Tuesday, 1 April 2014

Questions (109)

John Browne

Question:

109. Deputy John Browne asked the Minister for Health the measures in place to help people with spina bifida; and if he will make a statement on the matter. [14879/14]

View answer

Written answers (Question to Health)

People with spina bifida and hydrocephalus receive a wide range of public health services from primary care including GP and community services through specialist disability services and acute hospital out patient and in patient services. The diagnosis, treatment and care of individuals with spina bifida and hydrocephalus requires input from all of these services and the qualified specialist people working in these areas.

The Children's University Hospital, Temple Street is the national tertiary care centre for spina bifida and hydrocephalus. I understand all infants born in Ireland with spina bifida are referred to Temple Street after birth for ongoing neonatal management. Children with spina bifida are seen by a multidisciplinary team at Temple Street including a Spina Bifida Nurse Specialist.

The HSE funds a range of community services and supports to enable each individual with a disability, including persons with spina bifida and hydrocephalus, to achieve his or her full potential and maximise independence, including living as independently as possible. Services are provided in a variety of community and residential settings in partnership with service users, their families and carers. Services are provided either directly by the HSE or through a range of voluntary service providers and community groups.

The HSE provides funding to Spina Bifida Hydrocephalus Ireland amounting to €798,031 in 2013. In addition, the HSE also provided funding of €128,152 in 2013 to the Mid West Spina Bifida and Hydrocephalus Association.

Spina Bifida Hydrocephalus Ireland has branches in all four provinces. It operates a professionally run National Resource Centre based in Clondalkin, Dublin, and provides further support in the form of a Family Support Team, a Youth and Respite Team and an advocacy and advice service providing guidance, advocacy, emotional and practical support to members from time of diagnosis through to adulthood. I would like to acknowledge the work of Spina Bifida Hydrocephalus Ireland and the significant role it has played in the lives of people with spina bifida and hydrocephalus.