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: