The Charity talks about its latest activities helping seriously ill children and their families in Northern Ireland, thanks to your support.
Roald Dahl's Marvellous Children's Charity makes life better for seriously ill children across the UK. To celebrate St Patrick's Day, here is a round up of the Charity's latest activities in Northern Ireland.
Providing direct support for seriously ill children and their families in financial hardship
Since April 2013 Roald Dahl's Marvellous Children's Charity has provided direct individualised support for 25 families in Northern Ireland through its Stronger Families Programme. Last year 9% of this programme was spent in Northern Ireland.
Our most recent support includes:
Improving the quality of hospice care for children with complex needs in Northern Ireland
Roald Dahl's Marvellous Children's Charity helped to support the Northern Ireland Children's Hospice with a grant of £6,000 to study the benefits of providing home-like hospice care for seriously children with complex needs.
The medical hospital environment can make it very difficult for seriously ill children and families to share any quality time together. No child should stay in hospital longer than is clinically necessary - especially for those children with complex needs who will not live for very long.
For some children, particularly those who require 24/7 care and are dependent upon technology (such as ventilation equipment), the goal of returning home is not always possible. And the children who can return home with their families can face long stays in hospital whilst arrangements are made.
To help these families, we supported the Hospice to study the benefits of their "step-down care" service. Step-down care is a bespoke programme of care which provides an alternative by creating a more home-like environment in the hospice.
The Hospice's study "Getting Home" demonstrated the benefits of providing step-down care for children and their families. It also identified and evaluated where and what other step-down care was being provided in Northern Ireland. The study produced many important recommendations about providing holistic care for children which we hope will be adopted across the UK.
"Getting Home" is a collaborative research study between the Northern Ireland Children's Hospice and Queen's University Belfast, funded with support from Roald Dahl's Marvellous Children’s Charity, the Burdett Trust for Nursing, Queen's University & the RCN Foundation.