PCCSR

All members should have received an invitation to the Conference being arranged by the Children’s Heart Federation, which is involved in the Review Group looking at Children’s Heart Services into the Future. We have now received confirmation from CHF that the Review Team intend to meet with support groups prior to their visits of Cardiac Units. Max Appeal! Propose to meet the Review Team at three of the following units: Birmingham Children’s, Freeman’s, Alderhey, Manchester and Great Ormond Street.

During the meetings we have suggested that we present two families experiences, showing both good and bad services relating to a particular unit. We are aware of some of your experiences, but if you feel strongly about something that happened to you whilst your child was receiving cardiac care, please let us know and we will try and include this in our presentation and/or change the units we plan to visit. Max Appeal’s! main focus is – “ that Units take a holistic approach when caring and treating children with heart defects that are associated within a further condition (i.e. 22q11.2 deletion)” and “Increased liaison with community teams. Families can often feel isolated when they are discharged from the unit and community and education teams can be unaware of the follow up care required with particular conditions”.

We now have a draft of the model guidance that proposes a structure for Units to follow and also which the Review Team will be working with. If you would like a copy, by e-mail or post, please contact us. The Conference itself will be furthering the Model Guidance and preparing the visits by the Review Team