The first meeting of our NPCC parents group took place in Temple Street on Wed 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 Chairman to organise the first official meeting of the PAG, the facilitation of that meeting to discuss and draft the Terms of Reference (ToR) for the Group and to agree some advocacy based projects that the Group can drive. All information on the PAG will be posted on this page in the near future.
But for the moment if you would like to join the NPCC PAG, please email David Jones on Craniofacialirelandpag@yahoo.com to express your interest.
In the meantime as you know the appointment of a Clinical Psychologist to the NPCC Team is long overdue but we hope that our business case for the funding of this position will be approved in the New Year and that we can move ahead with that appointment but there may be other resources and/or service developments that the PAG will agree to advocate for. 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 probably know CHI is our new single legal entity which comes into being on 01/01/19 and which brings together Temple Street, OLCHC, NCH 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. So therefore the NPCC PAG may decide to advocate for a key role in the design of craniofacial related services during this integration process.