‘Major deficits’ in spina bifida services

There are "major deficits" in services for children with spina bifida, a leading paediatrician has warned.

Dr Jane Leonard’s comments come as a national study published by Temple Street Children’s University Hospital revealed that fewer than half of children with the congenital condition have access to the level of care required by international best practice.

The study found that:

- 54% of Irish children do not have access to a multidisciplinary team as defined by international best practice. These teams comprise of a spina bifida nurse, neurosurgeon, paediatrician, physiotherapist, occupational therapist, urologist and orthopaedic surgeon.

- 69% of children with spina bifida over three years use a wheelchair.

- 93% of children over five years require continence support.

- 64% have a VP shunt, a device which drains the extra fluid in the brain into the peritoneal cavity were the fluid can be absorbed to avoid an abnormal accumulation of cerebrospinal fluid.

- On average, 34 children are born with spina bifida in Ireland every year with an estimated 500 children living with the condition.

- 50% of school age children with spina bifida suffer low self-esteem often influenced by continence and weight difficulties and there is limited psychological support.

- The average wait time for receipt of vital equipment such as orthotics, wheelchairs and standing frames is six months.

“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,” Dr Leonard, spina bifida service lead at Temple St, said.

“This study has proven that there are major deficits in services at national and local level and little co-ordination of those services for this cohort of children who have such complex and challenging needs.

“These children deserve a centralised, co-ordinated service with access to a dedicated multidisciplinary team of specialists.”

The national study was conducted by an occupational therapist, physiotherapist and consultant paediatrician from the Temple St from January 2013 to August 2014. Surveys were taken from 155 parents and guardians of children with spina bifida, 247 service providers and a focus group comprising children.

The report recommends that all children with spina bifida should have access to a full multidisciplinary team for specialist inpatient care and annual clinic review and local, community-based, multidisciplinary teams should be available more frequently for children with spina bifida with an emphasis on early intervention.