A key finding of the children’s palliative care needs assessment published in 2005 was that the preferred place of care for children with life-limiting conditions is the home.
At present, however, only 11% of seriously ill children die at home
, and better coordination of care was identified as a priority to enable more children to be cared for in their own homes.
To address this need the Irish Hospice Foundation is currently funding a Consultant Paediatrician with a Special Interest in Palliative Care and five Children’s Outreach Nurses.
Dr Mary Devins, Consultant Paediatrician
Appointed in April 2011, Dr Mary Devins is the first consultant to take on a national support role for all clinicians providing palliative care to children in Ireland. Based at Our Lady’s Children’s Hospital (Crumlin) and the Coombe Women & Infants University Hospital, she also provides leadership and support to the Children’s Outreach Nurses. Dr Devins has commented on the role of the paediatric palliative care team as follows:
“Families are often anxious … They see us as end-of-life care only. However, if we are involved from an earlier stage, we can then be seen as an extra resource in supporting the child and family''.
In some countries, such as the USA and Canada, paediatric palliative care is one of the first teams a family meets in hospital once a child has been diagnosed with a potentially life-threatening or life-limiting illness. The team are there in the background throughout the illness trajectory, regardless of the outcome. They then become known more as a supportive team rather than an end-of-life team.”
Children's Outreach Nurses
The Irish Hospice Foundation seed funded five of eight children outreach nurses for 3 years. Recently we have reopened our fund for support staff for children palliative care, including more nursing support.
Children with serious illnesses often spend a lot of time in hospital, in some cases even from birth. Their parents’ dearest wish may be to be able to bring their child home – yet when this happens, they may find the responsibility and uncertainty stressful, isolating and at times overwhelming. The child’s care can involve ongoing contact with a range of healthcare workers – public health nurses, physiotherapists, GPs, specialist palliative care professionals, voluntary organisations, etc. – but often there is no one person with whom parents can share all their anxieties and direct all of their questions to. This is where the Children’s Outreach Nurse comes in.
The Children's Outreach Nurses-pictured in May 2016
One of the nurses has described her role as follows:
“I support the family by being a constant presence in their lives and being available to help them solve the many issues that can emerge. Parents need somebody to ring up and get reassurance from. I lighten their burden by trying to do a lot of the organising for them. Otherwise, they could spend hours on the telephone struggling to get information or access to a service, and there would be less time for the family to just be a family. I am an advocate for the child …I advise and guide healthcare professionals in the community who are providing the direct care to children in the home''
''As I am so involved with the families, I can also identify the times they are struggling, or if brothers and sisters need extra time with their parents. As a constant link between the acute hospital service and the home, we can prevent children having to be brought to hospital more frequently.”
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Dispersed around the country, the Children’s Outreach Nurses also help alleviate the regional inequity that can exist in access to services. Nurses are currently based in the following locations and cover the surrounding counties:
The Children’s Outreach Nurses are adding value to existing services, facilitating smooth transitions between services and providing a bridge between hospitals, community care services and specialist palliative care services involved in supporting children with life-limiting conditions and their families.