Much of the £150m earmarked by the government to help carers never reached them. Where PCTs did pass on funds it has made a crucial difference.
“The problem I have is that my wife needs to be looked after day and night. She’s had multiple sclerosis for 20 years and needs someone with her all the time. I’m up four times in the night to help her get to the toilet so I’m always tired. I also now have diabetes.”
Riza Halil is one of an estimated million carers in the UK who spend more than 50 hours a week caring for a loved one. Without the sitting service provided by Lewisham Council for a few hours a day and help from The Princess Royal Trust for Carers he would not be able to manage.
“I have been on short breaks and then my wife will have a 24-hour carer at home because I don’t want her to go into respite and she doesn’t want that either. This year I’m hoping to get to Scotland,” he says.
Short breaks for those like Halil can be the difference between coping and not coping. It is not known how many of the UK’s six million carers do get a break, which can be anything from a few hours each week – for the lucky ones – to a couple of days off each year.
In June 2008, the government published a national carers strategy and made £150m available to primary care trusts to pay for short breaks, which had been highlighted as a priority by many carers. But while the report had a promising subtitle – “a caring system on your side; a life of your own,” – many carers across the country have yet to experience a system that is on their side.
Research by charities The Princess Royal Carers Trust and Crossroads Care found that £40m of the £50m for 2009-2010 had not been used for its intended purpose, while updated figures show just 26% of the £100m for 2010-2011 will be spent on carers.
Gordon Conochie, policy and parliamentary officer for the charities, says their investigation was sparked by complaints from carers that they could see no evidence of where the cash was going.
“We were getting lots of reports from individual carers and carers organisations that there was chaos at local levels. Those asking what the money would be spent on were being ignored by PCTs,” explains Conochie. He says the carers strategy has not been given sufficient priority by government, contrasting it with the stroke strategy, published a few months earlier in December 2007.
The latter was backed with ring-fenced funds for councils while PCTs’ performance is monitored by the Department of Health via performance indicators. On the back of this, a National Audit Office report, published in February 2010, praised improvements in stroke services, particularly in acute care.
In contrast, none of the carers strategy funding for PCTs was ring-fenced, which may explain why so much has been used instead to plug shortfalls in other services.
Conochie says that while some PCTs have spent what they should have done or more, these have often been trusts where people responsible for spending decisions have had personal experience of caring. He adds that he knows of one PCT chief executive who is herself a carer.
The benefits for the NHS of supporting carers are well-known and include reduced hospital admissions among service users and better health among carers, who are more likely to suffer ill-health than the rest of the population. However, despite this Conochie says they are still “being taken for granted”.
In response to the concerns, the former care services minister, Phil Hope, said in March that PCTs would be held to account for their use of the carers strategy money, with strategic health authorities tasked with monitoring the level of priority trusts give carers.
However, Conochie says he has seen no evidence that this was put into effect before the election.
Carers’ organisations are now waiting for the coalition government to set out its stall on carers, including whether Hope’s pledge will be followed through.
On the positive side, care services minister Paul Burstow is a longstanding champion of carers, and the coalition has pledged to expand access to breaks. However, a Lib Dem proposal to give a week’s break a year to all those providing more than 50 hours of care a week has not made it on to the coalition programme.
With this autumn’s spending review due to decide how a fast diminishing public spending cake will be divided up from 2011 onwards, carers will have to strongly and loudly argue their case for why the billions they save the health and care sectors mean they are deserving of support.
Carers strategy is working in Lewisham
In Lewisham, south London, there are about 19,000 carers, 3,000 of whom receive help from the local authority. The PCT was allocated £300,000 in 2009-10 as part of the carers strategy, all of which was spent on expanding short breaks.
Some cash has been used to fund two staff supporting carers who need breaks. One works in GP surgeries, keeping a register of carers and ensuring they are contacted and assessed for the help on offer.
When the other person is recruited, they will be based in Lewisham Hospital, and their responsibilities will include putting together a care package for the carer, including an assessment of their need for short term breaks.
Although funded by the PCT, Lewisham Council’s carers officer, Laura Jenner, is responsible for managing both posts.
She says the council and PCT have been able to invest in carer services more widely thanks to the extra funding. She says: “The PCT was already funding our carers’ centre and when they got extra money they appointed a carers lead. We’ve been really lucky because I know a lot of local authorities have really struggled to get money from the PCT.”
As well as creating two new posts, the money has been invested in direct payments so carers can choose how to spend money on a short break. Jenner says some people have gone to the theatre and spent a night in a London hotel or gone to a spa, while others have spent cash on what might be seen as more unconventional things, such as a laptop.
Jenner already manages the carers’ break scheme, a council-run project specifically for carers of people with dementia. The 18-month project, funded by cash from the Department of Health, has been running for around nine months and so far provided breaks for 56 carers. Its target is 100.
Jenner says the scheme is targeted at the increasing number of carers of people with dementia because they often do not access the traditional form of break – respite care.
“It’s often not convenient for them. Some people don’t want to go into a respite home. It isn’t always practical either because people with dementia need to be in their own environment. So it can be quite traumatic to take them out of it.” Referrals to the service come via routes including the older people’s team and GP surgeries.
This article is published in the 10 June 2010 edition of Community Care magazine under the headline Carers’ Plight Continues