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

True Colours is committed to making a positive difference to the lives of children and young people with complex disabilities and/or life-limiting and life-threatening illnesses. The Trust is committed to supporting these children and their families to ensure that they can 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.

In 2017/18 the Trust launched a new programme, the Breathing Spaces Fund, to improve parent/carer rooms in hospitals.  The Fund was developed in consultation with parents who explained the need for better facilities in hospitals as they “make families’ experiences in hospital more bearable, help parents develop friendships, share their experiences and give them the space they deserve”.  Parents and carers play a vital role in their child’s care and it is crucial that they are supported in this.  We hope that renovated parent/carer rooms will go some way to improving the support hospitals are able to offer parents and help create the ‘home from home’ environment they have told us they need.
True Colours is particularly grateful to all the clinicians, hospitals and hospital charities who have hosted our research visits and to Lisa Spinks, our parent adviser, whose advice and commitment to Breathing Spaces has been invaluable.

In 2017/18 True Colours made its fifth grant towards the core costs of the Childhood Bereavement Network (CBN) continuing its recognition of CBN’s impressive achievements under Alison Penny’s leadership. This core funding will further strengthen the network enabling it to advocate for bereaved children and their families at a national level as well as providing information and guidance to improve the quality and quantity of services across the UK.

A lack of accurate data on disabled children and children with life-limiting and/or life-threatening illnesses such as age, condition, ethnicity and where they live, makes it difficult to plan, fund and deliver services to meet the needs of every child and their family.  True Colours is supporting two significant pieces of work to address this ongoing problem.

The first is a new research study, Making Every Seriously Ill Child Count, led by Dr Lorna Fraser, Director of the Martin House Research Centre at the University of York.  The study will provide an up to date estimate of the number of babies, children and young people with life-limiting and life-threatening conditions across the UK and predict levels of need in the future.  Together for Short Lives identified the need for the study following a consultation with the children’s palliative care sector and approached True Colours for funding.

The second is the provision of expert technical support to improve the use and understanding of existing data which is fundamental to  commissioning good services.  This is in response to the gaps, anomalies and inconsistencies identified through the secondary data analysis we jointly commissioned in 2017 with the Council for Disabled Children. The report, found that the number of children with complex needs has more than doubled since 2004 and that services have not kept pace. Alongside challenges, the report also identified  concrete opportunities for joint working by key statutory and voluntary agencies to improve the collection and use of data.  We have asked the report’s author, Anne Pinney, to work alongside key agencies, to facilitate dialogue and encourage implementation of the report’s recommendations.

The Trust also provided on-going support for:

  • The UK’s first regional Lead Nurse in Neonatal Palliative Care at the Chelsea and Westminster NHS Foundation Trust which is co-funded by the Chelsea and Westminster NHS Foundation Trust and CW+.
  • The True Colours Chair in Palliative Care for Children and Young People at UCL Great Ormond Street Institute of Child Health.
  • Core support to a number of exceptional organisations working in the sector including Heart n Soul, Sibs, Jessie May, Sky Badger and Flamingo Chicks.