The reality of life as a carer

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I have been a carer for 37 years. I’ve cared for my Mum, my disabled son and for the last five years for Robert. Robert is my son, he is a former pro-footballer who was left with lasting disabilities after he was brutally attacked when on holiday in Greece.

As a daughter and mother, I feel it is my responsibility to look after my loved ones. But I don’t think taking on that responsibility should mean the poverty and hardship it does for so many people.

Carer’s Allowance is £59 and a few pence each week; to receive that you have to be a carer for 35 hours or more per week. This is the amount Iain Duncan Smith says he could live on – I’m sure it’s much easier to say that when you have a well-paid job and house worth a couple of million to fall back on. For carers who do actually live on that amount, it means struggling with bills and counting the pennies.

It’s a full-time job where you don’t have a minimum wage (when it’s worked out, figures show carers earn around 80p per hour) or the right to negotiate your terms and conditions. You don’t have paid holidays, time off or flexible working.  If you want to try and hold down another job, every morning you have to think about looking after someone else before you can get out of the door. Then you have to worry about the call that often comes asking you to come home because of one emergency or another.

Employers don’t put up with it for long.

But carers contribute hugely to the economy. Carers UK put that figure at around £119 billion. That’s not pocket change.

That contribution comes at a human price for people like me and the carers I know in my community.

Many carers feel isolated and shut off. Friends lose touch because you’re always busy. Time off is time to catch up on sleep. Looking after a loved one who needs full time care can be a very lonely experience when the person you’re caring for isn’t really there anymore but you know you have to be. People fear asking for help, not wanting to be thought of as not coping, not wanting to risk intervention from social services.

It’s just not right. If Iain Duncan Smith wanted to swap me jobs for a week – and live on £59 as he claims he can – there are a few things I would do straight away.

I’d introduce a carer’s living wage – we save the country so much, the least we deserve is to live above the poverty line. It can cost £1500 to care for someone in a care home each week (and some people have to sell their homes to afford that) – we’re doing that for next to nothing at the moment.

I’d make sure that carers who want and are able to work, are allowed to earn more than the £100 per week which is in place at the moment.

I’d make sure everyone at the Department of Work and Pensions who deals with carers knows what happens to us when they stop our benefit without warning. It happens far too often, with no explanation and takes weeks and reams of bureaucracy to fix.

That’s the first week covered. I’ll get back to the drawing board for week two.

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