Children's Spina Bifida Services 'Grossly Under-Resourced' - Study

Services for the 500 children who live in Ireland with Spina Bifida are grossly under-resourced, according to Temple Street Children's University Hospital in Dublin.

The hospital has conducted a national study that examined access to services for children with Spina Bifida and found 54% of children with SB in Ireland do not have access to a multidisciplinary team (MDT) clinic, despite the fact that 69% of children with SB over three years use a wheelchair, 93% over five years require continence support and 64% have a VP shunt, which is a device that drains excess fluid in the brain.

The hospital said on average 34 children are born with SB in Ireland every year, with an estimated 500 children living with the condition.

The study also found that obesity is five times more prevalent in children with SB than in typically developing population.

50% of school age children with SB suffer low self-esteem, which can be influenced by continence and weight difficulties.

55% of children with SB have visual difficulties, 96% require on-going physiotherapy and 87% require ongoing occupational therapy.

14% of children with SB have a diagnosed intellectual disability, while 89% of school age children require support for physical and toileting needs.

The study said the average wait time for receipt of equipment such as orthotics, wheelchairs and standing frames is six months

Speaking about the study findings, Dr Jane Leonard, Consultant Paediatrician and SB Service Lead at Temple Street Children’s University Hospital said: "A diagnosis of Spina Bifida in a newborn is devastating for any parent but an added and life-long burden for parents is the constant struggle to navigate disparate services and fight for access to those services. This study has proven that there are major deficits in services at national and local level and little coordination of those services for this cohort of children who have such complex and challenging needs. These children deserve a centralised, coordinated service with access to a dedicated multidisciplinary team of specialists."

(IT/CD)