5.8 Million Carers - And They Still Need a Break

12/12/2012 17:17 GMT | Updated 11/02/2013 10:12 GMT

For the last three years, Carers Trust has been trying to keep track of the £400 million over four years that was given by the Coalition Government to support carers in England. Carers are a good deal taxpayer-wise. They save the state billions every year in care costs that would otherwise need to be met.

On the day we've found out that the number of people in the census who say they look after a friend or family member has increased from 5.2 million in England and Wales in 2001 to 5.8 million in 2011, we've published a report - Carers breaks on the brink? - looking at what's been done with this cash. Caring should matter to all of us. One in 10 of us is a carer. Carers often have to give up work to care, or end up with health problems of their own. If carers reach the point of exhaustion and being unable to cope, this helps no-one.

That's why this money was so badly needed. The main thing carers say they need is a break - not anything dramatic, often just a few hours off to recharge batteries. A short break or small amount of support can make the difference between being able to carry on and not.

Over the last three years, we have repeatedly expressed concerns that this money is often simply not getting through to carers at the front line. Localism means that decisions are rightly made by local agencies, hopefully reflecting the needs of local people. "Hold the PCTs to account," we were told, "because that's how local democracy should work."

When the NHS Operating Framework for 2012-13 was published, this laid out clear guidelines that Primary Care Trusts should publish plans and budgets, amongst other things, for how they intended to support carers. It wasn't difficult to comply with, although admittedly definitions of carers breaks were unclear. But then all that a PCT needed to do was define this for themselves, then say how much of this they were notionally supporting. But still, our survey of 50 PCTs found that most didn't meet all of these requirements, and 14 out of 50 hadn't met any at all. Hardly a ringing endorsement for commitment to local accountability.

This doesn't mean all of those were not providing any support for carers at all - it means that we can't properly find out about it. Local accountability depends on being able to get the information to challenge decision makers. There is also some question about the information published in some areas. Some say they're spending a certain amount, but the local carers say they have no idea how the PCT has come up with that figure . But at least then there's a place for the discussion to start .

This is the last year of the NHS Operating Framework which provided these reporting structures to work within. From 2013 onwards, other than the limited elements which are in the new mandate for the NHS Commissioning Board, we don't know whether there will be any specification at all on what new Clinical Commissioning Groups should be doing to support carers. If local commissioners decide it's not important, then the hard won funding for carer support could all disappear.

It's a real worry. Carers have fought too hard to raise their issues up the agenda to lose it all now.