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All-Island Congenital Heart Disease Network Conference takes place in Titanic Belfast

420 children and young people from Northern Ireland have received treatment in Crumlin since 2015 under this new and innovative model of care

Over 60% of all children in Northern Ireland who require a cardiac procedure have their treatment on the island

All Ireland Heart Disease Conference

The 2019 All-Island Congenital Heart Disease Network Conference, which is being attended by more than 250 delegates, takes place in Titanic Belfast on Friday and Saturday.

The All Island Congenital Heart Disease (CHD) Network is a unique health initiative delivering better outcomes for children across the island of Ireland - that will be the message this weekend as clinicians and families of children with heart disease gather in Belfast to hear from global experts in paediatric cardiac care.

 

The Network’s fourth annual conference will bring heart families from all parts of Ireland together with clinical and nursing teams from both jurisdictions and beyond to exchange their experiences and learn about the latest international developments in clinical practice from world leaders.

 

Speaking ahead of the event, Dr Len O’Hagan, Chair of the CHD Network Board, said: “We are delighted to host the 2019 All Island Congenital Heart Disease Network conference in Titanic Belfast. The partnership approach between the Northern Ireland and Republic of Ireland clinical and management teams, and the involvement of patient representatives, is essential to the success of the Network. Today’s event provides an opportunity for further shared learning which ensures that global enhancements in care provision for children and young people with heart disease are advanced across the entire service. The fact that we have some of the leading names in paediatric cardiac care from across the globe addressing the conference highlights the Network’s ambition to join the ranks of the world’s best children’s heart care providers.”

 

Keynote speakers on both days will be the internationally-recognised paediatric cardiologist, Dr. Dan Penny, from Texas Children’s Hospital, and Dr Nico Blom, paediatric cardiologist, Leiden Univeristy Medical Centre. Day Two will focus on families and the practical care for children with heart defects.

 

A number of important Network developments were also marked by delegates at the Conference today, including:

  • The official opening of the new Childrens Heart Centre, Royal Belfast Hospital for Sick Children, Belfast, on the 14th June 2019, by Rory Best OBE.
  • The Network will be recruiting two Professors of Paediatric Cardiology, one North and one South of the border, with the aim of advertising both posts before year end.
  • The first of five planned Paediatricians with a special interest in Cardiology has commenced in Cork University Hospital, with other posts to commence in Craigavon, Galway, Derry and Limerick in 2020 / 2021 – ensuring all children will be treated as close to home as is clinically appropriate.

Chairman of the All-Island Congenital Heart Disease All Island Network, Dr Len O’Hagan said; “It’s emotionally, psychologically, physically and financially draining for a family from Northern Ireland to have to travel to Great Britain for cardiac treatment and the aim of the Network is that this will no longer be necessary*. Not only have we made significant progress in the last 4 years, but in the past year we have seen an 83% increase in the number of children from Northern Ireland having surgery in CHI at Crumlin and an increase of 23% in cardiac catheterisations. We have now reached a stage where over 60% of all children in Northern Ireland who require a cardiac procedure have this carried out on the island. I would like to acknowledge the ongoing dedication and commitment of the Network team, in particular to the surgical, intensive care and interventional cardiology team based in CHI at Crumlin.

“The network consists of hundreds of people, from surgeons to family members who have proved that the love of their children surpassed politics and borders. They are role models for all citizens, north and south, working together to deliver what really matters on our small island,” he said.

Professor Frank Casey, Paediatric Cardiologist at Royal Belfast Hospital for Sick Children and clinical lead in Northern Ireland, said, “We are committed to working with colleagues across the island of Ireland to continue to improve clinical care and outcomes for patients north and south. Our collective, whole effort is greater than the sum of its parts,” he said.

The CHD Network is the first integrated clinical network to operate on an island-wide basis, built upon the commitment of respective governments and close collaboration between healthcare professionals, managers and patient representatives, working together to develop “a world-class patient and family-centric CHD service for the island of Ireland”.   

The All-Island Congenital Heart Disease All Island Network was established in March 2015, and is the first clinical network of its kind, providing an all-island service surpassing politics and borders*. The Network manages an all-island service delivery model for congenital heart disease in children, building on existing services and drawing them together in a network of care which is patient focused and locally responsive.

Now, all emergency and urgent paediatric cardiac surgery for children and young people on the island of Ireland takes place in Children’s Health Ireland (CHI) at Crumlin. Since the beginning of this year, 53 children from Northern Ireland requiring paediatric cardiac surgery, who otherwise would have been transferred to Great Britain, were treated at CHI at Crumlin.

**Children who require transplant will still need to travel to GB – There are no Paediatric transplant services in NI / ROI.

 

Ends//

Vision

To establish a world-class family-centric congenital heart disease service for the island of Ireland

Our Purpose

  • To provide appropriate CHD treatment for all children & young people on the island of Ireland as close to home as deemed appropriate
  • To deliver timely access to quality treatment through the creation of a single waitlist that is aligned to international wait times
  • The provision of a safe and sustainable model that serves the needs of the children and families into the future
  • The development of a research and innovation hub that delivers best practice solutions utilising a unique genotype on an all-island approach

 

The achievement of our vision and purpose is guided by the CHD Network business case, developed in collaboration with key stakeholders from across the Network and approved by the Departments of Health, ROI & NI. The CHD Network business case underpins the workplan implemented by the Network Team.

