Our second NHS: Britain’s invisible army of unpaid carers need your help

On June 4 this year, Maja Spalding walked into the kitchen of the family home in Salisbury and told her mother Helen that she wanted to die. Three months of lockdown, without the farm college, friends, activity groups around which her life revolved, had left 22-year-old Maja desperate. 

Meanwhile for Helen, her role as a carer for her beloved daughter had taken on even more Herculean proportions than before. “It sounds cold-hearted, but I’ve been saying for years that I’m her project manager. I love her, and I do everything with her best interest,” says Helen. “My life is secondary to hers and in lockdown I’ve been there for her from the moment she wakes up in the morning until the point she decides to go to bed.”

Maja was only weeks old when Helen and health workers realised that her development wasn’t as it should be, but it wasn’t until she was eight years old that she was finally diagnosed with Kleefstra syndrome, a rare genetic disorder characterised by intellectual disability. It is caused by a deletion from near the end of chromosome 9. As a result, Maja has always been to special schools and will never be able to live independently. Raising Maja has been a much more consuming job than parenting her older son, says Helen, and without the support network she relied on to take some of the weight, which has been unavailable to her because of Covid-19 restrictions, it has been harder than ever. 

“She’s prone to bouts of low mood. Until now, we’ve always been able to manage them, but it’s been a complete nightmare these past months because she isn’t able to understand the rules and what’s going on,” says the 49-year-old.

There are an estimated 13.6 million unpaid carers in the UK, more than 4.5 million of whom started this year, due to the pandemic. For many the additional support services they have relied upon stopped overnight at the start of the first lockdown, and are yet to return to normal. 

Over the summer, the weekly Clap for Our Carers initiative may have captured the public imagination, but it was aimed primarily at NHS workers, and unpaid carers like Helen feel they have been forgotten about. It’s estimated that the UK benefits from £132 billion worth of unpaid care; the equivalent of a second NHS, yet the enormous pressure on this invisible army of dedicated individuals receives relatively little attention. The cost of being a carer has only increased during the pandemic with extra food, heating and activities to be found. Unpaid carers in Scotland received an extra £230.10 through a special one-off Coronavirus Carer’s Allowance Supplement in June, but there was no equivalent consideration in England. 

“There’s this assumption that we’ll just go on. But what happens if I get coronavirus?” asks Helen.  

Questions like this and others are what Carers UK – one of four charities supported by this year’s Telegraph Christmas Charity Appeal – has been trying to help its 33,000 members with during the pandemic. The charity provides support and advice for people who care for others, whether full or part-time; a carer can be anything from someone who looks after an elderly or sick relative, right through to someone who will give a few hours a week of emotional support to someone with a mental health problem. They can be parents with a disabled child or the son or daughter of someone living in a care home.  

As well as a helpline and website that offers both emotional and practical support about finances and tax credits, employment rights and a range of services available to carers, Carers UK also campaigns on behalf of the needs of carers and is a vital way of connecting carers with each other through its support groups and online forums. 

The charity has pioneered innovative technology to support carers, such as with its app, Jointly, which allows carers to communicate through group chat, and share notes about which care tasks have been completed. Families could use it, for example, to ensure someone has been in touch with Mum every day.

The pandemic, unsurprisingly, has seen a massive spike in demand for the charity’s services. Calls to its helpline increased by 80 per cent and visits to its online advice pages went up by 600 per cent. 

“It hit us like a truck,” says chief executive Helen Walker, who joined the charity two years ago. Even before the coronavirus, an ageing population and the changing nature of family was creating greater need to support carers. The charity’s plan for 2020 had been strategic review and building a vision for 2025; its 60th anniversary year.

Instead Carers UK found itself having to interpret what the new rules and regulations of lockdown would mean for carers and provide its members, many of whom would be shielding to protect their loved ones, with essential information, advice and support. 

“We’ve had to cover a huge range of issues. Everything from how do I get my supermarket shopping, to advising carers how to talk to their employers as a result of their caring responsibilities increasing. Working from home isn’t an option if you are caring for someone who would usually be in respite care during the day,” says Walker. 

“We also support the most vulnerable, who are shielding; people in their 80s or 90s who are looking after partners or an adult disabled child, both of whom would be in a high-risk shielding category. How do you support them when they can’t get out?”

