'It is all about raising the profile of carers'

It was early evening, and Rebekah Zammett was about to leave her north Oxfordshire home to work a nightshift looking after teenagers at a local residential institution.

But then a thud came from the bedroom of her son Jack, who has cerebral palsy.

The then eight-year-old was having a seizure - one of dozens he experienced every day. Critical questions ran through her mind as his convulsions ebbed and flowed.

"Has it really ended? Is this one for the ambulance? Do we need to administer emergency medication," remembers Rebekah.

"No-one knows his medical history and the intricacies of his needs like I do. Not even my husband."

As the anxious minutes ticked by, Rebekah was acutely aware that people at her workplace - both staff and teenagers - were relying on her to turn up for her shift.

"I just felt really torn," she says. "The staff caring for the children at the home wouldn't be able to clock-off until I got there. And they would have done at least 12 hours with kids who had very high-level, complex needs.

"But if I did go to work, how on earth could I concentrate on that?"

Thankfully, Jack's seizure didn't require hospitalisation, and after waiting an hour to satisfy herself that he was stable, Rebekah went to work.

But there's been no let up in the pressure: Jack, now 13, needs help to eat, dress and go to the toilet, and must attend many regular hospital appointments.

This year's Carers Week, which is currently running across the UK until Sunday, 12 June, aims to throw a spotlight on the pressures facing the estimated 10.5 million people who are now supporting an elderly, disabled, or seriously ill relative or other loved one.

Charity Carers UK, one of the main organisers of the annual event, says that this 10.5 million figure equates to one adult in five having such unpaid caring duties.

For many, like Rebekah, it can be very tricky to balance this work with their paid, day job.

Her breaking point came when a previous employer wanted her to work extra hours to make up for the time she had taken off to care for Jack as he recovered from major surgery.

"I just couldn't go back in there knowing what they thought of me… that I've taken liberties. I felt completely broken." She quit the next day.

An increasing number of carers are making the tough decision to leave the workforce.

Carers UK says that just before the pandemic hit, 600 people a day were quitting work to look after a loved one. That figure is thought to be even higher now.

However, falling off the work-carer tightrope can have devastating financial consequences, especially in light of the current cost of living crisis.

That's been the experience of Kim Harry-Young from Newport, Wales, who had to stop working as a nightclub DJ three years ago to care for both her autistic 16-year-old son Logan, and her wife Michelle, who suffers from epilepsy.

"Financially it's a problem," says Kim. "You have to cut your spending."

She is relying on benefits to survive. But it's not just the money she's missing.

"I miss [performing] in front of people, being with people. But it's impossible to go back to work. You do feel alone sometimes, because it's just you doing it."

To compound matters further, Kim developed breast cancer since quitting work - but is now in remission.

"We're lucky," she says. "Family and friend support is everything. Without them, I don't know what we'd do."

Carers UK says that around 2.2 million carers are now worried about being able to cope financially, and the Joseph Rowntree Foundation reports a quarter of carers have slipped into poverty.

But it's not just the carers who suffer if they're not part of the workforce. The wider economy takes a hit as well.

An academic study in 2018 estimated that the annual cost of carers leaving the workforce was about £2.9bn in benefit payments and lost tax revenues.

Furthermore, the UK is in the grip of a recruitment crisis. There are now more job vacancies than there are unemployed people to fill them. Disruption in the travel industry, hospitality sector and healthcare are all blamed on chronic staff shortages.

The economy can ill-afford to have more people leave the workforce.

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The UK government and campaigners agree that flexible working and time off to deal with emergencies, are key to making workplaces more carer-friendly. But plans to improve those rights failed to make it into the legislative programme announced in May.

Some companies have already taken matters into their own hands.

Big firms like Natwest and British Gas are part of the Employers for Carers network, which currently comprises 245 member organisations from the public, private and voluntary sectors. Together they aim to boost carer-friendly employment policies.

Insurance giant, Aviva, is part of the network. Its 22,000 staff can take up to 35 hours per year paid leave to deal with planned caring events and 35 hours for emergencies. The company also actively encourages flexible working to fit in around caring duties.

Danielle Harmer, the company's chief people officer, believes most big companies should be able to introduce similar policies.

"I don't think you do it just because it makes commercial sense," she says. "But of course it makes commercial sense to keep your talented people, and enable them to work out [the balance between] caring and work.

"If someone leaves, you have to replace them, maybe using a search firm and there are costs associated with that." She also estimates it can take up to six months for replacements to get fully up to speed.

"The retention of talent is a strong business case for what is actually doing the right thing,"

Meanwhile, Rebekah Zammett continues to care for her son Jack, and is balancing that with studying for an Open University degree from home.

She's adamant that the UK must place more value on its army of carers and the contribution they make.

"At the moment you're seen as low-skilled, and not a particularly desirable person to have around, " she says.

She wants carers to be protected by equality legislation, and is urging the introduction of a new government payment for carers taking time off to deal with emergencies.

"It's about raising the profile of carers and saying 'these people are really valuable to our workforce, they are committed and do care about their jobs'. Investing in [them] is investing in future generations."

A UK government Department of Health and Social Care spokesperson said: "Carers play a vital role in our communities and we recognise their hard work and the huge contribution they make.

"We are investing up to £25m to work with the sector to kick start a change in the services provided to support unpaid carers - which could include respite and breaks, peer group and wellbeing support, and new ways to combine these to maximise their impact."