In the UK one in every eight adults is a carer, with an additional 700,000 young people taking on caring responsibilities. Three carers discuss the need for recognition, more support and what changes they want to see after the pandemic.
While cities across the UK went into lockdown, unpaid carers faced another challenge: Caring for their loved ones with no support or respite. Along with support for carers themselves being unavailable at this time, vital assistance for the people they care for was put on pause, leaving a bigger gap in care provision to be filled and no help in sight.
The pandemic has brought a unique set of challenges for unpaid carers, from additional financial concerns to shielding for loved ones’ health and being unable to buy basic necessities due to panic buying and a lack of online delivery slots.
Without time at school, young carers have had no break from their caring situation, something Lilyrose has experienced over the last few months.
Lilyrose, 12, cares for her little brother who is autistic, she explains: “I help care for him, especially when he gets stressed: I try and help him but still stay out of his way.”
With support from young carers charity MyTime Young Carers Lilyrose is usually able to attend days out, allowing her respite and time to meet new people, something she is unable to do normally due to her responsibilities.
“Whenever I want to go out we ask William and if he says no then we can’ because we can’t leave him alone, really,” explains Lilyrose.
“When I go to the young carers group it’s really good because then I can go somewhere I haven’t been before, I like meeting new people.”
Getting to do activities like bowling with the group means Lilyrose can talk to other young carers who understand her situation more than her school friends do, she says: “I don’t think they’d be very interested to be honest, it’s nice to have this at home then I can think about other stuff at school.”
Going to school is a form of escapism for Lilyrose, but as lockdown came into place she often felt lonely. Now, Lilyrose takes part in video calls with other young carers through MyTime.
“Before we did the Zoom calls I was getting a bit stressed because you can’t talk to anyone or see people,” remembers Lilyrose. “We did those calls and I was really happy after. I think I’d be very stressed and very sad without them because there’s nothing to do otherwise.”
As the UK eases out of lockdown, Lilyrose would like to see the calls continue, but she also wants more opportunities for her brother to be involved with in the future: “It would be good if William could do something like the days out, sometimes when I go out he’s a bit annoyed that I get to go out and he doesn’t because he is autistic.”
Unlike Lilyrose, Mike, who cares for his wife who has MS, has been able to get out of the house thanks to their location, he reveals: “Generally speaking we haven’t been as badly affected as many, we’re in a rural location which has enabled us to still go out on walks in the area.”
While their ability to leave the house hasn’t been impacted, the support Mike’s wife usually receives for her condition was put on hold.
“My wife relies on physio therapy classes and oxygen therapy classes both of which have stopped,” explains Mike. “That has affected her both physically and mentally.”
Mike has arthritis but isn’t registered as disabled meaning the support from the therapy classes was not continued throughout lockdown in order to keep frontline staff safe, Mike explains: “I understand the reason but the fact is that support has been withdrawn temporarily and we’ve had to cope without it.”
Throughout the pandemic Mike has been frustrated with the lack of recognition unpaid carers have received, while being unable to take a break from his caring role.
Mike believes education on what carers do is essential to creating change and increasing support, as carers themselves are unable to fight harder than they already do.
“It’s education, the public are not educated that there are all these people out there,” stresses Mike. “They haven’t got the time, or the energy, or in a lot of cases the education to be able to protest effectively so something will be done, and without that there will be no advance in the care of family carers themselves.
“We’re millions of individuals, we cannot all put the people we care for and love on the steps of parliament square and go marching though London.”
Now, Mike is calling for more backing to enable carers to reach their full potential, he says: “I’d like to be able to do something worthwhile while I’m a carer but the limits on what I can earn and the hours I can do are so rigid that it gives me no opportunity.”
Mike also has concerns for young carers whose friends might not understand their caring situation and often miss out on opportunities themselves.
Lee and his younger sister Katie care for their mum, but Lee feels that he can’t talk to his friends about his home life. “I don’t really feel the need to talk to my friends about it and I just hide it from them,” explains Lee. “A lot of the time it’s hard to speak to friends about it because they don’t understand.”
Attending young carers’ meet ups organised by MyTime is something Lee looks forward to and feels they help his mental health, he says: “People find it hard to understand my position so having someone in the same position means they’re more understanding.
“It shows we’re not alone and other young people are in our situation, it’s supportive mentally.”
Throughout lockdown Lee has felt more isolated without this respite, but like Lilyrose he has been able to take part in video calls. The charity has also supported his family through the food provision programme, providing easier access to food for young carers and minimising the need to rely on online shopping.
“It can be difficult for us to get food cheap and regularly, the shops are on the opposite side of town,” reveals Lee. “It would definitely be more stressful having to worry about food and always getting a delivery.”
Despite his appreciation for this support, Lee wants to see more assistance for young carers in isolated places, especially from a governmental level.
“I don’t think there’s much more help we could get personally, but people in more isolated places should be prioritised,” stresses Lee. “Someone on government level should be making sure they’re getting things like food and are well supported.”
As the country moves towards a new normal the majority of support for carers and their families is still provided by charities and local organisations.
Carers UK estimates that around another 6,000 people take on caring responsibilities every day, without better provision of guidance carers will continue to miss out on the recognition and support they deserve.