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Young carers in Northern Ireland say Christmas is even more of a struggle

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Ellie and her sister KaylaImage source, Kayla Henry
Image caption,
Kayla with her sister Ellie, who needs 24-hour care

Christmas is not always the most wonderful time of year for carers.

It can be even more of a struggle than usual as carers try to juggle the festivities with a lack of support and respite care, even if they have never known any different.

There are more than 220,000 people providing unpaid care for a sick or disabled family member or friend in Northern Ireland, and about 8,000 of those are under 25.

"We just live from one day to the next," said 18-year-old Kayla Henry.

The teenager cares for both her 21-year-old sister Ellie and her mum.

Ellie has quadriplegic cerebral palsy, which means she needs a wheelchair and a feeding tube.

She needs 24-hour care for a number of complex needs, and Kayla has been caring for her since "no-age".

Her mother lives with Ehlers-Danlos syndrome - a chronic illness - which affects her mobility.

'Christmas is definitely worse'

Kayla said her peers at school "don't really get it, they don't understand what it means to have to do this every day".

Last year she missed her exams due to her stressful home life.

Image source, Kayla Henry
Image caption,
Kayla Henry is trying to juggle more than many of her peers

"I've never known any different. I see everyone else living their lives, not having to do that. It's hard because me and Ellie are so close in age," she told BBC News NI.

"I also have a job, but I'm rarely able to pick up any shifts. If I have any money coming in, it's going straight back into care."

Kayla does her best to make Christmas magical for her sister - because of her mum's mobility issues, the cooking, wrapping and decorating falls to her.

"I have my mock exams just after Christmas, and I really don't have any time," she said.

"It is a struggle all year round, but Christmas is definitely worse.

"In terms of Christmas traditions, we don't really have that. Ellie has to be fed through a tube, so we don't really sit and have dinner together or anything.

"We might watch a movie together on Christmas Eve, that would be the only time we would feel like a normal family at Christmas."

Barnardo's NI director Michele Janes said: "We know that lots of young carers feel more isolated at Christmas, as they're unable to join in activities with their friends because of their caring responsibilities.

"More resource is needed to identify young carers early, improve support and reduce stigma."

Image source, Ella Gandan
Image caption,
Ella's father, Spencer, has osteoarthritis, breathing problems, heart problems and mobility issues

Ella, 20, has been living with and caring for her father, Spencer, for over 10 years.

"When I was young, it was a very worrying time," she said.

"Seeing a loved one going through stress is hard to process when you're little. I just wanted to help.

"My care comes naturally, because it's for a loved one."

Image source, Ella Gandan
Image caption,
Ella, pictured as a child with her dad, says she hopes she can make her dad smile this Christmas

With the current cost of living, Ella said that her priority this year is making sure she can afford the basics.

"In terms of Christmas traditions, if we could do them, we would but at the moment that isn't possible," she said.

"I just have to make sure we have gas and electricity.

"In terms of support, it is very limited for me. All I get is 26p from Universal Credit every two weeks. I just went to carers' allowance to see if I could get some help there."

Ella and her father have had financial support from charity Action for Children, who sent them vouchers for electricity and food, and last year they gave her snacks and food for Christmas which she would not have been able to afford otherwise and which, she says, "made Christmas special".

In the most recent quarterly statistics from the Department of Health, 2,150 claimants of carers allowance where under 25 years old.

Image source, Helen Clarke
Image caption,
Helen and her son Milo visiting Santa

Helen cares for her six-year-old son, Milo, who has autism and severe learning difficulties.

She is a member of a number of care support groups, with other people in same situations.

"It really helps sharing stories and talking to other mums who are in the same situation as me, there's a shared understanding," she told BBC News NI.

"There is support, and support groups out there for carers, but they are hard to find.

"I need to be in the best state-of-mind for Milo to get the best out of me.

"It is very easy to fall into depression, anxiety and get stuck in a rut in the house.

"Christmas can be a real time for this to happen.

"But I find these groups are a real help."

Carers 'deserve so much better'

New legislation is being introduced to help alleviate pressure for about two million unpaid carers in England, Scotland and Wales.

However, the Carers Leave Act will not be implemented in Northern Ireland in the absence of a functioning government.

Craig Harrison, public affairs manager at Carers NI, said: "We have a higher carer poverty rate than the rest of the UK - carers in every health trust are languishing on waiting lists to access support and respite.

"Our last government strategy for carers will be close to 20 years old in 2024 - the ongoing Stormont stalemate means our carers will fall even further behind.

"This population of people, who are saving Northern Ireland close to £6bn in care costs annually, deserve so much better than this."