 

Key Achievements to date

 

  1. A new extension to the Clark Clinic, Royal Belfast Hospital for Sick Children, Belfast with the new Cardiac Out-patient Department, officially opened in June 2019.
  2. All emergency and urgent paediatric cardiac surgery on the island now takes place in CHI at Crumlin, and 2018 saw the commencing of the transfer of some elective surgical patients. Over 60% of NI children who require cardiac surgery now have their surgery performed in CHI at Crumlin.
  3. A weekly North South telemedicine case conference to review and plan for surgical paediatric CHD patients on the island.
    4. A new hybrid catheterisation laboratory opened in 2015 in OLCHC and now facilitates an all island service with a single waiting list and all procedures across the island being carried out in CHI at Crumlin, 290 Children from NI have had their procedures carried out in the new lab since 2015.
    5. The network is appointing Paediatricians with a special interest in Cardiology to the hospitals at Cork, Craigavon, Galway, Derry and Limerick meeting our commitment that all children should be treated as close as possible to their homes.
    6. Two research professorships (Professor of Paediatric Cardiology) are about to be advertised one North and one South.
    7. Common Clinical standards across both jurisdictions have been agreed by the Network Clinical Advisory Group and are being implemented.
    8. Shared educational programmes have been developed attended by Nurses across both jurisdictions.
  4. 9. A review of the repatriation services for NI families of deceased children following cardiac surgery in Great Britain carried out IN 2018. 6 recommendations approved by the Network Board and Submitted to the NI DoH.

 

Background on the All-Island Congenital Heart Disease All Island Network

On the 14th of October 2014, a joint policy statement was published by the Minister for Health and Social Services in Northern Ireland, Jim Wells, and the Minister for Health in the Republic of Ireland, Leo Varadkar, referencing the expert International Working Group (IWG) report on the Assessment of Cardiology and Cardiac Surgery for Congenital Heart Disease in Northern Ireland and the Republic of Ireland. The report made clear and explicit recommendations on the development of a single congenital cardiac service for Northern Ireland and the Republic of Ireland, thus establishing the All-Island Congenital Heart Disease Network. A total of 14 recommendations were presented which together form the IWG’s proposed model for a service that would meet the needs of the entire population with congenital cardiac conditions, whether adult or child, in Northern Ireland and the Republic of Ireland.

Phase one set out the requirement for all paediatric surgical and cardiac catheterisation cases for the island of Ireland to be performed CHI at Crumlin with a phased increase in capacity to absorb the additional volume. Approximately 120 children with congenital heart disease are referred per year for cardiac surgery in Northern Ireland, and these patients will be managed and cared for in a shared-care model with medical care being delivered in the Royal Belfast Hospital for Sick Children and surgical care at CHI at Crumlin. All cardiac catheterisation cases that had been performed in Northern Ireland were subsequently to be undertaken at CHI at Crumlin. The establishment of a cross-border collaborative implementation commission enabled the work to commence on increasing capacity and resources to accommodate the integration of services from Northern Ireland.

Surgery and interventional procedures are only two elements of a complex network of services for children with congenital heart disease that begins with prenatal screening and continues through to the transfer to adult services. It is recognised that children and families are entitled to local access for as much other cardiac-related care as is safe and appropriate. The All-Island Congenital Heart Disease Network has set about Phase 2, the establishment of Paediatric Cardiology Peripheral Services in keeping with the National Model of Care for Paediatric Healthcare Services in Ireland, the NI Strategy for Child Health, the NHS Congenital Heart Disease Standards and Specifications, underpinned by the vision and mission of the CHD Network.

The All-Island CHD Network was established with the purpose of providing a framework of governance to facilitate the work required and recognise the cross-jurisdictional responsibilities, following Ministerial acceptance of the recommendations of the International Working Group (IWG). The All Island CHD Network manages the all-island service delivery model, building on existing services and drawing them together in a network of care which is service user focused and locally responsive. The basic concepts of the network are of partnership, service integration and formal arrangements, defined as linked groups of health professionals and organisations from primary, secondary and tertiary care, working in a co-ordinated manner, to ensure equitable provision of a high quality, clinically effective service.

 

Impact of our Work

The ability to provide emergency, urgent and elective cardiac surgery to children on the island of Ireland reduces the likelihood of a child from Northern Ireland and their family travelling to Birmingham or London often via air ambulance and having to remain there until the child has recovered sufficiently from their surgery to enable them to be transferred back safely to the Royal Belfast Hospital for Sick Children, a process that can often take weeks.

The cost of having to travel to Great Britain is emotionally, psychologically and financially significant for the family and child involved. At a time when the child and family are having to deal with the worry and stress of cardiac surgery, additional stressors are placed upon them, stressors that the All-Island CHD Network is working hard to ensure don’t remain a future feature of CHD services across the Island.

In addition to the transfer of cardiac surgery to CHI at Crumlin, the All-Island CHD Network has commenced phase 2 of the Network Plan – to provide access to all CHD services for children and families as close to home as possible. There are 5 Paediatricians with Expertise in / Special Interest in Cardiology to be appointed across the Ireland in the next 2 years with the aim of reducing the wait time to see a Paediatric Consultant. Each Consultant will also be supported by a Cardiac Physiologist and a Clinical Nurse Specialist, providing access to diagnostics, information and support for families’ closer to home. The first PEC has commenced in Cork University Hospital.

The aim of the Network is to provide a world class CHD service across the Island – the appointment of 2 Professors of Paediatric Cardiology - one in each jurisdiction, the sharing of nurse training programmes, the implementation of the CHD standards, the development of a transitional care programme, the implementation of the Repatriation recommendations in NI and the development and implementation of clearly defined pathways of care are all currently underway as the Network continues in its quest to achieving its vision.

 

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