Mental health pilot for children with life-limiting conditions
- Published
Conrad is one of the young people being supported by a Heartbeat psychological youth worker
A charity that supports children with life-limiting conditions and their families is piloting a new project focusing on their mental health.
Heartbeat's psychological youth workers provide support to young patients with long-term health conditions.
Conrad, 14, has congenital heart disease and often feels very alone and alienated, his mother told the BBC.
But she said the Southampton teenager's Heartbeat support worker Becky had "really built his confidence up".
"He came away [from a session] and it was like he was floating on a cloud," she said.
Mum Jackie the mental health support has really helped Conrad
Conrad was born with Tetralogy of Fallot, a congenital heart condition involving four abnormalities occurring together. It was diagnosed when his mum Jackie was five-months pregnant.
"We literally felt bereaved," she said. "We got in the car and it was like we'd been hit by a sledgehammer. We thought we were the only people in the world to be going through it."
The condition has meant Conrad has undergone a number of major heart surgeries at the Wessex Cardiac Unit at University Hospital Southampton.
He had open-heart surgery four days after his birth and a major operation to seal a hole in his heart.
Last year, Jackie said they were told he needs to have a valve replaced "and we've been waiting quite a long time now".
"He had an incident where he collapsed on the way to school," she said,
"We did expect to have this surgery done before Christmas but, with the way hospital is at the moment - the waiting lists and everything - it's February and we're still waiting."
Living with the condition, missing school and waiting for procedures, have all taken their toll, said Jackie.
"His mental health has suffered really badly," she said. "He's also autistic and struggles quite badly with school, so he's felt very alone and alienated."
But Conrad has been spending time with psychological support youth worker Becky, who explained the sessions could take place "wherever that young person wants to meet me and feel safe in that environment, then I will go to them".
Becky has been supporting Conrad as part of the new pilot by charity Heartbeat
Becky told the BBC: "Conrad was referred to me to help him meet other young people with heart conditions, to support him to settle at school and to provide a safe space for him to talk about his worries and concerns.
"I support him at school, at home and in his clinic appointments."
Heartbeat also provides a place for families to stay, just minutes away from the cardiac wards.
Mark Ind, the charity's CEO, said: "A lot is lost in terms of the importance of psychological support, particularly for 11 to 25-year-olds, where there's already the most amount of changes a human being goes through."
His own son Alex, now aged 25, also has a congenital heart condition and Mr Ind explained: "When they get to age 11, the awareness increases, whether it's scars, whether it's relationships, whether it's the challenges i think every teenager has."
He said he hoped the pilot would "prove how important and valuable [the support] is" so the role would be included in future funding.
Jackie agreed: "There should be a lot more Beckys, definitely."
Mr Ind's son Alex (pictured in hospital previously) also has a congenital heart condition
Follow BBC South on Facebook, external, X, external, or Instagram, external. Send your story ideas to south.newsonline@bbc.co.uk or via WhatsApp on 0808 100 2240.