"The centralisation of the cleft services"

Our son was born with PRS and an isolated cleft palate in December 2014 and was operated on and cared for by Dr Mehendale and her wonderful team in January 2016.

From day one of our son's diagnosis, the Edinburgh based team were transparent in all aspects of care, we received an information pack outlining the names, job title and contact details for all individuals expected to be involved in our son's future care. We were advised that the cleft nurses were always at the end of the phone as was the secretary of Dr Mehendale and that we would have the opportunity to regularly meet with our cleft team at our local hospital to review the care of our son.

We could not have asked for better care in the hands of the Edinburgh team, unfortunately taken away by the dark cloud known as centralisation.

So within the past 18 months, we have waited rather patiently to receive some form of communication from NHS Glasgow regarding the cleft service and here we are still waiting. 

For the past 18 months our son has suffered tremendously with infections to the ENT areas and struggles to eat and sleep. We have seen no one within the cleft service team apart from the local speech therapist who was kind enough to try and help us by directing us to our local ENT department. We are extremely grateful to the speech therapist (Edinburgh Sick Kids) for this intervention.

We have found the biggest frustration on our cleft journey to be that most health care professionals outwith cleft services want to confer with someone in cleft services regarding our son's care and it seems to be an impossible task! Even our local GP and health visitor don't know who to contact, how can that be good for the health and well-being of a cleft child?

Here we are facing further surgery at our local ENT within the next 3 months to our beautiful boy, having been told that cleft services should ideally be involved with the detail and plan of the surgery due to the cleft.

Through the wonders of social media and my own hunting I actually managed to obtain a number of a cleft coordinator in Edinburgh over 4 weeks ago, a lovely man apologised for the break down in communication for cleft services and promised to pass on our details to the Glasgow team for a nurse to call me back, we are still waiting.

We as parents are struggling to understand why the centralisation of the service has had such a detrimental impact to the direct care of our son. An extremely poor executed plan, bad communication and promises broken. I think that someone somewhere within the service needs to be taking responsibility for ensuring contact with all families/GPS/Health visitors involved. This should not be left to the parent /carer to seek, especially given the extra care that cleft babies can require.