Paying for carers - a question

Jaxjacky, what the charities say and what the CHC will pay for are 2 different things. It isn't just me saying this but has been featured several times on different news channels. CHC push for Social Services to pay, Social Services will only get involved if you don't have any money and then they will pray for CHC for you because it means they won't have to find the money. The moment you reveal you have funds, you are on your own. The advice is very definitely not to have a financial assessment until you have had the CHC assessment. However, the SS will check your address and find out whether you own your house, etc if they can.
Most people with Dementia can't get through the tick list (DST) that triggers a full assessment for CHC. My mother did but the Assessors refused to assess because they didn't believe the Social Worker who had been working with us and her carers for 12 months or more. The Assessor had never met my mother or carers. That meant they didn't look at any of the well documented evidence which we would have shown the Assessment Panel. After 6 months, my mother ended up in hospital at which point we were forced to put her in a home. This meant we had another DST done...it was at this point that I realised that the home minimised everything because it isn't in their interests for them to help get CHC because they lose money. Mum ended up in hospital because of that minimising. It took 12 months for the challenge against the outcome of that DST to be decided. The CHC agreed they had made mistakes but will now not assess until Mum she is out of hospital. The hospital can't release her because she has nowhere to go and I will not agree to paying the fees until she has been assessed. Now we are in a Catch 22 situation which I've no doubt we'll lose even though they have agreed that Mum meets the criteria in 2 major areas. I bet the designers of this system aren't trying to navigate it whilst looking after the needs of a person with Dementia who poo smears, falls, attacks the carer's has kidney failure, lacks mobility, aspirates her food and a whole host of other problems.

Bijou

This was a very interesting read for me. As most of you know I am now one hundred years old.
Since my husband died thirty years ago I have been very
Independent and managed
on my state pension and some savings (now only a couple of thousand ) .
after I had bowel cancer when I was 80 and had increasing disability from osteo arthritis and anal cancer when I was 94 I have employed some one for an hour or so each day to do cleaning and tasks I cannot undertake.
I managed to get the lower end of the Attendance Allowance £50 a week but was refused the upper end because I can walk! (In a great deal of pain) and with the help of a trolley.

Bijou please reapply for AA. The higher level is not mobility related but for night time.

She needs to ask the person who ranged it, otherwise she may get a nasty shock. My husband had 2 carers 4 times a day, and whilst we got a hew weeks free - we were told to continue it would be £730 a week, of which we would have to contribute £300! Social services will be a financial assessment and work out what she has to pay. They don’t let you keep much of you income, so the sooner she gets this clarified the better. Nothing is free these days, unless you have nothing!

Farzaner. I had to apply for the lower Attendance Allowance three times even with the help of my doctor before I got it, Even with her help it was refused because I can walk a few steps.
Have a commode by my bed. Bought by myself as was the trolley, rise and reconcliner chair, bed and trolley.

Farzanah……trust me you would be gobsmacked if you knew what they are capable of but it ended up in Court and I don’t wish to go into it, it was too stressful and personal but I can assure you I do not lie. My DM did not have dementia but she’d had a massive stroke which left her paralysed, several TIA’s, 2 cancers, diabetic, blind, heart disease, kidney disease and the usual high blood pressure, high cholesterol, osteoarthritis etc basically a vegetative state apart from her brain and CHC told me she failed by 1 point because she didn’t have dementia just a bit of memory problem. It was a very horrible stressful 8 years for me.

icanhandthemback

*Bluedaisy*, incredibly CHC is not given for Dementia, it has be be for a medical condition rather than just for dementia. It is just crazy because I can't help thinking your brain cells dying or being inefficient seems medical to me! My mother has other issues but also has Vascular Dementia and Alzheimers.

Sometimes CC is awarded for dementia. Dementia UK offer advice here:
www.dementiauk.org/get-support/legal-and-financial-information/guide-to-continuing-healthcare-funding/

I don’t understand how anyone can get into your bank account without permission Bluedaisy.
When my sister omitted to pay my mum’s a/c to Social Services after only one month whilst I was away, they were chasing me for it and would have terminated care PDQ if not paid.

