Jim Daly (Cork South West, Fine Gael) | Oireachtas source

I thank Senator Mullen for raising this issue and providing me with an opportunity to update the House on recent developments. I assure the House that I am very committed to the ongoing provision of paediatric home care packages to support the discharge of children with complex needs from acute hospital services into the care of their families.Not only do such packages benefit children and their families directly but they create capacity within hospitals to treat other children in need. We have 417 such packages in place and intend to increase the total number to 457 by the end of the year, which would represent an additional 80 packages compared to the number in 2018. To support this level of service, €28.7 million has been allocated for the provision of these packages in 2019, an increase of more than €6 million year on year.

Turning to the Senator’s point about the inloco parentisprovision, it is important to note that, first and foremost, paediatric home care packages are a clinical, not a respite care, support. While providing nursing care for the child with complex healthcare needs in the home, nursing staff cannot assume sole responsibility for a child where parents may not be available. A designated and competent person appointed by the parent is, therefore, required to be available to act in loco parentis. This requirement ensures a second person will be present in the event that there is an acute emergency such as respiratory arrest, decannulation of a tracheostomy or status epilepticus. Nonetheless, I am very aware that providing respite care can be an issue for parents of children with complex medical needs.

I am aware of the concerns raised in this House and elsewhere about the operation of the inloco parentisprovision. I am, therefore, pleased to be able to advise the House that the HSE recently completed a national quality assurance initiative process for paediatric home care packages, PHCP, which, among other things, examined the question of respite care. As part of this process, new guidelines for children with complex healthcare needs, carer's break approval and risk minimisation have been developed. The new guidelines are intended to address concerns about the issue of inloco parentisprovision by providing for a carer’s break under certain criteria. This should introduce greater flexibility in the operation of individual PHCPs and has the potential to provide additional support for parents and families as part of an integrated approach to the delivery of care. It is important to stress that the guidelines have been developed following extensive collaboration with the Royal College of Nursing in the United Kingdom, the school of nursing in Trinity College Dublin and, crucially, the parents of children availing of the service. The HSE continues to work towards publishing the guidelines in the third quarter of the year as part of a suite of documents on the care of children with complex medical needs. In the meantime, I understand detailed briefings are scheduled for operational staff and that an implementation plan will be agreed with each community healthcare organisation throughout the country.