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!
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.⏳
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
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.⏳
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
