John Crown (Independent) | Oireachtas source

I thank the Minister of State, whom I am conscious is brand new and has been thrust into the firing line on this issue. I will try to be informative, instructive and collegial in my points.

I have the score card that the Neurological Alliance of Ireland received as part of the process. In university scoring system terms, the alliance got honours in capacity, need and achievability and a high pass in value for money. The only aspect it failed was strategic fit. For someone who is as sceptical about bureaucracy-waffle as I am, this seems insubstantial ground for taking a small grant away from an organisation that deals with many patients with different diseases.

Of the 25 groups under the alliance's umbrella, 11 applied for funding from the Scheme to Support National Organisations, SSNO, individually. None, zero, aucun, rien, nada was accepted. There has been a great deal of focus in the House and elsewhere on Huntington's disease, a cruel, devastating, incurable and inevitably destructive disease for which our society has made little provision in terms of, for example, qualifying for a medical card. The Huntington's Disease Association of Ireland has received €22,500 per annum since January 2008, but it had its funding decreased in 2009 and has now been defunded completely.

I have been asked to bring a matter to the Minister of State's attention. Perhaps he might discuss it with his Government colleagues who have more direct responsibility for health. Neurological services in Ireland fall dramatically short of what is available in other developed countries. We are not doing well. These groups have asked me to make the case as strongly as possible for a sustainable funding stream, one that is peer reviewed and publicly accountable, to be put in place for these modest but important core activities. I hope that our interaction tonight will provide the Minister of State with the opportunity and inspiration to raise this matter with others involved in the decision making process, particularly as it relates to the score card, which looks extremely odd.