One morning in January, Gill Willis checked her bank account. She had expected to see her usual income, but instead she found a huge chunk of cash had been paid in without any explanation.
At first, she was thrilled. It was only when Gill read in the news that thousands of people who claim Employment and Support Allowance (ESA) had been underpaid for years, that she started to make sense of things.
That’s because Gill’s £3,500 wasn’t a windfall, it was a rebate. After years of administration errors by the Department for Work and Pensions (DWP), Gill was receiving money she should have had all along. “I would have been shot if I ever treated a client as I have been treated by the DWP,” the former financial analyst says.
The National Audit Office estimates as many as 70,000 claimants of ESA, which is available to people who have become too unwell to keep working, have been affected by miscalculations, a blunder that will cost the government hundreds of millions to rectify.
The errors related to people who may have been entitled to income-related ESA (which is not taxable, and means tested) but were instead only awarded contribution-based ESA (which is taxable and is not means tested), a potential difference of between £73 and £186 per week.
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Since its inception in 2008, the benefit has been plagued by missteps and IT problems, failures that have directly affected claimants – many of whom have serious lifelong conditions, such as multiple sclerosis (MS), rheumatoid arthritis, cystic fibrosis, as well as terminal cancers and motor neurone disease (MND).
The errors have caused confusion, distress and have even risked worsening symptoms for those living with serious illnesses. Some claimants will never receive the money they are owed, as they have passed away in the time it has taken the government to rectify the problem.
Daniel Vincent of the Motor Neurone Disease Association (MNDA), says the mistakes can have a big impact on the lives of the terminally ill. “When you know that you have limited time left with your family, the last thing you want to be doing is fighting a battle with the DWP.
“It’s not how people should be being forced to spend their last moments.”
Gill Willis, 62
“Imagine having two bottles of vodka and then trying to walk. That’s what it’s like,” 62-year-old Gill from Bicester, Oxfordshire, explains.
Gill lives with what is known as secondary progressive MS, which affects her balance. She no longer works and lives on ESA, alongside other benefits and an income from a private pension.
Gill’s problems with the DWP began when her disability allowance was switched to the new Personal Independence Payment (PIP) in November 2016. Many people, like Gill, are able to claim ESA and PIP at the same time.
When her allowance switched to PIP, the DWP assessed Gill’s overall income. Officials decided that because of her income from a private pension, she was entitled to a much lower rate of ESA. Meanwhile, the taxman decided her private pension income should be taxed, contradicting Jobcentre advice.
It was a double whammy. HMRC lowered her personal allowance and the DWP made additional deductions from her ESA to make up for what it described as “overpayments”. It meant that, on a monthly basis, Gill was £300 worse off.
It was heartbreaking, I cried for days
She recalls losing around £4,000-5,000 in total through the lower allowance and deductions. “It was heartbreaking, I cried for days,” Gills says.
In the meantime, to secure their finances, Gill and her husband moved to a cheaper property in Oxfordshire to free up money. “We had no choice, or else we’d have been on the poverty line and going to foodbanks.”
The extra cash paid for essentials, such as a stairlift and wet room in the new property. In January 2018, Gill noticed that the DWP had credited her bank account with £3,500. She also noticed her ESA had increased by £219.
“It was totally unexpected,” Gill says. “They’ve given it to me, taken it from me, and then taken it again. You can’t go back five months later and say ‘I have made a mistake about the mistake, I take it back again’.”
A letter which arrived a few days later detailed the new payment but did not provide an explanation. “I haven’t got a letter to say ‘we made an error and that this is right now’,” she adds. “So I just feel - what if there’s been another mistake?
“I’m scared they will take it away again.”
A DWP spokesperson told HuffPost: “We’ve apologised to Ms Willis, updated her entitlement and also backdated her payments.”
Julie Parry, 53
Julie Parry was diagnosed with MS in 2005, and two years later was assessed as needing financial support. “I’ve got relapsing remitting MS which means you can have a relapse and then you might not have another one for a few years,” she explains.
The 53-year-old from Nottinghamshire needed to give up her job on the checkouts at Morrisons and apply for what was then called Income Support and Incapacity Benefit.
“In 2007, I was awarded a claim for life – I was told that my MS would never get better and if anything that it would get worse,” she says. “My biggest problem is my balance and weakness in my left leg. I can’t walk too far and I use a stick to get about.”
The man scratched his head and said ’I don’t know what you’re doing here?'
