Alex White (Dublin South, Labour) | Oireachtas source

I thank Deputy Nash for raising this issue this afternoon. The individual at the centre of this case raised by the Deputy has displayed tremendous tenacity and bravery in dealing with his condition. I must also acknowledge the devastation of his family and of his fiancee at his diagnosis and their incredible commitment to him on a daily basis.

Locked-in syndrome is a challenging condition in which a patient generally retains cognitive function but requires constant clinical care, treatment and supports, such as ventilation. It must be acknowledged that in this case the individual's needs are particularly complex and patients with such needs are generally cared for in an intensive care setting.

His post-discharge care would involve the provision of appropriate medical devices, such as a ventilator, which are essential to his survival, and 24-hour specialised intensive care unit nursing care. Given the complexity of his care needs, to be cared for at home, he would need an extensive home care package, including 24-hour specialist nursing care with clinical governance by an appropriate consultant.

I understand several multidisciplinary meetings have already taken place at local level between the family, the HSE and Resilience Ireland, a company which specialises in specialist advanced home care management. I have also been assured that there has been significant engagement between Beaumont Hospital and the local community care services in an effort to find a solution appropriate to this patient's needs.

While it may be possible to provide such a solution, the equipment, staffing and resources required are likely to be very substantial and would have to be accommodated within the overall resources available to the HSE for disability services. This case must also be considered in that context.

The Department of Health has discussed this case with the Health Service Executive and a meeting between the family and senior officials in the HSE has been scheduled for early next week to discuss and consider the patient's request to transfer home from Beaumont and the significant complex issues associated with such a transfer. The HSE will continue to explore with the family all options for future care, including alternative community service providers or the individual's possible move to a hospital closer to home and family.

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