Department of Health of Ireland

05/15/2024 | Press release | Distributed by Public on 05/15/2024 11:16

First meeting of the Paediatric Spinal Taskforce held on 2 May 2024

A positive first meeting of the Paediatric Spinal Taskforce was held on 2 May 2024. Chaired by Mark Connaughton SC, the membership of the Taskforce includes representatives from patient advocacy groups, the Health Service Executive (HSE), Children's Health Ireland (CHI) and the Department of Health.

Taskforce members agreed to work collaboratively to drive improvements and enable all stakeholders to contribute to the overall improvement and development of paediatric spinal services. It is intended to publish the minutes of this Taskforce in the normal way, once approved by members at subsequent meetings. Pending that publication members agreed to issue a brief statement in the interests of transparency and to update patients, their families and the public on their work.

Prior to the first meeting of the Taskforce, the Chair invited all stakeholders to meet with him individually to begin engagement on the work to-date and the direction of the Taskforce. The Chair had positive and constructive engagement with the stakeholders that he met and these meetings helped inform the Terms of Reference (ToR) of the Taskforce (see Notes to Editor below).

Two patient safety processes are currently underway: an external review, led by Mr Selvadurai Nayagam into the paediatric orthopaedic surgical service at CHI Temple Street and a parallel Health and Information Quality Authority (HIQA) review into the governance and oversight of processes within CHI on the use of surgical implants/implantable medical devices, including a focus on the use of non-CE spring implants during spinal surgery in CHI Temple Street. The Taskforce heard that both reviews are currently expected to be completed this summer. The Taskforce will then provide oversight for the implementation of any recommendations from these reports.

Significant work has been ongoing in the area of paediatric spinal services. A Paediatric Spinal Surgery Management Unit has been established, led by Mr David Moore. The team has been working with CHI on a number of priorities, including but not limited to Service Improvements, Waiting Lists, Systems and Reporting Management Practices, Outsourcing, Insourcing, Clinical Management of Spinal Services and Transitional Adolescent Scoliosis Surgery Services.

The HSE have also been collaborating with CHI on improving access to aids and appliances to patients in the community.

The National Patient Safety Office (NPSO) in the Department of Health will continue to engage and communicate with patient advocates and associated groups on the work of the Taskforce and other aspects of Paediatric Spinal Services.

The Terms of Reference of the Taskforce were finalised and agreed at the meeting and published today.

Notes

Paediatric Spinal Taskforce: Terms of Reference and Membership

Introduction

In 2023, following a number of specific clinical and patient safety concerns regarding the paediatric orthopaedic surgery service in CHI Temple Street the HSE's Chief Clinical Officer commissioned a comprehensive patient safety review and assurance process into the paediatric orthopaedic surgery service. The Minister for Health also directed HIQA to conduct a statutory review of governance and oversight of processes for surgical implants in CHI.

In January 2024, a dedicated paediatric Spinal Surgery Management Unit was established in CHI with a consultant surgeon heading the team and key personnel appointed. This stakeholder paediatric spinal taskforce is being established to drive improvements and enable all stakeholders to contribute to the improvement and development of the services. This includes all conditions that are associated with any type of scoliosis or kyphosis, such as Spina Bifida and Cerebral Palsy.

Mark Connaughton SC was appointed by the Minister for Health to chair this Taskforce on 11 March 2024. Mark will be expected to lead a collaborative process and steer this important work through to conclusion, ahead of the consolidation of these specialist services within the new children's hospital on the shared campus at St. James's Hospital.

The work of this Taskforce will, at all times, be guided by the Principles under Article 24 of the Convention on the Rights of the Child on the right of the child to the enjoyment of the highest attainable standard of health and to facilities for the treatment of illness and rehabilitation of health.

Membership of the Taskforce, convened under Mark Connaughton SC, is drawn from key stakeholders such as advocacy groups, the Department of Health, the HSE and clinicians at CHI. Terms of Reference were agreed by the Taskforce on 2 May 2024. The Taskforce will report directly to the Minister and the Chair will be required to update the Minister on a regular basis on the progress of its work.

Terms of Reference

Engage with all stakeholders (parents, patient advocates, clinicians and those living with the disabilities and their families) and provide a meaningful opportunity for them to express concerns and propose improvements.

Listen, engage, and act on the advice and concerns of parents, patient advocates, clinicians and those living with the disabilities and their families.

Outline improvements needed for scoliosis, spina bifida and cerebral palsy spinal services, including, post-surgical specialist rehabilitation, and full and appropriate access to community services, and transition from childhood to adult services.

Engage on the development and delivery of services, implementation of additional capacity, improvements to the governance and management of paediatric spinal services, including improvements to the waiting list management and clinical pathways.

Engage with the HSE and the Spinal Surgery Management Unit in CHI to make best use of insourcing and outsourcing options where clinically appropriate, and provide a wraparound care package for children and their parents/guardians, to include follow-up care post-operatively in Ireland.

Engage with the HSE to provide the necessary primary and secondary care for scoliosis, spina bifida and cerebral palsy spinal patients.

Ensure the delivery of equitable and quality access to care in all services provided to patients requiring spinal care for scoliosis, spina bifida and cerebral palsy, and in line with best international practice.

Provide oversight and assurance of the implementation of recommendations from relevant reports, i.e. the Nayagam Independent Review and the HIQA Review on non-CE medical devices.

Identify opportunities to contribute to a patient-centred culture and support open, honest, and transparent communication with families.

Support strategic and clear collaborative communications aimed at improving public understanding and trust in the specialised services available for scoliosis, spina bifida and cerebral palsy spinal patients.

Determine an appropriate engagement process with patient advocacy and parent groups following the work of the Taskforce.

Provide update reports, through the Chairperson, to the Minister for Health as required.

Membership of Taskforce (from 2 May 2024)

1. Independent Chair - Mark Connaughton

2. Patient Advocate (Scoliosis Awareness Support Ireland) - Deirdre McDonnell / Elaine Kelly

3. Patient Advocate (Spina Bifida Hydrocephalus Ireland) - Gerry Maguire

4. Patient Advocate (Cerebral Palsy Foundation) - Lily Collison / Rachel Byrne

5. Children's Rights Specialist - Conor O'Mahony

6. Department of Health representative (National Patient Safety Office) - Rachel Kenna

7. Department of Health representative (National Patient Safety Office) - Mary McGeown

8. Department of Health representative (Acute Hospitals Policy Division) - Tracey Conroy

9. HSE Representative (Chief Clinical Officer's office) - Colm Henry

10. HSE Representative (Programme coordinator) - Shona Schneemann

11. HSE Representative (Regional Executive Officer, Dublin and Midlands) - Kate Killeen White

12. CHI Representative - Fiona Murphy

13. CHI Representative (Spinal Surgery Unit) - David Moore

Invited:

1. Patient Advocate (The Scoliosis Advocacy Network)

2. Patient Advocate (The Spina Bifida & Hydrocephalus Paediatric Advocacy Group)

3. Patient Advocate (OrthoKids Ireland)