Spotlight on: Who cares?

On call twenty four hours a day, seven days a week, carers save the taxpayer billions each year. Keri-Michèle Lodge asks who cares for the carers

"I'm on-call twenty four hours a day, seven days a week, all year round," says Chris Davies. No, Chris Davies is not an overworked doctor. He is one of 5.9 million carers throughout the United Kingdom who provide unpaid care on a regular basis for a disabled, ill, or elderly person. But what does being a carer actually mean? Each carer's situation is different. Some, like Chris, live with the person they care for and provide continuous care. Each day, Chris gives personal care, such as giving drugs and helping the person wash and dress; practical help, such as cooking; and generally keeping an eye on the person. Like Chris, a million UK carers spend more than 50 hours each week caring. Other carers spend a few hours each week helping the person they care for.

Without carers, those cared for would not be able to live independently, and would need expensive input from health and social services. Carers save the UK government £57bn ($100bn; €85bn) a year--this is the same as the total amount spent on health by the UK government in 2001-2.¹

Although caring can be a rewarding and positive experience, the responsibilities can leave carers with little time to spend on themselves. Caring can negatively affect carers' physical, emotional, and psychological health, yet carers often lack the time to see the doctor about their needs. Janet Read, senior health and social studies lecturer at the University of Warwick, says many carers are looking after others while experiencing health problems themselves.

The impact of caring on health was highlighted in a recent survey of carers.² Half of all carers said that they had been physically injured as a result of their responsibilities. This did not surprise Alan Henshaw, who cares for his wife: "I'm lifting and twisting everyday getting her in and out of her wheelchair. I get backache, but I just have to take a painkiller and lie down till it goes," he says.

Sleepless nights

Caring responsibilities also affect carers' psychological and emotional health. Tiredness and lack of sleep are common. Chris Davies has not enjoyed a full night's sleep in more than 20 years because the person he cares for gets up throughout the night. "I'm so exhausted that little things become harder to cope with," he explains. Half of the carers surveyed had been treated for stress related illness since taking on their caring role.² Other carers may experience depression. Melanie Ellis, another carer, said, "I don't know who I am anymore. I'm just her carer, a robot. I feel totally alone." Melanie also feels socially isolated: "People don't want to know. I've lost all my friends."

Their responsibilities may force carers to work part time or give up work altogether. This adds to their social exclusion. It also means carers face considerable financial worries. Carers often experience a loss of income at a time when their expenditure may actually increase. "I keep the heating on all day for her, use the washing machine daily, buy special equipment, and make financial contributions for respite care," says Alan Henshaw. In fact, research suggests that many carers in the United Kingdom are living in relative poverty.³

But doctors can help improve the health and wellbeing of carers. Two thirds of carers recently surveyed said that general practitioners were the NHS employees with the most power to improve their health and wellbeing.⁴ So what can general practitioners do?

Identifying carers is paramount, but the problem is that many carers do not label themselves as such. "I never thought of myself as a 'carer' until my GP [general practitioner] mentioned it to me," said Melanie Ellis. Instead, carers are simply the parent, child, spouse, or friend of the person they care for. In not labelling themselves as carers, they may miss out on support that they are entitled to, including benefits, grants, and a statutory assessment of their own needs.

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First port of call

This is where general practitioners come in. General practitioners are often carers' initial point of contact with health or social services.⁴ As such, they are best placed to identify carers, by asking patients about their caring responsibilities. The UK government wants general practitioners to add a carer code to carers' medical records and to maintain carer registers, but general practitioners have responded slowly.⁵

Once general practitioners identify that a patient is a carer, they can begin to support them and tackle their needs. But what support do carers need? Timely and relevant information is top of the list. Carers need information on the condition of the person cared for and what they can expect to have to deal with now and in the future. They also want information on benefits and sources of support. All too often, carers have to struggle to find this information themselves.

Uma Sharma, senior outreach development worker at Coventry Carers Centre, acknowledges that gathering information on support available for carers may increase general practitioners' workload. She does, however, have a solution: general practitioners can refer carers to local Carers Centres in the UK. These are "one stop shops" which assess each carer's needs. They help carers access benefits and sources of support, providing individually tailored information. A wide range of support is available. They have a translation service and information on benefits; inclusive holidays; young carers support groups; respite; and alcohol abuse support groups.

Uma Sharma suggests giving out contact details for the centres might decrease general practitioners' workloads by reducing the number of inappropriate inquiries made to them. Carers' centres can also provide carers awareness training for professionals and students in health and social services. Carers' associations in other countries are working with general practitioners. The Australian Carers Association is collaborating with the Royal Australian College of General Practitioners to develop education packages for general practitioners giving advice on how to identify carers and where to find information on support for carers.⁶

Information underload

But some carers just cannot get to a surgery to access information. "I don't have time to go to the doctor. I'd like the occasional phone call or home visit," Melanie Ellis said. And Chris Davies is concerned about the length of time he is away from home: "I need to be seen at the exact time I've booked an appointment. I have to get back home as quickly as possible." The Australian Carers Association, however, is tackling this problem. They are running a pilot project in which carers in rural areas are given a computer and internet access, enabling them to access information.⁶ And a pilot study in the United Kingdom is being done to tackle the problems that carers have in attending surgeries. Carers will be sent health questionnaires to allow general practitioners to monitor their health.

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But it is not just up to general practitioners to improve carers' wellbeing; hospital based doctors have a role to play. Some people become carers when a relative or friend is discharged from hospital. Although it is recognised that carers should be consulted in planning discharges, one in three carers recently surveyed said their concerns had not been listened to. Other carers said they had received inadequate information and support. This tallies with Joan Peters' experience: "They said Mum could go to the toilet with some help, but I didn't realise until we got home that she'd had two nurses helping her in hospital. I had to do it single handed. I was unprepared and frightened." Carers need information to help them do their tasks safely. Joan also stressed that assumptions should not be made about potential carers: "Nobody asked my opinion. I wanted to consider alternatives, but felt too guilty to say so."

Medical students can also do their bit by supporting carers' campaigns. For many years, carers have felt invisible to and ignored by policymakers.² However, over the past decade, UK carers have received increasing recognition. Currently, a bill is passing through the Houses of Parliament which is designed to improve carers' quality of life by enabling them to access education and employment opportunities. Carers' interest groups are busy raising awareness of carers' issues in many countries, including America, Australia, Canada, Germany, Ireland, Japan, the Netherlands, Sweden, and New Zealand. Governments in these countries are starting to listen to these groups, not least because as demographics change and populations age the number of carers is likely to increase. Uma Sharma sums it all up: "If doctors don't look after the health of the carer, they will have two patients rather than one," she says.

1. Carers UK. Without us... ? Calculating the value of carers' support. London: Carers UK, 2002.
2. Henwood M. Ignored and invisible? Carers' experience of the NHS. London: Carers National Association, 1998.
3. Howard M. Paying the price: carers, poverty and social exclusion. London: Child Poverty Action Group, 2001.
4. Department of Health. Caring about carers: a national strategy for carers. London: DoH, 1999.
5. White M. Family doctors "failing to meet needs of carers." Guardian 2001 Feb 20. http://society.guardian.co.uk/health/news/0,8363,440 631,00.html (accessed 14 May 2004).
6. Carers Association of South Africa. Projects and programs. Goodwood: CASA, 2002.www.carers-sa.asn.au/projects.htm (accessed14 May 2004).