Interview 46  

Interview 46

Age at Interview: 75
Sex: Male
Age at Diagnosis: 67
Background: Husband caring for his wife of 54 years. They have one son. Carer is retired. Patient had been a seaside landlady as well as a housewife.

Brief outline:When brain scan was found to be normal was admitted for a week's assessment. Diagnosed as having Pick's disease (fronto-temporal dementia) Cared for at home, with day care and regular residential respite, finally in residential care.


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Describes the chaotic and difficult process of claiming the funding to which his wife was entitled.

 



I suppose one of the things that's least helpful and irritating is the fact that I have to pay some of the costs for my wife in the residential home. I have to pay this to the County Council and I have, I had initially to fill forms in about income and capital which is fair enough. The County Council forms were quite good and reasonably straightforward but then they assessed her as receiving income support, which she didn't receive. So I questioned this and they said 'Ah but she's entitled to income support if she's in this home. So we're assessing you as if she's receiving it so it's up to you to claim it.'

And this is the least helpful thing, is claiming the income support, the rigmarole that went with it. The size of the forms, I managed to get through them but I'm sure some people would be very confused because some pages were for her income and her capital and some pages included mine and others didn't and the whole thing I found a very confusing form.

And then they assessed it wrongly and by reading carefully all the information that came with it I found that she was entitled to more, which was the amount the County Council were assessing her as receiving, than they'd given me because they had, they'd got the wrong capital figures. It's a different capital figure apparently if you're in a residential home owned by a Local Authority. I can't remember the details but I stressed this point, pointed out the paragraph in the booklet and they said 'Oh yes, yes, we'll send you another assessment.' Three times the same assessment came back. This is the least helpful business.

So eventually I got on to someone, I forget what their title was but a real complaints person, told them the whole story, they agreed with me and said 'Leave it to me, I'll sort it out for you,' and about an hour later she rang back and said 'It will be sorted this time and you'll get the proper,' and I did. But again it's push and question, push, don't accept anybody as, as being God, push and question. And that's been very unhelpful, claiming this. And of course the silly thing about it is it's all coming out of the public purse anyway. So why bother to have to go through the rigmarole of claiming it, that huge form or booklet of forms when it's being paid to a Local Authority anyway who already get grants from the State.

So it's, it's a load of unnecessary bureaucracy which I find least helpful. Bureaucracy we've got to have but unnecessary bureaucracy we don't have to have. And I feel sure that could all have been worked out by, between the County Council's assessment people and the, getting more money from the State, either via income support or whatever, however they want to get it in grants, or whatever they get it in. Rather than give everybody all this hassle, getting wrong assessments back and all the bureaucrats who are dealing with it must cost more money than the amount of money they give out! In some cases I'm sure. So that I did find very unhelpful.

Jonathan Miller - Dementia
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