Continuing care: can you get it?

[andrean]

There's a column in the guardian family section on saturday, about a woman's experience of her dad's dementia. Recently she reported that he'd been granted 'continuing healthcare' - ie that he didn't have to pay for his nursing home care.

As far as I can gather from regular reading of the column, he doesn't have any major physical health conditions, just his dementia. My understanding of continuing care is that it's not usually awarded unless you have fairly complex physical health needs as well (ie you can't get it just because you have dementia and need 24 hour care).

I'd be interested to hear people's experiences of this: can you get it if you've just (just!) got dementia, is it even worth trying, how bad (medically) do you need to be before you can get it etc.

 

[crazyfish]

There's a column in the guardian family section on saturday, about a woman's experience of her dad's dementia. Recently she reported that he'd been granted 'continuing healthcare' - ie that he didn't have to pay for his nursing home care.

As far as I can gather from regular reading of the column, he doesn't have any major physical health conditions, just his dementia. My understanding of continuing care is that it's not usually awarded unless you have fairly complex physical health needs as well (ie you can't get it just because you have dementia and need 24 hour care).

I'd be interested to hear people's experiences of this: can you get it if you've just (just!) got dementia, is it even worth trying, how bad (medically) do you need to be before you can get it etc.

NHS CHC is a package of care arranged and funded solely by the NHS for a person aged 18 or over to meet the physical or MENTAL needs which have arisen as a result of illness.
The 1946/48 HEALTH ACT clearly states that every British citizen is entitled to FREE NHS at the point of need regardless of any financial assessment.
The ploy is to hand over patients deemed as not ill to the SS who invoke the 1948 National Assistance act which requires them to recover their costs.
So it rests upon everyone to fight their own case as their is no help or proper guidance from the NHS ,SS or Government.
To achieve CHC for someone who is suffering from Dementia yes it is going to be tough but not impossible.
All of this process when you get into it in more depth you will find morally wrong.
But thats how it stands at this present time.
Good Luck.
MICK

 

[nimbus11]

Yes - you can get it and yes we did - much to our surprise my BIL was awarded CHC last week, surprised not because I dont think he should get it but surprised that we got it quickly and without appeal.

My BIL owns his own house so we had prepared ourselves to sell this but not necessary now.

My BIL is 58 and has early onset, however was admitted to hospital dec 12 and has had a rapid decline, he is bedridden, doubly incontinent, fed through a PEG and unable to communicate. We felt at the MDT assessment meeting that the SW was on our side, the discharge nurse decided it was borderline and sent it to panel as such (which turned out to be the new type of panel not the PCT), we heard within 3 weeks.

So we are now nursing home hunting.

I know we have been "lucky" (not really the right word), but wanted you to know that its not all doom and gloom on the funding front.

 

[Crazy daisy]

My mum was issued continuing healthcare 2 weeks ago. Her only problem is lewy body dementia. If she didn't have dementia she would be perfectly healthy. The dementia effects her health, she was assesed as having a primary health need. Most of her domains on the DST interacted with each other to make her complex. She is mobile, but has no spacial awareness and cannot be left alone for a second because she walks into things and injurs herself. She now has 24 hour 1:1 care, fully funded by the NHS. Mum was initially assessed in February but was not deemed eligible,despite having 1:1 support to maintain her safety in the mental health hospital after being sectioned. She was discharged to a nursing home without 1:1 and within 24hours ended up in A&E needing stitches. The home said she needed 1:1 and they could not manage her without it, so reapplied for CHC. She fell again the next day and got a nasty wound infection, went off her feet and was admitted to hospital just 9 days after entering the home, with severe dehydration and on deaths door. She bounced back after 48hours of IV fluids! Was assessed in the hospital for CHC and was awarded it! She is now in a different nursing home where she has been for just 3 days and the staff are fantastic. She has 1:1 care and they are keeping a very close eye on her fluid intake!

 

[Sunbell]

If I remember correctly, I read on another thread recently that if this is awarded it is not always permanent?

I believe it is re-assessed periodically and can be taken away. Is this correct? No doubt someone with more knowledge about this will put me right.

Sunbell

 

[Crazy daisy]

Yes, that is correct, mum has CHC for 3 months then it is reviewed. If she gets to keep it, it is then reviewed annually.

 

[steffie60]

Just googled continuing care and came up with this:

http://www.nhs.uk/CarersDirect/guide/practicalsupport/Pages/NHSContinuingCare.aspx

It may give you the information you need.
Hope it helps

 

[crazyfish]

Yes, that is correct, mum has CHC for 3 months then it is reviewed. If she gets to keep it, it is then reviewed annually.

It says in the Nat framework that it should be reviewed after 3 months.
But this is not always the case.
My father NEVER had a review.
Do not request it if it dosn't happen after 3 months.
But be prepared for the review just in case.
Make sure the CH keep accurate daily records .
Or write your own.
MICK

 

[Crazy daisy]

Oh thats interesting, though I am sure my mum will definitely be reviewed in 3 months because she is a high cost case having 1:1 24/7. We moved her out of county, the PCT (ccg) where she came from are paying for the first 3 months, they have requested her new county PCT (ccg) pay thereafter, but they have refused.So there will be some big debate going on, but at the end of the day, she is eligible for fully funded NHS care, whichever PCT ends up paying! I presume she will keep CHC in 3 months time as she is has such a high level of need, though they may at some point be able to reduce the 1:1 hours as her condition changes. She has had 24 hour 1:1 in respite and hospitals for the last 6 months and as I mentioned before, when it was removed the outcome was nearly fatal!

