More than 2 million people give up work to care for relatives

More than 2 million people give up work to care for relatives

More than 2 million people in the UK have given up work to care for disabled, sick or elderly relatives and loved ones, according to a survey.

More than one in five of the adult population, or 22%, have seen their work affected by caring responsibilities, with an estimated 2.3 million leaving jobs to care for a loved one, an online poll for the charity Carers UK has revealed.

Almost 3 million people have reduced their working hours to cope with caring responsibilities, the survey of 2,073 adults, conducted last month, showed.

The hardest hit were 45- to 54-year-olds, where more than one in four, or 27%, reported that caring had taken a toll on their work.

The findings have prompted Carers UK and the group Employers for Carers to call for more support for people attempting to juggle work and caring roles.

Helena Herklots, the Carers UK chief executive, said: “As with childcare a generation ago, employers can play a critical role in shifting how we as a society support people with family responsibilities.

“But support from employers can only go so far, and families need to be able to access reliable, good quality and affordable care and support services to enable them to juggle work and care.

“Without urgent action from government to ensure families can access this support, millions more will see their careers and earnings suffer – with long-term personal costs to families and significant costs to business and the UK economy.”

The figures have been published after the 2011 census in England and Wales showed one in 10 residents, a total of 5.8 million people, devotes at least part of their week to caring for disabled, sick or elderly relatives and loved ones without any expectation of payment.

This is an 11% rise on the 5.2 million unpaid carers recorded in the 2001 census.

The greatest increase was among those providing more than 20 hours a week of care, with the number rising from 1.66 million a decade ago to 2.1 million in 2011.

Nearly 300,000 extra people are dedicating 50 or more hours a week to looking after family and friends, with the figure now standing at 1.36 million.

Life as a young carer

Tags

carers, MS, young people

Life as a young carer

Ray Thomas chuckles as he recalls the sight of bread appearing to butter itself on the kitchen counter back when his daughter was at preschool. “Sarah couldn’t reach the counter to make sandwiches, so all you’d see is the bread and knife looking as though they were doing it themselves,” he says.

Sarah has been a carer for her mother, Carole, who has multiple sclerosis, since she was small. Then, when she became an adolescent and her father was diagnosed with degenerative bone disease and fibromyalgia, she had to become his carer too. “I’ve never known anything else,” says Sarah, who is now 18 and who continues to do everything from general household chores to helping with medication, providing physical assistance, filling in forms and many other day-to-day jobs.

“One of my earliest memories was being amazed to see my friend’s mum walking. I thought all mums were disabled and all dads worked long hours,” she says, as I talk to her and her parents at their terraced home in Shrewsbury. “But I can’t say I was disappointed when I found out that my mum was different,” she adds, thoughtfully. “It has meant she’s always been around and although it’s hard to say what I’d have been like if I hadn’t cared for her from a young age, I do know I’m very independent – far more so than most of my friends.”

It’s true that Sarah’s confidence, assertiveness, empathy and buoyancy all combine to make her seem much older than her teenage years, while her relationship with both parents reveals a rare mixture of easiness and frankness.

There are lots of assumptions made about young carers, says Sarah, not least that they miss out on holidays. “In fact, we usually got away three times a year. Then there’s the assumption that my education suffered. But I did well in my GCSEs and am enjoying studying health and social care at college. If anything, I hand in work early. Mum’s illness is so unpredictable that I’ve always felt I need to be ahead of the game.”

Neither Carole, 56, nor Ray, 59, feel guilty about the role Sarah has had to play. “People often ask me that,” says Carole. “But I think the illness has given us advantages as a family. Not only have she and I had much more time together than most families, but I think the illness has made me a better person for keeping life in perspective. Hopefully I’ve passed that on to her.”

