Dr. Eilish Burke:

We have a PhD student who is working on this particular issue. We anticipate that there is atypical presentation and it may present earlier because we see that in many other conditions. However, awareness and education are something that should be there and, unfortunately, awareness was very poor.

With my PhD student, what we are developing is inclusive, driven by people themselves. It is a patient and public involvement, PPI, model to develop these educational resources, but that is with one service. What we would envisage is that this would be adopted by the HSE and be shared and driven out among all services, which is really needed.

The Deputy referred to the health assessment. People do get a health assessment. It is a HIQA requirement that they get an annual health assessment. What services have told us is that GPs are under pressure. We know that. They have five- or ten-minute appointments, which is not sufficient to make the reasonable adjustments that people with intellectual disabilities need, but also many GPs are seeing it as outside the normal delivery of care and they are charging an extra €100 for that. People are simply not able to afford that.