‘Harm Review’ of Bristol Children’s Hospital: CLAPA’s Statement

May 1, 2023

A recent report on Bristol Children’s Hospital has found that more than 100 children and young people born with a cleft have been harmed because of delays in treatment.

Repairing a cleft palate beyond the 12 months outlined in the NHS national standards can negatively impact speech development. This report found that the South West Cleft Service regularly has to perform repair surgeries outside this timeframe. In short, while no concerns were raised about the quality of treatment, the South West Cleft Service has not been able to treat patients quickly enough to avoid the harm caused by delays.

These findings are deeply troubling, echoing the worries expressed by several families in this area facing delays which they feel have not been adequately explained or addressed by the hospital.

The centralisation of UK cleft services at the turn of the century was intended to address the postcode lottery of NHS cleft care, where treatment outcomes varied widely from place to place. Since then, cleft specialist clinicians around the UK have worked hard to ensure babies, children, and adults born with a cleft can expect the same high standards of care no matter where they live.

However, these Cleft Centres can only work with the resources they’re given in each hospital. Since the South West Cleft Service moved sites following the closure of Frenchay Hospital in 2014, they have struggled with a lack of beds and operating theatre capacity, as well as other resourcing issues outlined in the recent report.

During the pandemic, when surgeries and other cleft treatment around the UK were severely delayed, there was an outcry of concern from families who knew that a delayed cleft palate repair could negatively impact their child’s speech development. Cleft Teams worked extremely hard to clear this backlog, and while most areas have recovered, the South West Cleft Service continues to lag behind national standards when it comes to the timing of surgeries. Families in this area will have watched as other Cleft Centres recovered and returned to ‘business as usual’ while their own remained saddled with delays. This is now the only Cleft Service failing to meet the standards and guidelines for timing in cleft care. The pandemic worsened these issues but didn’t cause them, and time alone won’t fix them.

Families under the South West Cleft Service have aired their concerns but seem to have been given little information as to why these delays are happening or what is being done to address them. Without this vital context, it’s understandable they’ll conclude that something must be wrong with their Cleft Service.

Trust is extremely important in the ongoing relationship between families and their Cleft Service. To hand a baby over to a surgical team, parents and carers have to trust that they will have the best possible care. This lack of clarity about delays in the South West Cleft Service has damaged that trust, and the hospital must take steps to win it back.

As the UK’s national cleft support charity, it is CLAPA’s privilege to work closely with these clinicians and see first-hand how deeply committed they are to their patients. Like all UK Cleft Services, the South West team is filled with dedicated, highly-skilled, hardworking people who want the best for the people under their care. But because of a lack of beds and theatre time, treatment is constantly delayed, leading to worse outcomes. The stress of working within these conditions has reportedly led to staff sickness and turnover within the Service, which only exacerbates these issues.

It’s unacceptable that the South West Cleft Service do not have the beds, operating theatre time, and other resources they need to provide cleft treatment within the recommended timeframes. Every baby deserves the best start in life; it’s not right that babies born in this area and their families will have to deal with the ongoing impact of delays.

CLAPA welcomes this report and its findings as an important step into fully understanding these issues and finding a resolution. We are hopeful that the actions taken as a result will mean the South West Cleft Service will be given what they need to ensure cleft treatment returns to the same high standard that everyone around the UK should be able to expect.

What’s Happening Next?

The findings of this report are still being processed. Several recommendations have been made to improve resourcing for the South West Cleft Service, but there are a lot of practicalities to consider, and change will take time.

Once a way forward has been agreed upon, this will be communicated to families and patients under this service.

CLAPA will continue to monitor the situation and ensure the voices of patients and parents are heard.

What can families and patients do?

Contact the South West Cleft Service for specific advice and answers on your (or your child’s) cleft care.

If you need support from CLAPA or would like to talk to another parent or adult, please get in touch.

To share your story or views on this situation, email [email protected]. CLAPA will collect together views to ensure the voices of patients and parents are heard throughout this process and may use your stories (anonymously or with your explicit consent) when reporting on this issue in the future.