Demelza House Hospice

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

In the UK, True Colours works to make a positive difference to the lives of children and young people with complex disabilities and/or life-limiting and life-threatening illnesses. We aim to provide support to enable these children and their families to live happy, fulfilled lives. This includes access to palliative care which should be a right for all who have a life-limiting or life-threatening illness.

We are very aware of the need to listen to parents and carers to improve support for families. In 2018, following consultation with our Parent Adviser Lisa Spinks, we launched the Breathing Spaces Fund to improve parent/carer rooms in hospitals. In 2019 we built on this programme with a grant to WellChild’s Family Tree Network – an online network which enables parents of children with exceptional health needs to be included, supported and listened to. We also made a grant towards the Martin House Research Centre at the University of York towards a coordinator who will support patient and public engagement in every aspect of the Centre’s work.

We continue to focus on support for those who have been bereaved of a child, through various pieces of work including funding for the Childhood Bereavement Network, new resources to support schools and a new grant towards research into the experiences of bereaved parents and families.

We have long been aware of a lack of accurate data on disabled children and children with life-limiting and/or life-threatening illnesses. This lack makes it difficult to plan, fund and deliver services to meet the need of every child and their family. We continue to provide funding to enable Anne Pinney, the True Colours Data Champion, to provide expert technical support to improve the use and understanding of existing data which is fundamental to commissioning good services.

We also continue to support the Professorial Chair in Palliative Care for Children and Young People at UCL Great Ormond Street Institute of Child Health, which is held by Professor Myra Bluebond-Langner. In 2018, an External Review Board expert panel found that ‘academic paediatric palliative care [should] continue at ICH/GOSH’ and that the calibre of the Chair’s research, particularly on decision making, will ‘become a gold standard reference in years to come.’ The Chair was established in 2010 and is the first of its kind.

We also provide support for a number of exceptional organisations including:

Sibs, the national charity for siblings of disabled children
Heart n Soul, a creative arts company and charity which provides opportunities for people with learning disabilities to discover, develop and share their artistic talents as widely as possible.
Jessie May, which provides home care for terminally ill children in Bristol and the surrounding area.