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Paying for social care (older people)

Challenging decisions about care and funding

This page covers:
• How people gathered information to help their appeals
• Reasons why people appealed
• Organisations that can help

The care system can be baffling. Many people find themselves in situations they have never experienced or even thought about before. People told us that although they started out knowing nothing about care and funding, they gradually became experts. As people learnt more, they became more confident to challenge some of the decisions made about their care and funding or that of a relative. But even where arranging and paying for care is still all very new, people can challenge a decision about the help, advice or funding they have asked for if they think it is not correct. Most people didn’t challenge decisions as things worked out fine, but here are some examples from people who did.

Appealing a decision

When challenging a decision, people said it was important to gather as much information as possible and that a good place to check things out is online. Several people said that government and NHS websites are clear and accessible. They also told us that Citizen’s Advice can help with information about benefits or point people towards organisations where specialist help is available.

 

Lynne says it’s important to check the information you get if you are not happy with decisions.

Lynne says it’s important to check the information you get if you are not happy with decisions.

Age at interview: 65
Sex: Female
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But I just, you’ve just got to arm yourself, you’ve just got to look everywhere for information, speak to people; and don’t take, don’t always take what Social Services and Mental Health say. They don’t always know what they’re talking about when it comes to care homes and fees and the rules, the legislation; you’ve really got to know what you’re up against. It’s a minefield [laughs] and I don’t know how to not make it a minefield, I really don’t.

 

Peter appealed the decision when he was refused a disabled parking permit for his wife.

Peter appealed the decision when he was refused a disabled parking permit for his wife.

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She started to get difficulty getting into the car, she couldn’t understand how to get into the car, and for a while I would open the car door and back her to the seat and then virtually throw her [laughs] onto the seat, move her legs round, sit back, belt on and because of that I needed a lot of room so I applied for a parking licence disabled parking and I got refused on the basis of Alzheimer’s wasn’t a disease of the disabled.

So I appealed and on appeal I got it cleared, so we then…

So they didn’t do a, because I mean a diagnosis doesn’t tell you what people’s abilities are really does it?

No, no.

So did they not meet Myra and do that?

Well not until I appealed. I applied and I just answered the questions on paper [laughter] and they, they, I then appealed and they had called us to a meeting and I went through and demonstrated the problems [laughs] and they, obviously they saw it then. Mostly it was she was still then walking OK, it’s just that she couldn’t manage things.

Backdating claims for allowances

Some people told us that they did not find out about eligibility for allowances and discounts for quite some time after they or their relative started paying for care (more about allowances in Benefits and other help with funding care). This meant they had to make a backdated claim. Sometimes this was straightforward but Jacky was turned down a number of times until she eventually succeeded.

 

Janine didn’t find out for years that her mum could save on Council Tax.

Janine didn’t find out for years that her mum could save on Council Tax.

Age at interview: 63
Sex: Female
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Well yes and I didn’t find out about this for years later because the attendance allowance once she’d got that that was supposed to go on to care, for care which is a good sort of trigger, because what a lot of old people say is, I can’t afford care, I don’t need care, I can’t afford it, and that’s what the social worker said to her, “Well that’s why you’ve got attendance allowance, to pay for your care.” And I didn’t know about the council tax, nobody told me anywhere, and it was about three or four years later [laughs] I found out. I says I was speak, it must have been the social worker and she says, “Well have you been paying council tax?” I said, “Yes.” So because you got attendance allowance it, you can just say to the council and they backdated it, to be fair to them, so they backdated it for all those years. They needed to know when she was diagnosed with the Lewy Bodies and they backdated it; so she didn’t pay any council tax at all that’s from when she was diagnosed. But nobody tells you that, and I says, “Why didn’t anybody tell me?” [Laughs].

 

Jacky talks about not giving up. She went to tribunal over her claim for Carer’s Credit.

Jacky talks about not giving up. She went to tribunal over her claim for Carer’s Credit.

Age at interview: 65
Sex: Female
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But then she said that you can, if you can show that you are caring for twenty hours a week, which I was, then you can apply and they will give you the, and it’s just self-certified because how do you prove it, self-certify, and they will give you your National Insurance contributions for that tax year. By this stage, of course, both my parents were in residential care so I was no longer in that situation, but unlike the council tax refund where you can go back quite a number of years, this you could only go back a limited amount of time; I think it was probably just perhaps the previous tax year. But by the time I found out, quite by chance, I was already out of time. So I applied anyway saying that, you know, I’d been told about Carer’s Allowance but no-one had ever told me about this and I’d only just found out about it, and so I wanted to apply for this I think it was only, I because I’d bought a year anyway I think it was probably only like a year and a half, but you think that every little helps don’t you? So they turned it down because I was out of; it just came back very quickly, you know, oh you’re out of time limit, turned it down. So I appealed and gave the grounds for the appeal and again it was turned down on the basis that, oh the information is on our website; but it’s like their websites are so complicated and if you don’t know that anything exists you’re not going to just stumble across it. Now I [laughs] and I think most people would have given up, I nearly gave up at this stage, because it wasn’t a large amount, it was like eighteen months, but because I’m quite determined and I thought you know, I don’t like being beaten by the system. So I appealed to a tribunal and, yes, won on tribunal.

