‘PEOPLE WHAT CARER THEY
POST-IT notes fill the tables and the words on them are about the most adult of subjects – disability, illness and cancer. But the words are written by children.
The children are young carers who have been asked to explain to politicians what they do.
They are filled with things like: “Do mum’s epi pen”; “Miss school when she’s suicidal”; “Hold her in panic attacks as only I’m allowed to”.
“Push her about in wheelchair” and “handling seizures” were two more. Tens list domestic chores – cleaning, cooking and washing.
One child alone wrote: “Make the beds, clean rooms, run baths, put nappies in the bin, sometimes run to the shop to get food”.
When one group was asked to write who helps them, the answers included Macmillan, my best friend, my psychology teacher, and Maggie’s cancer centre. Those who “don’t” include teachers, GPs and friends. “Teachers, doctors, friends, family members, people in school” is the list by one child alone.
This was the scene when dozens of young carers from Carers Trust Wales piled into a committee room at Ty Hywel in Cardiff Bay on Thurs- day afternoon. They travelled from as far as Rhyl to tell an Assembly Member what it’s like being a young carer.
Some care for their parents while others care for their siblings.
The idea was for young carers to tell AMs Helen Mary Jones, Dai Lloyd, David Rees and Jayne Bryant what support they get and what more can be done as part of evidence for the health, social care and sport committee’s report about the impact of the Social Services and Well-being (Wales) Act 2014.
In Wales there are thought to be 370,000 carers but the numbers for young carers are believed to be a vast underestimation. The best available figures for England suggest as many as one in five people is a young carer.
The children told the politicians how school life was hit and miss. Things like being late for school, or missing homework, were regular for some. But the responses varied – some had harrowing tales of unsympathetic teachers adding to the stress while others could say their teacher was a lifesaver.
Some of those in Ty Hywel that day had never heard of the Senedd before and didn’t know what a politician was.
Grace Barton was the same until a few years ago – but now she’s given evidence to a Senedd committee and been elected onto the Welsh Assembly’s Youth Parliament.
“I want my voice and that of other young carers to be heard,” said the 17-year-old from Newtown.
When you talk to Grace she displays a maturity well in excess of her years. Her dad, Den, was diagnosed with MS in 1978 when he was 19. His youngest daughter has never known him walking freely and now helps him through life in a wheelchair.
In the 45 minutes or so I’m with her she seamlessly flits from chatting and helping Den with his lunch to teasing him while getting medication from her satchel.
Grace cannot tell you a time she wasn’t a carer. But she doesn’t say that with, or for, pity. Just as a matter of fact: “It was all normal for me.”
She can’t tell you the day she became a carer but remembers each support worker she met – the good and bad.
“I had a fantastic childhood,” she said. “When I was growing up if I wanted to go and do something I could. Things like sailing, swimming, orchestra. Sometimes something came up which meant I couldn’t go but most of the time I could.
“Dad was in hospital quite a lot by the time I got to high school. I would still go to orchestra and then go and see him afterwards.
“I don’t feel like anyone should feel sorry for me. There’s no point moping round about it.
“People don’t know what a young carer is but they need to. However much you say you’re fine and can say ‘I can do that myself’, we need help.”
Den has long since come to terms with his condition. “I have just grown up with this illness and, five years ago, I was able to walk around,” he said.
“It’s gradually taken everything away. I can only use one hand now. The rest of me doesn’t work but it’s just the way things are. We just have to keep going as best we can.
“The more that you keep yourself going the longer you will last. I’ve known people with MS who have become depressed by it and they’re in a wheelchair within six months of being diagnosed and dead within three months. The depression takes over.
“I have got such a good family around me – we do a lot together.”
Grace’s mum works full time and she goes to college in Shrewsbury studying childcare so Den has a care package of both carers and family.
Between 9am and 3pm from Monday to Friday his carer visits while his older daughter also cares for him for a day.
But the way Grace explains it is that they “go with the flow”.
She said: “If Dad goes out of the room two of us just follow. It’s the same when we go out for tea. One of us will sit next to Dad and help him. When someone else finishes they’ll swap places so they can finish their food. It’s just a natural reaction and it’s become one of those things that we don’t even think about.”