‘Sickening’ cleft palate surgery performed in service where children were found to have come to harm

The South West Cleft Service has been subject to scrutiny after 118 young people were found to have suffered harm, or were at risk of harm, between 2020 and 2022 due to significant backlogs – in an area of healthcare where prompt treatment can make huge differences to longer-term outcomes in a child’s speech, ability to eat and physical appearance.

And now one mother – who has two children currently under the care of South West Cleft Service - has revealed that in an effort to shorten the already extensive wait for her eldest daughter, following a failed initial bone graft procedure in May 2022, University Hospitals Bristol & Weston NHS Foundation Trust brought in a retired surgeon to complete a second round of surgery – who used a deceased person’s bone, rather than the agreed plan of taking bone from the girl’s knee.

In the surgery, which was delayed to December 2024 and outsourced to Spire Bristol Hospital, surgeon Peter Revington used cadaver bone in the bone graft. This was not disclosed to her parents, and was discovered in a subsequent follow-up appointment at Bristol Children’s Hospital, where the mother and daughter found out the procedure had unfortunately failed again.

Independent expert evidence secured by the family’s lawyers at Slater and Gordon criticises the use of cadaver bone as “not being UK standard practice” and also points to the delays in the child’s care and the fact she saw so many different medical professionals as being major red flags in her care.

While the girl, who is now 12, has been told by the South West Cleft Service that her only option is a third round of surgery, independent evidence has suggested this may not be the only course of action - prompting her mother to speak out about the issues that exist in accessing highly specialist cleft palate care.

“I found the whole incident with the cadaver bone utterly shocking, really sickening,” says the woman, from the South West.

“When my daughter and I were in a meeting where we found out the second bone graft had also failed, the way the surgeon looked when she was looking through the medical notes was really concerning, she looked horrified. I had to ask what was going on, and when she told me, I was utterly shocked. My daughter was there so I didn’t want to react too much, but I was furious, sickened, I just couldn’t believe it. We had not given consent for this, we knew nothing about it.”

In a report to the University Hospitals Bristol & Weston NHS Foundation Trust in 2022, which highlighted the scale of harm being caused to young people, it pointed to limited operating theatre capacity, pressure on speech and language therapy teams and long-term sickness of key clinical specialists – all of which were already apparent before the COVID-19 pandemic made delays worse, it said.

The mother continues: “From what was a fantastic service, which supported me so well from when I found out during my first pregnancy that my baby would be born with a cleft palate, there are now clearly really big problems. It doesn’t feel like it’s a really specialist service anymore, and you find yourself seeing medical professionals who can’t answer your questions, they can’t give you the level of advice you used to rely on and trust.

“With me having another daughter who is supported by South West Cleft Service, we know the delays continue. She needs to see a dentist who is only in every other Tuesday – so you can imagine how long the backlog is, with children from across the area waiting to see a single dentist who is available one day every two weeks. I am told her teeth are becoming worse, which they of course will do given the fact she is not being given the care she needs.

“My eldest daughter is doing so well, but we face the prospect of yet more surgery – if that does go ahead, she is probably going to be 14, which is quite an old age. It is a fact that these surgeries are more successful in much younger years. Had everything gone as it should have, she should have been sorted by around the age of eight.”

The family have turned to law firm Slater and Gordon to support them in finding answers around the poor standards of care being delivered from the South West Cleft Service.

“The care this young girl has had from the South West Cleft Service is clearly unacceptable, with lengthy delays leaving a question mark over her longer-term outcomes, and the fact she underwent surgery involving the use of a cadaver bone, without any consent, is something any parent would be outraged about,” says Owen Lake, who is handling the family’s case.

“The problems that exist in this service have been reported on for a number of years now, and this family’s experience shows that delays and poor standards of care unfortunately appear to be systemic. This is really devastating in a service where early intervention is proven to lead to better outcomes for children with cleft lips and palates.

“We will support this family in every way we can to find out what has gone so wrong in their case – but we are aware there may well be many more families who also need support, and we would urge them to come forward.”

Anyone who needs support regarding the care they have received from this service can find it here