Seán Ó Fearghaíl (Kildare South, Fianna Fail) | Oireachtas source

I thank the Ceann Comhairle for allowing me to raise this matter. To revert briefly to the previous issue, I salute the Minister of State and her predecessors for what has been done in terms of stroke treatment. Real and meaningful progress has been achieved.

On a number of occasions, my colleague, Deputy Billy Kelleher, and I have raised the issue of children with life-limiting conditions both on Leaders' Questions and as Topical Issues. It goes without saying that providing care for a child with a life-limiting condition is highly challenging for families, both physically and emotionally. Some 1,400 children in the country have life-limiting conditions. Unfortunately, about 350 of those die each year due to their conditions. The life expectancy of many of those children is just one year.

All studies have clearly shown that the majority of parents want to care for their children at home. Our party has recently been informed of difficulties arising following the failure of the HSE to take over home care plans for children currently supported by the Jack & Jill Children's Foundation who will soon reach the age of four years. There are three such children in north Dublin. One of them - a little girl who was four last August - has Ohtahara syndrome, a rare infantile epilepsy with seizures, which results in a limited life expectancy. Indeed, David Cameron's son died of the same condition aged six years. This girl cannot walk, talk or feed herself and is totally dependent on others. Up to now she was receiving 40 hours of support monthly from the Jack & Jill Children's Foundation, which made all the difference to her family. The HSE met this girl's family in July after the Jack & Jill Children's Foundation and the public health nurse had done an assessment. The HSE assured the parents that the matter would be sorted out on or just after her fourth birthday. It has not been sorted out.

Another child, a boy who will be four years old on Sunday week, has a diagnosis of West syndrome and chromosome 8 and 9 abnormality. Like the little girl I mentioned, he cannot walk, talk or feed himself and is totally dependent on others. He sleeps for only about four hours a night. His mum and dad are understandably up with him on those occasions. The family use their 44 hours of Jack & Jill Children's Foundation support over four nights, giving them one night a week of guaranteed sleep and a few free hours each day. The public health nurse has told the boy's mother that she will not get a nurse, which she desperately needs. Therefore, the mother will have to continue to meet his needs 24/7.

Another little boy who was four years old last week has a diagnosis of trisomy 7p, which is associated with severe to profound developmental delay. He needs 24 hour care as he is gastrostomy-fed. He also requires suctioning and continuous positive airway pressure, CPAP - a treatment that uses mild air pressure to keep the airways open at night - due to his sleep apnoea. He also needs numerous medications daily. In June this year, a referral was sent to the HSE for a home care package to replace the nursing hours that the Jack & Jill Children's Foundation has provided over the last four years. An assessment was carried out and the family was told that their hours could I hope be replaced. However, at the end of October the HSE has not made a decision about this home care package. The little boy left hospital this week and his parents are very worried about how they will cope with his needs. I understand the Jack & Jill Children's Foundation has set up a temporary emergency fund to cover these hours over the next month, hoping that the HSE will make a decision about replacing them. The parents' wish in this case is that funding will continue to run through the charity so that the same nurses can continue to care for the little boy at home.

Will the Minister of State examine these three particular cases, which are part of a much bigger scenario? In the interests of human decency, will she direct the HSE to take action on these three specific cases?

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