Meet Alan and Julie

Kinship carers Alan, 65, and Julie, 65, have been raising their 9-year-old granddaughter Ella in Leeds since she was just 10 months old. Ella, who has severe learning and physical disabilities, is also cared for by her aunt Claire, 45, who lives with them in their home in Leeds.

Alan said: “We’d just got back from holiday and were asked to go and meet social workers.

“They said we had 10 minutes to decide if we could take on the care of Ella who was just 10 months old because her parents weren’t able to. If we couldn’t, they said she would go into local authority care and the chances were we would never see her again.

“We said ‘yes’ immediately. We had to learn how to care for and feed Ella before we could bring her home as she has a rare genetic condition called CHARGE syndrome which means she had a heart condition, weak bones and was blind in one eye and deaf in one ear, so she had to be fed by a machine.

“We worried how we were going to be able to look after Ella as she needed 24-hour care and was so small and fragile. It was quite scary because she had brittle bones and so we’d never even picked her up but over five days we were taught how to do everything carefully.

“I had to give up my small self-employed business and income maintaining properties and we had to move to a more suitable council house in Leeds.

“Caring for Ella was hard to begin with as it was 24-hour care. Feeding her every three hours through her feeding tube.

“She needed heart surgery in her first 12 months with us. It was the hardest thing I’ve had to do, to hold her in my arms while they gave her the anaesthetic. I burst into tears afterwards and the relief when she survived the surgery was immense. We gave her a teddy bear after the surgery which is special to her and means so much to us. She’s proved to be incredibly resilient and has undergone three heart operations and bounced back. Hopefully she won’t need any more now.

“Social services said we needed to go to court to get a Special Guardianship Order, SGO, giving us parental rights for Ella which meant we had to get a solicitor which they paid for.

“The court decided to pay us £47 per week for Ella’s care. We didn’t know any different, or what we were entitled to.

“At the beginning we thought social services were good. But two months after we received the SGO they said there wasn’t anything more they could do for us and closed our case. They dropped us.

“Thank goodness Kinship charity contacted us because without their support I don’t know what we would have done, as there was a complete lack of information regarding kinship care and available support.

“Kinship came in and helped us with all the paperwork; they explained everything to us and what we needed to do which was fantastic.

“I went to a support meeting for men and found myself talking about things I have never talked about because we are all in the same boat.

“Kinship showed us that we were not being awarded the right financial allowance for Ella’s care due to her special needs. We have been receiving £180 a week since she was aged 8.

“I’ve also volunteered in the past for Kinship’s Someone Like Me advice line.
Alan says: “It’s so unfair, foster carers get a non-means tested fixed allowance and so should kinship carers.

“We’re all worried about the cost of living and rising energy bills. Fortunately, we just about get by.

“It wasn’t until I had a heart attack in 2023 and Julie became seriously ill with pneumonia that we had to ask for help. That’s when Ella’s aunt Claire came to live with us to provide much needed extra support.

“We get so much joy from Ella, and she has such a supportive extended family around her as we have six children. If she had gone into the care system, she wouldn’t get to be so connected to this huge family that she sees all the time.

“She’s doing so well too. We were led to believe that Ella would never walk but she is walking a little now. I use the wheelchair more than her now. Her communication style is really good. Although she can’t speak apart from a few words like grandad and nanny, she will take us by the hand and show us what she would like.

“She can change her clothes, brush her hair and get a pouch of food from the fridge. She’s doing a lot more than we expected and doing brilliantly at school. She’s still fed by a machine in her tummy but we’re working towards her eating and drinking normally.

“I think kinship carers need advice from the word go as soon as they agree to step up and care for a child. You need someone there to explain the legal process, the different orders and support you might be entitled to. At the time you are so concerned about the child you’re not aware of what you need to know.

“Kinship carers should get the same support as foster carers. Grandparents, aunties and uncles become kinship carers often out of the blue but they’re not prepared for it and usually don’t have the resources they need to support them. This must change.”