Generation excellent

As a young carer, Danielle faces plenty of challenges, but like so many youngsters in her position, she confronts them with a resilience that belies her age. It’s tough though, particularly in these unprecedented times. During lockdown, not only are young carers juggling schoolwork at home with their responsibilities as a carer, but they face the isolation that stems from being physically separated from friends and family members who don’t live with them.

Danielle, who’s a year 11 student, readily admits there are times she craves her peers’ carefree lives

“I’m fortunate my brother Ryan’s in a special school three days a week, but on the days he’s home it is a bit full on. Because of his Tourette’s, he shouts and screams and throws things. I’m used to it during the holidays but having it every single day, it’s been really hard. If he’s had a bad day at school, god knows what’s going to happen,” says Danielle, 15, who lives in Salford with her mum Lucy, step-dad Martin and siblings Millie, 5, who has epilepsy, Imogen, 6, and Ryan, 12, who’s been diagnosed with hypermobility, ADHD and autism spectrum disorder.

Lucy describes her eldest daughter as “amazing”. “She helps look after all the children and is a great support for me too. She’s mature, kind and intelligent, and has done brilliantly at school despite all the extra responsibilities she has at home. I’m immensely proud of her.”

Danielle, who’s a year 11 student, readily admits there are times she craves her peers’ carefree lives. “I envy young people who don’t have the caring responsibilities I do, and have the freedom to go out and not have the worry they’re going to be judged,” she says, revealing it’s not uncommon for the family to experience uncomfortable situations in public.

“Ryan has a disability badge but doesn’t look physically disabled and it annoys me when people give us dirty looks because they don’t know what goes on behind the scenes,” she says. “I know it’s in people’s nature to judge but it’d be great if they could just take a step back and think about what might be going on because it’s hurtful, not just to the person you’re caring for but to the carer themselves.”

The selfless work carried out by carers across the UK is undervalued. This includes the 166,000 young carers aged five to 17 in England identified in the 2011 Census – although other studies put the figure much higher. Many young carers are not known to services and an estimate by the BBC puts the figure as high as 700,000 for the UK as a whole.

“Covid-19 is obviously impacting carers everywhere, but I think one of the silver linings is people are starting to recognise what carers and young carers do, which is great,” says Matt Woodhead, manager for the Who Cares Campaign, which lobbies on behalf of young carers.

It was set up in response to the play Who Cares, which was developed in 2016 by the Lowry arts centre, theatre company Lung, and Gaddum, the young carers service commissioned by Salford City Council.

Inspired by 200 hours of interviews with young carers, the play toured schools, community spaces and performed at the House of Commons in order to help identify “hidden” young carers.

“A lot of people were saying they didn’t realise young people can be providing this level of care, so it’s just about raising awareness,” says Woodhead. “It shouldn’t have to be the sole responsibility of a young person to identify as a carer; it should be our responsibility as adults to be looking out for them.”

Right now, the focus of the Who Cares Campaign reflects the direct impact of Covid-19 on youngsters caring for family members.

“We’ve launched a social media campaign saying don’t forget young carers,” says Woodhead. “We’re trying to bang the drum and let young carers across the UK know there’s support and services out there for them. And there are loads of simple things adults can be doing to make life just a little bit easier for them.

“One of these is to sign a letter we’ve written on whocarescampaign.co.uk to Matt Hancock asking him to ensure young carers are still getting the statutory support they need during this time. We’re also saying to schools, if you think someone might be a young carer, call them up, see if they need any extra support and that they’re getting the help they need.”

It’s hoped once the population emerges from the pandemic, the Who Cares Campaign can once again call on Parliament to improve services for young carers. In a previous petition, it asked the government to adopt three pledges: all councils to monitor the quality of their young carers service and ensure anyone up to 18 has access to an assessment of their needs and a base level of support; all schools to officially record numbers of young carers; and a young carers identification card to be introduced, which would be nationally recognised and allow young carers to be visible to local services. These pledges could provide the foundation of new policy.

“An ID card would be amazing,” remarks Danielle. “Whenever I go to the pharmacy to collect my brother’s medication, they refuse to give it to me. It only gets handed out to over-18s, but when I try and tell them I’m a young carer they just shrug their shoulders. I have to phone my mum and she’ll come and get it, which isn’t a problem, but it means she doesn’t get any time for herself.”

