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Elderly parents

Continuing Healthcare

7 replies

JeannetteR · 01/05/2019 11:48

I know folk may tire of petitions, but this is VERY IMPORTANT. Many families with their own children to look after are also having to look after aging parents who may be ill. Please sign the petition below. Thank you. PLEASE ACT. Don't just sign but email email email to all your relatives and friends and get them to do the same PLEASE - NHS CCGs are mismanaging and often illegally denying very sick people the healthcare funding that they are legally entitled to this is especially true when it comes to people with Dementia – often the officials at CCGs don’t even look at assessments before refusing funding:
petition.parliament.uk/petitions/238047?fbclid=IwAR25tHtHQ_kxPJwmRNsrhFluQpBs_bfYruCJnLtf7OPLTTmdAWTybk-ESAA

OP posts:
onalongsabbatical · 01/05/2019 11:52

Signed/shared OP. Flowers

jacquelinela · 02/05/2019 12:42

I have looked after my mother through three reviews by Continuing Care. Emotionally trialling to say the least. I have found a few useful articles here: www.zodiaccare.co.uk/articles/
and also here: caretobediferent.co.uk

Mishappening · 04/05/2019 23:08

This is a total nightmare. I got funding for my Dad several years ago; but now I am fighting this battle on behalf of my OH who has PD, a fractured femur and is basically helpless and weighs 6 stones - I have carers in 3 x a day - he is immobile, incontinent, confused etc. I am on my knees. I am paying for the care from his savings at present.

He has been refused CHC funding - it is laughable - how much frailer can you get I wonder? I am waiting the official letter of refusal before I can go to review.

chillivinegar · 04/05/2019 23:27

Signed. My family also experienced the nightmare of 2 CHC assessments for my father. Assessment questions were ridiculous considering that my father could no longer walk, talk or take care of himself due to an advanced neurological condition. Guess what - he failed the first assessment and the second time (after we kicked up a stink) he was offered a nursing home when all we wanted was some funding towards live in care. It would have been cheaper to give financial assistance even if it didn't cover full costs. Funding is limited and is very rarely handed out. My dad died last year with no CHC assistance. It's a joke TBH.

NewspaperTaxis · 07/05/2019 12:36

Hmm, should flag this up, be careful what you wish for.

In 2014 my mother went into Epsom General Hospital after care home neglect (it's a long story and I post about it on another thread) and when in a private ward was fast-tracked for free NHS Continuing Healthcare, and later discharged, 'given' three months to live.
We hadn't even asked for it - isn't that nice?
Thing is, the moment she went on that we found it very hard to get anyone to give her anything to drink.
It's true that I myself at the hospital had to take time off to oh-so gradually get her sipping on a spoon, then a straw, and then eating a bit while the staff did nothing along those lines.
But even when we had turned a corner and she was drinking a litre a day, oddly, nobody offered to take over.

And after she was discharged, we ran up against real oddness whenever we tried to get the care home to give Sheila drink. We just didn't know about the Liverpool Care Pathway programme, where the elderly are killed via dehydration and malnutrition.

Since then it's been scrapped, supposedly, but the new NICE guidelines have been slammed as even worse. Basically, the guestimate how much longer your parent has, then place them on covert end-of-life care which is a self-fulfilled prophecy, because they won't give them much drink.
This works a treat with anyone who as an 'incurable' illness such as end-stage Cancer, or something like dementia or Parkinson's which is also technically 'incurable' so on a legal note comes under the same category even though they can hang on in there and enjoy life.

Lastly, if they can get 'dementia' on the medical notes, in particular 'severe dementia' even though it's not true, you can't contradict that because you won't be allowed to see the medical notes if you didn't know to get LPA in Health and Welfare, so they can create a fictional narrative about your parent that you aren't privy to. And you aren't then the decision maker for your parent anyway, at that point the State has its hooks in them, and the State benefits from your parent's death, it simply saves them money. Legally, if you didn't get LPA in Health and Welfare, then they become under the control of the State once they've lost mental capacity, or are deemed to have done, it's a nebulous area. By 'State' I mean the local NHS CCG and local authority eg Social Services, who will be working in tandem with each other to cut costs.

For that reason, I came to regard the NHS Continuing Healthcare as the 'freebie with strings' along the lines of yep, we're going to kill you parent but you can have this one on us. We'll pay.
I mean, otherwise why would they just hand it out unbidden, for nothing, when usually it's so hard to attain?
For the next few years, my sister and I had to forgo our lives and careers to attend the care home daily to give our mother drink, while all our appeals on this issue to the care home not only met with deaf ears, but drew sly retaliation and counterattack safeguarding concerns raised against us, the usual State strategy of victim-blaming and misdirection, 'It's not us, it's you...' type of thing.

Mishappening · 07/05/2019 13:02

I had similar in hospital - OH was in for a month and my DDs and I had to be there the whole time to make sure he was given liquid and food - they would roll up with it and put it out of his reach. Even when he was on IV fluids they would forget to change the empty bags.

I am amazed that you got CHC funding without being asked to sweat blood and battle for weeks as I am currently doing. I am so sorry that you too had to battle for dignified and decent care as I am currently doing. It is wearing me out - some days I feel like giving up.

NewspaperTaxis · 07/05/2019 13:22

Oh, the putting drink out of his reach is a common strategy, and you get that in care homes too. Legally, you can't say they haven't provided the drink. It's like putting an unopened can of dog food in your hound's dish, however. They'll also be left off any tea run.

Look out for the lying 'em down flat on their back/leaving the window open on a chilly day trick, too. Or under an air vent, perhaps? Google it.
Sometimes it seems they just take the piss, such as putting cleaner fluid in the water jug.
www.theguardian.com/uk-news/2018/sep/20/joan-blaber-hospital-trust-rebuked-death-cleaning-fluid

Yep, you'll battle for it. You're caught up in a war of attrition by the state against the elderly and vulnerable. Like anyone in jail, on disability allowance, on universal credit or on the Windrush, if you are currrently costing the state money and contributing nothing (in terms of taxes) then they want you gone. Death or deportation, they don't mind which.

Anyone protecting them, like you, and they take out the bodyguard!

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