Caoimhghín Ó Caoláin (Cavan-Monaghan, Sinn Fein)

I welcome this debate and the opportunity to highlight the condition of muscular dystrophy, including Duchenne muscular dystrophy, DMD, and the needs of people with this condition and their families. It is unfortunate that the Dáil cannot speak with one voice on this issue. While the motion put down by the Minister of State, Deputy John Moloney, sets out some of the key facts, it is narrow in scope, self-congratulatory in tone and fails to identify outstanding needs of muscular dystrophy sufferers and the obligations on Government to meet those needs. For that reason Sinn Féin Deputies support the amendments put down by the Labour Party and Fine Gael Members.

There are two broad areas of need identified - enhanced Government support for DMD research and the development of services to people with muscular dystrophy in general. I have previously raised in the House the shortage of neurologists in our health system and the acute need for enhanced support for neurology in the national centre, which is Beaumont Hospital. Muscular Dystrophy Ireland points out that there are currently two muscular dystrophy clinics for people with the condition, a clinic for adults in Beaumont Hospital Dublin and one for children in the Central Remedial Clinic, Dublin. This means people must travel from all over the country to Dublin to access services. Adults come to Beaumont Hospital to meet the neurologist but there is no multidisciplinary team to co-ordinate all aspects of care, including respiratory, cardiac, dietary, occupational therapy and so forth. Travelling to and from Dublin causes additional physical, emotional and financial stress for the person with muscular dystrophy and their families.

People affected by muscular dystrophy receive genetic testing and counselling from the National Centre for Medical Genetics, NCMG. However, the NCMG is still not funded to provide a nationwide genetic testing service. The NCMG has four consultants for the State's population of more than 4.2 million whereas in Belfast, there are six consultants for the Six Counties' population of 1.7 million. Monitoring the breathing and heart function of people with muscular dystrophy is essential in maintaining quality and, in some cases, length of life. However, there is no co-ordinated approach to care and those requiring access to the service usually have to travel to Dublin.

People with muscular dystrophy who have breathing difficulties must hire ventilators to assist them. Those without a medical card are obliged to pay the first €100 per month of the cost of this facility under the drugs payment scheme in order to stay alive. This equates to an annual cost of €1,200 which, in many cases, must be paid from a relatively low net income. Breathing machines improve not only the quality of life of muscular dystrophy patients, but also their life expectancy. The cost of using such a device should not be a prohibitive burden. Therefore, medical cards should be available to all persons with muscular dystrophy.

These people are undoubtedly suffering as a consequence of Government health cuts. There are currently 97 members of Muscular Dystrophy Ireland who are receiving no physiotherapy. Forty cannot access an occupational therapist, an increase from 20 last year. There is also a major problem in terms of access to community services including physiotherapy and occupational therapy. In addition, waiting times for essential aids and appliances are too long, up to a year in some case. There are 61 Muscular Dystrophy Ireland members waiting for the equipment they require, an increase from 42 in 2008.

Respite is essential for people with muscular dystrophy and for their carers. People with muscular dystrophy generally require in-home as opposed to residential respite care. Muscular Dystrophy Ireland provides short-term respite but its limited funding means it cannot provide support to all who need it. Additional funding is necessary for the provision of longer-term respite care through other agencies. People with muscular dystrophy have a great need for personal assistance in order to access education and employment and to engage in day-to-day living, but many cannot access such services. Currently, 50 members of Muscular Dystrophy Ireland who require a personal assistant have no hours. A further 53 members have been allocated a personal assistant but clearly require more hours, an increase from 50 in 2008. Muscular Dystrophy Ireland indicates that 88 of its members will require a personal assistant in the next five years. Children and young people with muscular dystrophy attending school will require a special needs assistant, SNA, as their condition progresses. There are currently 67 children with muscular dystrophy using SNAs in school, an increase from 50 in 2008. Over the next five years, 39 more children will require the service.

Muscular Dystrophy Ireland identifies various provisions which are urgently required. Funding must be provided to set up a multidisciplinary team for the adults' muscle clinic in Beaumont Hospital to support the consultant neurologist there. The consultant paediatric neurologist needs permanent and adequate funding in order to recruit a research clinician to assist with medical audits and management of the clinics, as well as support with research. We are now entering a time when clinical trials are developing. This position has been advertised but is not fully funded. More consultant geneticists are required. There are currently fewer in this State than in the Six Counties. This leads to longer waiting lists to access genetic testing and counselling services.

Muscular Dystrophy Ireland has also indicated that the respiratory team at the Children's University Hospital,Temple Street, requires funding to ensure all children with muscular dystrophy are monitored and treated for respiratory problems as soon as it is required. Funding for respiratory and cardiac services is essential as these are making a great difference to the quality of life of persons with muscular dystrophy. The cost of breathing machines should be covered for those who require them. More physiotherapists and occupational therapists must be recruited to ensure people with muscular dystrophy can access them as they need them on an ongoing basis.

The personal assistant service is vastly underfunded. Some 91,000 personal assistant hours per year are required immediately for people with muscular dystrophy who are currently receiving no service. Moreover, provision must be made for the 160,160 hours per year that will be required in the next five years. The long-standing demand for the introduction of a cost of disability payment - for which I and others in this House have argued repeatedly, particularly in our pre-budget submissions over the last decade - is of particular relevance to people with muscular dystrophy given the many additional costs they face. It is our collective responsibility as elected representatives to ensure this funding is allocated in order to provide the essential back-up and support that is so urgently required.

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