How can they do this?

The care funding situation has been just like this for many years. People don't realise how truly dreadful it is until they're actively involved themselves.

The NHS and Social Services have become quite vicious in attempts at denying help and failing to meet their legal obligations. It's the direct result of dwindling funding and increased demand. For example (at risk of repeating myself) top up payments from family members are entirely optional. Only the person receiving care themselves has any duty to pay. There should be no pressure put on anyone else.

Social services are not, in fact, legally allowed to have a 'ceiling' amount (yet they all blatantly do - every area a quite different amount). Legally, they are obliged to increase the amount they pay to cover the care costs. They (very cruelly) threaten the prospect of a smaller room or a cheaper home instead, though.

The NHS use a checklist, then assessment (supposedly designed to identify those entitled to continuing care) to deny responsibility - by deliberately giving very low scores. It's as if you have to be almost dead to qualify now.

From experience, those involved sing a very different tune when a legal representative is present. That demonstrates what very thin ice they are skating on. Just when you are feeling low, you have to fight tooth and nail!

Yes, it's sickening that legal advice costs a fortune, even if it's recovered from saved fees. There are also costly 'lifetime care' policies where you pay a lump sum and gamble that you'll live long enough to profit, rather than lose. People choose them for peace of mind (understandably, but most lose, of course.

The whole scenario is a living nightmare for distressed relatives. They just want decent care for their loved ones. It was quite a shock to discover that the 'nice' homes locally cost £70,000 a year - for simple board, reasonable food and basic personal care. Nursing care costs more.

The reality of 'care' in the luxury home bracket:

There aren't enough staff - especially at night (no minimum number)
They're paid minimum wage
Food is OK - nothing special (budget? £25 per week)
Mistakes are made (and covered up)
Accidents happen (ditto)
Residents are sometimes neglected
(and worse)
The majority of fees are spent on accommodation and wages, rather than 'care'.
Fees are still payable (with a tiny reduction) when the resident is in hospital - and for two weeks after death.

Disgusting really, isn't it?

Lots of good advice here. I'm so sorry you've got to endure this at such a hard time for you.

Librarylady I have no idea why you should despise me for having no scruples in using my MP to help me.

Contact your local MP about this. I have done this in the past (a different matter) and they were helpful. They might be more keen to help in this time of elections. It is disgraceful and heartless to treat your husband like this, and you too.

I can understand Librarylady she is utterly exhausted. “Who cares for the carer”, nobody and as she said nobody asks either because you may want help. I note you were fast tracked for AA and hope you use this for help. This includes paying someone to sit with your husband while you go out for a coffee or perhaps the hairdressers as you do need to get away for your own sanity. You are still using the money for your husband as it’s to pay for someone to look after him. My father came to his wits end in April aged 92 after looking after my mother 24 hours a day it’s draining. My mother went into a home for respite and didn’t come out, guess who is left feeling guilty. Look after yourself.

My heart goes out to you librarylady as well as Luckygirl.

The whole stinking mess of social care needs sorting. I think it is a big enough issue to deserve cross-party consensus otherwise, like the NHS funding, it becomes a political football.

Taxpayers money is being issued here.

Some people can afford to pay for care in old age and I’ll health. Others (some less fortunate to start with - some profligate by choice) cannot.

The situation ends to be addressed. What is fair? How can it be delivered? Is it even morally even right to charge when someone with terminal cancer at the end of life, or pneumonia is not?

This awful debate has been kicked into the long grass for too long.

We need to sort it out, fairly, once and for all.

Can we perhaps look at best practice in other countries? Raise a tax levy that is ring fenced for social care?

I don’t know enough about it all to have an opinion.

Others are living through the nightmare, right now.

I typed a long post and lost it a little while ago so I hope I can remember what I said.

Firstly, Librarylady, I apologise. Your post did seem unkind in the circumstances, but now you have explained why you posted what you did, it is understandable.

Lost it again!

I will try again.

