Alex White (Dublin South, Labour) | Oireachtas source

I thank Senator Colm Burke for raising the matter. Ireland has the highest incidence of spina bifida in the western world so it is important that this issue be raised in the Chamber and highlighted.

Spina bifida is a very complex physical disability and children with the condition have multiple problems as a result. The majority of children and adults with spina bifida have hydrocephalus. Best practice is that there are multiple professionals involved on a spina bifida team. We know that on average 30 children per year are born in Ireland with open spina bifida, which is the most severe form. I am aware that early intervention by a specialist and local team is essential to optimise long-term functioning for these children and to prevent medical complications later in life. The Children's University Hospital, Temple Street, is the national tertiary care centre for spina bifida and hydrocephalus. All infants born in Ireland with spina bifida are transferred to Temple Street after birth for ongoing neonatal management. Children with spina bifida are seen by a multidisciplinary team at Temple Street which includes a consultant paediatrician with a special interest in spina bifida, a spina bifida nurse specialist and neurosurgery input. The model of care being developed by the HSE is to share care between the specialist team in Temple Street and local teams. While the best care should be provided nearest to the patient's home with guidance and support from the specialist team, it is acknowledged, as adverted to by Senator Colm Burke, that there are complex issues which are best managed by the specialist team.

The multidisciplinary spina bifida clinic was established in Temple Street in February 2011 but I am advised that there has been no dedicated urological input to date. A recruitment process was under way in 2009-10 through which the hospital hoped to recruit a consultant urologist but, unfortunately, no suitable candidate was found. A new recruitment process for the post is in train and is currently at interview stage. The HSE is hopeful that this new recruitment process will succeed in hiring a suitable candidate. While awaiting the appointment of a consultant urologist, spina bifida patients are being reviewed by a consultant surgeon. As an interim arrangement, those children requiring urgent urological input are prioritised clinically and seen in the UK under the treatment-abroad scheme. I am advised that all patients are being kept under regular review and are referred on a case-by-case basis to the UK for treatment pending the appointment of a permanent urologist. Arrangements are also being made to establish a regular clinic with a UK paediatric urologist to cover clinical priorities here.

The Government is acutely aware of the challenges faced by patients with spina bifida and their families in managing their condition and is committed to providing them with the best possible health service. The Government will continue to work with the HSE to ensure the best possible outcomes for these patients.