Independent review into children’s congenital heart services

At the start of this month the Health and Social care Board released a report into paediatric congenital cardiac services in Belfast. The report was by a team of highly respected experts in the field chaired by Professor Sir Ian Kenny.

The panel made a number of important conclusions:

3 ii: It is the surgical element of the service that provokes concern.
iii: The panel has not identified any immediate safety concerns presented by the current arrangements
v: However, the paediatric congenital cardiac surgical service in Belfast is not sustainable

The reports suggests that their concerns be addressed within six months.

The panel looked at a number of potential models for paediatric congenital cardiac surgery. They regard maintenance of the status quo as “neither safe nor sustainable” and “high risk.” It also specifically rejected the idea of split site surgery between Belfast and Dublin as proposed by the Cross Border Health Report to the Centre for Cross Border Studies (page 63 here). The Panel report described the proposed cross site option as “Inadequate” stating:

vii Implementation of a formal ‘split-site’ arrangement with Our Ladies Children’s Hospital in Dublin service would not supply safe 24/7 service to children at the Belfast Trust nor would this arrangement comply with the relevant Safe and Sustainable standards (which have been endorsed by the relevant professional associations). (details pages 23-24 here).

The panel looks at the alternative of sending all such surgery to Dublin. It notes that this would “respond positively to the concerns put to the panel by clinicians, nurses and parents about the importance of a surgical service that sits in relative proximity to the child’s home.”

However, they do express concerns about this option saying about the Dublin service:

It is not within our terms of reference to assess the service in Dublin, but we noted with some concern that the Belfast team were unable to supply assurance as to their understanding of the “safety and sustainability” of the Dublin service.

We heard evidence from the Dublin team that there were plans to submit outcome data to the Central Cardiac Audit Database though it did not appear to us – from the limited evidence we heard- that there is embedded within the Dublin service a culture of routine collection, validation, analysis and reporting of outcome data. The submission of data to the European registry was stopped some years ago due to data protection issues.

Moreover the Dublin team stated that they do not currently meet a number of core Safe and Sustainable standards (we note in this regard that the standards are endorsed by the Society for Cardiothoracic Surgery of Great Britain and Ireland). (report’s added emphasis).

We were left with a sense that an enhanced relationship with Dublin is regarded by the Trust as the preferred option and as such it does not warrant significant scrutiny. We strongly disagree.

The report also looks at the possibility of transferring paediatric congenital cardiac surgery to England. It notes the problem regarding travel to England “This option would not respond positively to the concerns put to us about the inconvenience of travelling to the mainland for surgery, but it is for the Board to determine the relative importance of such representations.”

The positive points of transferring surgery to England are noted:

This option has the advantage of transferring the service to surgical units whose mortality outcomes are routinely monitored by the Central Cardiac Audit Database and whose current and future compliance with the Safe and Sustainable standards has been assessed. A number of these centres are regarded as being amongst the best in the world in terms of quality and outcomes. The impending Safe and Sustainable reconfiguration of the surgical units in England gives even greater confidence in this regard.

It is fairly clear which option the experts deem to be the safest and best – namely transferring surgery to the centres in England.

Edwin Poots has directed the Health and Social Care Board to establish a working group to look at the options. The local charity Children’s Heartbeat Trust has come out against the proposals complaining about the “emotional and practical problems” of not having paediatric congenital cardiac surgery in Belfast.

As noted by the Children’s Heart Beat Trust assorted politicians (with vastly less knowledge of the situation than the expert panel) have been quick to condemn the possible changes. John McCallister (a farmer – a good qualification for making decisions about paediatric cardiac surgery) has come out against the proposals. Sue Ramsey of Sinn Fein has predictably supported an all Ireland service despite the fairly clear superiority of patients travelling to England as outlined in the report above. Kieron McCarthy of Alliance has suggested patients going to Dublin would be better than going to GB (being a draper by trade he would clearly know much more about paediatric cardiac surgery than a panel of experts). Finally Alasdair McDonnell who is actually a doctor (though a GP and not a paediatric cardiac surgeon) has said that “Our parents and their vulnerable infants deserve better.” Unfortunately he has said this opposing children going to England which as the report notes is the best option.

Normally it is the opponents of ending local services who make overly emotional appeals. To put the contrary argument in equally emotive language. Would you be willing to go to the inconvenience of travelling to England (probably Birmingham) to ensure that your child was treated in one of the safest possible centres with the best outcomes. Are “emotional and practical problems” more important than maximising the chances of your child surviving and getting the best possible outcome? I know if it were (God forbid) my child I would be on the plane to Birmingham.