Carers UK is calling for a social contract for care following research it launched last month. Evidence from reports – the Carers, Employment and Services series – shows the need for a radical shake-up to the way we support carers.
The contract must involve individuals and families, local communities, employers, voluntary organisations, councils and the government. All stakeholders must have clear roles and responsibilities, agree a core set of values and be committed to supporting carers. There would also need to be a set of legal, regulatory and fiscal frameworks supporting carers.
The main forces that are driving the rising demand for care are longer lives, better survival rates and more care outside hospital. Many carers want to continue in work, 40% of carers who are not in employment would prefer to have a paid job, and many of those who have given up work to care wish they had not needed to do so.
A major new study from the University of Leeds explored the situation and experiences of carers of working age – a group representing 75% of all carers in Britain. Two-thirds of these carers combine their unpaid caring role with a paid job, and 43% of them are men – facts not widely known, even among professionals. The study has examined the situation of carers nationwide, with additional investigations in 10 councils in England, Scotland and Wales.
Commissioned by Carers UK to strengthen the evidence to inform future public policy and service development, the findings are based mainly on: 1,909 responses to a national survey 134 face-to-face interviews with carers interviews with professionals with responsibility for carer support and analysis of the 2001 Census.
The detailed evidence presented to government is very important in driving home that, in return for the massive contribution carers make to the social economy and to the well-being, independence and security of those they care for, they receive penalties rather than rewards.
First, carers pay a significant health penalty for caring – there is now evidence that the longer you provide care, and the more of it you give, the more likely you are to be in poor health yourself.
Second, the research shows financial penalties hit new carers quickly, which is related to giving up work or reducing working hours, as well as to the costs of looking after someone who is seriously ill or disabled, or travelling to visit and support someone who has become frail. It is a problem that worsens as caring continues, and many carers will still suffer a financial penalty when they are drawing their pension, too.
Third, carers become socially excluded. Those we interviewed spoke frequently of their isolation and loneliness and the difficulty in continuing with the ordinary life they led before – jobs, education, leisure, community participation. All were difficult to sustain as caring continued and most worried about this, feeling it damaged their family and personal life as well as preventing them from contributing their other skills and talents to society.
Our study has also uncovered other uncomfortable facts. Although most carers in our survey believed they were well supported by their families, and well over half believed their employers were trying to help too – almost three-quarters of those combining work and care said the local services available to support them and those they cared for were inadequate. This complaint was even voiced in some localities where excellent new services supporting carers had recently been developed.
A few had been through a carers’ assessment or similar process, and a handful told us that new approaches to service provision – flexibility in direct payments, high quality advice and support in returning to work, access to one-off payments, opportunities for breaks – had transformed their lives. But latest figures (2005-6) show local authorities in England carrying out a mere 169,000 carers’ assessments with carers of working age – out of 3.64 million carers of this age.
In Britain, 1.8 million men are carers of working age with almost three-quarters having paid jobs with 54% working full-time. Many might be surprised to know there are more men than women working full-time while also caring for 50 hours a week – 118,000 men and 67,000 women. When they become carers, men are almost as likely as women to care intensively (50 hours a week). Men most frequently care for a partner or spouse, often someone with a long-term illness or disability or someone who is terminally ill. Women are more likely to care for older relatives and for sick or disabled children.
Carers of sick or disabled children are urgently in need of better support. Their responsibilities often change as their child grows older, and while the demands of parenting lessen as a non-disabled or healthy child grows, for parent-carers the opposite is true. Many feel unsupported in realising their desire to return to work or training, and they often become exhausted and isolated as a result of the care they give. There is growing recognition of the need for out-of-school support for their children, but the reality is that in most localities provision is limited and most families feel they need far better support, more breaks and a much wider range of services.
Our research also shows that Pakistani and Bangladeshi men and women of working age are much more likely to be carers than others, and that this situation mainly reflects the greater socio-economic deprivation and poorer health experienced in these groups.
In our study the 400 carers who had given up work to care were considerably more likely than other carers to be struggling financially and to be in poor health – and 60% of them identified at least one service they needed but were not receiving. They were the most likely to say services were not flexible, not suitable and too expensive, and although many had been caring for years, a third still did not know what services were available.
Carers have secured some recognition and new rights in the past 10 years, but the measures taken have not been sufficient to transform most carers’ lives. Services are not meeting carers’ needs, with only about a quarter of working carers saying they have adequate local services to enable them to work. This is why we need a new social contract for care. We have made recommendations for tackling the three penalties carers face – the health, financial and social exclusion penalties (see box). Our study also argues that responsibility for supporting carers must extend across the whole social fabric – employers, providers of local services in housing, skills and training, education, leisure, transport and employment advice must all acknowledge and respond too. For the caring agenda goes far beyond the remit of social and health care provision, central though those services must continue to be.
Sue Yeandle is professor of sociology, University of Leeds and with Lisa Buckner co-author of the report Carers, Employment and Services: Time for a new social contract? The report, and other reports in the CES series
This article appeared in the 6 December issue under the headline “A social contract?”