Currently, the SEND system is perceived as disjointed and presents many challenges for families of children with life-limiting conditions. These families routinely deal with over 30 professionals from education, social care, health and other services. Communication between agencies is said to be generally inadequate, leaving families burdened with the stress of navigating their way through an uncoordinated system.
This experience is common among families of disabled children. However, for families whose children’s lives are likely to be short, time wasted navigating through the system in this way can be particularly distressing. As one parent has said:
“It’s a minefield and you get frightened going through it. Services don’t join up and people don’t explain things to you. They don’t tell you what all the services actually do. By the time I had made it all fit together my child had passed away – that makes me sad that he could have had so much more out of life.”
The government’s reforms – currently being scrutinised by the House of Lords as part of the Children and Families Bill – are designed to end the adversarial nature of the present SEND system. Ministers hope that improved outcomes for children and young people will result from better integrated health, education and social care (EHC) assessment and plan; more integrated delivery for disabled children; and improved joint commissioning between local agencies. Local authorities will produce ‘Local Offers’ – developed in conjunction with children and families – to set out what services disabled children in a particular geographical area will be entitled to. The government has initiated a Pathfinder programme to test these proposals before they are fully implemented, which is managed by consultancy firms Mott Macdonald and SQW.
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 who may use palliative care services. Their need for integrated care is perhaps the most challenging and urgent of any cohort of children, given the complexity of the care required and the pressure of time.
However, evidence from the Pathfinder programme suggests that there is a very real danger that these children, families and services will miss out on the benefits of greater integration promised by the SEND reforms. Interim evaluation health agencies are poorly represented, while there is uncertainty about the role the voluntary sector could and should play.
Together for Short Lives’ project seeks to address these challenges, working with voluntary sector children’s hospice and palliative care providers in all 20 Pathfinder areas. We aim to deliver three key outcomes:
- Children and young people with life-limiting and life-threatening conditions are included in Pathfinder testing and benefit from greater integration.
- Children’s hospice and palliative care providers play an active role in supporting Pathfinders and in the delivery of the reforms.
- Schools and health and social care services are better equipped to support children with life-limiting conditions.
In order to deliver these outcomes Together for Short Lives will:
- Assess the current understanding of children’s palliative care and the extent to which children with life-limiting conditions are included in the Pathfinders.
- Work with Pathfinders to encourage them to include children with life-limiting and life-threatening conditions and the services that support them.
- Develop and deliver resources, workshops and tools to help voluntary children’s hospice and palliative care services engage with local authorities, health commissioners and schools.
- Strengthen understanding of children’s palliative care (in terms of what it is and who provides it) among health and social care agencies and the education sector, including schools. We will do this through a series of regional workshops
- Support engagement with young people who need palliative care so that they have a voice in the development of their personalised plans.
- Share learning and identify and disseminate examples of good practice.
- Support non-Pathfinder areas to prepare them for the future roll out of the new SEND system.
- Produce resources for schools to improve understanding and support children who need palliative care and raise awareness of services that provide palliative care locally.
We will also independently evaluate the project to better understand progress that we are able to make. For more information about the project – and to stay in touch with latest developments – visit the Together for Short Lives website.
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