More than 100 youngsters with cleft lips or palates have been “harmed” because of huge delays to treatment at Bristol Children’s Hospital, a review has found. For two patients the level of harm was classed as “severe” as they suffered tooth loss or decay because of the waiting list backlog, a health board meeting heard.
University Hospitals Bristol & Weston NHS Trust (UHBW), which runs the service for the South West region at the children’s hospital and Bristol Dental Hospital, has apologised and taken steps to put things right, including hiring more medics and increasing surgery sessions and speech and language therapy. A report to the trust board said concerns about the cleft service from limited operating theatre capacity, pressure on speech and language therapy teams and long-term sickness of key clinical specialists were already apparent before the pandemic made the delays worse.
It said the impact on 268 patients waiting for treatment and their families was assessed between 2020 and 2022 in a major exercise called a “harm review”. A total of 118 of these were deemed to have experienced some degree of harm – two “severe”, 91 “moderate” and 25 “minor” harm – plus another 57 who were at “greater risk of coming to harm” subsequently as a result of the problems.
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The report said: “Due to the clinically time-sensitive nature of cleft treatment, these delays can result in increased risk of complications for patients.” It said these included children who did not have cleft palate surgery until after they were 13 months old, which put them at higher risk of developing problems with speech, feeding, weaning and socialising.
The report said: “It was also recognised that extended waiting times have led to anxiety and distress for patients and families. Of the individuals assessed as coming to harm from a speech and language perspective, this impact was a combination of limited or no progress in therapy whilst waiting for a procedure, which often then led to further impacts of decreased socialisation, withdrawal and limited contributions at school.
“This in turn could lead to anxiety and psychological impact on the family as well as the child. Nursing identified three babies where their delayed treatment caused weight loss or faltering growth due to issues with feeding, and six where it was considered that issues with food/feeding or food getting stuck in the palate.”
The review made 10 recommendations for the Bristol hub and wider South West clinical network, some of which have been completed while the rest are in progress. The cleft team is contacting all 150 patients who came to moderate or severe harm or are at greater risk of harm to discuss the findings and their treatment.
UHBW chief medical officer Stuart Walker told the board on Tuesday, April 18: “We have a large number of children whose long-term situation has been affected to some degree by delays to our surgical provision.” Non-executive director Bernard Galton said: “The report is quite worrying in terms of speech and language.”
Board chair Jayne Mee said: “It is a very sobering report. It feels like we have a clear plan of how we are addressing it and that is very much in progress.
“We would be very keen as a board to make sure we follow up and see through.” Non-executive director Sue Balcombe said: “I’m really pleased to see the engagement with families because it must be really distressing.”
Prof Walker said afterwards: “I would like to express my sincere regret that some of our patients and their families have been affected by the delays in the South West Cleft Service. We have undertaken a thorough review of this service and have apologised to those patients and families we have identified through this process.
“This is not the experience we wish for anyone in our care and we are committed to do all we can to support them as they continue their treatment. We have already made a number of service improvements, which includes increasing the theatre sessions, offering more speech and language therapy and psychological support, increasing the provision of speech investigation diagnostics and introducing nose-retained speech devices.
“I would like to reassure our cleft patients and their families that if we have not contacted you directly about this review, you do not need to do anything. However, if they have any concerns, please contact the service in the normal way and a senior clinician will be happy to talk to you.”
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