Carole was only 20 when her first symptoms of MS began – notably, blurred vision and pins and needles in her legs. “It wasn’t long after we’d got married and there were days I thought I was losing my mind. One day when we came home to find the cat dead, I even got them to do an autopsy because I wondered if I’d caught something from her. So I was relieved, two-and-a-half years later, to get a diagnosis. Finally, I had a name to put to it and could get some treatment, although there wasn’t much around at that time.”

Although he didn’t explain why, a specialist told Ray and Carole he wouldn’t recommend having children, so they put any hopes of expanding their family aside until another specialist said he could see no reason not to. It was eight years before Sarah finally arrived. “Carole was the healthiest I’ve ever known her during her pregnancy and the happiest I’ve ever known her when Sarah was born because she was such a distraction from the pain,” says Ray, although it’s Sarah who appears more well-versed in the details of that period than any of them.

“I didn’t cry and they only had to wake me to feed me. If I fell asleep on the floor, Mum would just put a blanket on me as lifting was hard for her,” she says, as her parents nod in agreement. “As I entered toddlerhood, I didn’t see the point of tantrums or crying, so I continued to be no trouble. If Mum needed to rest, Dad simply took me out. Friends and relatives helped out a lot too. In fact, I loved it when Mum went into hospital because I got to have a sleepover at my friend’s house,” she says.

Sarah’s earliest duties were things such as unfolding Carole’s walking stick, lending her a shoulder to lean on to get out of a chair and basic housework. Later, she started to give her mother injections, do more housework, plan meals and check tablets, as well as help her in the shower and bathroom.

“By the time I had got to year 9, my school teacher said, ‘If you think about it, you and your mum’s roles are reversed’ and I thought, yes, I’ve never thought of it like that before, but it’s true.

“It wasn’t just the practical things – I had become an emotional support to her too. As my dad’s pain has become more constant and agonising, that’s happened with him too. It’s not something I feel remotely bitter about, but it must at least partly account for why I’m not your typical teenager and I never do stuff like drink and party hard. I’m a lone ranger and a very sensible one at that.”

Not that any of them see their situation through rose-coloured spectacles. “There are weekends when I literally cannot move and Sarah has to move my legs for me, while Ray’s pain can be unbearable, so of course it gets us down sometimes,” admits Carole.

“We can irritate each other,” says Sarah. “We don’t shout or argue, but because we’re together in this house most of the time, sometimes I don’t know how we don’t wind up killing each other.”

“I think you forget how young I am sometimes too,” she adds, addressing her parents. “I asked Mum what a word meant the other day, and she was really taken aback.”

The worst aspect of Sarah’s life has been bullying by her peers. “I’ve never yet met a young carer who hasn’t been bullied. I think it’s because we stand out – we have often had to grow up quicker than our peers, and kids don’t always like that. In my case, there was a group who targeted me physically and verbally at school.

“Sometimes even adults were unkind. I have to go to our corner shop a lot and the woman there used to eye me like a hawk and was always rude to me, as if she was expecting me to steal. I suppose it’s because I was in there so much at such a young age. Then one day I went in with my mum and the reality of my situation must have hit her because she changed her tune completely, and has been nice ever since. But even when I was asked to carry the Olympic torch this year, there were people who told me I didn’t deserve to. These days, I can rise above it, but it used to really hurt.”

Sarah’s anxiety has not been easy either. “I’ve always been a nervous person, but after my uncle died in 2006, I started to get panic attacks. He was the fun one in the family – the relative who would let me be a child, taking me to places like the cinema. But even if he hadn’t died, I suspect I’d have some kind of issue. I’ve never met any young carer who doesn’t, whether it’s extreme shyness, aggression, depression or anxiety. It has to come out somehow.”

Sarah first started meeting other young carers when she helped to set up a local group for them, when she was eight. “It became my lifeline. It was somewhere where others really got what it’s like to be a carer, and it was a safe place where we could be brutally honest about our lives around each other. Best of all, it was where we got to be children. Play was a major part of those get-togethers.”

