Who Cares about Carers? Rose Fernandez Looks after Her Autistic Daughter 24 Hours a Day. She and Six Million Others Save the NHS [Pounds Sterling]57bn a Year. Yet the Carer's Allowance Is Just [Pounds Sterling]46.95 a Week. Kira Cochrane on a National Scandal
Cochrane, Kira, New Statesman (1996)
"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 everything 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 [pounds sterling]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 taking care of our carers. Take the carer's allowance. At [pounds sterling]46.95 a week this is the lowest level of earnings replacement 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 stress
Another 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. …