Joachim Stanley considers the findings of “The Bristol Review” published on 30th June 2016, an independent review of the safety and quality of children’s cardiac services in Bristol.
I was concerned to read that the paediatric cardiac services at Bristol Children’s Hospital were once more the focus of an investigation, concerns having been raised by parents about the standard of care provided to their children. A report of the findings of this investigation was published last week. This review follows a previous, widely reported, public inquiry into children’s heart surgery at the Bristol Royal Infirmary between 1998 and 2001 chaired by Professor Ian Kennedy which concluded that a number of children had died unnecessarily following heart surgery at the hospital.
An independent investigation, “the Bristol Review”, was conducted by a multidisciplinary team lead by Eleanor Grey QC, and was commissioned by NHS England Medical Director Sir Bruce Keogh in 2014 after a meeting with a number of concerned parents. The report has made 32 recommendations that range from staffing levels to communication best practice. The report has concluded that some children treated at Bristol were “put at risk” by staff shortages and a dearth of skills.
The report itself evaluated a wide range of concerns and involved contact with 237 families whose children were treated at the Bristol Royal Hospital for Children after March 2010. Whilst it does not suggest that care at the Bristol Children’s Hospital was anything like as questionable as when Professor Kennedy reviewed it in 2000 – 2001, the report does paint a troubling picture.
The investigation findings included:
It was found that mortality (deaths) following an arterial shunt procedure was outside expectations over approximately 2010 – 12. This finding, however, needs to be treated with some caution. This is because the overall numbers of children in the case series were fairly small, with the corollary that only a very few extra deaths can skew the figures as percentages quite significantly.
Perhaps more troubling was the dearth of data available for measuring morbidity (which is illness or otherwise adverse outcomes following surgery, but that does not include death). The review team found there were problems with the data available, which made it difficult accurately to assess levels of post-operative morbidity. This problem is a national one: since the original paediatric cardiac scandal at Bristol, heart units have been obliged to submit mortality rates broken down by types of surgical procedure, and by surgeons within those units. Similar requirements in the measurement of morbidity have not yet been achieved. In paediatric cardiac surgery, risks such as brain injury remain and arguably have come to the fore as levels of mortality have (thankfully) decreased. I was therefore pleased to see that data relating to nine types of complications will be measured, including new (i.e. post-surgical) problems with the brain or nervous system; Unplanned re-operation; and major adverse events (e.g. cardiac arrest in intensive care).
Whilst welcome, it is surprising that this development has not been formalised sooner. Given the relatively small numbers of children in most cardiac case series, central data collection that allows clinicians engaged in research to pool their findings is vital.
The importance of good communication with parents has also been identified as an area of concern and a study reviewing this is planned with five participating hospitals – Great Ormond Street, the Evelina Children’s Hospital, the Bristol Children’s Hospital, the Birmingham Children’s Hospital and the Royal Hospital in Glasgow.
A specific recommendation emphasised the rights of patients to be treated as partners by doctors and to be properly informed about material risks involved in planned procedures to enable proper consent to given.
It was depressing to read that worryingly poor levels of staffing were identified further afield. The review noted that the fetal diagnostic cardiac service in Cardiff was currently provided by only one foetal cardiologist, who served a catchment area with a population of around 2.2 million people. The foetal cardiologist was also noted to work “with limited access to support staff such as a specialist sonographer or liaison nurse.” Perhaps unsurprisingly, access to foetal medicine was sometimes rather limited, and the review was told that “referral to the foetal cardiology service in Wales operated on severely restricted criteria and that the service was unable to meet the New Congenital Review Standard – that all women with suspected or confirmed foetal cardiac anomalies should be seen within three working days and preferably two”.
Elsewhere, the report highlighted that many parents had expressed concerns that appointments needed to be chased up, with other problems in scheduling outpatient appointments identified.
Overall, the report’s conclusions appear to suggest that this is a service which certainly locally, and quite possibly nationally, is under strain. I vividly remember listening to Professor Ian Kennedy telling the Public Inquiry that the Bristol heart service had tried to persevere with what he referred to as “Dunkirk spirit”. He then pointed out that Dunkirk happened sixty years ago, and there was a war on. Sadly, that comment seems as relevant now as it did in 2001.