The group also became the catalyst for Sarah’s passionate campaigning for young carers and she continues to call for better support and recognition. There are an estimated 700,000 young carers in Britain, with an average age of 12, which is how old Sarah was when she posted a video on YouTube showing what life can be like. “Local councils and the government just don’t realise how much emotionally and physically young carers go through, and I wanted to show them,” she explains.

In 2009, Sarah won the Multiple Sclerosis Society’s Carer of the Year award and the International Caregiver award from the Multiple Sclerosis International Federation in 2010. Last year, she was invited to carry an Olympic torch in recognition of her work on behalf of young carers.

Her latest bugbear has been university. She started to wonder how she would ever manage to go. So strong were her views that in 2010, she was invited to air her concerns, along with four other young carers, at a meeting with David Cameron at Downing Street. “It’s not just me – it’s thousands of young carers in the same, and a lot worse, position who just don’t have any prospects because of it,” she says.

Ray accompanied Sarah on the trip. “David Cameron said to me, ‘So how are we going to get your daughter to university?’ I answered, ‘You’re the one running the country, you tell me.’ But he didn’t.”

In the end, Sarah enrolled for a course through the Open University. “It means I can stay at home and get the degree I’ll need to hopefully go on and work in health journalism or policy-making. It suits me, if I’m honest. I get panic attacks in exam situations and I just wouldn’t enjoy sharing a house with a bunch of partying students who don’t clean the bathroom or wash up. I just know I’d get teased.”

So what does the future hold otherwise for Sarah? Actually, she is engaged to be married. “We have no imminent plans to marry but there will come a time, perhaps when I am at university, that I’ll want to move in with him – I do think I’m increasingly ready for that. Mum and Dad have always encouraged me to grow up to have my own adult life, and while I used to worry what would happen to them, I think they would manage now. They have lots of friends and relatives, and I would never be far away.”

Further information

• Up to 700,000 children in Britain look after/support to some extent parents or siblings with disabilities, mental-health problems or who misuse alcohol or substances.

• Many provide more than 20 hours of care a week, with some doing more than 50 hours a week.

• Research shows that 27% of young carers, aged 11-15, miss school or experience educational difficulties and 68% are bullied by their peers and feel isolated at school.

Support for young carers

Many parts of the country offer a Young Carers Project. These offer fun (evening clubs, days out and holidays) and a listening ear when necessary. These are also a great source of information and advice for the whole family, as well as support to help young carers make the best choices for themselves. Most are listed on the internet, or find out more by emailing youngcarers@carers.org.

• Young carers can gain help and support from a wide range of professionals, including doctors and school nurses, teachers and other school staff, social workers and youth workers.

• Carers Trust is a website and online support service, through which young carers can find others in similar situations to chat to in a supportive environment. There’s an online support team that offers email and chat sessions, and additional advice on the Agony Aunt pages. The team also runs a programme of web chats with special guests once a month. Find out more at youngcarers.net.

• The MS Society provides a guide for young carers on the resources page of its website, mssociety.org.uk. The charity also has a Young Carers Fund, which gives young people caring for someone with MS the chance to fulfil personal goals or wishes.

• Helplines, notably ChildLine, are a good source of confidential advice because you can choose not to give your name.

Grandparents who become full-time carers plead: ‘We can’t do it all for love’

Grandparents who become full-time carers plead: ‘We can’t do it all for love’

One night earlier this year Stephen Merchant, 55, was contacted by his local council’s children’s services department. Twelve hours later, he was the full-time carer for his grandson, Charlie, who will be three years old on Wednesday. “Life changes in a phone call,” says Merchant, who comes from Northampton.

He had to give up his job as a driver. “My employers offered a baby seat in the lorry,” he jokes, “but Charlie comes first.” Charlie was taken from Merchant’s son and girlfriend when it was found that the baby had fractures. “I was the only one in the family who could change lifestyles at the time,” he says. The two now live on around £250 a week, or £12,000 a year. “I’m not flush, but I can survive. The family help. I’ve got bags of clothes for Charlie that will keep him in trousers until he’s five. He’s happy at nursery. Charlie’s great. He’s part and parcel of my life now.”