Carers UK immediately quadrupled its helpline service, which is outsourced and manned by trained staff, introduced its Care for a Cuppa initiative where carers could meet for cathartic Zoom chats, as well as online forums where carers can share what’s on their mind, day and night, with ­people who understand and can provide support. 

“It became very obvious to us that our website had quickly become the place to go,” says Walker. “We were updating it four times a day with specific guidance checked with government departments to address what carers needed to know about Covid-19.”

Mindful also that a lot of carers are elderly and not online, the charity also wrote letters to its members.

“We had to make sure that we weren’t excluding those who were by definition the most excluded at that moment,” says Walker. 

While a small amount of the charity’s income comes from statutory funds for specific pieces of work in England, it relies on voluntary donations from individuals, events, corporates and trusts.  

As mass participation events such as the London Marathon were cancelled and community groups could not meet in person and raise money in the usual way, Carers UK, like so many charities, saw an alarming drop in donations.

More money is desperately needed to keep funding its helpline and other essential work, which is why Walker believes the Telegraph Christmas Charity Appeal is vital. 

“When you’re struggling with your finances, especially when you’re also managing an intense caring role for a loved one alongside, it can make you feel helpless and alone. But £20 means that one of our expert advisers can be there for four carers, helping them access vital financial support,” she says, “while £50 helps us to train a volunteer and equip them with resources to support other carers who are struggling managing during this pandemic.”

Another problem is that many unpaid carers don’t realise the benefits they qualify for. 

Walker hopes the Telegraph Christmas Charity Appeal will raise the profile of carers and help people to realise that they have become a carer, even if that’s not how they perceive themselves or would like to be perceived. 

“A lot of people don’t self-identify as a carer because they’re just looking after their mum, dad or spouse, because that’s what you do,” says Walker. “And maybe if they give themselves that title they can then ask for help and seek out financial support for flexible working.”

Emily Holzhausen OBE, director of policy and public affairs at Carers UK, led the charge in gathering information from the charity’s members about the challenges unpaid carers were facing during the pandemic. Given the PPE shortfall early in the crisis, unsurprisingly about 22 per cent of Carers UK members reported they were worried about the infection risk of care service staff coming into their home; as a result, many people stopped using such ­services, leaving them more isolated than ever. 

“One of our members said she hadn’t spoken to another adult for weeks. She hadn’t had a conversation, as her relative is non-verbal,” says Holzhausen. 

For Della O’Brien, Carers UK has been a lifeline. The 53-year-old cares for her husband Jim, 63, who had a stroke in November last year. 

Overnight they went from both working full time to Della becoming a full-time carer. They now live on just £169 a month, Carer’s Allowance and other benefits. All their savings were used to pay for adaptations to their house in Widnes when Jim came out of hospital in January. 

They rarely go out as it’s a struggle to move Jim, who suffered paralysis to his left side. Della, meanwhile, is exhausted physically and mentally. She feels increasingly isolated as her friends struggle to know what to say. 

Not only did Carers UK advise her on how to claim Carer’s Allowance, but during the pandemic she has attended regular Care For A Cuppa sessions and uses the charity’s online forum. 

“I’m a dinosaur with technology, but Carers UK patiently taught me how to use it,” says Della. “It’s brought relief from isolation and knowing others are in the same boat helps. At night it’s a comfort just to read through some of the other carers’ experiences on the online forum too.”

The success of the online meetups for carers means it’s a service Carers UK will continue beyond the pandemic. However, what carers need most at the moment, says Walker, is for respite centres to reopen, for there to be an increase in the Carer’s Allowance and for local authorities to support carers in the way they would in normal times. 

A research report by Carers UK last month found 81 per cent of unpaid carers are still providing more care than before the first lockdown. “We all know it needs to happen in a socially distanced safe way. It can’t be at full capacity, but it needs to be at some capacity,” says Walker. 

Before the pandemic, Terry Kirton’s 93-year-old father Rod would have eight hours of respite care a week. At the moment he gets just one hour, when a volunteer comes to have a cup of tea with Rod while Terry grabs a moment to himself. 

“It’s just been exhausting hard work,” says Terry on the phone from Monmouth. “I wouldn’t change it, but I don’t think people realise how hard looking after an elderly relative is.”

