Together for Short Lives
Together for Short Lives and Children and Families Research Team, CTHER Coventry University.
- Professor Jane Coad (CFR)
- Dr. Anita Franklin (CFR)
- Charlotte Clowes (CFR)
The SEND Reforms have the potential to transform the lives of the 40,000 children and young people with life-limiting and life-threatening conditions and their families in England. However, a significant proportion of children’s palliative care is delivered by voluntary providers, and there is a danger that many children with life-limiting conditions who have special educational needs might not benefit from the joined-up approaches required within the reforms. Underpinned by a Participator Action Research framework, the project looked to measure the improved engagement of local children’s palliative care providers in the reform of SEND in England.
Despite being delivered during a time of an unprecedented changing landscape and indeed considerable changes in personnel within local authorities, the SEND project has had a great deal of success and the evidence strongly supports that awareness and understanding of the reforms and of the implications of these for palliative care services and their families has been raised, and momentum can be seen to be gathering around improved partnership working across the services. Not without expectation given the complexity, there still remains unmet needs especially around personal budgets, commissioning especially how this will affect palliative care services, development of single EHC plans and as indicated above involvement of parents/carers and young people.
The strong partnership between the CFR team, Coventry University and Together for Short Lives has flourished over the first two years of the project and as a result, further funding has been made available to seek to build on the progress of the project and focus on supporting delivery and encouraging innovation in the future.