Talking Sense - Volume 45, No 1, Spring 1999
Nearly two million carers – over a quarter of Britain’s army of carers – have never had a break. And, although it is now three years since the introduction of the Carers (Recognition and Services) Act, over two-thirds of carers do not know what respite services they are entitled to. These startling findings come from a recent survey of carers* carried out by the Winged Fellowship Trust, a charity which provides respite for carers and holidays for people with severe disabilities. Hilary Todd attended the launch of the survey for Talking Sense.
‘Caring is …24 hours a day, seven days a week, labour and isolation. When things are going well, that’s the time to help – not when we break down and everything goes wrong. At times I want to run away and leave the lot behind, but duty and common sense make me stay.’ Many carers will recognise the sheer hard work and frustration expressed here by a Lancashire woman. She was one of 200 people nationwide who responded to the Trust’s survey which was published last December to coincide with Respite Care Awareness Week.
The carers who responded to the survey were a wide-ranging group of ordinary people caring for their husbands/wives, children or other relatives. They represented every age group, from teenage carers to people in their 80s looking after equally elderly partners. Those they were caring for had illnesses and disabilities ranging from strokes and heart disease to dementia, learning disabilities and sensory impairments.
Taking a toll on carers
Despite this wide range of carers and cared for, many of the issues facing them were very similar. Many carers felt they were left to get on with the job alone. Only 32 per cent of carers were receiving help from social services, and many of them felt it was inadequate. As one Essex respondent put it, ‘I feel that we have enough problems coping with day-to-day things and I don’t feel that I should have to fight for care which someone would have to provide if I got to the point when I couldn’t cope any longer’. Another carer from the Midlands felt that her local authority ‘supplies very inadequate respite care for children. Respite care should not be for the select few. People who request respite are usually at crisis point themselves. People in authority do not realise that often the disabled person isn’t the only member who needs attention; there are often other children in the family,’ she wrote.
Only a minority of carers taking part in the survey - 32 per cent - said they had had a clear explanation of the respite care to which they were entitled. ‘Information about respite care has not been explicit. We have had to learn about it over the last three and a half years,’ commented one carer. Another pointed out that access to information is not easy for carers anyway; ‘Full-time carers are not in a position to go out and seek information other than by phone or letter, neither of which is as effective as personal, direct contact.’
But the most sobering aspect of the report is the length of time many carers had worked without a break from their task. A staggering 28 per cent of those surveyed had never had a break of any kind. ‘I have not had a holiday or a day off for eight years,’ said one respondent who added, sadly, ‘I have asked for respite care and received no reply.’ Another carer reported that she could not remember the last time she had had a complete break: ‘I wish that funding was available for us to go on a family holiday’. Some carers put their own health at risk because of the ceaseless nature of the task. ‘Only after I became ill did anyone realise that I had been looking after my husband for ten years without a single break away from him,’ wrote one carer.
Two cheers for respite services
When respite care is offered, it is not always what carers need. Few carers are treated generously, with two thirds of them having had a week’s break or less. Fewer than half of those surveyed were offered funding to meet the costs of respite care. Means testing was common and many carers also had to provide medical references. ‘I work hard to keep us off benefits,’ one carer wrote, ‘so we are then penalised when he needs nursing home care.’ And as many as one in eight of those who had had a break relied on another relative to take over the role of carer.
Most people who had received respite care nevertheless spoke positively about the actual placement. Others, though, were concerned about the service. ‘If we are going to receive a service it should be a place that we would like to stay in ourselves – not an institution,’ said a Kent woman. Another felt much the same; ‘I think my son would like some control over where and who he spends his time with. It would be nice if he was asked his opinion and notice was taken of what he, himself, wants.’
Pat Wallace, Chief Executive of the Winged Fellowship Trust, said there was much anecdotal evidence that respite care for youngsters ‘switches off’ when they reach 18. Conversely, care often ‘switches on’ at the age of 65. He was also concerned about disabled people who are responsible for their own care; often left out of the equation, they need a break from caring for themselves.
The Government’s new initiative on carers was welcomed by the Trust but Pat Wallace was concerned that the sums allocated for respite care were small in comparison with the need. He feels that much depends on how local authorities interpret the new spirit of the strategy. The Winged Fellowship Trust is doing its bit to promote awareness of entitlements to respite services by distributing a free guide which explains what carers should expect*.
Improvements cannot come too soon for many carers. As one woman put it, ‘In taking care of someone you put your own life on hold’.
The findings at a glance
- 200 carers took part in the study, from all parts of Britain
- the carers ranged in age from teenagers to people aged 80+
- 15 per cent of those cared for were 19 or under, while 41 per cent were 70 or over
- two thirds of carers had no help from social services
- two thirds were unaware of their entitlement to respite services
- a third of carers had not had a break within the last two years
- two thirds of carers getting some kind of respite had a break of a week or less
- 83 per cent of those offered respite care thought it was adequate.
* ‘Respite care: the carers speak…’ and ‘A guide to respite care’ are published by the Winged Fellowship Trust, tel. +44 (0) 20 7833 2594.
