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.

Malcolm feels it is polite to give some general feedback on the study and that a short summary every year would be well-received.

Age at interview 75

Gender Male

Age at diagnosis 48

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Yeah if you’re volunteering yourself and your information for a study, you know, it’s only, it’s only sort of, well it’s nice to be able to be informed about it. it’s polite, isn’t it, to give some feedback other than just results on your own physical test.

Just little updates not in-depth just a few lines, a few pages of report maybe or a page of a report, an update, a few bullet points. it’s quite easy to produce a report in an easier understanding format that anybody can understand.

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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.

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.

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

Margaret Ann has been taking part in a birth cohort study for decades. She is happy to keep contributing to the study.

Age at interview 65

Gender Female

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Now what I would like is to the motivation from you; why do you keep participating in the study after thirty years or so?

Oh, it’s a long, long time. As I say, I think our lifestyle in the 50s was, you just can’t compare it to now because my life from the 50s is totally different and the changes over the years, my grandchildren would never understand. So, if someone, somewhere down the line thinks this is interesting, well I’m quite happy to answer the questions.

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It took Leigh some time to get used to her foster son’s new name, but now it is hard for her to think of him in any other way.

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Maybe eight to ten weeks I really struggled, to the point where I said, right, that’s it, nobody’s got a name. Everybody is just kids. Cause it was easier [laughs]. But no, I mean, it now I do have conversations with other people who when I refer back to how, back to my child as his birth gender, it takes me a few seconds to remember, you know, I have to access that information from deep, deep, deep in my brain, because it’s not something that I use every day now. You know, he’s just who he is. He’s just a happy, healthy, moody teenager [laughs].

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