"We feel let down"

My son was identified to have a cleft lip at the 20 week scan. Within 2 days the nurse from the Edinburgh cleft team came out to see us, talked through our fears and we felt confident and supported. There was further contact in the weeks before he was born and on our first morning in the hospital after his birth (cleft lip gum and palate identified then) the same nurse visited us to support feeding, something which other nurses on the ward felt unqualified to do. Our nurse was amazing.

However things started to unwind. We were aware from Christmas that there was a merge of the service and this idea of a centre of excellence in Glasgow.

We were told our son would have surgery at 4-4. 5 months when we met with the team at their Edinburgh clinic. This appointment was itself delayed and we had to chase up the arrangement for the meeting.

In June with the dates approaching we were contacting the team to ask about dates as no one had been in touch. After a number of calls we were advised that the surgery will be when our son is just under 6 months, the latter end of the suggested age range for his first surgery as far as I am aware.

Again no one has spoken to us about implications of a later than planned surgery. Sadly on the same day as getting this news we were also told that our nurse was leaving her post.

The confidence that we had in the service has gone. The move to Glasgow has appeared to have left us in a position whereby we now need to chase information, appointments and support. There is no formal support now in the local area.

We feel very let down and throughly abandoned before the long journey of surgeries and check ups has even started. There does not appear to be much consideration of the child at the centre of this service which now feels very removed and distant rather than supportive and certainly feels far from 'excellent'