Merchant’s income fell considerably when he became a full-time carer. Once he becomes a pensioner and Charlie is a teenager, the financial squeeze will become even tighter. Merchant, like most grandparents and relatives in his position, receives almost no practical or financial support.

It is estimated that 250,000 children are in kinship care and are twice as likely to live in poverty as children living with their parents. A YouGov poll published last week by the charities Grandparents Plus, the Family and Parenting Institute and Family Lives, and funded by the Big Lottery, starkly illustrates that, while the public’s attitude is hardening on benefits, there is overwhelming support for more practical and financial help for grandparents and other relatives bringing up children. More than two-thirds (67%) of adults agree or strongly agree that grandparents and other family members rearing a related child should receive practical help and a financial allowance. Even more (78%) agree with that, if the grandparents are on a low income. Strong support (60%) also exists for grandparents to have paid leave.

“Grandparents provide children with love, a sense of identity and belonging, and crucially they maintain a child’s relationships with the wider family,” says Sam Smethers, chief executive of Grandparents Plus. “But they need support.” In care, a child could cost more than £50,000 a year. If fostered – and therefore still the responsibility of the local authority – a carer could receive up to £40,000 a year. However, only 4% of grandparents foster their grandchild; the rest rely on the discretion of local authorities to provide an allowance. “I don’t want my daughter’s child to grow up thinking they are ‘in care’ under my roof,” one grandmother explained.

“The system ought to reflect the needs of the child and carer,” says Cathy Ashley, chief executive of the charity Family Rights Group. “Instead, often the only way to get help is for grandparents to push children into the care system. That can’t be right.” A study this year said 72% of carers rated support from children’s services as “poor” or “very poor”.

Rosemary and Gordon Rawlings live in Plymouth. Rosemary, 64, was a school cleaner, Gordon, 67, is a retired postman. They raised five children and for the past six years have cared for their daughter’s child, Heidi, aged 12.

“She’s a Rawlings and she’s going to stay a blooming Rawlings, no matter how hard it is,” Gordon says. The family live on just over £200 a week. “We don’t smoke, we don’t drink, we don’t go out,” Gordon says. “But it’s worth it when Heidi gives us a hug. When she first came to us, we had to feed her in small portions because her stomach was so small – she had never been fed proper meals. Now she’s doing really well at school.” He adds: “A hundred pounds a week would make all the difference. But we’re not alone in receiving nothing. It’s happening across the country.”

Kathryn Bennett, 62, is a retired teacher with acute arthritis. Her husband Roger, 65, was in the fire service, then worked part-time and retires shortly. Their income will go down to around £20,000 a year “We never claimed benefits, we saved for all the things we were going to do when we retired,” Kathryn says.

In May 2011 her daughter, who had mental health problems, died aged 35. Her three children, now 12, seven and four, with a range of challenging behaviours, came to the Bennetts, who used their life savings to extend their home. “For 18 months I cried and wept and begged for extra help,” says Kathryn. “I was close to a breakdown and we said the two boys would have to go into foster care. Why does it have to reach a crisis before something happens?”

The Family Rights Group and five other charities this month launched an inquiry into the care system, reporting in 2013. Grandparents Plus also hopes that Edward Timpson, the recently appointed education minister, whose own parents fostered more than 80 children, will become a champion of kinship care, end the postcode lottery and establish a national support system.

The Bennetts now have 24 hours of respite care and receive £720 a month. That pays for Miguel, 23, a Spanish male au pair. “It’s made such a difference,” Kathryn says. “But we were made to feel awful for asking. The social worker said, ‘Do you know how many mums I have asking for help?’ I had to say, ‘But I’m not a mum, I’m a grandmother’.”

THE CARERS

Pam Purvis, 47, and her husband Tommy, 50, from Tyne and Wear, married six years ago. “Our wedding was full of other people’s kids,” says Pam with a smile. “We said, ‘Thank God, we’re too old to have any more.’ Then Connor arrived.”

