Dr. Aoibhinn Walsh:

I will make a very quick point about the communication piece. We look at fixes that can be applied on a population level given that each individual child has so many needs. There is an absence of electronic healthcare records. We look at children being seen by multiple different health and social care professionals, whether it is disability services, primary care, dieticians or speech and language therapists. Even the name can be an issue. I could get a name sent to me based on the way the person who referred the child thought the child name was spelt through a translation app. We see the child and then he or she comes through to another service with a corrected spelling and is registered as two separate patients. As a result, the records are kept completely separately.

If we tee up a complex of specialised appointments for a child, who might be otherwise completely healthy but, for example, has a heart defect that needs a review, that is a complex tertiary level service. If a hospital does not know the child has moved on, he or she can miss an appointment. It would be helpful if there was some way within the constraints of the general data protection regulation, GDPR, to be able to know when these children move and where they move to, so that there is no lapse or failure of continuity of care. It would enable a much better use of all the resources being put in place to manage and support these children if we were able to locate them and if a hospital were able to liaise on a child with very complex needs, who could get very unwell and need ICU care. The local hospital in Castlebar should know about the child and have a medical record for him or her, rather than being there at 3 a.m. using Google Translate with a child who could potentially need an urgent transfer to an ICU in Dublin because no one knows his or her medical background. That is something that should be done, although I do not know how it would be done in the absence of electronic healthcare records. Some system is required so that these children can be located and their relocation known to the health and social care professionals involved with them. That would be of clear benefit to their well-being. We spend a huge amount of time doing that.