Dáil debates

Tuesday, 4 November 2014

Topical Issue Debate

Home Care Packages

6:05 pm

Photo of Seán Ó FearghaílSeán Ó Fearghaíl (Kildare South, Fianna Fail)
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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?

Photo of Kathleen LynchKathleen Lynch (Cork North Central, Labour)
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The Deputy has known me long enough. I am always loath to direct people to do something unless I consider there is belligerence there and do not think there is in these cases. However, I will undertake to examine the matter and make inquiries about what can be done concerning the three children the Deputy has mentioned. We must remember that they are children.

I am pleased to take this opportunity to outline the current position in relation to home care plans for children supported by the Jack & Jill Children's Foundation on reaching their fourth birthday. The Jack & Jill Children's Foundation offers a care package to families in respect of palliative care nursing and home care for children with life-limiting conditions. This funding is provided to families following assessment by a member of their home nursing team.

The Jack & Jill Children's Foundation, along with other contracted service providers, is part of a range of services that receive funding from the Health Service Executive to provide services to families with children who have life-limiting conditions. Many children availing of services provided by the Jack & Jill Children's Foundation also avail of other specialist hospital-based and community-based health supports and disability services. In those circumstances, it is always preferable for the child to be at home as far as possible.

Each HSE area has a home care co-ordinator who has responsibility for the planning and provision of all home care packages in their area, including for those children receiving supports from the Jack & Jill Children's Foundation who are reaching their fourth birthday. Home care packages are delivered based on assessment of the applicants and their families. This assessment takes into account all services being provided by all agencies to ensure the delivery of an integrated package to meet the assessed needs. A care plan is then agreed and delivered by the HSE, voluntary or private providers, or a combination thereof. This process ensures that all children with life-limiting conditions receive services on an equitable basis and through a standardised approach. The HSE's disability services provide annual funding to the Jack & Jill Children's Foundation under section 39 of the Health Act 2004. In 2013, the foundation received funding of just over €630,000. The foundation also raises additional finance through fund-raising activities. It gets that money because it is a good foundation - it is as simple as that.

The Jack & Jill Children's Foundation also engages with the primary care division of the health service, which was given an additional budget of €1.2 million in the 2014 national service plan to address specific service challenges in areas such as the discharge of special care babies from hospital who have tracheotomies and require packages of care in the community. My Department is following up with the HSE in respect of one family with a child who has just reached four years of age. I assume that is one of the children Deputy Ó Fearghaíl is talking about and if the Deputy has a particular case in mind I would appreciate the details in order that we can pursue the matter with the HSE.

6:15 pm

Photo of Seán Ó FearghaílSeán Ó Fearghaíl (Kildare South, Fianna Fail)
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I will supply the information requested. I have confidence in the Minister of State in so far as her commitment to intervene is concerned.

Photo of Kathleen LynchKathleen Lynch (Cork North Central, Labour)
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The Deputy should not say that.

Photo of Seán Ó FearghaílSeán Ó Fearghaíl (Kildare South, Fianna Fail)
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There is a broad issue. The Minister of State suggests there is a natural follow-on from the care provided by the Jack & Jill Children's Foundation with very little State subvention when one considers the amount of work done by the foundation. The €630,000 it received in 2013 is a small percentage and a far smaller percentage than sums made available to many section 38 organisations. There is not the sort of follow-on from the HSE described by the Minister of State because, time and time again, we hear from the Jack & Jill Children's Foundation and at our clinics from parents of children with these life limiting conditions that the expected continuity of care, which we aspire to, does not happen. That I must come onto the floor of the House and instance these examples is proof positive that the system the Minister of State aspires to is not working.

I heard the Minister of State speak eloquently about the problems with senior citizens in hospital while awaiting stepdown facilities. There is a major cost to the Exchequer and the health services in meeting the demands of older people. These children's needs are so complex that for them to remain in hospital involves expenditure far in excess of anything that might be spent meeting the needs of older people. From an economic perspective, we all have a vested interest in ensuring the objective of the parents, which is to care for the children at home, is realised.

Photo of Kathleen LynchKathleen Lynch (Cork North Central, Labour)
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There is no disagreement. The ideal is a seamless service that is not interrupted just because the child reaches a particular chronological milestone. Circumstances might not permit it but the ideal is that the nurses providing the home care will continue to do so. That is the argument I will make and I am sure I will be told there are 100 reasons that it cannot happen. Others who deliver services are anxious to deliver it but the ideal is that the child and family can continue with the service they are receiving. I will inquire about this. It should not be happening but I will do my very best to ensure a resolution is found to these cases. It is not just about these three children, but about the broader problem.