Paediatric Congenital Cardiac Services Oral Statement to the NI Assembly by Health Minister Edwin Poots

Mr Speaker I wish to make a statement concerning the future delivery of paediatric congenital cardiac and interventional cardiac services (PCCS) for the population of Northern Ireland.
At the outset of this statement I wish to reiterate that my key priority throughout this process has been, and remains, to ensure the delivery of a safe durable high quality service for these vulnerable children.  In that context I have also sought to ensure that the concerns which have been raised with me by parents and by clinicians have been fully and effectively explored.
Members will recall that on 7 May 2013 this Assembly resolved that it: noted the publication of the preferred option document by the PCCS working group and the related Children's Heartbeat Trust report; called on me to reject the recommendation of a Dublin-only service for the future commissioning of regional paediatric cardiac surgery and interventional cardiology; and to select a model which retains primary provision and the ability to operate on emergency admissions in Belfast.
In responding to the motion I said that there is no easy solution to all of this. I hear from one side that, if you take a decision to remove services from Belfast and have surgical services provided outside Belfast, children will lose their life. I hear people from the other side say that, given the complexity of paediatric congenital cardiac surgery, children will lose their life if the service is not based at a larger centre. I remarked then that you would need the wisdom of Solomon and a whole lot more to get this right. It is a hugely challenging and emotive issue which never strays far from my mind, and it is incredibly difficult to square this circle.
From the outset I have been clear that if at all possible I want to avoid the need for children from Northern Ireland to travel to Great Britain for heart surgery except for the most complex cases which require highly specialised treatment. I believe that this is right for two reasons.
Firstly, parents should not be placed in a position of having to travel overseas with their child because of the strain that this can place on family life at a time when they wish to be close to their vulnerable child but may have other children at home to care for and jobs to hold down.
Secondly, I have made it clear that I would wish if possible to see children’s heart surgery retained in Belfast so that we can respond to those relatively few emergency situations where the child’s chances of survival might be increased by being operated on in Belfast. I also believe that by retaining a surgical capability in Belfast our capacity to maintain associated paediatric services, primarily interventional cardiology, over the long-term would be strengthened.
The recommendation of the PCCS working group that children’s heart surgery should in future be primarily commissioned from Our Lady’s Children’s Hospital in Dublin did mark a step forward in that this recommendation holds the prospect that the majority of children and their parents would not have to travel to GB for surgery, whatever long-term model emerges.
I recognise the significant efforts made by the working group, the Health and Social Care Board and the Public Health Agency to find a solution to this challenging issue. I understand fully and agree with their position that safety considerations in the delivery of this service are of paramount importance. At the centre of this is the question of how to run a 24/7 hour service that meets all the standards. Clinical advice tells us that surgeons doing interventional work should be doing in the order of 100 of these procedures each year individually to maintain skills and expertise. Our patient numbers in Northern Ireland are so small that we would never be able to reach the recommended capacity levels on our own.
The recommendation that was put to me by the working group is based on the fact that Dublin is a centre with a potential capacity to deliver a sufficient volume of procedures to meet clinical standards. However, this would mean the ending of surgery in Belfast and before I could consider such, I have to be fully assured fully that there is no feasible available option to retain surgery in Belfast. Therefore, I wanted to look at other potential options before making a final decision on this important matter.
Having considered all of the advice that has been put to me, it is my view that the only prospect for retaining children’s heart surgery in Belfast on a long term basis  is to forge a children’s heart services integrated network arrangement between the Belfast Trust and the Dublin children’s heart centre. This network offers the prospect of a single service providing surgery in both Belfast and Dublin. I can’t guarantee that such a model would necessarily provide a solution into the longer-term, but it is only right that I should exhaust every avenue to find out if it would be possible to deliver a model such as this.  It is also only right that I am guided by the best possible expert professional advice in considering this.  Such decisions matter too much to get wrong.
With this in mind I have worked closely with my counterpart in the Republic of Ireland, Dr James Reilly TD, to establish whether we could create the conditions to allow a fuller assessment to be made of possible options for the delivery of cardiology and cardiac surgery for congenital heart disease on the island of Ireland.  Such an all island approach represents a much broader consideration of potential service models than previous reviews were at liberty to consider.
I am pleased to inform the Assembly that Dr Reilly and I have been able to create these conditions. I will now relay to you a joint statement that Dr Reilly and I have agreed which will be issued today by our respective departments.
“Minister James Reilly, TD and Minister Edwin Poots MLA today together announced that a team of three international clinicians will carry out an independent assessment of current and future needs for cardiology and cardiac surgery for congenital heart disease in the Republic of Ireland and Northern Ireland.
The assessment team will describe the existing hospital services in both jurisdictions, outline options for service configuration and governance arrangements and report to both Ministers, jointly, recommending the most appropriate model that meets the population health needs and other requirements of both jurisdictions.