Connor, now in school, was eight months old. He had been taken away from Pam’s daughter, one of Pam’s five grown-up children. A second child, Jayden, nearly 18 months, arrived more recently from a different local authority (LA).

“The first LA told me I had to give up work and they’ve given us a great package for Connor until he’s 18,” Pam says.

But then she adds: “The second has said I have to find a job when Jayden is three and its financial help stops.

“My husband is retired on a disability allowance and I obviously don’t earn anything, so I’m worried about the future. The boys are brilliant, but why does everything have to be such a battle?”

Almost half of unpaid carers risking their health, survey shows

Tags

Cancer, carers, healthcare, mental health issues, physical health

Almost half of unpaid carers risking their health, survey shows

Nearly half of unpaid carers in the UK are jeopardising their health due to a lack of support, according to a survey.

Carried out by Carers Week, a group of eight charities including Age UK, Carers UK and Macmillan Cancer Support, the survey found that 40% of carers had put off receiving medical treatment because of the pressures of their role.

In addition, 87% of the 3,400 carers surveyed said caring had been detrimental to their mental health, while 83% said they had suffered physical health problems. Another 36% said they had sustained injuries such as back pain and insomnia while caring for sick or disabled friends or family.

Helen Clarke, Carers Week manager, said the government had to do more to support Britain’s 6.4 million carers – both practically and financially. She called for more sustainable social care funding, better signposting for support services and regular health checks for carers.

“It’s a scandal that carers can’t get the time or support they need to look after themselves, which could be jeopardising their health as a result. Carers are feeling the strain of a woefully underfunded system and still we’re seeing more cuts. Unpaid carers save the government a fortune – £119bn a year – yet they’re let down in return. It is time for urgent action to tackle the crisis in social care.”

Another survey conducted by the Association of Directors of Adult Social Services last week revealed that social care budgets had been cut by £1.89bn in the last two years, and suffered a drop of 6% last year at a time when pressure from rising numbers of older and disabled adults continues to grow, at around 3% each year.

The Department of Health said it was responding to the carers issue via £400m in extra funding to the NHS for carers’ breaks until 2015.

Tracy Sloan, a carer for 20 years to her son Phillip, who has severe cerebral palsy, said she was diagnosed with cancer after missing a regular screening appointment. But once she had begun receiving treatment, there was still little time for recovery.

“Looking after Phillip is so full on, that it just didn’t occur to me to keep an eye on my own health,” she said. “I was really shocked when I discovered I had cancer and needed an operation. I came home from hospital exhausted, emotional and fragile. I really needed the chance to rest but instead I had to deal with Phillip’s demands too, and that took its toll on my recovery.”

Carers Week, which also includes the Carers Trust, Independent Age, Marie Curie Cancer Care, the MS Society and Parkinson’s UK, said that Tracy’s experience is not an isolated one.

A spokeswoman for the DH said: “Carers make an invaluable contribution to society and it’s vital that we support them to look after their health and wellbeing. We know how important it is for carers to be able to take a break from their caring responsibilities, to protect their own physical and mental health. That is why we have provided £400m additional funding to the NHS until 2015 for carers’ breaks, and why we’ve given the NHS the clearest ever direction to make carers a priority.

“We also want to place the rights of carers on a much firmer footing, so that the law recognises carers’ rights and their role in caring for others.”

According to Carers UK, 1 million carers – one in six UK carers – are forced to give up or cut back work to provide care, which can mean a significant drop in income. They said carers clocked up an average of 27 hours a week.

Angela Eagle, minister of state for pensions and ageing society has said the government would introduce reforms that would enable carers working for more than 20 hours a week to build up an entitlement to a basic state pension.