Danielle agrees there needs to be greater support in schools too. “From chatting to the young carers in my friend group, a lot of schools don’t offer the support mine did. They’ll put a poster on the wall but don’t really talk about it. There just needs to be more recognition because being a young carer isn’t something you can just switch off. It’s constantly there at the back of your mind.”

Describing herself as a “very anxious person”, that anxiety was exacerbated by the fact she wasn’t allowed to use her phone during school hours. “At school, you’re not thinking: ‘What shall I have for tea?’ It’s: ‘Has Millie had another fit?’ Or: ‘Has Ryan kicked off at school?’ It’s just stuff like that, which is awful,” says Danielle, who was given a time out pass for moments when she felt overwhelmed. She didn’t request one until the beginning of this school year, however.

“I’d just sit in the classroom and try and get on with it. It was really tough to open up because I just felt like I was a burden, that it was nothing and I should just get on with it,” she explains.

The urge to suppress emotions and simply plough on is something she has to resist at home as well. “You think you have to keep everything bottled up and get on with it, especially in lockdown, but I make sure I chat to Mum because it definitely helps with your mental health.”

The enduring message to young carers is don’t stay hidden – something Finlay, a 12-year-old carer from Swinton, is keen to endorse.

“I want to let other young carers know there is help out there, so don’t just sit in a corner and do nothing. However hard it might be, come out and say: “I’m a young carer. I need help,’” he says.

Finlay’s an only child whose dad died when he was two, and his mum Caroline has Russell Silver Syndrome. Her 4ft 2in stature, as well as enduring hip problems, means Finlay has to help with the cooking, cleaning and shopping.

“I have to rely on Finlay a lot during this lockdown,” says Caroline. “Usually I rely on my mom, but obviously because we’re from different houses we can’t be together, so it falls on Finlay. He has helped me so much around the house and with Max the dog, which makes me so proud of him. I’d be lost without him.”

“I don’t think I do as much as other young carers and I don’t have any siblings to look after, but I do have to do things that other kids wouldn’t think about,” notes Finlay. “They just think the washing magically happens, or the pots clean themselves, or their favourite tea just appears, whereas I have to do those things myself. I heard one young carer call themselves ‘half-adult, half-child’ and I think that’s such an apt representation.”

Before the coronavirus crisis, Finlay’s favourite pastime was a weekly drama class for young carers organised by Gaddum and the Lowry. Until theatres are given the green light to reopen, the group meets via Zoom, but it’s not the same.

“That’s something I’ve struggled with,” he says. Not seeing his grandma regularly has been difficult as well. “Me and my grandma are the best of friends, which is why I’ve been finding this so tough because I miss her so much. You can do video calls but it’s not the same as being able to hug her.”

But Finlay considers himself one of the “lucky” young carers.

“If doing this means just one other young person gets identified as a carer and gets the support they need, then at least I’ve done something good with my time,” he remarks.

Tellingly, both Danielle and Finlay were identified as young carers by people outside the home. In Danielle’s case, it was a social worker assigned to the family and, in Finlay’s, it was a teaching assistant. Prior to that, neither had thought of themselves as young carers, but regarded their responsibilities as the norm. Without members of the community identifying them, it can be too easy for a young carer to slip under the radar.

“It’s an uncomfortable truth that our health and social care system is propped up by all of these incredible young people caring for their loved ones, and I think it’s a really hard thing for us to confront as a society,” says Woodhead.

“Although there’s much more to be done, it’s exciting that the movement is being led by young carers who, where possible, are advocating for themselves. But it’s also about changing and reframing the way society looks at young carers and that we, as adults, advocate for them too.”

Photos: Rebecca Lupton

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Young carers: the facts

38% of young carers have reported having a mental health condition.
Young carers have significantly lower educational attainment.
68% of young carers are bullied in school.
The average age of a young carer is 12½, but there are carers registered as young as four.
61% of carers state the lack of support for them has negatively affected their health.

Source: Who Cares Campaign

How to help young carers during Covid-19

Email the letter provided on the Who Cares Campaign website to Matt Hancock, health and social care secretary, and cc your local MP.
If you’re a teacher, nominate a lead contact in your school to make regular contact with young carers.
If you work for the NHS, or you’re a GP or pharmacist, refer and signpost young carers to local services that could help.
If you know someone who you think might be a young carer, contact your local young carers service at childrenssociety.org.uk.
Help spread the word by Tweeting #WeCare, tagging @WhoCaresAction and linking whocarescampaign.co.uk.