Unless people do challenge the system, do challenge those who send out these letters without a drop of empathy, things will not change. Some LAs seem to interpret the rules differently to others and LGOs may be driven by team leaders who only have finances in mind.

Challenging this, going to MPs, Councillors, etc, may help everyone in the long term so I still think it could be the right thing to do. By accepting this, by accepting this type of unacceptable communication at a time of distress, accepting that the rules have been correctly interpreted, means it will just continue.

I am sorry that you and your DH have to suffer like this.

Hetty58 plus Jennifer Eccles are correct. They cannot compel you to sell your home if you are over 60 and also your husbands saving are less than 23750. If his saving are just over this amount, I would if you have not already spend some of the money ie and this may sound hard pre-purchase a funeral. Personally I would make an appointment to see my MP ASAP and if possible before the election. Have you had a LA assessment? I also thought the post about continuing care was interesting and if that person knows more on this should perhaps post? I would certainly like to know more about CC bit can you get info on it? Never found any that spells it out in easy English.

It is so sad ann and librarylady that these considerations should be sent to burden people who are in already distressing circumstances.

It is a system that needs overhauling from the bottom up - tear up the whole scheme and start again.

And there needs to be a recognition that this will cost money - it cannot be done without it. It is a matter of priorities.

We all have to face facts, unpalatable as they are.
Just over a year ago I was in the situation Libraryladywas in.I had been caring for my H for years due to his dementia.
He then had a major stroke, I was 81 and absolutely at the end of my resources.
I did have to let him go into care, although fortunately his dementia was so far advanced by then he did not understand.
He died from cancer ( we did not know he had it)
4 months later.
I should have got CHC according to the criteria, I did not even apply as I was told I would not get it.
I bitterly regret that now.

When all else fails, share your story with the local news people....nothing like some bad press to embarrass them and put them in their place. They should all hang their heads in shame!!!!

I think librarylady needs a few hugs ? too! I think you are both just exhausted.

Actually LL I do understand what you mean about the standard letters that government workers are forced to send out (Having once worked in Government I was appalled at Some of the letters I was forced to write in response to complaints). However your initial post came over as unsympathetic and I think the OP is speaking about the council in general and not the specific person who had to respond?

It is all so wrong! I have complained to mine but stressed I was not blaming the writer.

I wish you both well.

@librarylady I'm sorry too for your situation. It may be unpalatable, but your original post is a truthful summary of facts. Many posters on this thread, while wanting to be compassionate, are sounding off without even properly reading what the OP has written about her situation.

Not attempting to diminish the awful , unacceptable and stressful situation Lucky and her husband are facing. It's relevant that today a number of directors of social services have spoken out about their fears that they simply can't cope with the demands because of years of short term reactive cuts to services, with no long term view.
They also say that if a private provider goes bust, which will certainly happen over the winter, the l.a.'s won't able to step in to care for the residents.

Well of course I am lucky - my husband was fast tracked for CHC. He got full PiP after a 20 minute phone call, no quibbling. Anything he needs to make him more comfortable someone will try very hard to obtain it for him. Of course, it probably won't cost them too much because all this is because he has a terminal, non-treatable illness. I hope he may go on past the 3 months but am horribly afraid he will not. He is not in a care home - he is here at home with me, dying in front of me effectively. This is no criticism of the OP - he is not in a home because he absolutely refuses to enter one; he cannot be forced and even if he could he would refuse food/drink until he died so I am his carer until the end. No one asked me if I wanted this, no one was interested.

If for some reason you think this should make me more sympathetic, well, I am not sure why. I think her situation has been longer and harder. But this time last year my husband could still get around, now I am just hoping he can survive into 2020. I didn't ask for my role as a carer and, frankly, I don't want it but there is no one else. But I haven't slept properly for months, the man I married has already gone as far as I am concerned and I am lonely and frightened. In this state of mind, and it not needing great insight to realise I work for a council, it was somewhat in the nature of the last straw to me to find a post trying to imply that public employee has deliberately sent out an unsympathetic letter.

