The need for the planning and development of a co-ordinated, equitable and flexible paediatric palliative care service for children with life-limiting illnesses has been highlighted by the country's only paediatric palliative care consultant, Dr Maeve O'Reilly.
Dr O'Reilly said children with life-limiting illnesses and their families should have equal access to the same quality of service, no matter where they lived in Ireland or what their diagnosis, but this has not been the case to date.
"The services need to address not only the physical aspects of the child's illness, but their psychological and social needs and it has to be a flexible service as a child can live for many years with an illness and their needs will change over these years," she said.
Dr O'Reilly will be a keynote speaker at the national paediatric palliative care conference being hosted by the paediatric unit at Sligo General Hospital on Thursday, in an effort to address the needs and challenges of providing palliative care to children, and also support to their families.
"Child palliative care ranges from children where curative treatment can be feasible or fail [such as cancer] to children with severe neurological disabilities which cause susceptibility to complications which may be life threatening," she said.
An average of 370 children die of life-limiting illness (ie by the age of 18 years) every year in Ireland and one-third of all these deaths occur in the first week of life, but there are no statistics available for the number of children living with such an illness.
Dr O'Reilly pointed out that the Child Palliative Care Needs Assessmentpublished by the Department of Health and the Irish Hospice Foundation (IHF) in 2005 highlighted the many inadequacies in the services, particularly for children with non-malignant illnesses.
"Since then, there has been a lot of positive developments and Mary Harney has been very supportive and secured funding for the development of a child palliative care service by the Department of Health and the IHF. A steering group has been established, of which I am a member, and we have identified a number of short-, medium- and long-term goals," she explained.
Dr O'Reilly said some of these goals were already being addressed including the roll-out of educational courses for nurses and the establishment of an advisory group by the Department of Health to advise on policy.
She said future developments would include expanding this educational programme to all members of the palliative care team, the appointment of a paediatric specialist, improved respite facilities at home, the development of a children's hospice and the expansion of bereavement services.
Dr Hilary Greaney, paediatric consultant at Sligo General and one of the conference organisers, said the needs of children were very different to those of adults, but to date only adult palliative care services have been available in the Republic. "We need a child- and family-friendly service. Most parents want their child to die at home so we must develop a good community-based service that can be provided to families in the home during this time," she said.
The conference takes place in the Radisson SAS Hotel at Rosses Point, Sligo, 8.30am-4pm. Tel: 087-2786946 or download a booking form on www.iapc.ie
