Dunfermline mum fights to save crucial cleft services

Evonne McLatchie was stunned to discover there are plans in place to move the cleft surgical services to the Queen Elizabeth University Hospital in Glasgow, forcing more than 1,000 East of Scotland patients to transfer.

Cleft lip and palate are birth defects that occur when a baby’s lip or mouth do not form properly during pregnancy and children can face years of procedures to correct the problem. Ms McLatchie's son, 18-year-old Sam, has undergone several operations and admits that her problems with the move would pale in comparison to the parents of newborns.

“Sam is near the end of his surgical journey but there are young babies who have 20 years ahead of them who might now have to go through to Glasgow,” she said. “We’re personally affected as Sam will have two, maybe three more operations. But other children might be facing a whole series.

“Children will be forced to lose a day of school every time they have to go through, impacting their education. Their attainment at school could be affected, there’s the extra expense and time of travelling, family time eroded and families separated at a time of stress.

“There’s a huge minefield of things that we feel haven’t been taken into account but every time we complain they say they’re not yet in the consultation process, it’s just engagement. But I believe it’s a done decision and they’re just trying to sneak it through.”

Evonne’s frustration comes from what she sees as a lack or transparency and communication from the NHS, which she believes has made its mind up without properly consulting patients and parents.

In her petition, she explains that an attempt to engage through the Cleft Lip and Palate Association (CLAPA) resulted in only 30 responses out of the 2,265 patients in Scotland currently receiving treatment. After creating the petition, Ms McLatchie collected more than 2,000 signatures in four days.

“It shows people will react when they are told but until now, a lot of them didn’t actually know,” she said. “I only found out very recently as well so there’s probably still many people who don’t know about it.”

The campaign has won the backing of Dunfermline MSP Cara Hilton, who said: “Moving cleft services to Glasgow is not in the interests of the thousands families outside the Glasgow area who would be faced with extra travel costs and time off work and it’s not in the interests of staff working in the service, who appear not to have been consulted at all.

"No real attempt has been made to communicate with families or patients and it seems like these changes are being sneaked in through the back door.

“I have written to the cabinet secretary for health Shona Robison to raise my concerns.

"Patients, staff and families deserve better than tick-box exercise consultations and I would urge the Scottish Government to listen to Evonne and the thousands of families affected and engage in real consultation to ensure the best possible outcome for all concerned.”

A spokesman for NHS National Services Scotland said: “No decision has been taken, and it would be for Scottish Ministers to decide on the future shape of this service.

“However, services do need to be properly staffed and resourced to provide a high quality, sustainable service for the long term.

"Specialist services like this with a few complex operations a year often benefit from concentrating surgical skills in one place.

“On behalf of the NHS, we are undertaking an appraisal exercise and seeking comments from families. Patient confidentiality means that at this stage, we have to work through the main patient group, CLAPA. This is ongoing.

“If the appraisal does recommend that surgery is delivered from one place, it is likely that regular out-patient appointments, assessments and other aspects of ongoing cleft care will still be provided locally.”

To view the petition, visit change.org/p/the-cabinet-secretary-for-health-wellbeing-and-sport-shona-robison-nhs-save-our-sick-kids-surgical-services