Dáil Éireann díospóireacht -
Wednesday, 19 Jun 2002

Vol. 553 No. 3

Irish Motor Neurone Disease Association.

Mrs. B. Moynihan-Cronin

I thank you, a Cheann Comhairle, for giving me the opportunity to raise this very important issue on the Adjournment. I also thank the Minister for coming to the House to reply. I wish to put on record details of the financial plight of the Irish Motor Neurone Disease Association which is in dire need of greater support from the State.

The association was formed in 1985 by the families and friends of those suffering from motor neurone disease. Motor neurone disease is a horrendous condition which affects motor neurones and leads to the wasting of muscles over a period of time, causing incapacity and frequently loss of speech and mobility. There are approximately 210 patients in this country. I know people in my constituency who are suffering and others who have died as a result of motor neurone disease and I can testify to the truly horrific nature of this condition.

As well as supporting research into motor neurone disease, the association provides outstanding support and assistance to patients and their families. This work involves visits to homes, the provision of much needed equipment for patients and the provision of financial support for home nursing. I am also aware that patients and their families have gained tremendously from the wonderful physical and financial support which this association provides.

Despite the wonderful work carried out by the Irish Motor Neurone Disease Association, the level of Government support is pitiful. In the last calendar year, the association had an income of approximately £468,000 and expenditure of £612,000, leaving it with a deficit of over £144,000. An average of five staff were employed in 2001 and the wage and pension costs amounted to £160,000, although there was some Government help towards salaries and the association is very grateful for this financial support. However, there was no other remuneration from central government.

An application was made for lottery funding in 2001 but this application was turned down. It has applied for lottery funding for the current year and I urge the Government to consider this application carefully as a matter of priority. Unfortunately, the association also suffered as a result of RTE dropping the People in Need programme, which had meant a considerable amount of money to it.

The Motor Neurone Disease Association faces a particularly acute situation at present with regard to the equipment it provides to patients. Essential equipment, such as chairs, beds, showers and washing equipment, are provided speedily to patients and are always re-used where appropriate. In 2001, the association spent a total of £94,000 on equipment for patients and at present it has over 1,000 pieces of equipment in use.

The board of directors of the association considers that the financial pressure it is currently under is putting the future of funding and the availability of vital equipment in jeopardy. Why has the Motor Neurone Disease Association been left out of the loop for funding by the Government on so many occasions? Why, when millions of pounds of lottery funding was pumped into every club and organisation around the country, however well merited, was an association which provides such tremendous support to hundreds of people turned down? Why is there no direct aid from the Government, apart from a contribution towards the salaries, to help a body which has to resort to voluntary fund-raising and street collections? I know the nature of the work the association carries out and no such organisation should have to be persistently distracted from its wonderful objectives of patient care by financial headaches. I urge the Minister to consider carefully what I have said and to act speedily to address the situation.

Minister for Health and Children (Mr. Martin)

I thank Deputy Moynihan-Cronin for raising the issue on the Adjournment. I wish to clarify the situation in relation to the provision of funding for the Irish Motor Neurone Disease Association. I am willing and available to meet the association if it wants to discuss these issues and its needs and assessments with me. There are systems and so on in place through which we allocate funding to health boards to allocate to various organisations dealing with specific diseases or medical conditions. We have assisted a number of them over the last number of years and greatly exceeded their funding base. I have no difficulty meeting the association to try to advance its situation in a better way.

Generally, the provision of health related services for people with physical and sensory disabilities, including motor neurone disease, is a matter, in the first instance, for the Eastern Regional Health Authority and the health boards. Priorities for the development of services are decided by the health boards in consultation with the regional co-ordinating committees for physical and sensory disability services. The Irish Motor Neurone Disease Association is represented by the Disability Federation of Ireland on the regional co-ordinating committees. Since 1997, funding of over €185 million has been provided by the Government for the maintenance and development of services for people with physical and sensory disabilities, including people with motor neurone disease.

Additional revenue funding of €30.53 million has been allocated in 2002 for investment in services for people with physical and sensory disability, including €6.4 million in resourcing for the voluntary sector. Included in this was the payment of €48,000 to the Irish Motor Neurone Disease Association through the ERHA as part of the service audit of the voluntary sector physical and sensory service providers.

As the Deputy may be aware, limited funding is available through the national lottery for certain once off projects in the voluntary sector. We invite applications for this funding and the Irish Motor Neurone Disease Association has applied on a number of occasions over the past few years. Some £80,000 was provided to the association in December 2000 on foot of such an application. Unfortunately, its application was not successful in 2001 as demand exceeded supply. It has, however, applied in 2002 and a decision on this has not yet been finalised.

In addition to this funding, with regard to the overall provision of services, my Department, in conjunction with the Health Research Board, the health boards and the voluntary sector service providers, is currently developing a national physical and sensory disability database which I launched in March of this year. When complete, the database will provide, at local level, a detailed picture of each individual's health service requirements over a five year period and, at national level, detailed statistical information to assist in the acquisition of funds and identify priority services at which to target these resources. The disability database, ultimately, will be the route to a very comprehensive assessment of what is required on the physical and sensory disability side. That database will be the essential tool in the delivery of effective services to people with physical and sensory disabilities, including people with motor neurone disease, in a planned and co-ordinated manner.