Carers in the UK are calling on the government to provide more support as new research finds that nearly half are struggling with their mental health.
It’s thought that there are as many as 8.8 million carers in the UK with more than 800,000 in London alone.
As part of Carers Week, charities and carers have reiterated complaints that there is not enough support financially or emotionally for the three in five people who will take on this role at some point in their lives.
Syreeta Challinger, 37, is a Londoner whose “world just turned upside down” when her husband Rob Mackenzie, 42, suffered a near fatal brain haemorrhage and stroke while the pair were holidaying in Sydney in September 2014.
She told the Standard that doctors prepared her for the worst. “They’d prepared me that Rob wouldn’t pull through the operation and if even if he did, he probably wouldn’t last more than a few days in intensive care," she said.
Suffering with limited mobility, aphasia - an impairment of speech - along with “life-threatening and extremely scary” seizures, the pair had no choice but to move their lives from where they were working in Hong Kong to Lincolnshire, so that Mr Mackenzie’s parents could help with his 24-hour care needs. “It was very obvious that our life before was over,” she said.
Having worked in fashion, Ms Challinger "hit rock-bottom” when she struggled to find anything other than minimum wage jobs in their new environment. “Not only did we lose our jobs, our identities and our home,” she explains. “We lost our sense of purpose as well because without work, we were adrift.”
Using their own experiences, the 37-year-old set up Moments of Sense and Style (MOSS), a lifestyle platform revealing their journey and selling artwork produced by Mr Mackenzie. Although their business provides the flexibility they need to cope with their new way of life, the couple have found difficulties as Ms Challinger’s hours are limited so that they qualify for the Carer’s Allowance. Receiving £66.15 a week, she says that “the benefit system isn’t a form of living, it’s more existing”.
A report by Future Care Capital has found that the pressures of unpaid caring impact finances as a result of having reduced work hours and increases in spending. Ms Challinger and Mr Mackenzie were initially living off their savings but turning to government aid has left them feeling like a “burden”. She says “it doesn’t feel like a system that there’s to help you.”
The report also revealed that nearly half of carers experience negative effects on their health with 40 per cent reporting increases in stress, anxiety and depression.
Lorraine Gannon is mum to 15-year-old Ben who has quadriplegic cerebral palsy and requires help changing and feeding. “Mentally it’s a challenge,” she explains. “You’re in the same routine looking after someone day after day - I have back problems and my lower back takes a lot of stress just changing Ben’s clothes.”
Like many, Ms Gannon found that working full-time while caring was a challenge and “something had to give”. She was able to start her own property business but says there are many families who find it “almost impossible” to balance caring and work.
Nearly five years later, Ms Challinger and Mr Mackenzie are settled in Frome, Somerset with a baby on the way. The mum-to-be is open about how she’s experienced PTSD and anxiety as a result of her husband’s accident: “I have no shame in saying that it’s affected my mental health,” she says. “You’re grieving for the life you had before and the life you thought you were going to have.”
Socialising for the married couple has changed with Mr Mackenzie’s condition; dinners with friends have turned into lunches and adventurous holidays replaced with quiet nights in. Research has found that carers tend to have less time for themselves and spend less time with others - something that freelance Facebook advertising consultant Laura Moore understands.
“I am very isolated because I’m a carer,” she explains. Mum to 10-year-old William, who has quadriplegic cerebral palsy, epilepsy and visual impairment, the 42-year-old now lives a “very different” life to her friends.
Running her own business has given Ms Moore some of her identity back while allowing her to support her son and his needs - which sometimes means attending as many as seven different appointments a month - but comes with its own pressures. “I’m no longer just a carer,” she says. “Working for myself means I now have two full time jobs - my actual business and the full time job of juggling William’s care”.
She tells the Standard that she doesn’t feel supported by the government and benefits on offer: “When I did qualify, the Carer’s Allowance wasn’t enough to financially support us, and now I don’t qualify I am losing out on other things such as equipment grants.”
“My physical health is shocking,” she says. “There’s no support in terms of childcare to allow us to work in school holidays. No support for our mental health.” As part of Carers Week, Carers UK has released research which finds that one in three unpaid carers in the UK say that they are always or often lonely.
Statistics show that the economic value of carers’ work is £132bn a year. A Department for Work and Pensions spokesperson says that the government “values the vitally important role carers play in our society” but that “Carer’s Allowance is not intended to be a carer’s wage or a payment for the services of caring”. The government increased the benefit in 2010 and is set to spend £3.4bn on Carer’s Allowance in 2023/24.
Despite this, Chief Executive of Carers UK, Helen Walker insists that “many unpaid carers who rely on the Allowance face a never-ending struggle to make ends meet” as it’s the “lowest benefit of its kind”.
There are “1.2 million carers living in poverty, many of them forgoing essentials such as food and heating. Being able to do small things outside of caring responsibilities is sometimes out of the question,” she says. The charity believes it’s time for the UK to raise the Carer’s Allowance to match the increase made by Scotland in 2018: “It’s high time unpaid carers’ enormous contribution to society was recognised."