Carers I interview

[entity]

Postcode lottery-
It seems respite care fees vary widely across different areas.
http://www.saga.co.uk/money-and-finance ... ttery.aspx

My mother refused to go into respite care, before her dementia deteriorated and I had to
respect her wishes as it was her basic human right to be cared in the place of her choosing and that was at home.
If she had gone into respite care the 'totality of her needs' meant she required EMI specialist nursing care, and these homes are more expensive than residential care.




Tuesday 19 April 2011
Care homes guilty of sub-standard practices

Undercover Which? investigation shows some care homes in the UK have problems delivering adequate food and health and safety to their residents
http://www.guardian.co.uk/money/2011/ap ... -practices

[sue31didit]

plain and simple, I cannot afford respite care and no one can give it me when needed, beds are booked up 3 months in advance.......so I have been told by that time, my husband is over the worse of his mental health relapse and doesnt want to go leaving me flat on the floor

[Scally]

I am paying £5 an hour for a peer-support worker/befriender, which is above the minimum wage for a 17 year old. But that is on top of a lot of free services, such as attending a local college three days a week and a supported work experience placement, and anyway it is paid for by direct payments as my son has no capital of his own.

We mostly ask family and friends to help for longer holiday breaks or just go together as a family. My son also gets free travel + free companion bus pass, free companion entry to cinema, and various discounts on his Young Scot card. All in all I don't feel we are especially hard done by.

My father in law, who had multiple physical disabilities and dementia, received free respite in a local authority day centre and four weeks free residential respite each year in an ex-servicemens charity home paid for by the Veterans Agency. When he did eventually enter the same veterans nursing home for long-term care, his State benefits were more than adequate to pay the fees. And the catering and care was absolutely excellent - more than adequate, like a good hotel. But to be fair it wasnt his choice: it was ours. At the end of the day, the kids needs come first and if it's your home and if normal family life is becoming unsustainable, sometimes tough decisions have to be taken.

So, its a bit of a lottery out there, from what we are seeing here. And that's wrong and needs to be addressed at UK level. Take care how you vote.

[Guest]

The figures entity has provided are the average costs for each region and take into account the most expensive and the cheapest residential care, residential care costs can vary widely in a small area and cost does not always reflect quality.

[Stacey]

Parsifal,

"I think that it is probably true of the members of this board that majority are not working and caring, but the 2001 Census paints a different picture:

2.5 million people in England and Wales combine unpaid
caring for a partner, relative or friend who is ill, frail or has a disability
with paid work. 1.5 million carers work full-time, and of those,
140,000 care for 50+ hours per week.

Dare I say that I don't trust the Census? The statistics are only as reliable as the people completing the survey and the questions asked, which IMO means that other than there are thousands of "hidden" carers out there the figures themselves are rubbish.

Being forced to work and care at the same time in many cases is I'm sure the result of lack of choice as well, not soley as a result of lack of awareness about benefits.

[Guest]

I think that the majority of people answer the questions as accurately as possible but I acknowledge that there will an unknown number of carers who do not recognise themselves as carers and whilst the Census, by asking if anyone in the household cares for anyone for a given number of hours rather than if they are a carer, will reduce the number missed, there will be other carers who, for a variety of reasons, do not recognise what they do as "care". The Census is the most accurate count of the number of carers, the number of hours which they devote to caring and their employment status we have and as it covers all households I think that it would be fair to see it as representative of the overall figures as well as having an acceptably low margin of error but then I am not a statistician and perhaps any statisticians among us would like to correct me ?

[Stacey]

Parsifal,

It's really not a question of statistics per se, the size of the census alone will give it a very low statistical margin of error. It's more to do with how reliable the answers are to each question and how the results are interpreted and applied. I've copied the question about caring from the 2011 census below, which covers a very broad spectrum of caring.

2011 Census Question: Do you look after, or give any help or support to family members,
friends, neighbours or others because of either:
- long-term physical or mental ill-health / disability?
- problems related to old age?
• No
• Yes, 1-19 hours a week
• Yes, 20-49 hours a week
• Yes, 50 or more hours a week

So, if I regularly did a bit of grocery shopping and ran a few errands for my elderly, frail neighbor, I could accurately answer the census question positively. I'd probably check the box that said I spend 1 - 19 hours a week. Is that caring? Yes, but I suspect not what anyone on this site would classify as being a carer. So, for the moment assuming this year's Census will be similiar to the last, because I help my neighbor I would count as one of the 2.5 million of unpaid carers. If I had a full time job I would count as one of the 1.5 million carers who work full time. That's why IMO the figures are rubbish when it comes to really understanding the true number of unpaid carers in the U.K. Are they the best we have, maybe ... but caution needs to be taken in terms of how they are applied. When it comes to government using the Census to target funds for unpaid carers it's as bad to have figures that are overinflated as it is to have figures that fall far short. I can just see the present government claiming that with so many millions of unpaid carers we're all a part of the "BIG Society" volunteer force and consequently the budget targeted for CA has been cut.

[cotula]

Stacey, you have obviously thought about this a bit, so - how do you believe the relevant bodies should go about discovering how many carers there are in the UK, and the proportions of that number in (say) the three categories used in the 2011 Census?

[Stacey]

Ideally the government would go back to anyone who checked they care for someone and ask more detailed questions. We'd still miss people who care that didn't check any of the appropriate boxes, of course, but it would be better than relying solely on that one rather broad and vague question.

[charles47]

The problem is that the census is a scattergun. It has to be: there are something like 26 million forms to be completed, returned and then examined. The question needs to be relatively vague to ensure that it picks up as many carers as possible: there are different levels of caring and the (very arbitrary) number of hours of caring benchmarks are there to provide a certain sense of scale. If I remember correctly, about half of all carers put themselves in the 1-19 hours bracket. Some of those were in work, but a significant proportion of carers providing over 50 hours of care are also in work.

Earlier estimates based on partial population surveys suggested that there were approximately half the number of carers providing over 50 hours of care than responded that way in the census. Yet the majority of carers I've met over the years tend to underestimate what they do, and for how long.