Furious - letting off steam!

I don't know what to say except that I am just astonished Luckygirl
Who are these people - the word CARE should be removed from their job title.

Oh Luckygirl (a misnomer at present it seems). Do the CHC provide you with what they assess is a basic amount and you have to top up from your own funds? I do hope you get some financial assistance. What a worry. You must be exhausted.
?

Oh gosh. That's just awful. I suppose that your MP and local councillor are too busy right now otherwise a word with one of them might help. I know it's incredibly wearing having to persevere with all this though.

I know just how you feel.
My H had dementia, severe stroke. Unable to stand and then cancer.
I was told not even to apply for funding as I wouldn't get it.
I know very few people who have, even with awful diagnoses.
I do wonder if your choice of home played a part.
In my area the help from SS towards the cost is dependent on the home.
Some are not even considered on the cost element.

The choice of home is only relevant to SSD assessment as it means I have to pay a bigger top-up - the health funding is a set amount and bears no relevance to the cost of the home. The guy on the phone had no right at all to make reference to that.

I know that the home he is in is the right one for him. It is expensive - but then they all are.

I am thinking of going with a no win-no fee legal company to try and get this funding.

I didn't realise that as it was SS help with funding that was relevant to me.
The amount I was paying was all I could have afforded without selling my home as you once said you would contemplate.
It was then pointed out to me that half the proceeds would then go towards care cost and I would have been hard pressed to find something suitable with my half.
It is a cleft stick we are in.

Your question: How ill do you have to be? We ask the same question in the US- And in the US care isn't consistently determined by illness but money- Those without sizable chunks of disposable cash have to fight tooth and nail for adequate care- Some get it, some don't -

Try to continue to look at your circumstance as a loving cause and not a lost cause- And give that legal company a call- Chin up-

Our MP is great and he helped us out when we had an issue with my Mil and the hospital,

Please give your MPa call and request a home visit.

If the MP is after your vote next month, she/he should pull out all the stops to get it.

good luck with your battle

No one has an MP at the moment. Call it’s not astonishing at all - it’s dreadful, awful, wicked but a perfectly predictable outcome from slashing funding to health and social care.

If you aren't eligible for NHS continuing healthcare, you can be referred to your local council who can discuss with you whether you may be eligible for support from them.

Just.Not.Enough.Money

I have no words.
My husband died in the midst of all this, I am glad he never knew.

I just couldn’t physically care for him 24 hours. I had 4 hours respite a week and I was glad of it. I gave him his injections because it was a waste of a nurses valuable time. We had incontinence things delivered, thankfully.
The constant washing and I will say it. The smell.
We found a home that he was reluctant to go to, but he would for me.
In retrospect he would have been ok. I would have been as good as destitute.
Lucky, fight fight while you can.
It’s those who create, shout loudest who are taken notice of.
Much love x
And to everyone else reading this x

You shouldn’t have to fight - at this awful vulnerable time in your lives, these things should be there as rights that we all willingly fund through our taxation. No chance of that in the foreseeable.

Sadly this is how it is in the UK now.
To have any kind of help or benefits you have to fight.
It is a deliberate policy to see who can hang on the longest.
It is disgusting and it is also very political as this is the result of the Govt's policy of making everyone pay for what they need.

I hope you do battle and win OP. You and your DH deserve this help.

Thank you for all the encouragement. I do plan to fight on. He does qualify - I know this from my former profession. He is being turned down because I am not being believed and that is hard to take. Who knows his needs best but I?

suziew I am astonished that he told Luckygirl they should not have chosen such an expensive home.

And, as Lucky also says, her DH does qualify so who are to these people who take it upon themselves to refuse what they know should be allowed and for which there is funding?
Why do they make people jump through hoops then say no?
It is beyond his remit to say anything like that.

I am not astonished.
The system works heavily to grind down anyone needing help.

The media have given the impression that only "scroungers" are asking for help, but we have a welfare state that includes the help and the residential home that Luckygirl's husband needs.
Of course the CHC money bloke will be from a business background not a caring background.
He will only see numbers not people

If only there was a written down criteria, basically in black and white, we would know what is accepted and what isn't .
Of course we all know there will never, ever be enough money for everyone who really needs care to get it free.

The way it is written is open to interpretation and depends on the assessors but it should not cause such agony for those needing it and their families.

Have you tried this organisation, Luckygirl? I presume you will know all about it anyway, but just a thought.
www.beaconchc.co.uk/

Thank you for that link - Beacon were the ones who helped me launch the appeal against the first refusal. I will get back to them.

One of the things the CHGC guy said 3 x on the phone referred to a letter that a hospice doctor had sent to the GP - I have since seen this and it totally glosses over the complexity of his needs. She has only seen him a few times at home and has had no input to his care - she just arrives every 3 months or so and has a chit chat with him - it is very galling that her letter has had such an influence - I am fuming about it.

I have googled the criteria , it is very ambiguous.
Open to many interpretations.
One thing it did say though was that if approved "all care fees would be paid".
Is this so, or just the nursing needs, normally covered by the NHS?
Does the client have to contribute at all?
It also talked about care at home, how would that be covered if the person needs 24 hour care?

Disgusted to read your post, Lucky. How can someone who has only seen your DH briefly and doesn’t know the whole story have such an influence? Does he have a consultant who could make a more objective and thorough case for him? It is beyond me that someone who needs two people to move him and who has all the other problems endured by your DH does not qualify for nursing care. You wonder how sick is sick enough!

Keep on challenging the ruling. Eventually someone must listen. We are all on your side and wish we could be of real support. Maybe write a piece for your local paper?

It’s appalling lucky. You’re right to keep challenging if you can bear to. I’m sorry I can’t help, sending love and a hope for a just outcome.

I am so sorry- this is so hard.

However in Switzerland, it is the same- if you have savings, and if you have a house- then they won't pay until your get down to about £25.000.

My parents paid every penny (franc) until their savings and sale of house were gone. Same for my MIL with Alzheimers in the UK.

Hope you can challenge and succeed hugs