They have been so awesome and I feel so close to all of them. They
are almost like family now (laughs)…..I can’t say anything
negative about them. I feel included in every decision. (Mother 13)
In some instances, parents did not feel supported by the PCD healthcare
team. Some experienced language barriers, unclear information, a lack of
practical support, felt not listened to, or the parent felt powerless to
refuse required PCD healthcare. The appointments were time consuming,
sometimes requiring the parent and child to be at the hospital for
several hours. Working parents often needed to claim a holiday or took
unpaid leave to accompany their child to these appointments. For a few
parents it was quite emotional to attend clinic. As this mother
explained: