Changing the goal posts

[Pete J]

I wonder how many of you have fallen victim to the change in criteria for people who were entitled to continual heath care, and palliative care funding ?
My wife is in the late stages of early onset Alzheimer's. We have over the twelve months been NHS continual health care funded.
She is 66 years old and weighs just 6stone, she cannot Walk, Stand, Talk, Hold anything in her hands, understand anything that is said, she is doubly incontinent, needs turning in bed every two hours, she has severe swallowing problems, it usually takes around two hours each meal time. In fact she cannot do anything for her self and needs everything doing for her.
She has just been reassesses and we were told that she is a border line case. How the hell they can arrive at that conclusion I will never know.
We are awaiting their final decision and if it goes against us we will have to foot the whole care bill with no help whatsoever.
Kind Regards
Pete

 

[PeggySmith]

Fight back. They're interpreting it all wrong. Start by googling Grogan. It's a legal case interpreting the law. No time now, but I'll get back to you tomorrow with some more stuff.

Always remember the mantra that a well managed need is still a need!

 

[Kevinl]

The problem with both the Grogan and the Coughlan cases is that the LA's just ignore them and apply the rules they see fit, legal or not.
Until every case get's contested in court and the legal fees cost more than the care fees they'll continue to do that.
Millions if not billions of pounds is at stake here, if just the people on this site who believe (and probably are entitled to CHC) were given (let's say £1K pw) as CHC funding that alone would be...loads (too big a sum for me).
The LA's will defend it by saying they give CHC to people, they do, but it's usually someone with a very limited life expectancy who may well be in hospital if they didn't get CHC. If you don't oblige them by falling off the perch by the review then expect funding to get withdrawn seems to be the way.
K

 

[lemonjuice]

I wonder how many of you have fallen victim to the change in criteria for people who were entitled to continual heath care, and palliative care funding ?
My wife is in the late stages of early onset Alzheimer's. We have over the twelve months been NHS continual health care funded.
She is 66 years old and weighs just 6stone, she cannot Walk, Stand, Talk, Hold anything in her hands, understand anything that is said, she is doubly incontinent, needs turning in bed every two hours, she has severe swallowing problems, it usually takes around two hours each meal time. In fact she cannot do anything for her self and needs everything doing for her.
She has just been reassesses and we were told that she is a border line case. How the hell they can arrive at that conclusion I will never know.
We are awaiting their final decision and if it goes against us we will have to foot the whole care bill with no help whatsoever.
Kind Regards
Pete

I share your frustration.

Apart from the low weight because my mother doesn't really understand 'food' and the staff just keep going until her plate is empty and she is therefore actually gaining weight, because she doesn't use up much energy that is being put into her, she is very similar in that she is immobile, can nothing for herself and has to have all her needs anticipated because she is no longer able to communicate.

Last year at her CHC meeting although she obviously scored a 'positive', when it came to the full DST checklist they downgraded her regular episodes of ASCs as they had 'stabilised' at roughly 3-4 weekly intervals and therefore had become 'normal for my mother and therefore predictable'.

However having been awarded CHC funding and then have them now threatening to take it away must be far worse.

 

[Saffie]

The problem with both the Grogan and the Coughlan cases is that the LA's just ignore them and apply the rules they see fit, legal or not.
Until every case get's contested in court and the legal fees cost more than the care fees they'll continue to do that.
Millions if not billions of pounds is at stake here, if just the people on this site who believe (and probably are entitled to CHC) were given (let's say £1K pw) as CHC funding that alone would be...loads (too big a sum for me).
The LA's will defend it by saying they give CHC to people, they do, but it's usually someone with a very limited life expectancy who may well be in hospital if they didn't get CHC. If you don't oblige them by falling off the perch by the review then expect funding to get withdrawn seems to be the way.
K

I think you are confused Kevin. The LA are not involved in granting CHC funding. That is solely down to the NHS via the various CCGs in the country.

 

[Saffie]

Fight back. They're interpreting it all wrong. Start by googling Grogan. It's a legal case interpreting the law. No time now, but I'll get back to you tomorrow with some more stuff.

Always remember the mantra that a well managed need is still a need!

It is indeed a mantra and one that is often quoted on this site. However, no matter how many times it is quoted, it still won't get everyone who deserves it the CHC funding.
It would be easier to accept if all CCGs played by the same rules but they don't.

 

[Kevinl]

I think you are confused Kevin. The LA are not involved in granting CHC funding. That is solely down to the NHS via the various CCGs in the country.

Sorry Saffie, you're right. It's the NHS/CCG not the LA who do CHC. I just lose the plot sometimes as this issue makes me so mad that they just ignore legal precedent because they know that very, very few people will actually take it to court.
K

 

[Saffie]

Sorry Saffie, you're right. It's the NHS/CCG not the LA who do CHC. I just lose the plot sometimes as this issue makes me so mad that they just ignore legal precedent because they know that very, very few people will actually take it to court.
K

Oh I know! I have no great love for the CHC team here! They are the only people who seem to have thought my husband's many serious medical illnesses - even aside from those induced by dementia - were not a criteria for the funding! The AS appeals lady said he had slipped through the net. Big mesh on that net 'cos he slipped through it more than once!