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.

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 3 or 4 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].

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.

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.

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.