Better palliative care needed for children in Northern Ireland

In Northern Ireland alone, there are currently estimated to be 1,300 children and young people living with life-shortening conditions. Many of these children have extremely complex and unpredictable conditions, requiring round the clock care, seven days a week.

Northern Ireland Children’s Hospice and Together for Short Lives are leading the way on behalf of local children and families by reaching out to the parties contesting the Northern Ireland Assembly elections to highlight a number of key gaps in the way in which children’s palliative care is provided in Northern Ireland. Their new document ‘Transforming the lives of children with life-shortening conditions’ sets out the manifesto commitments which the Northern Ireland children’s palliative care sector is calling on the Northern Ireland Assembly parties to make for the new mandate.

Children’s palliative care services like Northern Ireland Children’s Hospice offer a lifeline for families caring for children with life-shortening conditions but these families still have to fight to access the care and support they need. In Northern Ireland, the volume and frequency of care secured by these families is rarely sufficient to meet their needs.

Among the gaps highlighted in the new document is:

• the pressing need for a dedicated children’s palliative care consultant in Northern Ireland
• the need for more qualified children’s palliative care nurses in Northern Ireland
• enhanced access to emergency planned short breaks for children both in the home and outside the home.

Critically, it also calls for a fully funded children’s palliative care strategy for Northern Ireland, which would address many of the core gaps and provide a framework for appropriate and consistent children’s palliative care services for every family who needs it in Northern Ireland into the future.

Commenting on the new manifesto asks, Tina McCrossan, Northern Ireland Children’s Hospice Director of Children’s and Young People’s Services commented:

“Our seven manifesto asks set out the steps that the next Northern Ireland Executive can take to improve the lives of children with life-shortening conditions and their families. We want the executive to increase the availability of short breaks in and outside the home. Many of these breaks are taken at Northern Ireland Children’s Hospice and they allow parents time to spend time with each other, with their other children, or simply to take a rest from caring around the clock. We would also like the executive to develop the children’s palliative care workforce and provide support for young people as they transition from children’s to adult services’

We look forward to working closely with the next executive to make these aspirations become a reality for the 1,300 children in Northern Ireland with life-limiting conditions.”

Supporting the efforts here in Northern Ireland, Together for Short Lives’ Chief Executive Barbara Gelb OBE, said:
 
“The Northern Ireland Executive has the opportunity to transform the lives of the 1,300 children and young people with life-shortening conditions across Northern Ireland. Although their number is relatively small, these children have complex and unpredictable conditions and rely on tailored care and support. Parents provide most of the care for the child 24/7 at home, but need regular short breaks and specialist support to make this sustainable, as well as access to round the clock care when their child is at end of life.

 
Time is short for these children and it is vital that all the parties prioritise sustainable funding for children’s palliative care, including planned and emergency short breaks – so families can get the care and support they need, and make the very most of their short time together.”

Read about one family supported by Northern Ireland Children's Hospice and their experiences of children's palliative care.

1 Comments

  • Anonymous commenter 01 March 2016, 19:24

    This is a matter that requires urgent attention from our Assembly members. Having had a child born with very complex needs, we found ourselves in the horrendous position of spending the first and last 7 months of our child's life in a neonatal unit and children's ward. Our daughter was only able to come home for 2 separate days during this period. This involved ambulance transportation and two nurses. The process of getting her home for good was so complex and arduous it could not be completed before she died. Although hospital staff were brilliant a busy general ward is not appropriate for end of life care.

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