SPINA BIFIDA & HYDROCEPHALUS PAEDIATRIC ADVOCACY GROUP
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#páistíinlimbo

Our brave, independent, beautiful, resilient children, born with disabilities they are being #maimedbythestate. They are our #páistíinpain
Read Our Children's Stories

OUR MESSAGE

Lack of timely care of our children with Spina Bifida/Hydrocephalus is causing them immense pain, open sores, weeping wounds & declining kidney function.

They have dislocated hips, spines, knees and feet that are disfiguring them. They are waiting years for Orthopaedic & Urology surgeries and more are becoming inoperable by the day.

​They have the most amazing care teams.
But they need to get access to this care - now!
"These are children with spina bifida. Amazing, mature, intelligent children. While waiting for surgery, these kids have gone from walking independently to wheelchairs, from full-time school to home school, and from wearing shoes to open sores from their deformities with no date for surgery.”
- Consultant Orthopaedic Surgeon, House of the Oireachtas Nov 2021​
Children with Spina Bifida should have access to an annual multidisciplinary team clinic including Neurodisability, Neurosurgery, Orthopaedics, Urology, Occupational therapy, Physiotherapy, Neuropsychology, Medical Social Worker and Clinical Nurse Specialist at a Paediatric Hospital".
​- Health Service Executive 2015
​The world-recognised minimum standard of care is for these children to be seen once per year in a Multi-Disciplinary Team Clinic (MDT) at a Paediatric Hospital. - The vast majority of Spina Bifida/Hydrocephalus patients in Ireland do not receive this minimum standard.

The Health Service Executive, the Department of Health & Children's Health Ireland have responsibility for these children's care. They are failing to provide timely medical care & their health is deteriorating at a rapid rate. They are suffering from 
pain, sores, open wounds, loss of mobility, and declining kidney function

The Doctors, Nurses and Allied Health professionals across Children's Health Ireland are extremely knowledgeable & skilled in the care they provide to our children. We have the utmost respect for the energy and expertise they offer - however our children cannot benefit from this unless they have access.

Unless a rapid solution is formulated and followed through by the Irish State, the Health Service Executive & Children's Health Ireland to meet the needs of these children, avoidable additional surgeries, kidney dialysis or even death may occur. 

Their childhood is spent waiting in pain.
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Our brave, independent, beautiful, resilient children, born with disabilities they are being #maimedbythestate they are our #páistíinpain - and these are some of their stories CLICK HERE

Get Involved

Our children need urgent healthcare. They have been failed repeatedly by the service that should look after them.
We need your support to move our campaign forward. 
I want to help

Who we are

We are parents of children who have Spina Bifida and Hydrocephalus.

Our aim is  to highlight the issues facing children who live with the condition/s and those who care for them. 

The Spina Bifida and Hydrocephalus Paediatric Advocacy Group was established in April 2017. 
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Spina Bifida & Hydrocephalus Paediatric Advocacy Group ​©
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