Temple Street study confirms services for the 500 children with Spina Bifida in Ireland are grossly under resourced

A national study which examined access to services for children with Spina Bifida (SB) was launched by Temple Street Children’s University Hospital today. These children have extremely complex needs but the study showed that 54% of them 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% of them over five years require continence support and 64% of them have a VP shunt ⁽¹⁾ to manage hydrocephalus ⁽²⁾.  On average 34 children are born with SB in Ireland every year with an estimated 500 children living with the condition.

International best practice dictates that the care of children with SB should be coordinated by an MDT to give them the best health outcomes and that this MDT should comprise a Spina Bifida Nurse, Neurosurgeon, Paediatrician, Physiotherapist, Occupational Therapist, Urologist and Orthopaedic Surgeon. The National Paediatric Neurosurgical Centre for children aged 0 – 6 years was set up in Temple Street in September 2008 and since that time all children born with SB attend that Centre. However there was no Occupational Therapist, Consultant Urologist or Consultant Orthopaedic Surgeon on the SB MDT in Temple Street. Children born before 2008 have to access a myriad of services through other children’s hospitals, local hospitals and community services without a coordinated team.

The national study was conducted by an Occupational Therapist, Physiotherapist and Consultant Paediatrician from the Temple Street SB Team from January 2013 to August 2014 and was supported by the Children’s Fund for Health (CFFH), Temple Street. Surveys of 155 parents/ guardians of children with SB, 247 service providers and a focus group comprising children with SB also showed that;

• Obesity is five times more prevalent in these children than in typically developing population
• 50% of school age children with SB suffer low self-esteem often influenced by continence and weight difficulties and there is limited psychological support
• 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
• 89% of school age children access mainstream schooling requiring support for physical and toileting needs
• The average wait time for receipt of vital 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.”

Key recommendations from the study on what an optimum SB service for children should look like include;

1. All children with SB should have access to a full MDT for specialist inpatient care and annual SB clinic review
2. Local (community based) MDTs which are appropriately staffed should be available more frequently for children with SB with an emphasis on early intervention
3. Trained nursing professionals should be available to support continence needs
4. Family, peer and sibling support should be available antenatally, when the newborn is discharged from Temple Street and throughout the child’s life to provide practical and emotional assistance
5. Mainstream education should be encouraged for children with SB with appropriate physical accessibility and support
6. All team members should be aware of and responsive to the child’s social, emotional and psychological needs
7. The process of prescribing funding and providing equipment needs to be reviewed to enable timely provision that benefits the child and avoid unnecessary waste
8. Coordinated SB care within adult services required urgent development

For further information/ or interview request, please contact Jane Curtin, Communications Manager, Temple Street. Tel.: 087 938 0779

Click here to download The Health and Therapy Needs of Children with Spina Bifida – Executive Summary

Editor’s note 

1. VP Shunt – a VP shunt is a device which drains the extra fluid in the brain into the peritoneal cavity were the fluid can be absorbed.
2. Hydrocephalus – also known as ‘water on the brain’ is a medical condition in which there is an abnormal accumulation of cerebrospinal fluid (CSF) in the ventricles or cavities of the brain. This many cause intracranial pressure inside the skull and progressive enlargement of the head, seizures, tunnel vision and mental disability.

Background

Temple Street Children’s University Hospital (TSCUH) has been the National Neurosurgical Centre for children aged 0-6 years since 2008.  Neurological conditions include children with Neural Tube Defects (NDTs) which involves incomplete closure of the neural tube, and Spina Bifida is the most common form of NTD compatible with life.

Ireland has one of the highest rates of NTDs in the world with an incidence of 1.17 per 1000 (McDonnell et al., 2014), 49% of whom presented with Spina Bifida.  Although no central database exists for prevalence of children with Spina Bifida in Ireland, calculations based on the European Surveillance of Congenital Anomalies (EUROCAT, 1991) data, TSCUH and Spina Bifida Hydrocephalus Ireland (SBHI) reported numbers, and prevalence and birth rates would suggest that there are 500 children (0-18 years) with Spina Bifida currently in Ireland.

Spina Bifida is the most complex congenital condition compatible with life which requires lifelong interventions (Liptak and El Samra, 2010).  Spina Bifida can have a great impact on health services with an estimated lifelong cost of half a million Euro (Yunni et al., 2011).