He had to quit his job as a duty hospital manager in London to move in with his father after he could no longer cope independently. Terry has cared for him round the clock since March 2016.

“As much as I love it, I have seen a huge change in my life. My income has dropped rapidly and the isolation I feel can sometimes be quite suffocating. It sometimes feels as if you are just battling on with no support, but Carers UK provides an important voice for carers who so often go unnoticed.”

Terry has been involved in the charity’s Fairer for Carers campaign, last year delivering a letter signed by more than 5,000 carers to the Department for Work and Pensions, which called for an increase in Carer’s Allowance.

The Carer’s Allowance is the lowest benefit of its type, capped at £67.25 per week. During this crisis 100,000 unpaid carers have had to rely on a food bank. Terry admits that the pandemic has pushed him financially to the brink. 

“The worry is how do we afford things,” he says. “The lighting and heating is on all the time, there’s extra food to be eaten.”

They are surviving on Rod’s pension and Terry’s Carer’s Allowance. “Some people spend £20 on lunch, but I spend that on a week’s shopping. I’ve learnt to make a little go a long way,” he says. 

With services shut, many carers have had to find the resources to keep their loved ones occupied out of their own pocket. Helen Spalding created a whole new timetable for Maja that included Joe Wicks workouts in the morning, Zoom chats with college friends at lunchtime and singing along to Andrew Lloyd Webber’s The Shows Must Go On! YouTube channel in the afternoon. 

“Her college put together a virtual learning area and we were printing off work and activity books,” says Helen. 

Still, she admits to feeling angry about her situation. “It felt like every TV presenter or radio DJ was talking about how much time we’ve got on our hands lately. I just thought, ‘Who are you?’ I was so jealous, even of parents home schooling mainstream children. I used to sit here and think, ‘Have Maja for a day, and see how you feel then’,” she says honestly. 

In the hard moments, she rewatched Carers UK videos for advice on how to manage, including being aware of the importance of regular short breaks. 

“They give you ideas and remind you that sitting down for five minutes and listening to a really great piece of music can really help. It doesn’t necessarily have to be a day out. It can be really tiny and I needed reminding of that a few times.” 

She worries about the effect of the second lockdown on Maja’s mental health. Before the coronavirus, Maja’s favourite shows were Postman Pat and Bob the Builder, but Helen was amazed to see her start watching the news. 

“The problem was that she struggled to understand it, so when Boris Johnson mentioned lockdown easing, Maja thought that’s it, it’s over. I had to try to explain to her that we still couldn’t go out.”

She now tries to shield Maja from the news. And after three months of conversations with her GP and social worker, Maja was finally given antidepressants in September. But with winter approaching, getting outside for mood-lifting walks will be harder.

Thinking back to that day in June, Helen says: “If she was slightly higher functioning, I very much doubt whether she would still be with us now.”

She also worries about her own mental health, “because it’s just all-consuming. It’s physical and it’s ­mental.”

What exactly is a carer?

A carer is someone who provides unpaid care and support to a family member or friend who has a disability, illness, mental health condition or who needs extra help as they grow older.

What’s the likelihood of becoming an unpaid carer?

You are just as likely to care unpaid for a loved one as own your own home. The average person can just as likely expect to become an unpaid carer for someone who is older, disabled or seriously ill – something that few people are prepared for.

 Many of us don’t expect to become an unpaid carer but the reality is two-in-three of us will do it in our lifetimes.

 In the UK, the average person has a 50:50 chance of caring by the age of 50 – long before they reach their retirement age. On average, women can expect to take on caring responsibilities over a decade earlier than men.

 Half of all women in the UK will become a carer by the age of 46, compared with half of men, who can expect to become a carer at 57. 

Caring by Numbers

 Carers UK estimates 4.5 million people in the UK have become unpaid carers during the Covid-19 pandemic. This is on top of the 9.1 million who were already caring before the outbreak, bringing the total to 13.6 million.

 One-in-seven of the national UK workforce is an unpaid carer, Carers UK estimates.

 Every day 600 people in the UK give up work to care for older or disabled relatives. 

A 2019 survey of 7,000+ carers shows more than half (53 per cent) of all carers are unable to save anything for retirement.

 100,000 unpaid carers had had to rely on a food bank during the pandemic.

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