Professor Orla Hardiman:

I will raise one final point apropos of a comment by Deputy Shortall, which is to recognise that people with complex neurological disabilities often need services that are in addition to neurology, and to develop a pathway that is important in that regard is essential. Referencing Deputy Lahart, if we were to use Huntington's disease as an exemplar for that, Huntington's comes under the national prevention strategy, under neurology, under palliative care, under national disability services, under psychiatric services, and under genetic services. If we were to put together a working group with all of the appropriate stakeholders to develop what that would look like, this would be a first. It would be a demonstrator for how we show that we care about these conditions and it would also show how the money would follow the patient. It would be relatively straightforward to calculate the overall budget for what would be required there. The question is, however, where would the budget come from? Who is going to give the budget for that? Nobody is going to give the whole budget. It is going to come from seven or eight different sectors, but nobody wants to give up their budget. How do we make a system for a complex disease like Huntington's disease? We would need to ring-fence that and would need to have some kind of overarching mechanism to ring-fence the budget for those patients. At present, there is no mechanism to do that. Possibly it could be through the national prevention strategy but the best way to do that would be set up a working group to explore how best to establish that. That could be used as an exemplar for many of these complex conditions that are spread across many different siloed parts of the HSE where the critical care falls down because one part of that silo no longer has the resources and may have spent all of its money by March. That put that person falls out of the system there. That happens a lot in neurological conditions. That would be a good way to really explore that, by setting up a working group with all of the stakeholders for a complex condition with a massive unmet need such as Huntingdon's disease. I commend that to the committee, if the committee would be willing to consider that and make some recommendations in that regard.