I’m going to say it again- unpaid carers are not heroes. We’re trapped, tired, and ignored. Some people who work at the Department of Work and Pensions (DWP) even think we’re criminals – also not true, obvs.

This Carers Week, I want to highlight some real heroes: the journalists who cover stories about unpaid carers and who listen to us when no-one will. So I sent some questions to The Guardian’s social policy editor, Patrick Butler, about his and his colleague Josh Halliday’s investigation into the Carer’s Allowance overpayment scandal which recently won the Paul Foot Award for Investigative and Campaigning Journalism.

Here’s what he had to say:

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Could you introduce yourself? How did you become a journalist?

I’m the social policy editor at The Guardian, where I’ve worked for 25 years. The job involves reporting on a wide range of areas including  poverty, social security, local government, the voluntary sector and social care. I did English at University, followed by a postgraduate diploma in journalism in Cardiff in 1989. I subsequently worked in trade magazines, before going freelance. I joined the Guardian’s (then) new website in 2000, when newspapers were king and many people thought news websites were a passing fad!

How did you initially come across the carer’s allowance story? Can you summarise it for those who aren’t familiar with it?

As with many of the best stories, it was brought to my attention by someone directly affected by it who wrote to me asking if I was aware of the issue of carer’s allowance overpayments. One of the interesting things about social media is that people who for one reason or another might not be natural Guardian readers come across my articles when they are shared on Facebook or talk threads, and as a result get in touch. I had a bit of a dig around, and discovered that tens of thousands of unpaid carers  – in the main middle-aged women on very low incomes – were being unfairly trapped and penalised by draconian carer’s allowance earnings rules, landing them with huge unexpected debts and in some cases a criminal conviction for fraud. Straight away we realised this was an awful, avoidable, blood boiling injustice.

What has shocked you the most so far working on this story?

How long have you got? My shock that it was happening in the first place soon turned into astonishment that there had been multiple opportunities, going back over a decade, for the Department for Work and Pensions (DWP)  to fix the problems but it had done next to nothing, despite repeated promises. I’ve reported on benefits for years, so I’m fairly battle hardened, but even I was taken aback by the cynicism and complacency of the DWP in its dealings with unpaid carers, and the scale to which it prioritized its internal financial and administrative priorities over fairness and the wellbeing of the very people it was supposedly there to support.

Has there been a carer story that was particularly memorable? Can you share it?

My colleague Josh Halliday and I – we collaborated closely on the investigation  – spoke to many unpaid carers in the course of this story and it’s fair to say they were all memorable in their different ways. We were invariably struck by their bravery and dignity in the face of incredible stress. Early on, the stories of Vivienne Groom and Karina Moon helped give a vivid picture of the scale and human impact of the scandal. Josh’s interview with Davina Ware brilliantly illustrated the sense of betrayal and humiliation felt by many carers unexpectedly hit with overpayments: decent, honest people, for whom caring was an act of love and duty, suddenly being treated by the DWP like grifters and criminals. My interview with Clemency Jacques, who DWP officials threatened with prosecution over an accidental £2,600 overpayment was gobsmacking: her grotesque treatment by DWP anti-fraud officials felt almost like a mafia shakedown. Accompanying Andrea Tucker when she successfully challenged her overpayment at a social security tribunal in February was a high point – and gave us a real sense of optimism that change might be coming. Josh’s recent powerful interview with unpaid carers Guy and Oxsana Shahar reminded us, sadly, that for all the current government’s clear commitment to changing things, carer’s allowances injustices continue, and will continue to do so for the immediate future.

What do you think of the attention your investigation has been getting? Did you expect it? 

I wasn’t expecting it to get the attention it did. I mean, it’s about unpaid carers, right, and no-one cares about carers! Seriously, we were personally appalled by it but weren’t sure whether it would catch alight as a story. Crucially our editors backed us: they were clear this was exactly the kind of story the Guardian should cover. It wasn’t obvious at first whether it would get any political traction – though Ed Davey and Liberal Democrat leader, and Labour’s Stephen Timms, the former chair of the Commons work and pensions select committee (and now the minister for social security and disability) definitely “got it” early on and were very supportive. A big, unexpected factor was the huge public interest in the Post Office Scandal, which provided a neat frame –  a distant  and cruel bureaucracy crushing the “little people”  – for the public to understand what had gone so badly wrong with carer’s allowance. 

You recently won the prestigious Paul Foot Award for investigative and campaigning journalism for your reporting on the Carer’s Allowance Scandal, how did that feel? What did it mean to you?

It felt amazing! And it is still sinking in! 

How has covering this story made you think about care in your life? How do you think about your potential need for care in the future or that you might become a carer?

Speaking to, and spending time with, unpaid carers reminds you how crucial what they do is. That sounds glib, in a way, but it’s true. During the investigation I was very struck by the disconnect between the DWP, which seemed to take carers for granted and saw carers allowance as a slightly irritating financial transaction, and unpaid carers, whose main motivation was not profit and loss, but love and care. I already see unpaid care in the lives of my family and friends and it’s going to play an increasingly bigger role, not just for me but for society as a whole, and that’s something policy makers who are thinking about the future of social care need to take very seriously.

How do you see the carer’s allowance scandal story evolving? What would you like to see?

The government set up a review of carer’s allowance overpayments in December, which reports in the summer. Hopefully, that will remove many of the obvious flaws and injustices. But it’s not over. We know hundreds of thousands of carers are repaying huge overpayment debts that could have been prevented from happening had the DWP shared  – or even properly checked on – the earnings information it regularly received.The DWP’s default position is that, ultimately, overpayments are the fault of carers alone. Knowing what we know now about its handling of carer’s allowance, I’m not sure that position is tenable. There is a moral case, at the very least, both for writing off carer’s allowance debts that were enabled by DWP omissions and mistakes, and overturning many of the hundreds of fraud convictions. 

How can unpaid carers help you in your continued investigations? 

Please tell us about your experiences! It was only by talking to carers about their experiences that we were able to fully understand – and develop – the story. A secure and confidential way to contact us is through our recent call out to readers. We’ll get in touch.

What can the people who aren’t yet carers do to help you and this story get the attention it deserves?

It was striking how many of the people I know, who didn’t know much if anything about unpaid carers or the benefit system, were stunned and outraged by our investigation findings. So share it with your friends! It’s a story about carers; but much more than that it’s a story  for our times about fairness and injustice.

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To every journalist, producer and editor who covers unpaid carers, and thinks to include us in their stories – thank you!

Please keep going, we need your help to get the attention, change and help we so desperately need. The work you do is important but confronting, and probably quite tough to pitch to your editors when attention and click through rates are the only commodity that matters, and no-one cares about carers, as Patrick says.

I know journalists hate being the story, but it felt right to recognise your efforts.

Thank you again 🙂

P.S: I have some ideas on how to make more people care about carers (I work in PR, can’t help myself) so get in touch – I won’t pitch you a press release, I promise.