Children and Young People

Many children with life limiting, long term conditions are living into adulthood as a result of advances in medical care.

This presents a challenge for those who provide and commission services as

many adult services currently do not meet the specific needs of this group of individuals.
young adults and their families may experience anxiety about moving on from services and staff with whom they have developed a close relationship

The transition can be particularly difficult when the young adult might be approaching the end of life.

Better Care Better Lives (Department of Health 2008) identifies the need to ensure that transition should be ‘a planned and purposeful process’. The consensus is that, to be successful the transition process has to

start early
fully-involve the young person and their family
be an integrated approach, co-ordinated by an identified key individual responsible for ensuring that all aspects of care and support are adequately addressed
encompass planning for the death of the young person
consider how their individual care needs can be met by adult services
take into account the needs of families and carers

In some cases decisions will need to be made about

whether it is appropriate to transfer a particular child
some degree of flexibility regarding criteria for accessing services.

ACT has developed a Transition Care Pathway to support this process.

Organisations that provide advice, information and support

Children & young people’s care

ACT – the Association for Children’s Palliative Care

ACT is the UK wide charity working to achieve the best possible quality of life and care for every child and young person who is not expected to reach adulthood strives to achieve the best quality of life.

Visit the ACT website

the Transition Information Network (TIN)

An alliance of organisations and individuals who come together to improve disabled young people’s experience of transition to adulthood

Visit the TIN website

Association for all Speech Impaired Children (Afasic)

UK charity that helps children and young adults affected by the hidden disability of speech, language and communication impairments, their families and the professionals working with them.

Visit the Afasic website

I CAN

I CAN works to support children’s development of speech, language and communication skills.

Visit the I CAN website

Children’s Hospices UK

The national charity that gives voice and support to all children’s hospice services.

Visit the Children’s Hospices UK website

Family support

Contact a family for families with disabled children

The UK-wide charity providing advice, information and support to the parents of all disabled children.

Visit the Contact a family website

Sibs

Support for siblings who are growing up with or who have grown up with a brother or sister with a disability, long term chronic illness, or life limiting condition.

Visit the Sibs website