Page last updated at 08:18 GMT, Friday, 7 August 2009 09:18 UK

Carers funds 'lost in the system'

By Bob Walker
BBC Radio 5 Live reporter

Sue and Brian Dodd
The Dodds care for Sue's elderly mother

Charities say millions of pounds set aside to provide desperately-needed short term breaks for carers is not getting through to those who need it most.

They say many health trusts do not even know whether they have received the money, while others are spending it on other priorities.

I visited one couple who are desperate for more help.

This should be a golden age for Sue Dodd and her husband Brian.

After a lifetime of hard work, they are entitled to think about enjoying their retirement.

But what may be routine for many pensioners is only a distant dream for them.

Weekends away, quality time with grandchildren and perhaps the occasional cruise with friends is beyond their reach.

Sue and Brian are carers. Part of that army of 5.8 million people across the UK who spend some - or even most - of their time looking after ill or vulnerable relatives.

And in their case it is clearly taking its toll.

Advanced dementia

Meeting them in their neat and tidy home in Chilwell, Nottinghamshire, is a humbling experience.

You go to bed at night and sometimes you don't want to wake up in the morning because you know what you've got to face the next day
Sue Dodd

Sue's mother has advanced dementia and is in care.

Her father has terminal cancer and the couple spend most of their time looking after him.

It is something they do without complaining because they love their parents.

Brian says they always made him feel like a son rather than son-in-law.

And they do it because they feel it's the right thing to do.

But that does not mean they do not sometimes long for what Sue describes as "closure".

She says: "You don't have your own life, you lose your identity.

"You go to bed at night and sometimes you don't want to wake up in the morning because you know what you've got to face the next day.

"To be a carer, it's 24 hours a day. You're isolated. You lose all your friends and it's like you're going into a black hole and you can't get out of it. That's caring."

Money to help

It is to help people like Sue and Brian that the government launched its National Carers Strategy last year with an additional £150m available over two years to provide short-term breaks away from such a demanding job.

But national charities that support carers say the money, channelled through local primary care trusts (PCTs), is not getting through.

The problem, they say, is that the allocations are not "ring fenced" and the government says it is up to PCTs to decide how to spend the money.

Some trusts do not even know whether or not they have received any of this extra cash.

The charities - Carers UK, Crossroads and the Princess Royal Trust - believe the allocations have been lost within overall budgets.

So far 35 trusts contacted by carers' groups say they will not be spending any new money this year and 26 say they are still considering what to do, even though their budgets for this year have been set.

The three charities have written to NHS chief executive David Nicholson urging him to remind PCTs of their responsibilities - and the fact that the government has identified help for carers as a high priority.

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