How can they do this?

Oh for heaven's sake annsixty - I cannot believe that the DWP gave you grief over an error made in the midst of all the trauma and sadness of placing your OH in a home. It is beyond credence that there is no sensitivity from them.

To be fair, when I rang to tell them when OH went into a NH, the man I spoke to was lovely and told me that AA would not be cancelled but suspended and if circumstances changed it could be reinstated with no problem. He also took pains to make sure I knew about any other benefits or health funding I might be entitled to - I was surprised and impressed by his kindness.

I am so sorry that you had to run the gauntlet of threats from the DWP at such a difficult time.

A friend of mine who has ovarian cancer was wrongly paid a benefit, which she had said to them she did not think she was entitled to, but they insisted she was. When they realised their error a long time later she was forced to pay back every penny.

Yes, it is a term used “entitled to”.
Yes SRP is a benefit and included in the figures for benefits.
If the DWP believe they have overpaid a benefit or alternatively been fraudulently paid, then they can claim as it’s the public purse.
You cannot give away your money so that you become a burden on the public purse. You can however, spend money on yourself, this will ultimately bring down savings. My suggestion would be to prepurchase a funeral. I advised my parents to do this and thank goodness I did, at least we could just produce the folder and put mums wishes into effect. Spend it on yourselves. You cannot give it away.

Or if money has been given away to avoid fees or mimimise fees to be paid.

And - the DWP can claim against an estate's beneficiaries, years later, if they believe an overpayment of AA or PC was made!

And - the SRP is, apparently, a benefit - not a pension as of right!

I know, and it is presumably a legal term normally used to tell us what we are entitled to but harsh under the circumstances, telling someone in distress that they are entitled to fine them !

Yes, Callistemon “entitled to” is used in all letters from DWP.

Have you read your updating letter from SRP I think it may well use this wording in that. I am not in receipt of mine so cannot say and cannot remember the wording anymore since leaving the service 13 years ago.

My mother’s AA was taken into account in the assessment and her contribution reduced in line with her SRP, AA, private pensions.

Sorry to mislead you. You were possibly overpaid during the period of your husband entering the home.

If there are any change in circumstances, one of your first calls should be to the DWP. When mum passed away, the registrar at births, deaths and marriages gave us a number to use online to cancel all public services, it worked well and saved a lot of Agro during a difficult time.

they decided not to fine me
That is just unbelievable annsixty, that they are entitled to

I was misled then Luckygirl In all the trauma of moving my H into care, it had never occurred to me to notify DWP, when I did realise I rang them and was cross questioned quite sternly as to why I hadn’t notified them.
When I explained they decided not to fine me as they said they were entitled to and I had to repay from the day he went in.
I totally agree that it should be continued to be paid, after all it is to help their situation.
I think it was about £330 , this would help toward fees.

AA continues to be paid for 4 weeks after entering a home. It continues after then if the resident is totally self-funding. However, if you receive any contribution at all from SSD (even if it is less than the AA!!) then AA is stopped.

I think it should continue if you are providing a third party top-up, as this is in essence a chunk of the cost which you are self-funding - unless of course it is being paid by a millionaire relative.

CoolioC
Sorry but your statement is misleading.
The facts are not as you state.
I need to get my papers out to say exactly what happens but AA is stopped as soon as someone enters a home, I was never aware of it being paid to the home.

Being responsible for the dementia care, like most people, happens when you are perhaps older and physically and mentally exhausted.
I have several under bed boxes containing the paperwork regarding my husband's dementia.
I will not dispose of it until I get over the whole experience.
I understood the illness, millions go through that. What I couldn't understand was the beaurocracy, so complicated.
It was a long torturous 5 years. All I can say is that I survived.
What would have been great would to have had a dedicated mentor to guide one through the whole process, someone to refer to.
There were so many agencies- I was dizzy. Keeping a record of every thing was a nightmare.
Also my Christmas wish wish would be a really good public campaign showing the complications of the illness. Adverts, showing the inconsistencies of behaviour and making people listen to the carers.
Some of my worst experiences were with people who should have known better.
To illustrate, my husband desperately needed the toilet when we were in a charity shop. After the manager explaining that they were not insured to let him use the toilet. When he started to wet himself I just broke down. They let him use the toilet. I had to cut short our outing and get him home.
The public should be aware that one doesn't know when the incontinence starts.
There were many instances of poor understanding.
8 years on and life is good again.

