Kathleen Lynch (Cork North Central, Labour) | Oireachtas source

I thank the Deputy for raising this issue and his positive comments on the incredible service provided by the CRC. The clinic has been embroiled recently in the controversy over pay and top-up payments, which is unfortunate because 99% of those attending the CRC are extremely happy with the service being provided.

The Department of Health has been unable to obtain the material to answer the specific questions raised by the Deputy in the time given. However, it undertakes to follow up with the Health Service Executive and the CRC and write to the Deputy with the information as a matter of urgency.

The issue of standards of care is at the top of the Minister's and the HSE's agenda. The HSE has established a quality and clinical care directorate to help to improve patient care throughout the health system. Clinical governance will ensure patients can get the right treatment at the right time. Clinical audit programmes will measure and audit standards to ensure they are delivered across the health system, including through agencies such as the CRC.

I will deal with the Topical Issue raised by referring to work under way on rare diseases and the services provided at the CRC. Duchenne muscular dystrophy is a rare, chronic, debilitating and life threatening condition. Most rare diseases have a genetic origin and the life expectancy of persons with rare diseases such as Duchenne muscular dystrophy is significantly reduced. Scientific knowledge of rare diseases, including Duchenne muscular dystrophy, is limited.

Ireland is well advanced in developing a strategy for rare diseases. A national steering group is developing a policy framework for the prevention, detection and treatment of rare diseases. The principles are high quality care and equity and centred on the patient. An integral part of an effective policy framework will be the development of a dedicated HSE clinical programme for rare diseases. This programme will aim to improve and standardise patient care by bringing together clinical disciplines and enabling them to share innovative solutions to deliver greater benefits to HSE service users. It is envisaged that a national rare diseases clinical programme would, over time, assist in developing national treatment guidelines, standard operating procedures and care pathways for many rare disorders, including Duchenne muscular dystrophy, in collaboration with designated reference centres. It would also develop care pathways with European reference centres for those ultra rare disorders on which there may not be sufficient expertise in Ireland.

The CRC provides a comprehensive range of services for almost 4,000 children and 500 adults throughout the country with physical conditions ranging from the very rare to the more familiar such as cerebral palsy, spina bifida and muscular dystrophy, including Duchenne. The CRC services assess, diagnose and treat children and adults with a wide range of physical conditions. In addition, the clinic offers a range of training, development and ongoing support options to adults with a physical disability. The CRC received funding of approximately €16 million from the HSE in 2013. It is also worth noting that it has been designated as a centre of excellence by the national accreditation committee for its high standard of delivery of training in adult services. It also recently received a HSE innovation award for its mobile gait laboratory services.

Dr. Brian Lynch, a consultant at the CRC, has provided additional information for the HSE. He has pointed out that children with Duchenne muscular dystrophy attend the CRC which has run a neuro-muscular clinic for over 25 years. At the CRC, children attend multidisciplinary clinics where they receive input from paediatricians, neurologists, orthopaedic specialists, physiotherapists, occupational therapist and dieticians. They also engage with clinical psychologists and social workers, where necessary. The treatment provided for these children at the CRC is in line with best international standards of care.

I will pass on the Deputy's specific request regarding the new director of the CRC, whoever that may be, meeting the families. Ireland is too small to develop the required research capacity in the area of rare diseases. We will have to continue to co-operate with others across Europe.

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