Thursday, 26 September 2013

Questions (4)

Billy Kelleher


4. Deputy Billy Kelleher asked the Minister for Health if he will examine the possibility of introducing paediatric care packages for children with life-limiting conditions; and if he will make a statement on the matter. [40237/13]

View answer

Oral answers (5 contributions) (Question to Health)

The issue of the provision of home care packages for children with life-limiting conditions is complex, encompassing those requiring short to medium-term care, those with a disability requiring long-term care and also sick children for whom sadly there is no reasonable hope of a cure.

Palliative Care for Children with Life-limiting Conditions in Ireland – a National Policy, published in 2010, provides the foundation and clear direction for the development of an integrated palliative care service for children and their families across all care settings. Following its publication the national development committee for children's palliative care, NDC, was established by the HSE to oversee the implementation of the national policy. Membership includes statutory, professional, parent and voluntary representatives, including the IHF, LauraLynn and The Jack and Jill Foundation. The NDC has commenced working in partnership with these providers to develop a model for the provision of hospice at home care.

In 2012 the HSE spent approximately €8.58 million on home nursing for children with life-limiting conditions. It is widely acknowledged that this does not capture all relevant expenditure, which is significantly higher. Children with life-limiting conditions, in particular palliative care needs, are prioritised by the HSE. Every effort is made to provide care to the maximum extent possible, including home care for them and their families.

The HSE is committed to proper governance, that care provided is clinically sound and that those providing care are adequately trained. A suitable national programme of continuing professional education has been established in partnership with the HSE, IHF and Crumlin children's hospital. A working group has been established in HSE Dublin mid-Leinster to restructure the financial system so that relevant expenditure is effectively accounted for. This will be replicated across all regions.

Eight children's outreach nurses are in place throughout the country to facilitate a co-ordinated support structure for children and families. They will identify the needs of each child and link families to appropriate local services. The first consultant paediatrician with a special interest in paediatric palliative medicine has been appointed to Crumlin hospital and is available to provide an advisory service to other paediatric and maternity hospitals.

I thank the Minister of State for his reply. Approximately 1,400 children have life-limiting illnesses in this country and approximately 340 die each year. Not enough is being done. If one was to be harsh and look at it from an accounting point of view, one would see it is a cost saving exercise. Providing palliative care and supports for children with life-limiting illnesses at home is a cost saving rather than having them in acute hospital setting. More important, allowing people to care for their loved ones at home in their own surroundings, with which they are most comfortable, is the right thing to do rather than have parents and siblings traipsing in and out of hospitals on a continual basis.

We have the expertise and competence. LauraLynn and The Jack and Jill Children's Foundation, to which the Minister of State referred, are two excellent organisations which provide wonderful supports for people at home. We have the competence but what we need are the resources to establish a proper paediatric home care package.

I urge the Minister of State to look on this matter from a human point of view and also as a solution to the budgetary position.

When cost savings are required, they do not happen in disregard of the real needs of the people involved. That is particularly true in the case we are talking about. Of course resources are always a challenge. We all know the reasons they are a particular challenge at this time. The strategy that has been outlined is being brought forward. The appointment of the consultant in Crumlin is an important development. I think everybody has a commitment to this area. Everybody can see this is an area we need to attend to. I think the Deputy will accept on the basis of the initial reply that it is regarded by the HSE as an important area of work.

I welcome the Minister of State's reply. The difficulty is there is often a disconnect between what is said here and what actually happens on the ground. The current position is that medical cards are being withdrawn from some of the sickest children in this country. Deputies on all sides of the House are raising this on a continual basis. The Minister of State has said there is a strategy in place for providing paediatric home care packages and supports to children with life-limiting illnesses, but the reality is that is not happening. Organisations like LauraLynn and The Jack and Jill Children's Foundation are being put to the pin of their collars as they try to raise funds, provide support and give people palliative care at home. The strategy sounds good, but we need the resourcing to fund 24 hour palliative care for children with life-limiting illnesses. This is necessary to allow them to live at home with their families in dignity. As I have said, it is a cost-saving exercise. It costs up to €150,000 a year to keep a child in an acute hospital setting. Palliative care at home can be provided to children for €16,000, with the rest of the cost being met with the support of LauraLynn and the Jack and Jill Children's Foundation.

I do not know whether I can add too much to what I have already said. The initial question related to the introduction of paediatric care packages for children. The national policy is in place and is being implemented. This is undoubtedly an important issue. No one can disagree with the general thrust of what Deputy Kelleher has said. We are always trying to identify more resources as best we can. We understand the issue here. I think it is dealt with well and sensitively.