Flipping heck Bijou. How mean to refuse AA at higher rate. Did you apply a while ago? It might be worth trying again with someone who does the forms regularly submitting for you. Age Concern can help with this.
I would have thought you are at risk at night, especially if you need a trolley to help you walk, for example get to the loo.

77 & SAGGI…..I’m in total agreement with your description of social services, they acted disgraceful on many occasions when I had dealings with them for my mother. When my stepfather was looking after mum we found out he’d been abusing my DM so I contacted Social Services about him and they came up once to ask him if he was abusing her, he naturally told them no and my mum was too scared to tell them the truth that he was so they took no further action even though the woman told me she suspected I was correct! Then when he passed away, that same week they sent DM the bill for the care he’d obviously not been paying and tried to get DM to make them her LPA’s and did their best to convince her to go into a home until I told them to get out. Also my DH and I found out they had been into our bank account WITHOUT our permission or knowledge and asked us questions about money we had given to our son 2 years prior to help with his mortgage one month when he’d been short due to his wife giving up work because of giving birth to our DGS! Our bank account and business was absolutely nothing to do with my DM or her husband let alone SS poking their nose in our business was completely out of order, let alone questioning what we did with OUR money! But it just goes to show who has access to what. I agree they act like SS Nazi and poke they’re nose in without permission in peoples business when it has nothing do do with them causing unnecessary untold stress

This was a very interesting read for me. As most of you know I am now one hundred years old.
Since my husband died thirty years ago I have been very
Independent and managed
on my state pension and some savings (now only a couple of thousand ) .
after I had bowel cancer when I was 80 and had increasing disability from osteo arthritis and anal cancer when I was 94 I have employed some one for an hour or so each day to do cleaning and tasks I cannot undertake.
I managed to get the lower end of the Attendance Allowance £50 a week but was refused the upper end because I can walk! (In a great deal of pain) and with the help of a trolley.

Saggi there are charities that give you free ( non payment) time to sit with a dementia patient We had them for mum we also had someone once a week to stay over to give Dad and me a nights rest it was free through Alzheimer’s society
So you should have been able to carrying on with your swim

Bluedaisy, incredibly CHC is not given for Dementia, it has be be for a medical condition rather than just for dementia. It is just crazy because I can't help thinking your brain cells dying or being inefficient seems medical to me! My mother has other issues but also has Vascular Dementia and Alzheimers.

Icanhandthemback…….I didn’t say it was income dependent to get CHC but it was 12 years ago dependent on whether you had some type of dementia which my mother didn’t have, she was forgetful yes but not dementia but health wise she was in a terrible state, which should of easily awarded her the CHC funding. It may be slightly easier nowadays but I doubt that. I think it was obvious to us they wanted us to sell her home and use her money for her care which is what we did anyway. My DH and myself lived with her for 2 and half years when her husband died even though we had our own operations and health issues to contend with during with 2 careers coming in 4 times a day and then unfortunately she had to go into a nursing home for the last 18 months as I couldn’t do it anymore it started affecting my own health too badly. So for 8 years we paid all her care when i absolutely know she should have got CHC funding, I just couldn’t fight anymore I’d run out of steam! The whole system is unfair and completely unfit for purpose.

As I said above I paid £80 a week for 2x3 hours respite care so I could have a break from my H with dementia.
SS were very uninformed about fees for full time care when it arose and I had to get other agencies involved to keep a proportion of his private pension to which I was entitled.
The SW told me I would have to go on benefits to live.

I’m with you 77….. the ss Nazis ….they even wanted to know why we had transferred £1,500 to my sons account 2 years before….when I said it was a gift as he was forced to change his living accommodation and went from furnished to unfurnished flat ….they said “ was that any reason to make him a gift” if we hadn’t been so desperate I would have surely smacked her face…. he worked 35 years before his stroke which preceded the dementia and while looking after him I tucked away 47 years at ‘coal face’ …how disappointing this England has become when people like the ss can talk to you like you’re begging!

I had to pay for my alzheimers hubby to be babysat while I went for my swim twice a week ….£64 per week. I stopped swimming and stayed home as could not afford a swim costing £34 !! I had nothing on the NHS.