No, because in my information to the tribunal, you know, I put, I’ve had dealings with GPs, with mental health, all the people I listed, I said, and Carer Allowance has been mentioned to me but no-one has ever mentioned Carer Credit; and obviously the tribunal then reasonably decided, well this, this is unreasonable, because it was purely because it was out of time, you know, you know, I, by six months I’d missed the time and it’s not as though it’s a huge amount of money, it’s just national insurance contributions, it’s just; so yes, so I did feel that was a victory [laughs].

Help from local councils and other experts

A few people arranged their care through their local council adult social care department even though they paid for the care themselves. This meant that the adult social care department helped to sort out any problems with the care that was provided. People felt it was really helpful to have the council helping them out.

 

The local council refunded the fees when Sue found the care workers were not working the full hour.

The local council refunded the fees when Sue found the care workers were not working the full hour.

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So I pay [County] County Council, [County] County Council pay them. I really like, I like the fact that they’re that intermediary for me. So I con… at the time I thought it was happening, so, and then we found it definitely was happening, I dealt, I dealt with it and I was quite happy to deal with it directly with the company and generally when I’ve got any concerns they do act upon it so that’s quite good. But I have to say I’d rather not deal with it [laughs] to be honest I would rather, I would rather somebody else deal with it. Now I could have asked [County] County Council to deal with it and I’m sure they would have and I did, I kept a log of what was happening and I sent that to [County] County Council and they didn’t question me at all, they just said, “No, that’s fine.” And reimbursed the payment, which was, which was good, you know, there was no argy-bargy, there was no going to them and back to me, they just like went, “No.” And repaid the amount, which was good.

Many people stressed how important it was to ask for help when things are difficult. Sometimes that help might be given from unexpected places!

 

Jackie and Gary asked for help from their MP when they had trouble claiming Personal Independence Payment.

Jackie and Gary asked for help from their MP when they had trouble claiming Personal Independence Payment.

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Jackie: Well when we were having trouble with the DWP and we were sending them information…

Gary: Oh God.

Jackie: …and they were sort of, they were claiming they didn’t receive it, whatever, he wrote letters for us and but…

Gary: And we went through, we went through a phase where we were sending the information to them but because of one department’s totally separate from a different department, one was saying, well you got the information, the other would say they haven’t, and we ended up having to sit, physically sit in the local Job Centre and do it do emails fax it to one department proving that it got to the other end, because it was getting to the stage where it really was ridiculous. You, in fact you got to that stage in the ridiculous that the MP organised a payment because there was so much going; it took months to sort out, it was absolutely crazy.

Jackie: We got an ex-gratia payment.

Gary: Yeah, yeah.

Jackie: But again, you know…

Gary: It was extreme, it was extreme, yeah.

Jackie: … it’s if you don’t follow it through, if you don’t keep asking then I would say that is the most important thing, just keep asking.

 

Dan explains how to ask for a review, or appeal a decision, after assessment for CHC.

Dan explains how to ask for a review, or appeal a decision, after assessment for CHC.

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If you have been assessed for continuing health care and found to be not eligible so that you don't have a primary health need, there is an appeal process. There's a way of requesting a review of that eligibility decision and that process is in three stages. The first stage is in two parts, so what you would do initially is to contact the clinical commissioning group, the CCG, which made the eligibility decision, within six months of the date on your decision letter and to ask them for a review of the decision. Provide them with as much information as you can as to why you disagree. If you are still unhappy following that local resolution process, you can move to stage two. Stage two is called independent review and that process is overseen and administered by NHS England. If you're still not happy with the decision that's been made at the end of the independent review process, you can then move on to the third stage of appeal, which is to make a formal complaint to the parliamentary and health service Ombudsman.

If you have been screened for continuing healthcare using the checklist, which is the first stage of the assessment process, and that checklist is negative, or in other words, you don't meet the criteria to move forward for a full assessment, the decision can't be appealed but you can request for a review of the checklist decision.

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