Special report: Who cares about carers?

Rose Fernandez looks after her autistic daughter 24 hours a day. She and six million others save the

"The times when I feel like crying - that's when I have to watch out, because I know that I could go right over the edge. Recently I was feeling at the end of my rope and I said to my social worker: 'I think I'm going to have a breakdown. What would happen to us then? Who would look after Crystal?' He just looked right through me, though. No answer. People think that carers are like robots or machines and can carry on endlessly without a break. It's crazy."

So says Rose Fernandez, a 45-year-old widow and mother-of-four whose youngest child, Crystal, 20, is severely autistic. Rose's mother, Maria, aged 77, suffers from dementia, and she and Crystal live with Rose, creating a huge bill of care. Rose feeds, clothes, cleans and manages both of them around the clock, supervising Crystal's education programme, for instance (she shows me three drawers full of flashcards and corresponding pictures), and ensuring her mother takes all her medication.

It's an exhausting job, but Rose is far from alone. Across the UK, largely hidden (and often silenced by the demands on their time), there are six million committed carers, responsible for every thing from administering drugs and cleaning bedsores to teaching loved ones to speak following a stroke. It is estimated that the value of support they provide has increased 70 per cent over the past eight years, with their contribution adding up to approximately £57.4bn per year: equivalent to the annual cost of the entire NHS. And all the evidence suggests that these numbers are about to rise fast. With an ageing population and constantly improving treatment for the chronically ill, it is thought that we'll need 3.4 million more carers by 2037 - a 60 per cent increase in demand for care from relatives, lovers and friends. For someone aged 29 now, the chances of becoming a carer will actually treble by the time he or she is 59.

We all rely on carers as a social cornerstone. We depend on their sense of love and duty, the twin compulsions that spur them to look out for another human being's needs, often 24 hours a day, even when this involves coping with constant, jarring repetitions, say, or an endless struggle to stop them hurting themselves, or the regular horror of cleaning up excrement that's been smeared on the walls.

Given their social contribution and their potential stress levels, it seems not only morally necessary (although it is certainly that) but just bloody sensible to look after our carers, to make sure that they have enough money to get by; enough breaks to stay sane; as well as clear and simple advice about their rights and entitlements at the point of need. Fail to provide this, and it's not just individuals who are likely to break down, but the entire system that underpins us all.

At the moment, however, it is fair to say that we're not tak- ing care of our carers. Take the carer's allowance. At £46.95 a week this is the lowest level of earnings replac e ment benefit, for a role that involves enormous amounts of stress, not to mention often considerable extra cost in the form of specialist treatment, equipment or additional care. Given the meagreness of this allowance, it is hardly surprising that six in every ten carers say that financial worries have had a damaging affect on their health.

Decades of stressAnother factor that has a severe impact on carers' health is a lack of proper breaks. Those who provide substantial care run double the risk of experiencing mental-health problems compared to the rest of the population - obviously exacerbated by the relentlessness of full-time caring.

Speaking to Rose, you come to a small appreciation of the debilitating levels of worry that go with caring for a severely disabled person. Currently, she receives direct payments from her local authority that allow her to buy in daycare for Crystal at home. Although this is what Rose wants for Crystal - a good alternative to residential care or daily trips to a care centre - she has to put a huge amount of work into managing this service, recruiting the care workers, overseeing the activities they undertake with her daughter, and training them. "I can never switch off," says Rose, "because while the care workers are well-intentioned, they often aren't that well trained. I need to be around all the time to make sure that Crystal is being properly cared for. I would just like some help in managing the care, and some real time off."

This need for regular short breaks is an issue that comes up repeatedly, urgently and angrily every time you speak to carers. For many of them, their position can best be compared with a new parent's experience in the first few months of their child's life: a time of constant stress, sleepless nights, and no choice but to put your charge's needs a million miles before your own. The difference for carers is that the situation stretches ahead for years, and often decades. It's no wonder that, deprived of regular respite breaks, many carers fall into depression and despair. The Mencap website is running a campaign called Breaking Point to highlight the compelling need for short breaks for carers. The campaign literature includes case studies of those who have considered putting their much-loved child into residential care simply because they can't get an occasional break. Then there's the exhausted mother who was on the verge of walking out on all her young children - one of whom is severely disabled - just because she was so desperate for a break. Only at this point of unbearable stress was she finally granted some rest.

Rose would like a break every six months, simply to sleep properly and relax mentally, knowing that Crystal is entirely in someone else's care. The trouble is that getting access to approp riate respite care is far from easy. Rose is entitled to a carer's assessment (an in-depth estimation of an individual carer's needs), which is carried out by a social worker from the local authority. The idea behind these assessments is that the carer and social worker work out and agree on some proposed allowances, which are then presented to a panel - which either accepts them, or doesn't.

This entire process - from asking for the care assessment to finding out exactly what you will be allowed - is supposed, under the terms of good practice, to take six weeks at most. As Rose has found out, this is often far from the case.