This really does need clarifying with Macmillan before a worrying bill turns up. With Mum we had six weeks care on the NHS, but that was after her hospital stay. During the six weeks she was assessed by the local authority. The assessor came to her house and we were allowed to attend the interview but not participate. Before we had the assessment result her six weeks expired and one day her carers turned up to say goodbye! We had to very rapidly contact a private agency to ensure continuation. Eventually the assessment arrived and she was not eligible for any support and had to pay full rate from then onwards. We stuck with the same agency who were not very good - the standard of carers was much worse than the NHS team, but Mum couldnt face another change of team. We very much wished we had not been obliged to use any agency that would take us on at virtually zero notice. Its possible the system was explained to Mum at some point, but although she didnt have dementia, she was in awe of 'the authorities' and would never have asked questions if she didnt understand. Unfortunately we found that unless you ask questions no one bothers to inform you of things like who is paying.

Totally agree.

I don't think your friend had all her faculties.
Firstly my mother who didn't one her own home, had no savings and had Alzheimer's and Cancer and worked all her life and was 83 years old before we got any help for her, was right from the outset financially assessed by a Nazi from the social services!
I say that because that's exactly how the woman from the ss spoke to us and took a fine tooth comb to all my mother's bank statements three years worth and they have a set amount of money they tell you that you need to live on, and God help you if you lie.
The McMillan Nurse mum had was wonderful and was extremely helpful in mum getting a blue badge and to not have to pay council tax. So despite your assumptions in your friends case maybe you have been told incorrect information on the other hand if you feel that bitter and nosy about your "friends" business you can always report her to the DWP!

they will be billed by the county council of where they live. 6 weeks paid for after leaving hospital by nhs then county council

that's how a family member was billed and they paid the bill they were sent each month. they had 3 carers a day and they were means tested to see what they had coming in and what savings ect.

Farzanah, it would make all the difference if those with money could pay the difference between the cost of CHC and the fees of the care home. We are struggling to find one who will allow Mum to stay if she is successful with her claim. If she lived at home, she would have to pay for her food, clothing, utilities, etc. We don't want anything more than her care paid for because she will die without it being provided. The system is disastrous, stressful and not fit for purpose.

Bluedaisy

They told her she would have to sell her house to pay the bill and go into a nursing home. Although she had met all the criteria for funding she was 1 point short for funding as she still had mental capacity!

Then it must be Social Care. You do not have to repay Continuing Health Care. You also do not have to be lacking mental capacity to get CHC, it is not income dependant. If her husband is on dialysis, he should be looking at it too. Look at the "Care to be Different" website which will tell you all about it.

They told her she would have to sell her house to pay the bill and go into a nursing home. Although she had met all the criteria for funding she was 1 point short for funding as she still had mental capacity!

They do need to ask if Social Services have got involved as my mother had a massive stroke a few years ago and became paralysed, she also had 2 different cancers and numerous other health problems. When she came home a big care package was put in place 2 carers 4 times a day. My SF who lived with her for the first 4 years (and I presumed was paying for her care package) passed away from cancer and we had to move in with her because she didn’t want to go into a home. The week he died my DM received a bill from social services for £180k (yes you read correctly!) and asked if they could become her LPA and told her she would also have to go into a nursing home. Long story short as her LPA I told them politely but firmly where the door was and reassured my DM she would be going nowhere and contacted a Solicitor to tackle the Invoice. The story is too long and personal too go into now but suffice to say it took me 3 years to settle and 5 Court dates, we did have to pay quite a lot of the bill obviously but my advice would be to your friend to check and double check who’s paying for the care package. If her cancer is terminal then I would of thought she would get some help but it’s always worth checking and getting the answer put in writing .

Yes exactly Icanhandthemback. As I said up thread.
It is unfair, dishonest and basically due lack of funds.

To contest a decision you need persistence, and plenty of money if you use a law firm.

There is no fairness in the system and very difficult to separate social from health care because they interact.

If the government agreed to put a cap on the amount private payers have to pay it would help, but they obviously don’t think it a priority.

It’s a lottery. Some of us die suddenly requiring no care, and
Others, like my mother, linger in a declining state for years, costing a fortune.