Ciara Hudson, Gemma Watts and Marie O'Connor made a representation to the Joint Committee on Health and Children on behalf of the Irish MND community on Tuesday last, 23 February 2010.
The Joint Committee were represented by Kathleen Lynch TD, Jan O'Sullivan TD, Rory O'Hanlon TD, Deputy Aylward TD, Dan Neville TD, Senator Margaret Conlon and Chairman for the meeting Sean O Feraghail TD.
Meeting with the Joint Committee on Health and Children
On the list of priorities for the meeting were the issue of medical card access for all persons diagnosed with Motor Neurone Disease i.e. that a medical card be granted based on medical grounds rather than by means testing. In addition the current situation whereby we have one specialist nurse working remotely to meet the needs of the entire MND community was discussed.
Our presentation to the Joint Committee began with a brief working overview of Motor Neurone Disease, the available statistics and the most common symptoms encountered by people living with the disease in Ireland.
We continued by outlining the development of specialist services over the past twenty five years and emphasized that the services were demand led by the MND community and were a response to the needs expressed by families living with the disease.
The services outlined included our nurse specialist service, the equipment and technology loan bank, and the home help supplement. We also discussed the annual financial contribution to research which is currently funding the IMNDA fellow at Beaumont Clinic, Dublin 9.
Our presentation concluded with the following recommendations:
That there are no further cuts to our annual grant aid as any such cut will result in severe disruption to basic services and increased risk to the person with MND and their family and carer.
Medical card access for a person with MND should be granted based on the person's medical need rather than by means testing.
Ciara Hudson discussing medical card access with the Joint Committee
Future funding would be made available to enhance the existing services, in particular, the recruitment of other nurse specialists to work remotely fulfilling both care and educational needs throughout the country and to avoid the risk of exhausting our existing nurse.
The IMNDA also asked that funding toward carer's income supports, housing and vehicle adaptations and social welfare payments be preserved as they are having an additional impact on families living with MND.
The response from the Committee was very positive, with an unanimous expression of surprise that there were people diagnosed with Motor Neurone Disease who had been refused medical cards and that there was only one nurse specialist facilitating the entire MND community on a remote basis.
To view live coverage taken from the meeting click on the following link to bring you to RTE1 Oireachtas Report coverage on the day. The link will show the full days proceedings so you may wish to use the control on your media player to fast forward to 14.40 minutes to bring you to the soundbite from the IMNDA presentation.