Mary Moran (Labour)
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I welcome the Minister of State at the Department of Health, Deputy Kathleen Lynch, to the House for this debate. I wish to raise the case of an individual with locked-in syndrome who would like to be moved from hospital so as to be cared for in the family home. This is a particularly sad case on which I have been working for the past year. The man in question has been an inpatient in hospital for over a year and his family is very worried about his mental state and quality of life if he remains in hospital for much longer. He is a young man in his 30s who, although ventilator dependent, remains very aware of what is happening around him.

I have been liaising with the family and HSE representatives on many levels on this case for some time. Understandably, the family wants to see the man brought home to be cared for. They have the doctors' support in the hospital as there is nothing more that can be done for the man there.

I have raised the matter on behalf of the man and his family in many formats, including parliamentary questions, e-mails and letters, and I am now doing so by way of Adjournment debate. I have been informed the reason the individual will not be moved from hospital to the family home is the high level of funding required to deal with his complex care needs. I understand there are many complex care needs involved but I do not believe a person should have to remain in hospital for the foreseeable future owing to the lack of approval for funding for a home care package. The spending of additional days, months and years in hospital due to a lack of funding is unacceptable. The man deserves and wants the opportunity to live in his own home and to be surrounded by his loved ones.

It is heartbreaking to see what the man's family must endure. They travel up to Dublin every day to be with him and then travel home. Lately, he wrote a very emotional letter pleading for people to take him home. He described the high point of his day as his being moved after waiting for somebody to come to turn him around. I do not believe we can imagine how difficult and heartbreaking it must be to be literally locked inside one's own body, unable to speak and move and having to wait for somebody to come to roll one over.

I fear for the man's physical and mental state if he is to remain in hospital for much longer. I urge the Minister of State to act on this important matter because everyone deserves the opportunity to have a life of a decent quality, no matter what his disability, illness or diagnosis.

Kathleen Lynch (Cork North Central, Labour)
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I thank the Senator for raising this issue. While this case is quite unusual, it is not unique. As the Senator will know, there was a quite young woman in similar circumstances in Cork. We dealt with that.

The individual at the centre of this case has displayed tremendous tenacity and bravery in dealing with his condition. As the Senator rightly said, I do not believe it is possible for us to imagine what it must be like. I acknowledge the devastation experienced by the man's family and fiancée on his diagnosis and their incredible commitment to him daily.

Locked-in syndrome is a challenging condition in which a patient generally retains cognitive function but requires constant medical 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. The man's post-discharge care would involve the provision of appropriate medical devices essential to survival, such as a ventilator, and 24-hour specialised intensive care unit nursing care. Given the complexity of his care needs, if he were 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 that 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 service 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 be considered in that context.

The Department of Health has discussed this case with the HSE 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.

I acknowledge that the Senator has a particular interest in this case and believe the meeting next week will result in a resolution to the young man's particular difficulties and those of his family.

Mary Moran (Labour)
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I thank the Minister of State for her reply. As I stated, I understand the complexity of the case. The extent of care required has been explained to me. I welcome the fact that the meeting will take place next week. I am glad the Minister of State has taken an interest in this, as I knew she would. It, too, hope a resolution can be found and I will continue to work in that vein.

Kathleen Lynch (Cork North Central, Labour)
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The meeting, which will be held with Mr. Pat Healy, the new director of social care in the HSE, will take place on 15 April. He has experience in that he dealt with the woman in Cork.

Mary Moran (Labour)
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Brilliant.

Kathleen Lynch (Cork North Central, Labour)
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Therefore, we should be able to find a resolution. I am not certain how long that will take but at least we are moving in the right direction.

Mary Moran (Labour)
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That is great and I appreciate it. I thank the Minister of State.