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Schoolgirl with rare condition inspires new children’s resource

Matilda Evans

A SCHOOLGIRL with a rare neurological condition has inspired the Welsh Ambulance Service to produce a new resource to help children understand what happens if they call 999.

Matilda Evans, of Carmarthenshire, has microcephaly, a condition where a baby is born with a small head or the head stops growing after birth.

The nine-year-old is a frequent visitor to hospital but previous bad experiences have left her with anxiety about healthcare professionals.

Matilda’s mother Cheryl said: “Matilda was born with microcephaly, which means that she has learning difficulties and seizures as well as problems with her heart and eyes.

“I used to absolutely dread taking her to any appointment because she’d get into a panic.

“We’d end up walking out of appointments because she was too upset, even to be weighed or measured.

“She’d get that upset that they’d have to give her a full general anaesthetic just to have an eye test.”

Matilda was visited by the Welsh Ambulance Service’s Patient Experience and Community Involvement Team as part of their engagement work, and was shown what happens when paramedics and doctors perform a check-up.

Matilda said: “I showed everyone how to do it – I played with wipes, the air thing, the pillow, the blanket, the cuff and the bandage on your hand.”

Cheryl added: “A few weeks after the visit, Matilda had a seizure and had to go to hospital.

“She sat there and told them how to measure her oxygen levels and even offered to be weighed and have her blood pressure taken. It was a complete transformation.

“She had to stop in hospital overnight but wasn’t worried. She’s just not scared anymore, it’s no longer a dread.

“For me, it means she can have the appointment and do the things she needs to. It means we can be in and out in a couple of hours.”

Matilda has inspired the ambulance service to produce the ‘7 Important Checks’ leaflet which tells children what observations a paramedic will perform if they are ill or injured, including temperature, blood pressure, pulse and blood sugar levels.

Fiona Maclean, Patient Experience and Community Involvement Manager, said: “Calling 999 and having an ambulance crew assess you can be daunting enough for an adult, let alone a child.

“We want to take that anxiety away, which is why we’ve come up with the 7 Important Checks resource so that children know what to expect.

“We’re so grateful to Matilda and mum Cheryl for sharing their experience and shaping this important piece of work.”

Click here to watch Matilda’s story on YouTube, and here to download and print the ‘7 Important Checks’ resource.