'Looking after my brother changed childhood for us'

Sixteen-year-old Leah helps care for her younger brother Ben every day, but for a long time she never thought of herself as a young carer.

Ben, from Cheltenham, has a rare genetic condition called Primary Ciliary Dyskinesia (PCD), which leaves him vulnerable to infections and means he needs intensive physiotherapy several times a day. Leah and her siblings, Holly and Tom, help support him with those treatments at home.

Leah has turned those experiences into poetry, performing pieces about young carers at the Cheltenham Literature Festival.

She says support from Gloucestershire Young Carers has helped her recognise the value of what she does: "Sometimes when I'm doubting myself, that it counts as caring and not just being an older sister," she said.

The family believes the role of children like them should be better understood by the wider public.

Leah says many people think that because they're Ben's siblings "it's not really caring".

Ben's condition means the hairs in his nose and tubes in his ears don't move to prevent infections. Alongside physio, he also uses a nebuliser to help ease his symptoms.

Leah said meeting other young carers through GYC had made a huge difference.

She said other carers "know the stress it puts on you" and they "helped me to be able to realise I can still go out with friends and I can still do things I want to do while still helping Ben do things he wants to do."

She added that when she doubts herself: "I speak to them and they sort of validate your experiences and you help each other out a lot as well."

For Ben's mum, Jodie, the support her children provide is a "life saver".

She said: "It just takes off a little bit of a pressure for me, especially when Ben's going against me doing it, because of course it can be three, four times a day, at times, especially when he's ill, I really need their help."

Jodie said the support from GYC had also been invaluable to the family.

"It has given the other children a bit of 'them time' but also support for me because they pick them up if needed, get them to things.

"We've got events that are quite close to us as well and (they get) tickets for different things for us as well so I can have a bit of time with them and it's not all just medical appointments and all those bits."

Ben is also supported by his other sister, Holly, and brother Tom. For Holly having a break from their responsibilities was important.

"When you're doing it all the time sometimes you get tired of it but having that break means you're not getting bored of it and like it makes it easier to carry on every day."

GYC works with young people to understand the support they need, whether that is someone to listen to them, opportunities to meet others in similar situations or activities that offer a break from caring responsibilities.

Rebecca Bryan, a key worker there, said better understanding of what young carers do could make a huge difference.

"It's one I think where people assume just because you're a sibling or you know you're looking after a parent that that's just natural for families.

"But it's when it goes over and above what would be expected of someone of that age."

GYC is supported through the BBC's Children In Need appeal, funding Rebecca said was vital.

"It allows us to put in activities and groups and really connect with our young carers, hear what they have to say and support them."

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