Group History
In April 2017 a group of parents whose children have spina bifida and/or hydrocephalus established the Paediatric Advocacy Group. The purpose of this group was to highlight the issues of the individuals living with the condition/s and their parents/carers.
The Paediatric Advocacy Group is determined to make a real long lasting change to Spina bifida and or Hydrocephalus Paediatric services into the future. We are volunteers, we receive no funding. We are from all walks of life and we are united by our common purpose - to end unnecessary pain for our children. |
Leads
Founder & Co-lead: Amanda Coughlan Santry
Amanda is the founder & Co-lead of the Spina Bifida & Hydrocephalus Paediatric Advocacy Group. Amanda's commitment is born out of her foresight in seeing a rapid deterioration of services at CHI Paediatric Hospitals & local services. Amanda is a mother of seven who is pursuing an undergraduate degree in Special Education and Health. She has a teenage son living with Spina Bifida and Hydrocephalus who previously attended a number of different hospitals in paediatric services for medical and surgical management. In 2019 her son acquired a life changing brain injury. Amanda also has a younger child born with Craniosynostosis, a diagnosis of High functioning Autism, sensory processing disorder, and a visual impairment. Amanda is devoted to improving services for individuals with Spina Bifida and/or Hydrocephalus. She is currently participating and acting as the PPI ( personal and public involvement) for the research into "Collaboration to enhance experiences of care and transition for people with Spina Bifida and Hydrocephalus" spearheaded by Spina Bifida and Hydrocephalus Ireland and National University of Ireland, Maynooth Amanda is a strong advocate in her community and regularly works within her locality to help improve services for children with disabilities. She believes in supporting those living with Disabilities and their families to find their voice and be heard. In 2015, Amanda successfully lobbied the local county council to make the local playground more accessible. A wheelchair swing is the biggest piece of equipment added to date and is now used by local children and local organisations alike, it is a very welcomed addition to the area . |
Co-lead: Úna Keightley
Úna is the Co-lead of the Spina Bifida & Hydrocephalus Paediatric Advocacy Group. Úna has 20 years of front-line experience in healthcare. She has an Undergraduate Degree from Queen Margaret University Edinburgh, Postgraduate qualification from Sheffield Hallam University, and is a guest presenter for The Radiosurgery Society® based in California, USA. Úna is in receipt of a white belt in Lean Six Sigma for Healthcare & is certified by Cancer Trials Ireland as an Investigator Responsible for Clinical Research She is a CORU registered Allied Health Professional & mother of three. Úna has been involved with Spina Bifida/Hydrocephalus advocacy since the birth of her eldest child who is living with spina bifida & attends CHI Temple Street for medical management of same. Úna's youngest child is also a patient of CHI Temple Street Nephrology Department for management of rare disorder: Hypertension related multicystic dysplastic kidney. Úna is a previous Director of the Board of the charity Spina Bifida Hydrocephalus Ireland (2017-2021). |