Updating the 1999 carers’ strategy

Care services minister Ivan Lewis has promised a consultation to update the 1999 strategy for carers. Mark Hunter considers the priority areas for action

It is more than eight years since the launch of a national strategy for carers promised great things for the six million people in the UK who care for a sick, disabled or elderly relative.

With the personal backing of prime minister Tony Blair, the strategy pledged to deliver better information, greater support and new rights for carers to have their own health needs met. It led directly to the Carers and Disabled Children Act 2000 and to the Carers (Equal Opportunities) Act 2004. Four beacon councils were chosen to share best practice among local authorities.

So, eight years on, surely carers’ needs are now being met?

Not quite. Although no-one would deny that carers now receive far more support than they did in 1999, there is still a long way to go before the ideals of Caring about Carers are truly realised.(1)

Official figures published earlier this year show that fewer than 400,000 of England’s estimated five million carers were offered an assessment or review for services in 2005-6. The CSCI has described support for carers as “patchy and limited”, and a report by charity Carers UK recently claimed that one-third of carers are missing out on benefits and pensions because they are not given information about their entitlements.

To try to address these issues, care services minister Ivan Lewis announced a multi-million pound package of support for carers at the end of February, including a national helpline and more emergency respite care.

Significantly, he also promised an England-wide consultation with carers and voluntary organisations with the aim of updating the 1999 strategy.

Though few details are yet known about the consultation’s remit or process – the first meeting of a steering group to decide its parameters took place in March – the concept of revisiting the carers’ strategy has been welcomed by carers’ organisations.

“The 1999 strategy was important at the time because it put carers on the map,” says Shan Nicholas, chief executive of the Princess Royal Trust for Carers. “But the world has moved on since then and it is time to look at these issues again.”

For Nicholas, a key challenge of any new strategy will be to help ensure that initiatives introduced by central government are properly enacted at local level. “Things like the carers’ grant, for instance. Is it really being spent on carers? There needs to be more transparency at local level.”

According to a recent survey by Carers UK, the change that carers themselves would most like to see is greater recognition of their role by health and social care professionals. Better services for the people they care for and help in maintaining their own health and well-being are listed as joint second priorities, while income in retirement ranks third.

Kate Groucutt, policy and public affairs officer at Carers UK, says: “Carers often feel sidelined by the health and social care professions when really they should be seen as equal partners. There needs to be a change in attitudes and culture.”

Groucutt says she is “reasonably confident” that the consultation will take on board the views of carers’ organisations and carers themselves. Once details of the consultation are known, social workers will have a role to play in informing carers they work with about it and how to feed into it, as well as responding themselves.

“We need to make sure that the consultation involves carers of all shapes and sizes – those who are working, those who are not, younger and older carers,” she says. “Our role is to bring the evidence of the barriers that carers face. We certainly expect to be involved constructively with the consultation and we are reasonably optimistic that our voice will be heard.”

Groucutt lists the key areas for the consultation to focus on as making it easier for carers to continue working if they want to, and persuading central government to take a more holistic approach towards carers.

“We will be looking for a more joined-up approach from government departments, such as the Department of Health, Department of Trade and Industry and the Treasury. For instance, in the case of carers’ benefits, there needs to be more synergy so that developments, such as the increase in the minimum wage – which was obviously of benefit to a lot of carers – don’t end up giving with one hand and taking away with the other because they tip you over the earnings limit for the carers’ allowance.”

Groucutt also hopes that the consultation will extend beyond the immediate needs of carers into a broader debate about the long-term strategy for caring in the UK.

She says: “It would be interesting to see greater debate among the general public about the balance between the state, the individual and the family in providing care. These are the sorts of decisions that most of us will have to think about at some stage in our lives. It is estimated that by 2037 there will be three million more carers in the country. We need to think about how that is going to be managed because, at the moment, it’s not sustainable.”

Tim Anfilogoff, strategic policy manager at Hertfordshire Council, one of the beacon councils on supporting carers, is alarmed that only about 20 per cent of local authorities have a local carers’ strategy. He hopes the consultation will help local authorities escape the current use of subjective standards and indicators and start to help carers in areas where they need support.

He says: “Although I doubt that we will find a lot of new stuff that we don’t already know, it’s important that there will be a new version of the 1999 strategy because there are a number of things in that strategy that have not quite been delivered.

“One problem is that there is a pressure on local authorities to count the wrong things. Their strategy for carers is judged by arbitrary measures that don’t always show the real picture – indicators such as how many carers have had an assessment, for instance. There’s a need to get back to basics and really look at what being a carer is actually about.”

‘Social workers should see us as allies’
For the past 18 years, Jill Pay has been caring for her daughter Rowan who was born with brain damage due to asphyxia. Rowan is severely disabled, cannot eat for herself and has epilepsy.

“She has to have everything done for her,” says Pay. “When she was born I had two other children under five so it was a very stressful time. Being a carer leads to an erosion of the individual. For instance, when Rowan started school I had to choose whether to use the free time to retrain or to have a social life. I couldn’t do both.

“When Rowan was younger, the services that were available for carers weren’t really appropriate, so I joined with some other parents and that led to Camden setting up a dedicated disabled children’s team.”

Foremost in Pay’s campaign is that carers receive more recognition from professionals. For the past 18 months, she has been running training days to increase awareness among social workers in Camden.

She says: “One of the biggest barriers carers face is the attitude of professionals. Social workers often have no understanding of what it’s like to be the parent of a disabled child. And they don’t seem to have much awareness of support networks in the voluntary sector.

“There’s a tendency to see carers as manipulative or difficult, or they are afraid that the carer will become the client. That shouldn’t be the case. Social workers should see the carer as their ally.”

Further information
(1) Caring about Carers: A National Strategy for Carers, Department of Health, 1999

This weeks other feature articles
Response to the GSCC survey by James Blewitt 

The article appeared in the 5 April issue under the headline “A new deal for carers”