Professor Orla Hardiman:

I thank Deputy Lahart for his comments on motor neurone disease. It is probably a very good exemplar of what can be done. I take the Deputy's point about the tragedy of some people who are in the public domain who developed this condition. I must also say that the voluntary organisation, the Irish Motor Neurone Disease Association, IMNDA, was very much instrumental in the development, through Beaumont Hospital, where I work, of a national service for motor neurone disease. Advocacy is important but commitment and an understanding of the disease is equally so and that was done in collaboration with the IMNDA.

In terms of the types of training we would require for specialist nurses for these rare conditions, the programme for training, as I mentioned to Senator Kyne earlier, is that nurses will train initially at staff level and then at clinical nurse specialist level. That training is undertaken, to some extent, like an apprenticeship by operating within the system and being mentored by more senior individuals. The role of the advanced nurse practitioner is one to train and teach as well. We have very few advanced nurse practitioners at the moment in Ireland but with those that we have, and also the candidate advanced nurse practitioners, much of their remit is to undertake training and the education of younger colleagues and colleagues in other disciplines in order that the experience the Deputy's father and his family had would not be replicated and that people would understand the disease.

There are conditions for which we have not really been able to initiate that type of training programme of which Huntington's disease is a very good example. Where the condition is complex, where the manifestation or presentation of the condition can be quite chaotic and difficult. There is also a high risk of falling out of the system and of not being able to access service because of behavioural change. Understanding the factors that lead to this is really important. There is a need to train nurses and other healthcare practitioners to understand the chaotic nature of the condition, identify means by which we can continue to care for those people and provide a meaningful service that enhances and improves quality of life for people from the time of diagnosis through to end of life. Does that answer the question?