The first meeting of the NPCC Patient Advocacy Group took place in Temple Street on Wednesday 12th December.
Following this first meeting we have officially set up the NPCC PAG (Patient Advocacy Group). This group will be open to all parents and patients over 16 years of age.
We are also delighted to announce that a parent, David Jones, who was present at the first meeting has kindly come on board as Chairman of the NPCC PAG and we are working with the him to organise the first official meeting of the PAG. The facilitation of this meeting will be to discuss and draft the Terms of Reference (ToR) for the Group and to agree some advocacy based projects.
The goals and purpose of the PAG will be determined by the group. Items that may be at the forefront may be deficits such as the appointment of a dedicated Psychologist for Facial Difference. There may be other resources and/or service developments that the PAG have in mind and agree to advocate. These efforts will of course become even more important as we look to the design and delivery of the craniofacial service under the banner of the Children’s Health Ireland (CHI).
As you are probably aware, CHI is our new single legal entity since the 1st of January 2019 and which brings together Temple Street, Our Lady’s Children’s Hospital Crumlin and National Children’s Hospital in Tallaght and the Children’s Hospital Group (CHG). CHI has a significant focus on clinical and cultural integration as we prepare for our move to the new children’s hospital in 2022. The NPCC PAG may decide to advocate for a key role in the design of craniofacial related services during this integration process.
All information on the PAG will be posted on this page in the near future. If you would like to join this group or if you have any queries , please email David Jones on Craniofacialpagireland@googlegroups.com