Preparing for the SEND reforms in children’s palliative care

Categories: Care.

Together for Short Lives is now into the second year of our project to improve the extent to which the children’s palliative care sector is engaged with the government’s special educational needs and disability (SEND) reforms.

Funded by the Department for Education (DfE), our project aims to ensure that children and young people with life-limiting and life-threatening conditions are included in local pathfinder testing and benefiting from greater integration; to make sure that children’s hospice and palliative care providers play an active role in supporting pathfinders and in the delivery of the reforms; and to make sure that schools and health and social care services are better equipped to support children with life-limiting conditions.

The national SEND reforms

At a national level, DfE has published a second draft SEND Code of Practice, which provides statutory guidance on duties, policies and procedures relating to the SEND reforms.

In the latest version, DfE is clearer about the distinction between what local authorities are duty-bound to do under Part Three of the Children and Families Act 2014 (which received Royal Assent during March 2014) – and what DfE believes that they should do.

The code provides clarity about the duties on schools, joint commissioning and on local authorities to support young people over the age of 18.The code is also clearer about how schools will be held to account in supporting pupils without Education Health and Care (EHC) plans – and on how local authorities will be held to account about their local offer. More information is provided about what different service providers are responsible for, and on how children and families can complain and seek redress.

The code reflects the amendment to the law to include disabled children with the scope of the local offer and joint commissioning duties. Through the code, DfE states that local offers must include health and care services needed by children with SEND such as wheelchair services and children’s community nursing. Local offers should also include palliative and respite care; other services for children with complex health needs; emergency care provision; continuing care arrangements; and support for young people when moving between healthcare services and children to healthcare services for adults.

The SEND reforms are due to come into force in September 2014.

In terms of Together for Short Lives’ project, we have recently published two new resources designed to help children’s palliative care providers engage with important elements of the SEND reforms:

Local engagement resource

The first is our interactive resource to help voluntary sector providers of children’s palliative care – including children’s hospices – to link in with NHS, education and care commissioners and providers in their local community.

Our local engagement resource aims to help services identify and engage the people and organisations in their local health, care and education sectors who can be influential in bringing about more integrated assessments and services for children and young people with life-threatening and life-limiting conditions. They include commissioners, providers and other system leaders.

Our resource includes:

  • stakeholder maps – which show how the money flows and who the important decision-makers are
  • advice on how to contact individuals and organisations
  • template emails and letters
  • key messages about children’s palliative care and life-threatening and life-limiting conditions in children.

Personal budgets briefings

Our resources for services is a set of three briefings prepared by the charity In Control to help voluntary sector providers of children’s palliative care in England – including children’s hospices – get ready for the introduction of personal budgets.

From September 2014, children and young people with EHC plans will have a right to a personal budget. Where they want them, families will be able to use their personal budget – comprised of money allocated to them by the NHS and local authorities – to pay for many of the education, health and care services which their child needs:

  1. Briefing one provides an introduction to personal budgets and describes how they have worked already in other settings, such as adult social care.
  2. Briefing two describes how personal budgets will work for families of children with life-threatening and life-limiting conditions.
  3. Briefing three advises children’s palliative care services on the action they need to take to prepare for personal budgets being implemented.

All three briefings include real-life case studies and links to other resources and best practice examples.

SEND regional network events

Part of our SEND project also involves holding a series of six regional events for those involved in supporting children and young people with life-limiting and life-threatening conditions.

These are designed for those working particularly in statutory health, education and social care services to improve understanding of children and young people who need palliative care – and how to support them in planning and service delivery. We plan to host up to 50 delegates at each event, who will hear perspectives from local authorities, pathfinders, parents and providers. For more information, please visit the events section of Together for Short Lives’ website

You can keep up to date with the project at

We are always on the lookout for case studies of effective partnership working between health, education and social care services. If you have a case study in your area which you would like to showcase, please email

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