Speech by Mr Tim O’Malley, T.D. Minister of State at the Department of Health and Children at the Official Opening of Conference of the Irish Society for Mucopolysaccharide Diseases

Distinguished guests, Ladies and Gentlemen,

I am very pleased to be here, today, to open this Conference.  I would like to thank Mary McGauran, your Honorary Secretary for her kind invitation to be here today.

The Mucopolysaccharide Diseases Society of Ireland was founded in 1996 and operates as a voluntary support group for children and adults suffering from Mucopolysaccaharide and related diseases, their families, carers and professionals.    The society also promotes both public and medical awareness of these relatively rare diseases.

Mucopolysaccaharide and its related diseases are lysosomal storage diseases. These diseases are genetic and are triggered by the absence of an enzyme that enables the body to breakdown and eliminate mucopolysaccaharides. This results in partially broken down mucopolysaccaharides being stored in the body. During the life of the child these accumulate causing ever-increasing damage.

The disease is not manifest in infants and very young children. However, as they grow older, symptoms of the disease appear and intensify. The child’s appearance, bodily functions and development, both physical and mental, are affected.

The gene which causes these diseases is recessive so it is therefore necessary for both parents to carry it in order for the disorder to occur. Unfortunately, if both parents carry the gene there is a one-in-four chance that each of their children will be affected.

At present there is no prevention or cure for these diseases. Treatment can only take place at the symptomatic level and focus on medical complications that arise from these diseases. Research is continuing on the International stage to find enzyme replacement therapies for those who suffer from these diseases and advancements have been made in improving the quality of life for these children.

The National Disability Strategy is an opportunity to identify priorities in the services for people with disabilities. It is a framework of positive action measures to support participation by people with disabilities in Irish society. The Strategy consists of four elements –

  • Disability Bill 2004
  • Comhairle (Amendment) Bill 2004
  • Six Outline Sectoral Plans, and
  • A commitment to a multi-annual Investment Programme for disability support services.

My Department has recently published an Outline Sectoral Plan in respect of the specific health and personal social services provided for people with disabilities. This is very much an interim plan, designed to encompass a programme of work which is to be undertaken over the next 12 to 18 months. The main aspects of this programme are related to the provisions contained in the Disability Bill 2004, together with a strategic review of the services as a whole.

It is expected that this review will examine the significant level of service provision which is already in place, focusing on specific issues which are of concern to people with disabilities and their families and carers, together with statutory and voluntary bodies in this area, with an opportunity to input into the planning and delivery of services over the coming years.

It is recognised that the health funded services in the Disability Services sector have advanced greatly over the last number of years. It is also acknowledged however that further work is required in the coming years.  To that end I am pleased that this Government was in a position to announce on budget day a special disability multi-annual funding package with a total value of close to €900 million over the years 2006 to 2009.  This funding is being dedicated now for the period until 2009 so as to ensure the delivery of these high priority disability services. This package includes guaranteed additional current spending of almost €600 million. The Government has also agreed to allocate €300 million out of the revised capital envelope to these high-priority disability services.

The bulk of the new funding package will go to the health sector where it will be invested in services for persons with an intellectual disability and those with autism, services for persons with physical or sensory disabilities and mental health services. It will focus, in particular, on the provision of extra residential, respite and day places, extra home support and personal assistance, and extra places in community based mental health facilities.

Occasions such as this are vital to increase public awareness of these diseases and to inform all those affected of the supports that are available to them and of the strides that are being made on the medical front.

I note from the conference Programme that you have a packed agenda for this weekend, bursting with all manner of interesting items which should be of practical use to those with these diseases and their families.

This is an important day for your society and I am honoured to have been invited here today to open this Conference and I wish you every success in the future.