Who Cares About Carers?

A thirty-three-year-old Ray Churchill left his home for 10 minutes one morning in January 1985. On returning, he went upstairs to his bedroom only to find blood all over the bed.

His wife Rita, then 28, had slit her wrists in a suicide attempt. She had been diagnosed with schizophrenia not long before.

From this fateful moment to the present day 25 years later, Ray’s life would never be the same again. He became a full-time carer, giving up a job he immensely enjoyed as a senior building contractor with prospects of further promotion.

It all began when Rita started to hear voices. She was convinced that their neighbours were speaking about her.

For someone unfamiliar with mental illness and not being in the medical profession, Ray had no reason to disbelieve her. He angrily confronted their neighbours, only to be met with a bemused response.

The sad reality soon dawned on him. And when Rita was diagnosed with schizophrenia, Ray, soon to become a full-time carer, was forced to become an expert in something he knew nothing about.

In the early days of Rita’s illness, Ray hoped she might fully recover. A few years later, when her illness had stabilised and she fell pregnant, they decided to have their second child, son Mark.

But the consequence for Rita was severe post-natal depression which caused a relapse.

Mark, now 22, was diagnosed with schizophrenia in his teens and Ray became a carer for both of them.

These days Ray’s own health is deteriorating, which he feels has been sped up by the daily stress of being a carer. He has been diagnosed with depression, asthma, type two diabetes and the bone condition Paget’s disease.

For all his troubles Ray is currently paid £53.11 a week in carers’ allowance. This is the standard benefit if you are a full-time carer, no matter how many people you care for or what condition they are in.

As Ray puts it, “it doesn’t matter if you care for a whole factory full of people – you would still receive £53.11 a week.”

If this is broken down to an average nine-hour working day, including weekends for those like Ray who care around the clock, Ray earns less than £1 an hour.

“The allowance I receive is so low that I honestly don’t notice it,” says Ray.

“I’ve often argued that carers should receive at least minimum wage for nine hours a day, five days a week – since I doubt the government would consider paying out for 24/7, which is the hours that carers really work by.

“There’s a lot of truth in that you can’t have a holiday as a carer.

“I haven’t had a holiday since the early ’80s, but travelling is just one of the things I’ve missed out on.

“Obviously I had to give up my job and consequently have never been able to broaden my horizons. My ambitions ended and I stopped living for me,” he says.

“I love my wife and son dearly – that’s the bottom line. But I guess when I think about it, nobody ever asked what I wanted out of life.

“When I started caring I used to get very upset because no matter how hard I worked to get some freedom and a better quality of life for my wife and son, the realisation was always at the back of my mind that nobody, including doctors, gave a shit but me.”

That realisation probably isn’t helped by the government’s pathetic and insulting allowance.

According to research carried out by the charity Carers UK, as a result of this measly sum carers are having to sell their homes, cut back on food, heating and clothes, give up their jobs and sacrifice their pensions, leaving many deeply worried about their financial future.

To add insult to injury it has been well documented that because of the duty carers take upon themselves they save the government to the tune of £87 billion a year – not far off the NHS budget for 2010-11, of £106bn.

“Our NHS and social care systems would collapse without carers,” says Carers UK policy director Emily Holzhausen.

“Our campaign for ‘real change not short change’ in terms of carers’ benefits isn’t about trying to prise more money from the government. It’s about recognising the value of carers, which the current system doesn’t do.

“We are calling for radical reform that should reflect the very different circumstances from carer to carer, not for them all to be lumped with the same derisory sum.”

A Department of Work and Pensions spokeswoman, however, says it is worth mentioning that in addition to carers’ allowance, carers on low incomes can also claim income-related benefits such as income support or pension credit.

But as Ray, who receives income support himself, points out, because it’s means tested the amount you get is reduced by receiving carers’ allowance so that the farcical result is “a lot like the government giving you something with one hand and taking it back with the other.”

John Lister, Health Emergency director and author of The NHS After 60: For Patients Or Profits? touches on the reasons why the government gives caring such a bad hand, coming to the conclusion that it is often because the subjects are too vulnerable to speak up for themselves.

“The problem is,” says Lister, “that every time there is a funding squeeze, and there are more on the horizon, this kind of thing is the first thing to get hit due to the cynical view that any vulnerable sector, such as mental health and elderly care, is an easy target because the sufferers are less likely to fight back due to their health.

“When the government speaks of ‘community care’ what it really means is creating a DIY society where it can get away with giving little to nothing at all.

“Government policy in terms of carers’ support is based on another cynical view that because the carer and cared-for are often loved ones, they would, if it came to it, care for free.

“The only reason that carers’ allowance exists at all is a way for the government to give as little as possible to make it look as though it is giving support.”

Ray agrees. “I would care for free if it came to it,” he says.

“It’s something that is very much lumbered onto the backs of relatives and loved-ones who are left emotionally blackmailed because there is a presumption that they should be the ones to take responsibility.

“But at the same time, even though my own health is deteriorating, I wouldn’t want my children ending up looking after me.

“Some people spend what I receive in benefits every week on themselves in one day. Apparently it doesn’t matter that I’m expected to support three people – including myself.

“The truth is the government could help carers at home if it stopped wasting billions on other things – illegal wars come to mind.

“I’ve often thought that where nazi Germany exterminated the mentally ill through politics and bureaucracy, the British government is not far off.”

After all it was only in June 2008 – with the National Carers’ Strategy – that the government finally recognised that carers have widely differing caring responsibilities and support needs.

A DWP spokeswoman more positively adds: “We will be considering carers’ benefits within the context of longer-term reform of the benefit system and the Department of Health’s review of the care and support system.

“We want to create a system of carers’ benefits that is able to provide effective support where it is most needed and that can adapt to the extensive range of needs that carers have.”

Whether these words will spell positive action or are mere empty rhetoric remains to be seen. Ray, with his 25 years of experience as a mental health carer, probably knows which is more likely.

This article first appeared in the Morning Star newspaper.

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This post was written by Will Stone