In 2013, when her benefits changed to ESA, Julie was told she was fit for work, a decision subsequently overturned by a magistrate.
However, it was revealed last year after a routine Jobcentre appointment that the DWP had been paying her as though she was fit for work between 2014 and 2017.
“The man scratched his head and said ‘I don’t know what you’re doing here?’” Julie says. As a result of the discovery, she received a back payment of over £3,000 for this error.
“We had a phone call to say that they thought I had been misplaced,” she says, recalling her relief at the decision.
But Julie’s hopes that her problems with the DWP had come to an end were quickly crushed. Within months, she was told that her status was to be reassessed once more.
Without any explanation, Julie was summoned to an assessment day in Nottingham and was subsequently declared fit for work again.
“You just feel it’s almost like you’re scrounging,” Julie says of the decision.
I'm just waiting for another letter to come through saying its all happening again
Having been told the ruling was valid, despite an appeal, she was forced to consider sending the case to tribunal, before the DWP stepped in and said her claim had been further reassessed and that she was, once more, considered not fit for work.
As with Gill, there was little by way of an explanation.
“It’s very stressful, it makes you feel like you’re almost like a beggar, but it’s money I’m entitled to,” she says. “I’m just waiting for another letter to come through saying its all happening again.”
Due to her experience, Julie did not give permission for her details to be shared with the DWP, but a spokesperson said: “We’re committed to ensuring that disabled people get the full support that they need.”
What is Employment and Support Allowance?
If you’re ill or disabled, Employment and Support Allowance (ESA) offers you financial support if you’re unable to work; as well as personalised help so that you can work if you’re able to.
How much ESA you get depends on your circumstances, such as income; the type of ESA you qualify for; where you are in the assessment process.
Premium payments exist for those with illnesses and with severe disabilities.
There are currently an estimated 1.5m recipients of all forms of ESA.
How much do you get?
After an assessment period, if you’re entitled to ESA, you’ll be placed in one of two groups and will receive:
- up to £73.10 a week if you’re in the work-related activity group
- up to £109.65 a week if you’re in the support group
If you’re in the support group and on income-related ESA, you’re also entitled to the enhanced disability premium at £15.90 a week.
You may also qualify for the severe disability premium at £62.45 per week.
Sources: Gov.uk and HM Parliament
Laura Wetherly, Policy Manager at the MS Society charity, said many people with the disease “have told us that problems with the benefit mean they’re struggling to get the help they need.”
But it is not just people living with MS who have been affected by the problems with ESA. The situation with underpayments also affects those with terminal illnesses, and in some cases, people facing just months to live.
According to the Motor Neurone Disease Association (MNDA), MND sufferers are among those who are likely to have been affected by problems with ESA.
An estimated 1,900 people with MND have received ESA since its introduction, according to government figures.
The charity has estimated the average cost of living with MND to be around £12,000 per year but this could rise further for some people with the disease. The high cost of adaptations to homes, round-the-clock care and, eventually, residential nursing, means every last penny is crucial.
But with the nature of conditions like MND, many people affected by the errors will tragically never see payments they were entitled to.
When you've limited time left with family, the last thing you want to be doing is fighting with the DWP
“Sadly, in the case of MND, a lot of people affected by the underpayments will have subsequently died as many of the affected cases are up until about 2014,” Vincent of the MNDA says. “So a lot of people won’t actually receive the redress.
“The individual who is affected by those errors in many cases won’t be around to receive an apology and compensation they should have got.
“That reflects the reality of living with these conditions while trying to cope with the slowness and inflexibility of the bureaucracy around it.
“For people living with MND, time is precious,” Alex Massey, MNDA’s policy manager adds. “Delays of any kind can impact on people who ultimately might not want to go through the process of challenging it.”
As with MND, those with other terminal illnesses have also been affected by delays, described as “completely unacceptable” by end of life charity Marie Curie.
“Delays and underpayments are completely unacceptable for people who have been diagnosed with a terminal illness, but these issues are only the tip of the iceberg,” the charity’s Scott Sinclair says.
“As it stands the system excludes many terminally ill people from the fast-track support they desperately need by only offering it for those who have just six months left to live.
“Defining terminal illness as only six months from death is an arbitrary cut-off that leaves many who have been diagnosed as terminally ill without proper support.
“Until the DWP is willing to re-examine how it defines terminal illness, we will continue to see people approaching the end of their lives being mistreated by our benefits system.”
The DWP told HuffPost it has “committed to completing the repayments during the course of 2018/19.”