Cleft Palate is the most common facial birth defect in the UK. One in every 700 babies is born with cleft lip or palate and it can be extremely distressing both emotionally and financially for the families affected. NHS Lothian has, until now, provided an invaluable service across Scotland to provide surgical and follow on care to these babies. In October, NHS Lothian made the decision to close the Cleft Surgical Service based at The Sick Kids Hospital in Edinburgh – the only East of Scotland provision.
Crucially what’s not being considered is the issue of the quality of outcomes of patients which in my view should drive decisions and is my biggest concern about this centralisation. From the paperwork I’ve seen this is being ignored and that’s not acceptable. I have been contacted by several parents of children and babies with cleft lip or palate as well as medical staff, and I have been supporting them in their campaign to protect the service offered in Edinburgh, and to ensure any changes are only made following a full and proper independent review, using unbiased evidence.
The NHS gave public assurances in June 2015 that the Cleft Surgical Services would not be merged, but this was reversed only a few months later WITHOUT a full and proper consultation with patients, parents or staff. Any centralisation of care would mean losing the vital service currently available, with also the possible loss of cleft knowledge and expertise of specialist nurses, hygienist, orthodontist, speech and language, ENT, sleep study and special respiratory staff all associated with cleft care.
It is crucial we campaign to have patient care put first and foremost in any decisions to change services currently being provided.
Once I’d spoken to several of those who will be affected, I wrote to the Scottish Government health minister responsible but received an unsatisfactory response. I then followed this up by raising it in Parliament with a question to bring this important issue to the attention of the Minister again, as well as other MSPs as part of the fight for this key provision to be protected. Unfortunately, the cabinet secretary once again gave me an inadequate reply so I have written to her again, calling for a full independent review to be carried out, and for the many questions and calls of the parents to be answered. I have attached my letter below, and if you are interested in getting involved, please sign up to this petition to support us in this fight.