 

[Saffie]

A lot can depend on where you live. Some Health authorities are a lot more generous than others. Unfortunately, I was told by an Appeal helper of the Alzheimer's Society that my authority is one of the less generous ones!

 

[hectoress]

Hi My husband was reviewed for chc just two days ago and I didn't know what to expect but it turned out to be more of a check on how appropriate the care he was getting was and not a financial issue. They will review again in a years time but as his condition is deteriorating I can't see they would change anything. It is a postcode lottery situation as I know of other cases where it has been removed even though the dementia was worsening. I think the more complex and unpredictable the problems are the more likely it will be awarded. It makes no sense that people with a diagnosed disease that means they require nursing care are refused chc.

Keep fighting for it !!!!!!

 

[KentJude]

Hi my mum has been awarded chc - she is eligible for nursing home funding but as I've never found one up to a good enough standard she's staying at home and I care for her with one hour's funded care a day.

Mum is stage 7 AD, double incontinence, can't walk, feeds with difficulty. Not bed bound though. She has no medical issues apart from AD.

 

[Saffie]

Mum is stage 7 AD, double incontinence, can't walk, feeds with difficulty. Not bed bound though. She has no medical issues apart from AD.

This is what I mean by it depending on the authority - my husband has a number of unrelated health problems apart from dementia and all the above but was refused even full assessment!

 

[KentJude]

Wow Saffie that's ridiculous. I didn't realise there was that degree of discrepancy.

 

[geum123]

It also depends, if you are willing to believe what you are told about your relatives NHSCC assessment. They will try to mark down the domains.
If you don't agree, then challenge the decision.

I got NHSCC for my Dad.

 

[crazyfish]

It also depends, if you are willing to believe what you are told about your relatives NHSCC assessment. They will try to mark down the domains.
If you don't agree, then challenge the decision.

I got NHSCC for my Dad.

GEUM123 Is 100% correct.
Unfortunately its all smoke and mirrors with the NHS.
They don't want to pay for CHC so they will do anything they can to pass your relative over to the SS so they can then charge for care.
The whole process is ethically wrong and immoral but nobody is willing to bring a class action against the NHS to change things .
So the ill and those in most need have to fight as individuals to receive their statutory rights of FREE NHS care.
Divide and conquer is the NHS motto.
Which unfortunately works for them.
MICK

 

[andrean]

GEUM123 Is 100% correct.
Unfortunately its all smoke and mirrors with the NHS.
They don't want to pay for CHC so they will do anything they can to pass your relative over to the SS so they can then charge for care.
The whole process is ethically wrong and immoral but nobody is willing to bring a class action against the NHS to change things .
So the ill and those in most need have to fight as individuals to receive their statutory rights of FREE NHS care.
Divide and conquer is the NHS motto.
Which unfortunately works for them.
MICK

Yes, it's always puzzled me why, if you get sick with, say, cancer, you get all your care and treatment paid for. If you're unfortunate enough to get dementia (which I'd argue was a far worse fate), you're expected to pay for everything, as if somehow your needs don't count as health needs, or your relatives could easily provide all the necessary care if they could only be bothered. It does feel extremely unfair, a kind of 'illness lottery'.

 

[crazyfish]

Yes, it's always puzzled me why, if you get sick with, say, cancer, you get all your care and treatment paid for. If you're unfortunate enough to get dementia (which I'd argue was a far worse fate), you're expected to pay for everything, as if somehow your needs don't count as health needs, or your relatives could easily provide all the necessary care if they could only be bothered. It does feel extremely unfair, a kind of 'illness lottery'.

Exactly
you have hit the nail on the head.
No government is prepared tackle this.
The last report completed recently offering to put a cap on care fees has been a complete waste of time and £.
But it makes out that this Gov is doing something but actually this report may help only about 2% of the people paying for care.
Big deal .
MICK

 

[Onlyme]

I have always thought the NHS will pay CHC for those that have cancer as they can probably see the finish line when it comes to paying. With something like dementia they have no idea how long they could be funding someone.

When Mum was assessed to see if she would be assessed for CHC they asked Mum's nurse in charge would Mum know what clothes were appropriate for the time of year.

The nurse said no.

Assessor again asked but she would be able to work it out if two outfits where put in front of her.

No.

Would she know if one would be too cold for the time of year. The nurse lost it and said

no, she wouldn't have a clue as Mum didn't know what clothes were hers, didn't know what hot and cold were, didn't know what night are day were for that matter and hadn't had a clue what time of year it was for 2 years. If she saw snow she would it was August!

The assessor marked Mum as a B (showed some understanding or whatever) so the nurse asked her why she had put that when it was wrong!

Mum is doubly incontinent, can't feed herself, hoist, almost bedbound, dementia with loads of other health problems but we have been told Mum won't get CHC as the NHS doesn't have the money. I was told they are tightening up the criteria so that less people qualify.

 

[andrean]

It would be very interesting to see the variations in how this is interpreted in different parts of the country, whether there are places it's easier/harder to get continuing care funding. Does anyone know if the Alzheimers Soc or any other group has ever done this kind of research?