"I had been asking for a carer's assessment for a while when my social worker came around to do one at the end of last year," she says. "Where are we now, though - June? - and I still haven't received a copy of what he's suggesting to the panel. And that's happened given the fact that when he came here he saw the state I was in: I was just so tired. That's why I was asking for the assessment. The night before he came, Crystal had been awake, so I hadn't had any sleep. People like me are under stress 365 days a year and we're forced into begging the state for help.

"If we had a break twice a year, that would really make a difference. I just want a few weeks to sleep and sleep, without having to be half-awake all the time, listening out for Crystal. I love Crystal, and I need that break if I'm going to look after her properly the rest of the time."

Reduce the bureaucracy

Another move that would make a big difference would be a reduction in bureaucracy. Speak to any carer and they're likely to voice their huge frustration at a system where getting information about your rights and entitlements is akin to climbing Everest on crutches. And that's not to mention the endless form-filling once you've found out what you can apply for. Social work-ers are an obvious source of information, but many people feel that they act as gatekeepers, obscuring carers' true entitlements, rather than genuine helpmeets. This suspicion seems to be borne out by an astonishing statistic: approximately £660m-worth of carer's allowance goes unclaimed each year.

"Every day, I have a list of about 20 things that I have to do for Crystal," says Rose - "people that I have to call, forms that I have to fill in. And you don't get told what you're entitled to - that information is never just offered: you have to find out about it yourself. I've spent hours digging around on the internet, but even then it's often not clear what's applicable to you. And I'm lucky to have internet access. A lot of parents don't, and wouldn't know how to use the internet anyway."

If this set-up makes it difficult to organise essential support at the best of times, just imagine the worry that carers face when they think about the future. "I'm banking on my other children to oversee Crystal's care when I'm gone," says Rose. "But for that to happen, there needs to be the money and a system in place that allows them to pay her carers. The future is the scariest thing for me; I could get hit by a bus tomorrow. So I'm trying to get everything in place now, and I'm going to put everything I need down on paper, give it to the social workers, and see what happens. If they don't respond, though, I'll have to go down the legal route and get a solicitor to talk to them, and I won't stop until they give me what I need. I don't want to do that, obviously, but I'm prepared to, if it's necessary."

The very fact that Rose is anticipating the need for a solicitor, simply to set up appropriate care for her daughter in the event of her own death, underlines just how pressurised, unsupported, and even vilified, at times, carers can feel. At the present rate, three in five of us will be in this very position at some point in our lives. Isn't it in all our best interests - as well as the interests of basic humanity and decency - to start taking care of our carers?

Kira Cochrane is the Guardian women's editor

"The hardest thing is living in poverty"

Maryann Finnegan, 32, is a full-time carer from Belfast, looking after her mother, Carmel Tyrel, 53

I was 21 and training as an accountant in London when my mum first took sick. She had a brain haemorrhage, and after her operation she was deprived of oxygen and suffered brain damage. My sisters were nine and 12, and I had to come up to Belfast to look after them and my mother.

My sisters have grown up and left home now, and I look after my mother alone. She has no mobility - she uses a wheelchair - and sometimes she can't even recognise me. She can speak in a whisper, but she talks a lot of confusion, and she has to be fed through a tube. Even a small thing like giving her a shower takes two hours.

One of the hardest things is that we have to live in poverty. The £46.95-a-week carer's allowance works out at about 20p an hour if you're working around the clock. It's crazy. And my work isn't even recognised. There's no box for carers on official forms and I find it embarrassing saying that I'm unemployed. I hate that.

I try not to dwell on things, because my mum can sense if I'm depressed and it changes her mood for the worse. The fact is, I'd never want anyone else to look after her, and when I kiss her goodnight and she says "I love you", it's all worth it. I really love my mum."The hardest thing is living in poverty" Maryann Finnegan, 32, is a full-time carer from Belfast, looking after her mother, Carmel Tyrel, 53

What carers need

* Carer’s allowance to be increased from £46.95 to at least £78 per week (the level of long-term incapacity benefit). Carer’s allowance is currently by far the lowest of all earnings-replacement benefits. The cost of this increase – roughly £700m – is trivial in comparison to the estimated £57.4bn-worth of support carers provide each year, the equivalent of a second NHS.

* Carer’s assessments (which calculate the level of support that is available to each carer) should take no longer than the recommended good practice of six weeks.

Regular short breaks for everyone who cares for a person with severe disabilities in the family home.

* Help to organise a reliable emergency care package that can be accessed immediately if a carer is unable to care and falls ill, or goes into hospital, or dies suddenly.

* A government-funded national helpline for carers.

* A commitment to ensure that the estimated £660m of carers’ benefits that goes unclaimed each year is made available to those who are entitled to it. This could include a nationwide campaign, advising carers of their rights.

* A senior government official to be appointed as Carer’s Champion, to oversee all policy

and cut down on the bureaucratic problems that carers struggle against.

Carers Week, organised by Carers UK and other groups, begins on 12 June.

Information: www.carersuk.org

and 020 7490 8818. Carers UK advice line: 0808 808 7777 (Weds and Thurs, 10am-midday; 2pm-4pm).

Caring Crisis

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