressful time! X

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Ps definitely a lazy MP!!!! Bloody disgusting x

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Nanbabs this is beyond disgusting! Your MP is a total disgrace. What does he think his job entails if not representing his constituents?

I don't know what political party he represents but I would definitely complain about him to the National Party. He will get a kick where it hurts!

Your local council will have someone in the cabinet who is responsible for adult social care and who will have contact with the CEO of your local CCG. The same is true of tge leader if the council. Contact your local councillor and ask him/her to arrange an urgent meeting with the cabinet member mentioned above or the leader of the council.

Then ask them to arrange a meeting with the CEO of the local CCG which includes not only one of them but you as your husband's carer.

Fingers crossed that one of them will have some decency.

Massive hugs to you.

Marie x

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Thank you Marie, very good advice that I will follow. I doubt any of them have decency or a conscience or else they couldn`t sleep at night.

xx

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Superb!

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Oh NanBabs, words fail me. What part of Progressive do they not understand?????????

My heart goes out to you. I would advise fight them tooth and nail,but am guessing how you are feeling. That's how they can get away with this s##t!

Sending big hug and much love

Lots of love

Anne

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Dear Anne,

I know what you mean - the clue is in the name Progressive Supranuclear Palsy, degenerative and terminal - what do they not understand ?

I will fight on (and boy oh boy is it a fight ) but when I feel a bit more collected - I feel shattered at the moment.

xx

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Oh NanBabs !!! Its so awful.

I have no words. It is so unfair and I feel so exhausted on your behalf.

People don't realise how anyone can be denied CHC in these circumstances.

I know how exhausted you must feel.

Big hugs from Jean xxxx

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Thank you Jean, hugs are really appreciated right now. Exhausted is the word, yet I can`t sleep - strange isn`t it ?

xx

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I'm so sorry to hear this. The world is so shitty. We live our lives and just when we need a little help we get crapped on from a great height.

Everything about the world is wrong, but we fight on.

My fight didn't involve CHC as David always lived at home and we had carers coming in. Maybe I didn't know things were out there for me, maybe I was dumb but we just tended to live day to day.

I know I have to fight for Mums NHS element of her Care home fees every year, going to meetings, getting the Care home managers to plead on our behalf.

It shouldn't come to this, but it does. Please keep fighting on.

Big hugs and the utmost respect,

Derek

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Thanks Derek,

We all live our lives, working hard and trying to do the best for our families, asking for no favours and yet when we really need help - we have to fight for it. Sorry, but it just doesn`t come naturally to me !

Your support is very welcome - and so are the hugs !!

xx

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Its hard to fight this battle anyway - but this is kicking when you're down ! I know how you're at the end of your tether anyway. Its just so wrong !!!

xxx

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Hello Nanbabs

So sorry to hear of your CHC issues. It's heartbreaking to see your loved one in such distress when those who could help seem to think we're unreasonable.

I just wish they could be made to change places with us for a week so they could appreciate what it is all about.

I see from the website you are only 3 miles away from me so when I get to your stage I'm going to have to deal with the same people. Not looking forward to that.

If you would like to rant over a coffee sometime give me a call on 01793 812146. I'm a good listener.

Best wishes Bryan

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Thanks Bryan, I`ll be in touch.

xx

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So sorry to hear you have this extra stress, I think the best idea is for these people to come and stay with someone with psp for a few day, let’s see how quick they can reverse there decision. Sending you a big hug. Yvonne xxxx

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Thank you Yvonne, hug is very welcome ! How are you both ?

xx

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We are ok george is finding hard to eat and all the other s**t that goes with the horrible illness very stressful, my heart goes out to you having to stress out so much more. Xxxx

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So sorry to hear that Yvonne, P is also refusing a lot of food and struggling to eat these days and it is so distressing because he loved his food ( probably too much !)

I sometimes wonder how our loved ones can endure so much, it must be simply dreadful to be in their bodies.

xx

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I agree with you would not want to go in if it was me, would hate it to keep choking all the time. Xxxx

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OMG!!! how can they deny something they have approved especially when he has gotten worse....do they not make consistent provisions for people with progressive illnesses....even medicaide over here in the US does that....I am really sorry darlin....well good news you've been through it before and I am sure you will win again....I just saw K1s words so I will leave you again with I am sorry and a big hug ....and remember we are hear for you.....

((HUGS))

Andrea

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I am so sorry for you .. we have just had a review after 18 months for CHC .. luckily it was granted (I think) as it still has to go before a panel but the assessor said its rare to be overturned after her visit. I would have been devasted with a refusal so send all my love and a virtual hug to you.. So sorry xx

Pauline

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Thank you Pauline, I think that they are being really tough in this area because they have no money. Common sense would tell you that terminally ill people do NOT get better but here they are just trying to fob as many people as possible off with FNC (funded nursing care) and handing over responsibility to the LA (Local authority - council). They have actually `downgraded` the Cognition domain from SEVERE (which it has been for over 3 years and was diagnosed as such by psychiatrists, neurologists and a neurosurgeon) to HIGH just in the last 3 months since our local resolution appeal hearing - and that is decided by 3 Panel members who have never set eyes on my husband !!! The hug, however virtual, is still welcome. xx

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I'm not sure if this is any help but there is a website "dedicated" to CHC.

caretobedifferent.co.uk

I haven't used it myself but I had been reading about it prior to my friend's fall and subsequent demise.

Xxx

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Thank you for posting this. I do know of the website and it is packed with information. I find it can be overwhelming but it is certainly very useful.

I find I need a clear head before I can tackle it !

xx

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