Report on the Children’s Health Ireland (CHI) Inquiry into Spina Bifida and Complex Scoliosis Scoping Exercise

What is this report about?

The report by Remy Farrell SC looks at concerns relating to the historical care and services provided to children with spina bifida, scoliosis and related conditions at Children’s Health Ireland (CHI).

What does this mean for children and families receiving care from CHI?

Your child's care will continue.

The Commission process is separate from the day-to-day delivery and improvement of healthcare services.

CHI will continue to provide care and support to children and young people and will continue to work to improve services while the Commission carries out its work.

We understand that the publication of the report and the prospect of a Commission may raise questions or concerns for families. Our teams will continue to be available to care and support and we will share any information that we have. The Commission is being led by the Department of Health – CHI will support this work where requested.

Will my child's treatment or appointment be affected?

Existing appointments, treatment and clinical care will continue to be managed by the relevant clinical teams.

If there are changes to an appointment or treatment plan, families will be contacted through the usual channels.

Will the Commission look at my child's individual care?

The Commission's final terms of reference will determine exactly what it can examine.

Will I have to speak publicly about my child's experience?

The Commission will determine how evidence is gathered and how confidentiality is protected.

What does the report say about communication with families?

Communication is one of the important themes identified in the report.

Families told the scoping exercise about difficulties getting information about waiting lists, appointments, cancellations, follow-up care and what would happen next.

We recognise that clear and timely communication is essential for families.

CHI will continue to work on improving communication with children and families and will use the learning from existing reviews and the Commission process to help strengthen our services.

• Patient Feedback and Support Service
• patient.feedback@childrenshealthireland.ie

What does the report say about waiting lists?

The report identifies waiting lists as an issue affecting a large number of children and families.

CHI recognises the impact that uncertainty and waiting can have on children and families.

Every day, families place their trust in CHI, and our dedicated staff provide care and expertise in highly complex circumstances. Access to care has improved in recent months, and waiting lists are reducing, governance and oversight have been strengthened, and our teams remain focused on delivering safe, high-quality care. Work to improve access and waiting-list management will continue.

What if I am currently waiting for an appointment?

If you are waiting for an appointment and are unsure about your child's position or what happens next, please contact the relevant CHI service or clinical team.

If your child's health or circumstances have changed, please make sure the clinical team is aware.

We understand that waiting can be stressful and that families need clear information about what is happening.

What does the report say about transition to adult services?

The report highlights concerns raised by stakeholders about the transition from children's to adult healthcare.

We recognise the importance of transition for every young person, particularly for those with complex needs who continue to rely on parents or caregivers into adulthood, and we have made improving and strengthening transition a key priority.

The CHI Transition Principles, based on the HSE’s Transition from Paediatric to Adult Services a National Framework, provide a shared framework for how we support young people and their families as they move from paediatric to adult services. They were co‑designed with young people and parents to ensure lived experience directly shaped our approach. The principles set out a consistent approach across all CHI teams and specialties, helping us deliver transition in a planned, coordinated and sustainable way.

The principles focus on:

• partnered planning
• early preparation
• working together across services
• equity and accessibility
• building knowledge, skills and confidence

We are continuing to develop resources for young people and families, including guides, tools and educational materials, with parental input to our approaches as well as liaising with our adult hospital and HSE colleagues. These resources will be tailored to developmental needs to ensure they are accessible and supportive for young people with cognitive challenges or complex care requirements. This work is happening now.

What does the report say about spinal surgery?

The report identifies a number of concerns relating to spinal surgery and governance.

Some of these matters have already been examined through other reviews, including the HIQA review and the Nayagam Review.

The scoping report recommends that the future Commission avoids unnecessary duplication of this work and focuses on specific questions that remain unresolved.

This means that the Commission will build on, rather than repeat, work that has already taken place.

What are the concerns about non-CE marked spinal springs?

The report refers to the use of non-CE marked springs in three spinal surgeries and to findings from a HIQA review.

The report also identifies a specific question about what senior management knew about the planned use of the springs.

The Commission, will determine how this matter is examined.

What does the report say about hip dysplasia surgery?

The report refers to differences in the number of hip operations carried out at different hospitals and differences in the thresholds used when deciding whether surgery was appropriate.

It recommends that the Commission examine why these differences existed and whether the approaches taken were appropriate. The report also recommends awaiting the results of the External Expert Panel Review (led by the HSE).

What does the report mean for families whose children had hip surgery?

If you have concerns about your child's individual care, you should speak to their clinical team, who can discuss their medical history and care with you.

Who are the cohort of patients referred to in the report under spina bifida?

The report describes a group of children who remained under the care of services in Crumlin after spina bifida services were consolidated in Temple Street.

The report raises questions about whether these children had access to the same level of multidisciplinary and specialist support as other children.

Will the Commission investigate individual staff members?

The Commission will determine its own terms of reference and how it conducts its work.

The scoping report has recommended a focus on systems, governance, management decisions and the experiences of children and families.

Staff will have appropriate processes and supports available to them throughout the Commission process.

How will CHI support staff?

We recognise that the report and the Commission process may be difficult and unsettling for staff, particularly for those who have cared for children and families over many years, and continue to provide care.

CHI will support staff throughout the process.

We will provide appropriate information and guidance and will work with staff and their representatives to ensure that they understand the process and know where they can access support.

Will staff be able to give evidence to the Commission?

The Commission will decide who it needs to hear from and how evidence will be gathered.

Where staff are asked to participate, CHI will support them in understanding the process and accessing appropriate advice and support.

Staff should continue to raise clinical, safety or operational concerns through the appropriate channels.

Will CHI cooperate with the Commission?

Yes.

CHI will cooperate fully with the statutory process if the Commission is established.

We will provide information and assistance as required and will support staff and families in engaging with the process.

We recognise the importance of transparency, accountability and learning.

Will the Commission delay improvements to services?

No.

The report itself makes clear that improvements to patient care should continue while the Commission carries out its work.

CHI will continue to improve services, address waiting lists, strengthen communication, support transition and work to improve the experience of children, young people and families.

What happens next?

The Government has agreed in principle to set up a Commission.

Terms of Reference are being drawn up by the Department of Health and the Office of the Attorney General.

What should families do if they have questions or concerns now?

If you have a question about your child's current care, appointment, treatment or waiting list, please contact the relevant CHI clinical team or service.

If you have concerns about your child's health or their condition has changed, please make sure their clinical team is aware.

A message to families

We recognise that this report may bring back difficult experiences or create new questions for children, young people and families.

We are committed to supporting families through this process.

Your child's care remains our priority.

We will continue to provide care, listen to families, improve our services and support children and young people while the Commission process takes place.

We will also support our staff, many of whom have dedicated their careers to caring for children and families, throughout this process.

Our commitment is to work openly and constructively with the Commission, to learn from its findings and to continue improving care for children and young people.