‘All we’re asking for is something to live on’
The financial burden of being a carer can be devastating – and lockdown has made it worse, learns Paddy Magrane ‘Over half the carers we spoke to are unable to save for the here and now, let alone retirement’
When Aron and Judith McKee’s daughter was born with a serious condition, it was quickly apparent she was going to need lifelong support. “Grace has Tetralogy of Fallot,” says Aron, “a combination of four very serious congenital heart defects. She had heart surgery when she was just 12 days old and another operation when she was three. A further issue, a rare genetic disorder called Charge Syndrome, left her also requiring a tracheostomy.”
The couple, who live in Northern Ireland, realised that most of the care Grace required would have to be provided by them. So Judith decided to give up her £30,000-a-year job in management to become a full-time carer, while Aron took on a part-time role in the local supermarket so he could support his wife.
Grace is now nine years old and the care she needs is as complex and timeconsuming as ever. She is usually asleep by 9pm, but the work doesn’t stop then. “Grace’s care is just one aspect of life,” says Aron, 40. “Our other daughter, Rebecca, 16, needs support, and there are additional household duties to attend to.” Judith and Aron must also prepare all of Grace’s equipment for the following day. The couple rarely get more than four or five hours’ sleep. Lockdown, which meant Grace’s school closed, has made life even harder.
“It’s been completely mentally draining,” says Aron. In addition to a perpetual state of exhaustion, both he and Judith have had what they describe as their “downs”, and the couple have been prescribed antidepressants by their GP. Aron has also recently been diagnosed with type 2 diabetes, and been told that his condition could worsen if he doesn’t rest properly. But resting is impossible with Grace at home.
Caring has taken a massive toll on their lives. But despite the relentless, wearing nature of their 24/7 duties, Judith receives just £67.25 a week Carer’s Allowance.
“It’s the lowest benefit of its kind,” says Ruby Peacock, the head of policy and public affairs at the charity Carers UK, “a paltry sum for parents who are working a minimum of 35 hours and a maximum, in some cases, of closer to 90 hours.”
Peacock believes that the benefit not only fails to recognise carers’ contributions, but it also risks leaving them in a financially precarious position.
The charity recently published Caring behind closed doors: six months on, a report which looks at the continued impact of Covid-19 on unpaid carers. The findings of the survey, which takes into account the views of 6,000 carers, are shocking. “We believe that 1.2million carers were living in poverty before the pandemic hit,” says Peacock. “Since then, the problem has deepened. In fact, in the early days of lockdown, carers were twice as likely to use foodbanks as the general public.”
Lockdown has seen the McKees’ bills soar. “We have the extra costs of heating the house to keep Grace warm in the colder months, as well as increased electricity bills because we’re always charging equipment like her monitors, suction machines and overhead hoists.”
Chris Bennett, the operations manager at the MND Association, paints a similar picture of spiralling expenditure among the carers he works with. “There are around 5,000 people in the UK with MND [motor neurone disease],” he says. “We’ve found that families spend an average of £12,000 a year extra on costs associated with caring, such as food shopping for special diets, insurance, transport, utility bills, home adaptations and mobility aids.”
With so many services closed during lockdown and carers forced to provide even more support at home, these costs have risen sharply.
At the same time, earning opportunities have decreased. The charity conducted a survey of MND carers last year. “Of those we spoke to,” says Bennett, “a third said they spend more than 100 hours a week caring. Imagine trying to find time to earn a living, too.”
The final indignity is that carers can also all too easily find themselves caught in a benefit trap. “Half of those putting in 100 hours or more receive no benefit of any kind,” says Bennett, “because they happen to take home more – sometimes as little as £1 more – than the earning threshold of £128 a week for Carer’s Allowance.”
For the many carers who struggle to makes ends meet, the future looks bleak. “Over half the carers we spoke to are unable to save for the here and now, let alone their retirement,” says Peacock. Bennett believes that the financial pressure many carers are under is leading to unsustainable health issues.
“MND is a terminal diagnosis; it’s only going one way. There’s little in the way of treatment hope and those with the condition often see a rapid deterioration. It’s a huge emotional strain to cope with. Add to that the stress of extra costs and you’re talking about a massive impact on people’s mental health and wellbeing.”
Carers UK is calling for immediate financial support. “We want to see a Covid-19 supplement of £20 that matches what the Government has done for those receiving Universal Credit,” says Peacock. “We also want to see support that helps carers remain in their jobs. Specific packages such as carers’ leave and more carer-friendly policies, which could include flexible working, would make a huge difference.” The charity is also campaigning for a meaningful, long-term rise in Carer’s Allowance, which carers in Scotland have already seen.
For the McKees, the pandemic continues to present them with problems. Schools have reopened in Northern Ireland but the local education authority has told the couple that Grace cannot return. “We were informed that Grace’s tracheostomy tube means she’s at too great a risk of infection, even though the school has reassured us that the classroom has been adapted to guard against this happening.”
The local authority eventually relented, but there’s now an issue around arranging transport. The couple are currently in contact with their MP to move the matter forward. It’s a relentless, all-consuming fight on top of all their other responsibilities, and it’s left Aron and Judith with even less time for themselves and Rebecca.
It has been nine months since Grace stopped going to school. While she remains at home, the couple continue to see their household costs rise even as the rate of benefit they receive remains stagnant. “Judith has seen a rise in Carer’s Allowance of just £8.80 in eight years,” says Aron. “All we’re asking for is a basic living wage, something we can live on. The Government has given away millions in the furlough and selfemployed schemes, and supplemented other benefits, but we’ve seen nothing. We save the state millions by caring for Grace. Where’s our financial support?”
Carers UK is one of four charities supported by the Telegraph Christmas Charity Appeal. The others are Refuge, Macmillan Cancer Support and Cruse Bereavement Care. To make a donation, please visit telegraph.co.uk/appeal or call 0151 284 1927