The Council for Disabled Children received funding from the Together for Short Lives Improving Transition for Young People Fund to develop a bespoke model of the CDC Expert Parent Programme. This model was originally targeted at parent carers of young people with Learning Disabilities and Complex Health Needs, supporting them to prepare for their child’s transition and to get the best out of our health and care system, but it has proved to be valuable for a much wider cohort of families.
The new programme includes information and tools to introduce parent carers to adult services and support them in preparing for their child’s transition. It has been piloted through six workshops in the East of England and NE London working with partners East Anglia’s Children’s Hospices, St Elizabeth’s Hospice Ipswich and Haven House Children’s Hospice. E-learning modules have been developed and a detailed suite of resources is available for free download. A small team of parent carer trainers with lived experience has been developed and can be contacted through CDC through PWatts@ncb.org.uk or directly on the Expert Parent Trainers’ Webpage