The assessment will in this way address the needs of children and adults in relation to congenital cardiac surgery on the whole island. It is due to start in January 2014 and be completed in six months.  When the Ministers receive this independent assessment, decisions can then be made on the optimal service provision which it is intended will be implemented for these services as soon as possible.
The Ministers recognise that the development and implementation of any safe and sustainable model of care requires careful planning, effective engagement and buy-in of all stakeholders, in particular family representatives and professionals and this assessment is seen as essential to the achievement of that shared goal.
In the interim, pending the completion of the assessment in June 2014, health service management and clinicians in the Republic of Ireland will continue to work with their colleagues in Belfast to provide and develop support to the services in Northern Ireland”. End of joint Ministerial statement
The team will be chaired by Dr James Mayer, Consultant Cardiac Surgeon, Boston Children’s Hospital. The cardiology expertise will be provided by Dr Adrian Moran, Consultant Cardiologist, Maine Medical Centre, Portland. An anaesthetics expert will also be confirmed to complete the team before it commences work in January. The team will be supported by specialist professional nursing representation and other expertise as necessary.
The terms of reference for the team are set out in the Annex circulated to Members with my Statement.
I want to thank Dr John Mayer and Dr Adrian Moran for agreeing to take forward this assessment and look forward to receiving their report.
Mr Speaker I should like to record my thanks to Minister Reilly for his efforts in working with me to secure the short-term arrangements and the assessment to be carried out by the external experts.
I believe that the assessment by this external team will bring international best practice and fresh thinking to bear on this challenging issue. It provides a means of addressing the need for cardiology and cardiac surgery for congenital heart disease on the island of Ireland and to identify the most appropriate model that meets the population health needs and other requirements of both jurisdictions.
While the assessment by the international team of experts will address the long-term future of children’s heart surgery in Belfast there is a more immediate situation to be addressed in respect of the short-term delivery of this service following Professor Wood’s retirement later this month.
As the work of the international expert team on a long-term solution is taking place, Minister Reilly and I have agreed that health service management and clinicians in the Republic of Ireland will continue to work with their colleagues in Belfast to provide and develop support to the services in Northern Ireland.
I very much welcome this commitment and the detailed arrangements will be finalised by health service management and clinicians, North and South, in the days ahead. As this is an operational matter it would not be appropriate for me to comment further on this at this moment.
However, I wish to make clear that some children whose procedure is considered to be of a high risk will continue to be transferred to centres in England for surgery in line with risk management arrangements. An important point in all of this is that each and every case will be given individual consideration and the most appropriate location for the procedure to be carried out will be determined on the basis of clinical judgement.
I also wish to inform the Assembly that while I have been assured that the current PCCS service in the Belfast Trust is safe and will continue to be safe it is nonetheless a fragile service and we should not under estimate the challenges which low patient volumes present to sustaining such services.   
I therefore intend to take every available measure to ensure that the service in Belfast is as robust as possible and in the weeks ahead children’s heart surgery will transfer from the Royal Victoria Hospital to the Royal Belfast Hospital for Sick Children. Staff will also receive training in the use of ECMO to support those very sick children who require support for their heart and lungs following surgery. Both of these developments have been requested by the cardiac team in the Belfast Trust as a means for further strengthening the service.
Mr Speaker none of us should be in any doubt of the expertise, skills and dedication of the staff providing these service nor indeed their care and compassion in supporting parents in extremely difficult circumstances.  Those considerations and the safety of these children have remained to the forefront of my mind. I believe it is appropriate that at this point I should pay tribute to Professor Freddie Wood for the service and dedication that he has given to cardiac patients from Northern Ireland. Indeed the entire paediatric congenital cardiac team at the Belfast Trust provides a first class service for the children of Northern Ireland.
Mr Speaker to conclude; I hope that both the arrangements I have outlined and the assessment by the external experts will go some way to assuage the concerns of all those who have expressed concern about the future of children’s heart surgery and interventional cardiology in Belfast. We have come a long way from the original reports which would have removed surgical services and potentially undermined cardiology services as well.  I have on many occasions met patients, parents, surgeons and cardiologists.  I have also visited the Clark clinic and Paediatric Intensive Care and witnessed the care provided by the clinical and nursing teams and the level of support provided by parents to very sick children.  I wish to express my thanks for their patience in what has been a long drawn out process.  It has been protracted because the solutions are complex and will potentially cause considerable upheaval and it will be some months before I am in a position to reach a final decision on the long term future of this service but I believe that when that time comes I will have had the benefit of having explored every possible option to securing a high quality paediatric congenital cardiac service for the children of Northern Ireland. That has always been my clear aim and continues to be my goal. I Trust that the Assembly, parents, families, clinicians and the public recognise my only desire is to act in the best interests of everyone involved.

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