Demelza House Hospice

EACH - photo of boys telling the time

Children and Young People with Complex Disabilities and/or Life-Limiting and Life-Threatening Illnesses in the UK

In the UK there are an estimated 800,000 disabled children and 49,000 children and young people living with a life-limiting and/or life-threatening illness. The Trustees are committed to making a difference to the lives of these babies, children, young people, and their families, to ensure that they can live their lives to the full, and to tackling the structural barriers which hinder these children and their families from living happy fulfilled lives. The Trustees believe that all children and young people with a life-limiting or life-threatening illness have the right to quality palliative care.

Palliative care improves the quality of life of patients and their families facing life-limiting illnesses. It treats the patient’s pain and symptoms and it is applicable early in the course of an illness, in conjunction with curative treatments, and at the end of life. Crucially palliative care also supports the patient’s family through the illness and their bereavement.

In this category the Trustees’ grant making is focussed on:

  • Support for organisations leading the way in developing services and opportunities for children and their families.
  • Raising the profile of these children and their families with central and local government.
  • Raising the profile of the siblings of these children and supporting services to meet their needs.

This year the Trustees have supported:

  • The commissioning of “Life to the Full”, a report into the provision of care and support in the UK for disabled children and children with life-limiting and life-threatening conditions. The report will inform the trust’s grant making, ensuring that it is as strategic and effective as it can be in helping these children and their families. The trust will work individually and with other organisations in the sector to collectively, and with government support, continue to address the challenges highlighted by the report.
  • The appointment of the UK’s first regional Lead Nurse in Neo-natal Palliative Care. This is a pan-London post and is co-funded by CW+ (Chelsea and Westminster Health Charity).
  • Sky Badger which finds help and activities for disabled children and their families in the UK by linking children and relevant charities and services via online resources such as its website, social media, and e-helpdesk.
  • The extension of the Pilots of a new model of volunteering to provide practical support to families of children with life-limiting and life-threatening conditions. This programme has been jointly developed with, and co-funded by, The Royal Foundation of the Duke and Duchess of Cambridge and Prince Harry. Further pilot sites have been funded for a Phase 2 pilot during 2015/2016 to test this model in different organisations.
  • The continuation of a grants programme through Bliss to improve family centred care in neonatal units across the UK.
  • A grant to Newcastle Healthcare Charity towards supporting a part-time paediatric palliative care consultant at the Great North Children’s Hospital.
  • The Childhood Bereavement Network to improve the quality and coverage of bereavement services for children.
  • Sibs which is the UK’s leading charity supporting siblings of disabled children.

Alongside these grants, the Trustees continue to fund the UK’s first Professorial Chair in Palliative Care for Children and Young People.