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.

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  • Mister_Joe

    Some of the people opposing the transfer to England are describing it as a cost saving measure. If that were so, I can understand their opposition. But surely as the report says, the small number of interventions means that it is just not possible to retain the expertise. If we spent a lot of money to keep the best surgeon resident in N.I., her or his skills would deteriorate due to the lack of continual practice.
    It would be important to provide financial assistance in money or kind to the child’s caregivers while they are in England.

  • carnmoney.guy

    How balanced can a report be that states
    ….It is not within our terms of reference to assess the service in Dublin….
    … from the limited evidence we heard….

    then goes on to ignorantly misspell the name of the Dublin hospital, halfway through the report… ( it is Our Lady’s not Our Ladies )

  • Turgon

    carnmoney.guy,
    The reason is that they were not asked to assess Dublin. However, they state that Dublin does not submit its data to the European registry and that the Dublin team themselves reported that they in Dublin do not meet certain core standards of the Society for Cardiothoracic Surgery of Britain and Ireland. Hence, the report’s authors seem to have some concerns as well as being worried about commissioning and the slow pace of creating formal arrangements between Belfast and Dublin.

    The report balances a number of options. It does not specifically state that moving surgery to Dublin is wrong: it merely presents a series of concerns its author’s have. In contrast they point to the very robust scrutiny in place in GB and the very good results of some of the units.

    The reports authors are:
    An academic lawyer who chaired the Bristol Heart Babies Enquiry; Two consultant paediatric cardiologists, a paediatric anaesthesist, a cardiothoracic surgeon, a director of children’s nursing and two very senior health service bureaucrats.

    These are not the sort of people to jump to conclusions or be inappropriately biased. The fact that they come down so clearly in favour of surgery being performed in England does not mean the report is unbalanced. It means that that is their expert advice. This should make everyone sit up and take notice. Doing what they have advised against would be foolish in the extreme.

    Why should we in Northern Ireland accept anything less good than people in any other part of the UK? Why should we as UK tax payers accept a service which by its own admission does not adhere to some of the core standards agreed to by its own professional body?

  • OneNI

    Last time I looked the PSNI had 4 helicopters and Birmingham Children’s – which is regarded as one children’s hopsitals in Europe had a heli port.
    Best service possible or best local service?

  • carl marks

    OneNI
    Heli transfer is regarded as an emergency only resource, for several reasons, cost, lower capabilities regards weather (less than fixed wing aircraft), they can be a traumatic experience for the patient thus are only used when location is a issue (remote or isolated terrain) or alternatively to deliver specialists; Medics, mountain rescue, search dogs etc to find or assist injured people.
    They are not the best suited to the routine transfer of patients.
    While Dublin may be the preferred location as regards to proximity and it also may well be a medically excellent centre but without the proper access to correctly collated stats and data showing this the report has really no choice but to go for an English based solution.
    It would be hoped (both for us in the north and those in the south) that the Dublin unit meet the necessary standards, then the whole thing could be reassessed but until then I’m afraid that on top of everything else the hassle of having the ops across the water added to their burdens, sad.

  • carl marks

    he last sentence referred to the patients and thier familys.
    sorry

  • Presby

    My child was operated on in the RVH at birth, then at 1yr old transferred to Birmingham for complex, life saving open heart surgery. We recieved incredible support from the NHS. Whilst it would have been ‘easier’ for us to stay in Dublin, our overwhelming concern was to save the life of our son. My wife and I did not care where we went to, we just wanted the child operated on, irrespective of where the surgery took place. I think the balanced tone of the original web post and subsequent comment reflects how we as parents feel.

    Perhaps only those who have seen first hand the astounding level of excellence, initially at Clarke Clinic,RVH, then at Birmingham can appreciate how families and children are looked after. The NHS delivers world class children’s heart surgery – available to children from NI.

    Of course logistically, it may make sense for a stronger network with Dublin, and I hope that my comments are not in any way taken as a criticism of the service there.

    For the record, our son has enjoys life to the full and plays a full role in contact sports and school at 9 years old.

  • Kit_Carruthers

    Presby – I wish that story was heard by so more people, as it is a textbook example of a parent’s concern for the best possible concern.

    I fear this is one where most people will give it a simple glance and go with the populist view that services in NI are being eroded simply as a money saving exercise.