The report of the Review of Bristol Children's Hospital's child cardiac services has been published today, 30 June 2016, with families still harbouring questions over many aspects of the inquiry's findings.

Laurence Vick is representing families whose children died or were injured at the unit; the following is a response to the report, with analysis of its key points and the views of the families. You can follow links to press coverage at the foot of the article.

This Review has been a huge undertaking, two years in the making and carried out under difficult circumstances. However, its findings are, in places, controversial. I find it entirely understandable that it will be a struggle for parents to accept this report, given the concerns they have had over its scope and methods throughout the past two years.

Scope of the Review

The parents have, at times, felt that they have been shut out of what they were led to believe was a 'parent-led' inquiry; this was the declared focus of the Review at is inception in 2014. Going deeper than this, they feel that the Review has not examined certain vital elements of child cardiac treatment at Bristol.

From the very outset, families have questioned why only care in the period 2010-14 was to be included in the Review's terms of reference. Their concerns arose from the history of Bristol, going back to the Kennedy Inquiry of 2001 and the damning 2008 report carried out by Godman and Mee following the departure of Ash Pawade, who replaced the surgeons James Wisheart and Janardan Dhasmana after the original Bristol scandal.

The families find it difficult to understand why this inquiry did not go back to at least 2008, given the concerns raised by Godman and Mee –this, surely, would have been an appropriate point at which to begin the scrutiny of the unit. The families have never understood the logic of the 2010 cut-off; while it is appreciated that the Review had to be proportionate, the opportunity to look at the unit's longer-term performance 2008, if not from 2001, has been passed up.

Lessons from the Bristol Scandal

The Review acknowledges Bristol's progress in employing more surgeons, carrying out more cardiac procedures. This was one of the key recommendations of the Kennedy Report of 2001. According to the Review:

The CHD service at Bristol has developed from one in which two surgeons were employed and the number of open-heart congenital paediatric procedures was in the region of 130 – 140 procedures per annum, to a situation in which three surgeons were employed and, in 2014, the Children’s Cardiac Service undertook 326 paediatric surgical operations.

While this is certainly a step forward, it still fails to meet the Kennedy stipulation (subsequently adopted by the Safe & Sustainable Review in the wake of the Kennedy Inquiry) of four surgeons carrying out 400 procedures per year at a specialist cardiac centre. This raises further questions about the extent to which the national picture of cardiac surgery is evolving with the lessons of Kennedy in mind.

Paragraph 4 of the Review's terms of reference stated that the inquiry would:

Assess the degree to which progress has been made in implementing those recommendations relevant to this review contained in the Report of the Bristol Royal Infirmary Public Inquiry published in 2001.

While the steering group for implementing the specific Kennedy recommendations was disbanded in 2003, the wider picture of child cardiac surgery reconfiguration remains a national imperative. The national review is yet to publish its findings, many years delayed, so the current Bristol Review may understandably have held back from a full analysis in this wider context. However, the feeling is that more could have been done in the Review to decisively situate Bristol in the national cardiac landscape.

Failings in care

The Review did find evidence that

On a number of occasions…care was less good and that parents were let down.

However, it goes on to say that

Reviews of individual cases which were carried out by this Review did not point to flaws in the management of cases or failures in the technical ability of the teams involved.

To the parents of children who died at Bristol and who have brought successful legal actions against the Trust, this aspect of the Review will offer little solace. There is no doubt that much of the treatment at the unit during the period scrutinised by the Review will have been of a good standard but, as the successful negligence claims show, this was far from universal.

There is a feeling among the families that the clinical management aspects considered by the Review did not place enough investigative focus on the failures that affected their children. The shock and grief at the loss of their children remains: two prominent Inquest cases, of Luke Jenkins and Sean Turner, related to children who were seven and four years old respectively; these were not children who were admitted to Bristol with low expectations of survival. The families of both these boys feel that the circumstances behind their losses have not been properly addressed, by the Trust and now by the Review.

