John Crown (Independent) | Oireachtas source

Cuirim fáilte roimh an Aire Stait. Comhghairdeas. I wish him the best of luck in his new responsibilities.

I raise the issue of the defunding of the Neurological Alliance of Ireland which was founded in 1998 by concerned activists and specialists, principally Professor Orla Hardiman. An umbrella group was founded to provide for competency in advocacy in dealing with a group of very uncommon diseases. Some are so uncommon that there might have been one, two or three sufferers from the disease in Ireland. People with these diseases have great difficulty in seeking an advocacy position. They did have a commonality of interest in terms of physical impairment, cognitive impairment and emotional impairment that could occur and in terms of the supports needed. During the late 1990s and the early years of this century the group was extremely active and had a number of practical inputs and outputs. It managed to formulate new standards of care for patients with disabilities to varying degrees and also laid out a road map which was subsequently used by Comhairle na nOspidéal. From then on it found that its inputs were being taken on board by the HSE in terms of the clinical leads programme. It also runs an annual brain awareness project.

It has recently been announced that the group has lost its entire funding. It has received annual funding of €60,000 from the Department of the Environment, Community and Local Government through the scheme to support national organisations. The application for funding in 2015 has been turned down. This is the only funding the organisation receives. As a result, the alliance will be forced to cease operations in December. It asked for €80,000, an increase of €20,000 owing to increased demands on the organisation being the only umbrella group. Let me reiterate that the group has no other source of funding; it is totally reliant on the Department of the Environment, Community and Local Government's scheme for its core funding.

This is a very lean organisation. There are many charities that need to look at their inner workings in terms of being large, bloated, inefficient and top heavy, with big public relations and other departments. This is a very small organisation. It has one development manager who works part time, a four fifths basis, and an administrator who works part time, on a two fifths basis. The entire board give of their time and services for free. The money is spent on core running costs - the primary members of staff, rent and so on.

It will be the experience of those familiar with the great work done by the group that it has played a critical role in raising awareness of brain and other neurological diseases, facilitating fund-raising and increasing the focus on research in these activities and also in making sure decisions made by the Department, the HSE and other support agencies are well informed. The small amount of money allocated has been extremely well spent. I do not like to get up on my own hobbyhorse, but the amount of money spent on the Neurological Alliance of Ireland is spent many times over in health and social services and, I suspect, the Department of the Environment, Community and Local Government on public relations. The money would be repaid to the State amply in terms of improved outcomes for patients who suffer from these conditions, many of which, as I said, are so rare that those who have them really believe they are on their own. The alliance has given them cohesion and critical mass. I, therefore, urge that the matter be looked at again.

I thank the Minister of State for coming to the House so soon after his appointment. This is appreciated.