Final report on the experiences of Parents and Children using Paediatric Spina Bifida services


The Belfast Health and Social Care Trust continues its commitment to continuous service improvement by publishing a report on the experiences of Parents and Children using Paediatric Spina Bifida services.

The background to the report was to seek new ways of actively involving and working in partnership with users of our services, carers and the wider community with a view to influencing and improving how services are provided.

The Report

We are pleased to inform you that the report on the experiences of parents, children and young peoples of the Royal Belfast Hospital for Sick Children’s Spina Bifida Services is now available and can be found here

This report is mainly representative of the views of parents and children who attended focus groups, responded to postal questionnaires, took part in face to face interviews over a six month period and finally a workshop.


While there are many positive aspects, challenges were also set for the Trust by you the parents and children and I am pleased to say there has already been many encouraging developments.

RBHSC staff fully embraced the report and the implementation of many of the report’s recommendations is underway. I hope that the findings will form the basis of future work in partnership with parents, carers, children and young people and SHINE who play a pivotal role in supporting families in all aspects of care of spina bifida.

Special Thanks

The Belfast Trust would particularly like to thank the parents and young people who gave up your time to engage and actively participate in talking to the Belfast Trust, I hope the report reflects the views; ideas received and demonstrate the Trust’s commitment to improving services.