John Lahart (Dublin South West, Fianna Fail) | Oireachtas source

I thank our guests for their presentations. I attended a recent event on Huntington's disease. In my conversations with the Neurological Alliance of Ireland, the importance of advocacy was made clear. To have even one or two voices advocating for those suffering from what are termed rare neurologically debilitative conditions is vital.

I want to focus on the nurse specialists initially and share a personal experience. My late father passed away in 1995. He had motor neurone disease. At that time, the care of patients with motor neurone disease was probably at the stage that the care of Huntington's disease patients is at now. There was very little available. I remember one experience that I shared with Ms Rogers yesterday. My late father had to spend a period of time in St. James Hospital. We invest a huge amount of trust and faith, and rightly so in many cases, in nurses, but what struck me from his experience there was that the nurses really did not have a clue what the symptoms and manifestations of motor neurone disease were. That surprised me at the time but it should not have done. They were completely lost. That situation has changed considerably as a result of the work of Professor Hardiman. There is now a course and a pathway for patients with motor neurone disease, assisted I suspect in part by some very high profile individuals who have had personal experience of it. It has been highlighted a lot in the media but it is not always possible for people with rare neurological conditions to highlight their cases or to have people advocate for them.

What training, over and above general nurse training, do specialist nurses get? Why are they so vital to the continuing care of people with neurological diseases and how long does that training take? When they have done that training, how is it applied in hospital settings and community settings?