Managing Levels of Staffing

The Review did make criticism of inadequate staffing which exposed children to risks:

In the light of the numbers of patients, their ages, their need for specialist care and the increasing acuity of patients, the Review felt that the nursing numbers would have fallen below the recommended levels on a reasonably frequent basis, and that there was a clear risk of harm as a result. Further, heavy reliance on Bank and agency nurses to maintain staffing levels is not consistent with providing an appropriate quality of care.

The report went on to say that:

[Nursing staff] lacked the ‘time and space’ to reflect on trends in the clinical status of the children they were caring for, as illustrated by the concerns expressed, in spring 2012, about the extent of the nursing staff members’ ability to identify children whose condition was deteriorating.

Missed opportunities to investigate

In an update on 22 July 2015, the Review panel said that it had been approached by 239 families, 'most [of whom had] expressed concerns'. A reading of today's report does not seem to fit with the definite impression that there were substantial numbers of parents with concerns about their children's treatment at Bristol, and the families are left to wonder how these concerns were dealt with.

The report also fails to make reference to the Jenkins family, whose son Luke died at the unit in 2012. The Root Cause Analysis into Luke's death stated that the Trust would carry out an investigation into the previous 50 deaths at the unit, but this does not appear to ever have been undertaken. This analysis, surely, would have been an ideal opportunity to consider whether care at the unit had been appropriate and, if not, what lessons could be learned.

One of the concerns that arose over and over from parents was that they felt marginalised and dismissed by senior Trust management. This was acknowledged in the Review:

On occasions, the senior managers of the Hospital, failed adequately to understand and respond effectively to the concerns of parents and adopted an unnecessarily defensive position in the face of the CQC’s observations. This led to a deeply regrettable breakdown in communication.

Morbidity data

The references to clinical performance at Bristol relate to 30-day mortality data (whereby children who survive this period are considered clinical successes, even if they suffer non-fatal injury), holding the unit up against other cardiac centres. 30-day mortality is still, therefore, the only measure of surgical success. According to the Review:

The outcomes of care at the Children’s Hospital were broadly comparable with those of other centres caring for children with congenital heart disease.

It is hard to see how an assessment like this can be considered complete, as it uses only mortality data. Without detailed data relating to morbidity (non-fatal injuries such as neurological damage or other disability), the way in which the unit is able to cope with the complications of cardiac surgery remain unclear.

The Review confirms that 'it is not possible at present to make robust comparisons of rates of morbidity between centres', although a 'major research project on this topic is in hand' and due to produce its findings within 'the next few years.' Until these data are available, I do not feel that a true picture of Bristol's outcomes is available to parents.

Consent

While we welcome the recommendations on improving consent procedures, these do not go far enough and do not appear to have kept up with legal position on consent. According to case law, a patient (or, in these cases, parents) must be given full explanations and be provided with all options; under the law as it now stands, this would involve being given the choice between your child having surgery at Bristol or, perhaps, another unit with more experience or a better record in a particular procedure. Although controversial, this is a patient right under the current law.

The Review has recommended that the Trust reviews its consent policy in the light of this recent case law and this must be undertaken with significant legal input.

Conclusion

In summary, the families do not feel that Trust's approach has been at all candid and are disappointed that this was not addressed more strongly in the Review.

To establish what really happened to their children they have had to fight for answers – attending meetings with Trust managers; receiving information piecemeal in Child Death Reviews and Root Cause Analyses; attending Inquests and bringing negligence claims. After all this, and the outcome of the Review for which they have waited two years, they still feel in the dark.

The Review recommended that:

The Trust should review the history of recent events and the contents of this report, with a view to acknowledging publically the role which parents have played in bringing about significant changes in practice and in improving the provision of care.

The families' experiences of communication with the Trust will naturally make them circumspect about the way that this recommendation will be put into effect. While the Review's emphasis on maintaining the cardiac unit's good points is positive and, in a difficult time for the NHS, perhaps necessary, it is impossible for the families not to feel that many of their questions over their children's care remain unanswered.

The Review has been widely reported in the national and local media.