carers: who cares?

by Kendra Inman

carers: who cares? | help and info

Around six million people in the UK – or 1 in 8 – act as carers for others, helping relatives, partners or friends live at home. Over three million of them juggle their work with caring. In addition there are between 20,000 and 50,000 young carers, aged under 18, who provide significant amounts of care for a parent or relative. All of them have a massive job on their hands, but are they given the recognition and acknowledgement they deserve?

© Getty

Often referred to as the invisible army, these carers provide everything from shopping and light cleaning to heavy duty personal care for people who are ill, frail or have physical or mental disabilities.

Carers provide the vast majority of health and community care and studies have shown their work saves the nation an estimated £57 billion a year that would otherwise have to be spent on services. This works out as an average of £10,000 saved per carer in the UK each year.

The Government's General Household Survey of 1995 found that 60 per cent of carers who look after someone in their own home carry out bathing, washing, dressing and toileting. A similar percentage provide help getting in and out of bed, walking and getting up and down stairs.

Although their work helps shore up health and social services, carers have asked for little in return. Most want to look after their relative or friend and are reticent when it comes to asking for support from social services, including respite care for much needed breaks.

Those who seek help from health or social services may find the system bewildering, especially when it comes to finding out which department is responsible for which service. The prospect of negotiating with separate departments for aids such as bathroom handrails, benefits and respite care may discourage carers from seeking help.

Being a carer can be rewarding for those involved but it also has its down side. Unless they receive proper support carers can suffer health problems. One study found that since becoming a carer just over half reported being treated for a stress related disorder and half said they had sustained a physical injury.

caring costs

Over three million people combine caring and working. For some juggling their responsibilities becomes too difficult and they are forced to give up work in order to devote themselves to caring. Leaving the workforce has a financial impact and also increases the risk of social isolation and a loss of confidence.

Others struggle to keep a foothold in the workplace. Nearly a fifth of carers working full time provide care for more than 20 hours each week. And 4% of those working full-time provide care for more than 50 hours each week.

carers' law

The Carers and Disabled Children Act, which came into effect in England and Wales in 2001, gave carers the right to an assessment of their needs in relation to their caring role. This is regardless of whether the person they are caring for receives services. A similar strategy is in place in Scotland, to help support the estimated 600,000 carers in the country.

Under the Act carers are also entitled to services in their own right. These services are defined as anything that promotes the health and wellbeing of the carers. The help can range from driving lessons, counselling or even money to replace a broken washing machine.

There is however no guarantee that services will be provided – the legislation did not come with any new money for implementation. And councils are able to charge carers for the services they receive.

On the plus side, as part of its National Carers Strategy, the Government put aside cash for local authorities to spend on respite care. The money has increased by nearly 50 per cent since it was first introduced and will continue until at least 2008. These breaks allow carers to take a holiday from their caring responsibilities and recharge their batteries safe in the knowledge their relative or friend is being well looked after in respite care.

In many ways the new rights are academic because many carers still aren't aware that they are entitled to an assessment, explains Vicky Pearlman from Carers UK.

'GPs and other health professionals should be asking carers whether they have had an assessment – in fact a relatively small percentage have,' says Ms Pearlman.

the third age

Help the Aged research called Caring In Later Life ppainted a bleak picture of life for the UK's two million older carers – over half of whom bear the brunt of caring with very little help from health or social services.

The report revealed that one third had gone without a break since becoming a carer even though well over half of the sample reported a long standing illness or disability. In addition three-quarters of older people who live with the person they care for receive no regular visits from health or social services.

passing the buck

Despite the carers legislation, many families find they have to fight for the support they need. A report by Carers UK, called You Can Take Him Home Now, highlights the problem.

Researchers found that health and social care staff were discharging patients from hospital without consulting their carers. One respondent's experience was typical.

'The only assessment we had was that my wife, the disabled person, was asked by a social worker over the phone, via a nurse, "Do you have anyone to look after you?" On replying yes she was told, "Well, you do not need any help." I was not consulted at all about my needs,' he said.

Hospitals have a responsibility to ensure that before a patient leaves hospital the help and support they need is in place.

Government guidance says carers should be consulted before a patient is discharged from hospital (subject to the patient's consent). Before release, patients are entitled to a community care assessment and a care plan setting out the services needed. These can range from help about the house or visits from a district nurse to practical aids or adjustments to the patient's home such as handrails in the bathroom.

The assessment, which usually involves staff from a range of departments, including the patient's GP, should also involve the patient and their carer. And the care plan must be in place before the patient is discharged from the hospital. The patient should be given a copy. Relatives or patients who feel they are being pressured into accepting a plan they are unhappy with should complain in the first place to the hospital management and/or the local authority social services department.

who benefits?

Government changes to state benefits were welcomed by carers' campaigners. The Carers (Equal Opportunities) Act of 2004, which came into being in 2005, means that carers can enjoy new rights. The legislation recognises that carers have a right to a life outside of caring. Amongst the benefits are more opportunities for work, education and life-long learning, more information about the rights they have and a better collaboration between services to help them in their caring role.

But there is still work to be done encouraging people to take up their entitlement. 'Many carers don't realise they're carers in the first place and those who do, fail to realise that they are entitled to benefits, especially those on a low income,' Ms Pearlman explains.

Carers UK urges anyone who is looking after a friend or relative to contact their local social security office or welfare rights advice service to ensure they're claiming their entitlement. Benefits available include Carers Allowance. Individuals who are being cared for may also be entitled to financial help and their rights should also be checked with a welfare rights professional. See help and info to find out more about your rights as a carer.

caring facts

• The peak age for caring is between 45 and 64.
• Of those carers providing care for 20 hours a week or more, over a quarter are aged 65 or over.
• 1.25 million people provide over 50 hours of care per week.
• Over 3 million people juggle caring for someone with working.
• People providing high levels of care are twice as likely to be permanently sick or disabled.
• Over 1 million people care for more than one person.
• Nearly two-thirds of carers look after someone with a disability; 7 per cent care for someone with a mental disability and 15 per cent care for someone with a mental and physical disability.
• 58 per cent of carers are women and 42 per cent are men.
• Every year over 2 million people become carers.
• Statistics suggest that by the year 2037, the numbers of carers could have increased to a staggering 9 million.

(April 2002, updated May 2005)

Read on for details of relevant organisations, websites and reading.