Dementia and NHS Continuing Health Care

Gingernutty

When I was Receiver for my uncle, I was told, that after a certain grace period in his new nursing home (12 weeks), he had to pay.

Sure enough, I got a very stiff bill from the local council every month.

I claimed all the benefits that he was entitled to including the full attendance allowance (utterly bed bound, completely demented).

Then the bills stopped. I carried on claiming 'everything' as I fully expected the bills to start again - the local council had a reputation for screwing up relatively simple things.

It was only when I had a meeting with the Court of Protection representative at the home, that I learned he had been assessed and had been granted full CHC funding.

Years before.

And the bills had kept coming after the award. I had no knowledge of any of this. No one had said a word or sent me anything.

It was a long and complicated process to find when the actual award was granted, who signed off on all of this, how much I had overpaid, how much benefit had been overpaid and how much was now owed by me to the DSS and the local council to me.

Never underestimate a local council's ability to leave you gobsmacked......

barry6521

I wish anyone who is trying to get funding lots of luck. The DST (decision support tool) that was introduced to bring some conformity to the system is so flawed as it all boils down to the assessors opinion as you will see from the figures I will be posting showing how its anything but consistent throughout the country, someone said earlier if it was easy it would cost the government too much ,if the billions that are handed out to people that just walk into the county never having paid in a penny then there would be plenty of money to fund people like us who worked all our lives paid our dues and now we have to beg to get anything. Lets take Corby Northants as an example, of the people that managed to get the funding 66% lost it at the 3 month review so I warn anyone to watch out for the 3 month review as that's when they will try and claw it back

FBaby

it all boils down to the assessors opinion

It boils down to the professionels assessement of the criteria. Who do you think would be more qualified and unbiaised to make that assessment? Surely not family?

Lets take Corby Northants as an example, of the people that managed to get the funding 66% lost it at the 3 month review

Isn't this evidence that the initial assessments were more lenient towards the criteria then?

Mr_Toad

barry6521 wrote: »

I wish anyone who is trying to get funding lots of luck. The DST (decision support tool) that was introduced to bring some conformity to the system is so flawed as it all boils down to the assessors opinion as you will see from the figures I will be posting showing how its anything but consistent throughout the country, someone said earlier if it was easy it would cost the government too much ,if the billions that are handed out to people that just walk into the county never having paid in a penny then there would be plenty of money to fund people like us who worked all our lives paid our dues and now we have to beg to get anything. Lets take Corby Northants as an example, of the people that managed to get the funding 66% lost it at the 3 month review so I warn anyone to watch out for the 3 month review as that's when they will try and claw it back

Oh dear.

You don't "pay your dues" into a pot so you can draw it out when you need it.

What is it that you're complaining about?

That a loved one needs care? That the state should pay for it because self funding would deprive you of an inheritance, money you haven't earned?

Are you more concerned about seeing the money disappear or your loved ones care?

My father had dementia and was self funding until he died. My mother has dementia and is living in a care home, she was self funding, until the money ran out, now she is funded by the state and she still gets the same excellent level of care as she did when she was paying for it.

My only concern now and in the last eight years was that my parents got the best care that they could. I don't think I have ever worried about what would have been my inheritance.


The current situation will remain unchanged as long as dementia is classed as a social problem rather than a medical one. Unfortunately no government is ever likely to change that position because they all know supporting it financially would be an impossible burden.

barry6521

your right Mr Toad .My wife and I have been together since we were 14 and we are now in our mid 70's, when she was diagnosed with Alzheimer's she asked me to promos her that I would never put her in a home, I love her as much now as I did nearly 60 years ago when her time comes it will be in my arms in our own home ,we are not fortunate enough to have money as I was only a labourer so we have to rely on the state and its when you see the state give a away thousands in benefits to people pouring into the county and we have to beg

barry6521

Only those who are or have been 24 hour carers for there loved ones will know what its like and all we want is a little help, This was sent to me from a friend on face book and I have it pinned on my fridge and read it every day to help through
ALZHEIMERS REQUEST
Do not ask me to remember,
don't try to make me understand,
Let me rest and know your with me ,
kiss my cheek and hold my hand.


I'm confused beyond your concept,
I'm sad and sick and lost,
All I know is that I need you,
to be with me at all cost.


Do not lose your patience with me ,
do not scold or curse or cry.
I cant help the way i'm acting ,
I cant be different though I try.


Just remember that I need you,
that the best of me is gone.
Please don't fail to stand beside me ,
love me till my life is gone.

Mr_Toad

barry6521 wrote: »

your right Mr Toad .My wife and I have been together since we were 14 and we are now in our mid 70's, when she was diagnosed with Alzheimer's she asked me to promos her that I would never put her in a home, I love her as much now as I did nearly 60 years ago when her time comes it will be in my arms in our own home ,we are not fortunate enough to have money as I was only a labourer so we have to rely on the state and its when you see the state give a away thousands in benefits to people pouring into the county and we have to beg

Barry,

it's a truly dreadful condition. I worked from home most of my life and just before Dad went into the home I gave up my house to move in and help Mum.

After dad had to go into the home it soon became apparent that Mum was also suffering from dementia. I was her sole carer for 18 months before it made me too ill to look after her. She didn't sleep and wouldn't let me sleep. I ended up in hospital exhausted and with pneumonia and Mum went into respite care while I recovered.

While in respite care they assessed her and decided one person couldn't look after her safely and she never came out.

You don't have to do it alone, you can get help. Contact the Alzheimers Society and they will give you advice on how to deal with the NHS and Social Services.

Don't worry about the funding, if you don't have the money it won't be you and any arguing about money is only the NHS and Soc Services arguing which of them will pay. What you do have to be careful of is letting them use you as free care. If you say you can do this or that they will let you and leave you to it as it costs them nothing.

If you point out that you are only one man and in your 70s and can only do so much they have to help. As a carer you have rights and your health is just as important.

Good luck.

littleheather

Hi sorry to add a question to this, we have got a relatively fast tracked CHC assessment next week for my relative. They have detiorated rapidly mentally and physically since the summer and has been in a nursing home after some failed hospital discharges. Relative is a self funder and I have POA. Current nursing home have given notice that they cannot cope and we cannot get anywhere else in the area to take relative due to wandering / difficult behaviour requiring 24 hr attention. We are advised that relative needs an EMI unit but to get in must first pass CHC assessment.
My question is why is that the case- we are more than happy to continue to self fund. I'd rather the assets were spent ensuring last weeks of life were spent in appropriate care setting.
I'm worried that the CHC seems such a hurdle if we are not successful relative has nowhere to go? What do I do then? I am only relative nearby and work full time.
I am struggling to navigate this social/health system!

Pidge_jen

If they've decided your relative needs the advanced skills of an EMI unit I very very strongly doubt they will fail the Continuing Care criteria. The reason they need CC funding is probably to do with the way the home is commissioned, they probably only take cases from continuing care directly. It's also to do with recognition and provision of needs, there are a finite number of places and by restricting them to those funded through continuing care, they can ensure (in theory) that the right people are receiving care with the appropriate level of needs as they've been through a comprehensive assessment process. Good luck.

littleheather

Thanks p-j. Keeping fingers crossed and trying to do all the homework!