Yes Callistemon, the AA gets paid to the home along with SRP minus about 24£ per week which is allowed for the person to spend on a weekly basis. The AA and SRP go towards the care costs along with any private pensions belonging to the person who goes into care. This is calculated along with savings up to 23250 to decide the LA top up. I think you should look into continuing care as this is paid by the NHS as opposed to the LA.

I sympathise as a similar situation hit my father this year and now he has to keep a large house and heat it on his own. My mother has passed away now. It’s bloody difficult, we have been through this, this year. Have you checked about pension credit? They cannot make you sell your home to pay, that I know for sure. It’s just do you want to stay in a great big house on your own? My father does so...

My heart goes out to you, I’ve been through similar things with a close family member who had to go into a home. It’s all about money this person self funded for almost 6 years, when first went into the home I had a letter as I was his next of kin saying sorry to hear so n so has passed away had the correct name but you owe us such and such, Wrong! Nobody owed anything, he was very much alive!!, when I read your post my stomach churned for you, I know all to well how heartbreaking it can be, I wish you all the luck in the world with this situation,

Can really feel for you,it’s not about the people but the money. I hope you can find some kind of answer to this, best of luck

What we desperately need is a simple system that works, perhaps similar to the German or French ones. We'd all pay into it and it would be ring-fenced for care.

I believe that roughly one third of us (our kids, grandkids too) will end up needing long term care so OK, it cannot ever be entirely 'fair'. Some will never need it but we'd have the essential peace of mind of knowing it was there if and when needed.

If you are totally self funding the allowance is still paid.
Any help from SS and it is stopped.

Do they stop attendance allowance altogether if a relative goes into a care or nursing home? Surely the allowance should be paid to the home?

justwokeup that is such a wise and good summary of it all

I had one of those letters from DWP today and my OH, similarly to librarylady, pointed out that it was just a standard letter and I shouldn't get upset about it. He was right, I understand that, but, like Luckygirl, I did. This uncaring and downright rude letter was the final straw due to
(1) all the guilt I felt about leaving my relative in a care home,
(2) the bone-weary exhaustion resulting from caring for my relative while fighting daily for attention from a SW, who had her own huge workload and problems I completely understood (and who came through for us in the end); not sleeping; trying to keep all the other balls in the air; and overwhelming continuous worry and grief
(3) finding money to pay 'top-up' fees for a care home (and yes, I understand too that we need to be careful with public money and stop my relative's benefits, such as attendance allowance, for care the home is now providing, and also that while we cannot be made to pay the top-up fees my relative would be moved to an unsuitable care home that was within the local authority 'ceiling' if we didn't).
(4) the frustration that every step of the way is a struggle and a battle with endless paperwork
(5) generalisations like 'people who have worked all their lives fund the care of others who don't'. My relative worked hard every single day of their life for more than 80 years, caring for others, but was an unpaid 'slave', not able to earn money due to their circumstances. 'People who have worked all their lives' (like me, actually) should maybe reflect that people like my relative in lots of ways allowed them to go out and earn money for themselves.
We always say come on GN and vent. Luckygirl is doing just that, I think, without really expecting any solution, and she and librarylady have my heartfelt sympathy. The only practical thing I can suggest is that our SW, and the home itself, said that care home fees can be negotiated down sometimes, and what you are expected to pay Luckygirl does seem excessive. Perhaps you can negotiate directly with the care home before you consider which path to take.

I found this interesting:

(extract from summary) 'England has the ‘harshest’ means test of any country included, exposing a larger proportion of people at a lower threshold to out-of-pocket payments for care'

www.incisivehealth.com/wp-content/uploads/2018/08/international_comparison_of_social_care_funding_and_outcomes.pdf

Hetty and ann have hit the nail on the head.

I am very philosophical about the rubbish hand that we have been dealt - why not us? It is just the way of the world. But I am not the least bit philosophical about the so-called "services" making life more difficult.

Have you spoken to Citizens Advice? They are really good at giving objective advice.

I'd think carefully before selling your home unless you are sure you will be able to live somewhere suitable for perhaps several more years.

I also believe you can get down to £23K worth of savings.

When my H was in hospital for 4 weeks before he died there was no reduction in fees at all.
I argued for weeks after his death as the care home never had any intention of having him back.
They had told me 2 weeks previously that they could not meet his needs and I needed to find somewhere else for him.
At the first opportunity the sent him to hospital and he never went back.
They had several empty rooms so were able to say they kept his room for him.
Until you are involved in this world you truly have no idea what it is like.