Mary Butler (Waterford, Fianna Fail) | Oireachtas source

I thank the Senator for the opportunity to address the House on this important matter, which I am taking on behalf of Minister for Health, Deputy Stephen Donnelly.

As the Senator will be aware, the Mater Misericordiae University Hospital is the designated site for the National Centre for Inherited Metabolic Disorders for adults. This centre provides assessment and treatment to adults with inherited metabolic disorders. It is also responsible for the diagnosis and management of these patients. Inherited metabolic disorders include a diverse group of rare conditions that can result in significant morbidity and mortality. Presentation may occur at any age. With advances in healthcare delivery and new therapeutic interventions an increasing number of affected children whose lifespan previously would have been severely curtailed are now reaching adulthood.

The adult metabolic service in the Mater hospital provides multidisciplinary care for patients with metabolic disorders. These disorders include phenylketonuria, PKU, which the Senator has spoken about, galactosemia and lysosomal disease. This important service helps patients to manage their conditions with optimal diets that match their metabolic needs. The HSE has informed me that current staffing in this important service at the Mater hospital is 12.5 whole-time equivalents. This team includes consultants, non-consultant hospital doctors, nursing staff, dieticians, a medical social worker, a psychologist and administration staff. Currently, approximately 900 adult patients attend the metabolic service at the Mater hospital. It is anticipated that will increase by at least 100 additional patients per annum over the next five years. These additional patients will include transition patients from the paediatric services located in Children's Health Ireland, CHI, at Temple Street. In addition to the above, the centre tests patients' responses to therapies for PKU treatment.

Since August 2019, newborns diagnosed with PKU have been tested in CHI at Temple Street and treated, when responsive, with Kuvan. There are also a number of patients with known dietary requirements who have been trialled on this medication. Once a child is placed on Kuvan, this treatment is expected to be lifelong. To date, access to Kuvan has not been available for PKU adults attending the centre at the Mater hospital, other than for three patients who received ongoing approval following an earlier phase 3 clinical trial extension.

I have some good news for the Senator. I have been informed that the HSE and the Mater hospital have now agreed appropriate funding levels for 15.6 whole-time equivalent staff and the Mater hospital is commencing this recruitment process. With this resource in place, the centre at the Mater hospital will begin to expand the service to meet current and future requirements. This resource will also support provision of Kuvan trialling and monitoring for appropriate patients with PKU. I am assured that the HSE and the Ireland East Hospital Group remain committed to the progressive development of metabolic services at the Mater hospital and to improving this service for patients of the Ireland east region.