Teesside families take lead on new Down’s syndrome support service

Families of children with Down’s syndrome will benefit from extra advice, support and gift boxes, thanks to a new support service launched on Teesside this week.

Parents have taken a leading role in starting the new service, working with a range of staff at our Trust as well as Down’s Syndrome North East, Stockton and Hartlepool Parent Carer Forums, the NHS Integrated Care Board and local councils.

New parents of babies with Down’s syndrome will receive a gift box with clothes, toys and a handmade quilt, as well as books and information about where to get more support.

Upon diagnosis of their baby, families will have the chance to link up with a parent champion – a parent of a child with Down’s syndrome, who can share their experience, offer guidance and answer questions.

Local NHS and council staff will also receive training on how best to support and signpost new parents.

Norton mum Caroline Turner has a son with Down’s syndrome, and is Deputy Chair of Down’s Syndrome North East. She said: “Being linked in with a parent champion means parents get up to date information but also sources of support, a listening ear of someone who knows how you might be feeling and opportunities to meet up with other families who have children with Down’s syndrome.

“They’ve now got access to support from parents who have been through some of the same experiences.”

According to UK charity Down’s Syndrome Association, around one in every 1,000 babies born in the UK will have the condition. It is caused by the presence of an extra chromosome in a baby’s cells.

“It will make a huge difference to parents”

Leanne Boyd-Smith, head of children and young people’s services at our Trust, commented: “We’re happy to support anything that helps parents during what will be an emotional time.

“Having a champion to lean on and to learn from will make a huge difference to parents and the wider family.”

It’s incredible what can be achieved when we all come together and put children and families at the heart of what we do.

Spokesperson from Stockton and Hartlepool Parent Carer Forums

Kate O’Brien, director of transformation with responsibility for learning disabilities at NHS North East and North Cumbria Integrated Care Board (ICB), said: “Having a child with Down’s syndrome brings a whole range of joys and challenges, and for parents it’s often a journey as they find out more and adapt to their child’s needs.

“Having that extra support from people with real experience can make all the difference in people’s lives.”