Britain’s army of unpaid carers ‘being pushed to breaking point’

Tags

carers, Depression, isolation, mental health issues

Britain’s army of unpaid carers ‘being pushed to breaking point’

Britain’s army of unpaid carers are isolated, depressed, physically exhausted and broke as they struggle to cope with caring for sick and disabled relatives without adequate support.

A poll carried out by the Carers Trust has revealed nearly 60 per cent of adult carers reported suffering mental health problems due to the strain of caring and juggling other responsibilities.

Just over a quarter experienced both physical and mental health problems, with muscular strains, insomnia and exhaustion common complaints. Almost 60 per cent said caring had damaged their careers.

The findings, from a YouGov poll of 500 adults, will put further pressure on the Government to provide universal access to support services for Britain’s six million unpaid carers, who save the economy an estimated £119bn every year. The survey also found that almost two-thirds had never accessed counselling, respite or welfare support – services known to reduce the stress and burden on carers.

Shadow Health Minister, Andy Burnham, last night called for minimum national standards and ring-fenced budgets for carer support in order to avoid a “bedevilling” postcode lottery.

Existing evidence suggests carers are twice as likely to suffer ill health as the general population, and almost three-quarters become financially worse off. More than 1.5 million carers are aged over 60, and as they are often relied upon to move or lift immobile people or are asked to bathe, clothe and medicate sick relatives, they require support too.

David Cameron has spoken out about the value of carers and the need to better protect their well-being. By 2037, the number of carers is expected to rise to nine million as a result of an aging population, better survival rates from medical conditions and a reduction in public funding for social care. Mr Burnham, who is involved in cross-party talks trying to reach a consensus on how to deal with Britain’s “care crisis”, said: “If carers can’t cope, it ends up costing us more, so it doesn’t make economic sense to drive carers into the ground – never mind that it’s wrong morally.

“Localism often means a postcode lottery and carers’ issues often fall between cracks. I believe that sometimes you need ring-fenced funding to drive through change, otherwise things don’t change and families are left struggling.”

Anne Roberts, chief executive of the Carers Trust, said: “Many carers don’t identify themselves as carers, and so simply don’t have any awareness of the kind of help that is out there.”

Campaigners also warn that the squeezing of adult social care by local authorities is starting to filter down to carers. Emily Holzhausen, director of policy at Carers UK, said: “We are seeing very worrying signs about the impact of local authority cuts and tightening of eligibility criteria.”

A Department of Health spokesperson said: “We are working with … interested parties to create a sustainable system that ensures people and their carers get the quality care they want.”

Case study: I carried on until I ended up in a cardiac unit

Norman Phillips, 60, from Stevenage, had to give up his work as a programme manager for an IT firm four years ago to look after his wife. Ros, 62, suffers from multiple sclerosis, but did not qualify for local authority support. The couple were unaware of carer organisations and couldn’t afford to pay for full-time carers. Norman became depressed, damaged his back from lifting and moving Ros, who often falls, and the couple almost lost their house.

The days were getting longer and longer, that’s what done for me in the end, I knew it wasn’t sustainable but I pushed it too far until I collapsed and ended up in a cardiac unit, totally exhausted,” he said.

“Financially it was a disaster; we ended up having to be mortgage rescued and we were at risk of being made homeless. I went to Citizen’s Advice – I felt humiliated. I went from earning a good wage to this, and everything was closing in.

“A little bit of help early on could have avoided a lot of what happened to us. But there is no one to help steer you through what is a minefield. If you get cancer, you get all sorts of help to steer you through the system, with MS and Parkinson’s and other chronic conditions, you’re lucky if you get a leaflet.

“A bit of help would allow you to plan a way through, as when you’re in it, you don’t realise that the wall of water coming up behind you is going to catch you eventually.”

Caring in numbers

6m: 1 in 8 adults (around six million people) are carers; this is expected to rise to 9 million by 2037

58% of carers are women and 42% are men

3m: More than 3 million people juggle care with work and 1 in 5 carers are forced to give up work

50: 1.25 million people provide more than 50 hours of care per week