I was perfectly prepared for my post to be reported and removed, I would be surprised if it is still there now.

And, barmeyoldbat, I am quite aware that people have no scruples in pursuit of their own way. This does mean I have to admire them; I am perfectly free to despise them, and I do.

Lucky I am so sorry. I have been in tears reading your post. There is nothing I can say or advise, but could not pass by without sending you love and hugs and . So sorry.

I hate my MP but have used him to help me with a problem with my daughter, and why not I didn't vote for him but he is there and being paid a very fat salary to do a job. No scruples here.

So sorry you are going through this ….the Daily Mail was running a campaign to get something done about this as a matter of urgency (except we all know nothing but rhetoric is happening !) I think most people are well aware of the injustice of this awful situation. There is an election coming up ,,,,,badger your MP and try to demand some concrete evidence something will be done. Contact your branch of Age UK and Citizens Advice (there will be information on line as well) and see if you can find out if there is a pressure group near you. I know this will not help in the immediate future but talking to others in the same situation might ease it a bit...once you know what others are doing. I had the same situation in France this year when I had to put my husband into a care home as he was no longer safe at home ….sadly I had to pay in full which I was only able to do as my brother passed away in the UK and I sold his house ...had no choice ...especially as we were living in France then, and there is no help if you are not French ! (to be fair, though, the French pay towards the possibility of requiring care in later life, through a special scheme deducted from their salaries)…...I do hope you can find some help or at least others to talk to who are going through this. I know you won't feel like doing battle at the moment …...good luck

I am aware that in contacting my MP I am speaking to someone who is in part responsible for the inflexible and insensitive system that has got us into this position in the first place. My Tory MP's office did indeed help to speed up the process for me; and it was obvious that they were used to trying to help in these situations. I did refrain from commenting on the MP's culpability in propping up the continuation of this flawed system - it did not seem the best way to get the help I needed!

Just because he is partially to blame does not mean that I should eschew his ability to make things happen to my benefit. I hope he can see the irony; but maybe not.

It is sad that those administering this system cannot do so in a more humane fashion.

I reported it Marydoll and hope it is deleted.
No compassion whatsoever.

It has been a very difficult journey for Luckgirl and her husband, the last thing she needs at the moment is a comment like yours, librarylady! ☹️

Ns see an MP o they cannot make you pay the fees if you don't sign to say you will, but they might move him.

My daughter was in residential care for a number of years and all her benefits went to pay her fees but she was left with £24 p.w. spending money. Lets see an MP live on £24 pw spending money. There was a top up to pay and I was asked tossing a form saying I would be held responsible for it, I refused outright but somehow they found the top-up of about £120 pw.

I would say, firstly appeal and create hell. Secondly is there any charity, a charity for ex servicemen etc who could help. Thirdly your MP, if a Tory ask him why they haven't or intend to, do anything about Social Care.

Its hard both physically and emotionally fighting but the feeling of injustice and love will carry you through it all. Good luck and hugs.

Well, librarylady that was really helpful!

Sorry - OP is taking what is presumably a form letter far too personally. Our loved ones are our loved ones and their well-being is paramount to us. They don't matter to anyone else, sorry. Your LA could soften the overall tone of the letter but they will still be asking for the money.

You are all so quick to heap calumny on the shoulders of a LGO yet are quite content to run to your MP happily overlooking the very real possibility that they were instrumental in introducing the system which has led to your difficulties. If they help you get your own way, that is all you care about.

As for the person who posted that she had been a councillor and had sorted things out for people when they complained - yes, I bet you did and quite regardless of whether the complainant was right or not. It showed how compassionate you were AND how important, whipping your minions into their place even if they were following YOUR instructions in the first place.

Luckygirl I would not presume to offer advice as I haven’t had to deal with such circumstances and you have clearly been down every road I just wanted to say how sorry I am that you received that heartless letter. Having received thoughtless/cruel letters from other authorities in my time I know how they can bring one up short. I hope your appeal is successful.