Families being pushed to the edge as the real cost of care begins to mount

Sometimes she will wake worrying about her elderly parents, both in their 80s and living in separate residential homes. Other times it will be her son who causes her sleepless nights. James is 35 and while he lives independently, problems resulting from cerebral palsy and mental health problems means life is rarely straightforward.

It’s seven years since 59-year-old Annie gave up the job she loved as a drama teacher at Fulneck School, near Leeds. There was no option and while she has no regrets - it was, she says, what any parent would do - like many of those who find themselves becoming full-time carers, daily life can feel a bit like groundhog day.

“Of course my son has to come first. He always will, but that doesn’t mean that everyday life is easy. It’s hard and it is only going to get harder.”

Along with husband Peter, a 65-year-old semi-retired lecturer and James’ step-father, the list of jobs Annie needs to do to ensure her son has the best quality of life possible only ever seems to get longer and the gap between the benefits James receives and just his basic outgoings only ever gets wider.

“It’s tough, really tough. We look at everything we spend as ask ourselves, ‘Do we really need that?’ Things you take for granted when you’re working quickly become a luxury when you don’t have an income.

“The car is vital, but we’ve recently cancelled our AA cover because we just couldn’t afford the monthly payments. I don’t know what we will do if it breaks down, at the moment we do a lot of finger-crossing.

“I do worry about the future.Most of our savings have already gone and I know there will come a point when we have no other option but to sell the house. There’s no point being in denial, it will happen, but what then?”

Annie is not alone. According to a report published by Carers UK today, many of the country’s unseen army of carers are on the brink of a crisis. Spiralling costs coupled with recent benefit cuts have conspired to leave thousands of families facing the starkest of choices. In the last 12 months, almost half said they had cut back on essentials from food to heating and 19 per cent admitted they were unable to afford to pay their rent or mortgage. And that’s all before the emotional cost of being a carer is taken into account.

“It has cost me my career and my husband and I our savings, hobbies, health, opportunities, self-fulfilment, friends and quality time together,” says Annie. “We get no respite. How can we put a value on such huge personal costs?”

What most carers want is support. While the Government has acknowledged many flaws within the current system, as the number of full-time carers increases - latest figures estimate there will be nine million by 2037 - there is a need for urgent reform.

The main carers’ benefit, Carer’s Allowance, is currently £59.75 a week for a minimum of 35 hours caring – equivalent to £1.67 an hour. It is not available to those who earn more than £100 per week or to those in receipt of the basic state pension. For those who provide 24 hour care to loved ones, the benefits they can receive amount to just 35p an hour.

“There is just a complete lack of empathy,” says Annie. “Before the recession it wasn’t exactly easy being a carer, but I don’t think the Government realises what an impact these last few years have had on families like mine.

“I don’t claim Carers Allowance but it’s not because I don’t need the help. The reality is that if I took the £57 a week it would only be taken out of the money James receives. They basically give with one hand and take with the other.

“The fact is that as carers we save the country £119bn each year. That’s an incredible amount of money. Wouldn’t it be nice to think that the Government would recognise our efforts with a reasonable benefit which wasn’t means tested?

“For a long time now we have been denied a voice. It’s why organisations like Carers UK are so important. We need to be heard because this isn’t something which is just going to go away.”

It’s a sentiment echoed throughout today’s report. As one of those who took part in the research said: “Basically the Government is saying we are worth less than everyone else. We are told we do so much and are heroes, but then they turn around and pay us so much less than every other type of person receiving benefits.”

For those who suddenly find themselves thrust into the role of carer, life can unravel at speed. Take Julie and Peter. Six years ago and with no warning, Peter collapsed. Suffering a brain injury and cardiac arrest, he was resuscitated on the kitchen floor by paramedics. While they saved his life, Peter developed diabetes and the forgetfulness, mood swings and night terrors left him a changed man.

Reliant on an oxygen tank, Peter was unable to return to work and as the couple struggled to come to terms with what had happened, Julie quickly realised there would be little support available from social services. In fact, she says, one practice nurse told her bluntly that Peter needed her at home and she would have to choose between her job and him.

Forced to resign, the loss of Julie’s income was devastating. It took six months for Peter’s Disability Living Allowance to be approved and by that time their debt was mounting. With a drop in household income of more than £40,000 a year, even with careful budgeting the couple could no longer afford their mortgage payments.

When their home was repossessed they had no choice but to declare themselves bankrupt.

“We had good jobs and were doing well, but overnight it fell apart,” says Julie. “The impact of both us being unable to work was financially devastating. Now it’s a struggle to pay our basic bills. I have to choose between having the heating on or using the tumble dryer.”

Moving to a small bungalow they hoped that they might finally be able to get a handle on their finances, but the controversial bedroom tax has hit them hard. The property has a main bedroom and a small box room. Peter no longer sleeps well and with Julie’s arthritis worsening it makes sharing a room is difficult. Yet, under the new regulations if they want to keep their home with its extra room, they will face a bill of more than £700 a year.

“We are always in debt. We have to pay the new rent and council tax payments, but that means that other debts are building up. The water company is threatening court action and I am in major areas with the gas and electric.

“We have no choice of being able to get some work to pay the bills and there is nowhere to put a lodger. I just want to be able to take care of my husband because there is no way of knowing how long I will have him. I don’t smoke, drink or use anything other than prescription medication, all I want is a life where we don’t have to worry about debt.”

Carers UK says the situation is unsustainable and say that any further cuts in benefits or a rise in the cost of living will push hundreds of thousands of families off the cliff edge.

The organisation has now called for a detailed assessment of the Welfare Reform Act 2012 and a Government commitment to ensure that any future changes to social care legislation doesn’t have a negative impact on carers.

On a practical note, they also want disability benefits to rise in line with inflation, reduced energy tariffs for families of carers as well as allowing them access to free or discounted transport.

However, those changes will take time and that’s one thing many carers don’t have.

“I dread to think what the future holds,” says Julie. “I truly believe that this Government has no understanding of what it is really like to live on benefits long term with no other choice. I often think that we would be better off just not being here.”

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For help and support call the information line on 0808 808 7777, www.carersuk.org