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Children with Spina Bifida are massively under-served in Ireland: study

Children with spina bifida need complex treatment – more than half aren’t getting it.

Image: Sam Boal/Photocall Ireland

THE EXTREMELY COMPLEX needs of children with Spina Bifida are not being properly served in Ireland, according to a study released this morning by Temple Street Children’s University Hospital.

An estimated 500 children in Ireland are living with Spina Bifida (SB), a congenital disorder which entails several serious difficulties and demands complex, lifelong treatment.

According to today’s study, those children are massively under-served, with more than half (54%) lacking access to a proper MDT (multidisciplinary team) clinic, which is international best practice.

This is despite the fact that 69% of children with SB over the age of three use a wheelchair, 93% of those aged over five require continence support, and 64% require a VP shunt (to relieve brain swelling), the study found.

Reflecting the complexity of SB, a standard multidisciplinary team consists of an SB nurse, neurosurgeon, paediatrician, physiotherapist, occupational therapist, urologist and orthopaedic surgeon.

Significantly, today’s study has revealed that The National Paediatric Neurosurgical Centre at Temple Street, which children in Ireland with SB attend, has since its founding in 2008 lacked an occupational therapist, consultant urologist and consultant orthopaedic surgeon.

This is among the findings which have led the authors to conclude: “Services for the 500 children with Spina Bifida in Ireland are grossly under-resourced.”

Here are some others:

  • Half of school-age children with SB suffer low self-esteem associated with continence and weight difficulties.
  • Obesity is five times more prevalent among children with SB than among typically-developing children
  • 55% of children with SB have visual difficulties, 96% need ongoing physiotherapy, and 87% need ongoing occupational therapy
  • 14% of children with SB have a diagnosed intellectual disability
  • 89% of school-age children with SB need physical and toileting support at mainstream schools
  • Six months is the average wait time for vital equipment like orthotics, wheelchairs and standing frames

Responding to the study, a spokesperson from the Department of Health told TheJournal.ie:

Minister of State with responsibility for disability, Kathleen Lynch TD, welcomes the research report and looks forward to discussing the findings with the researchers at a meeting which has been scheduled to take place in the coming weeks.

Read: ‘The day my son was born was the longest, loneliest day of my life’>

About the author:

Dan MacGuill

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