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

I thank Senator Devine for raising the issue of parental representation regarding the care of children with complex medical needs. Both the Minister and I understand the importance of this issue for parents. Children with complex healthcare needs have substantial medical requirements as a result of one or more congenital, acquired or chronic conditions and there is frequently a need for technological assistance and ongoing nursing care to support parents in caring for their children at home. The care of these children is best managed in partnership between parents and specialist medical staff who work together to help children lead as normal a life as possible and to avoid hospital admission. To this end, the Minister secured additional funding in budget 2018 to increase the number of clinical paediatric home care packages delivered from 507 in 2017 to 584 this year. I am sure the House will welcome this expansion of such an important service.

Turning to the specific issue of parental representation, some parents and representative groups have recently sought to be included on the HSE's primary care steering group for children with complex medical needs. Following discussion in this House on 6 February, the matter has been re-examined in recent weeks. However, as was referenced in the House previously, this steering group is a clinical group which, as part of its remit, scrutinises commercially sensitive issues relating to the business process. Representation on the group is, therefore, not the best or most appropriate means of securing the views of parents.

We all want to ensure that parents can contribute their full expertise and knowledge regarding the needs of their children. It is for this reason that the HSE will establish a parental reference group that will feed directly into the work of the steering group. Although some details are still to be finalised, it is intended that the reference group will have an independent chair and up to ten parent representatives and will include the national lead for children with complex medical conditions as a member. The group will meet up to three times each year. This will include meeting the steering group. The proposed structure will ensure that the voices of more parents from across the country can be heard directly in order to help us shape how we deliver care to their children.

It is also important to note that, as part of a national quality assurance process, individual meetings have taken place between the HSE and parents in respect of the provision of paediatric care packages and these meetings will continue throughout the year. The HSE will also be holding workshops with parents, which, again, will enable parents to be heard in respect of the needs of their children.

The provision of additional paediatric home care packages and the establishment of the parental reference group demonstrate that the Government is committed to supporting the families of children with complex medical needs and to ensuring the provision of a service that works for parents and reflects their expertise and knowledge regarding those needs.