Meeting statutory duties
ICBs must implement the following legal duties which directly relate to the palliative and end of life care needed by children and young people.
Health and Social Care Act 2022
To ensure that the palliative and end of life care needs of people of all ages, with progressive illness or those nearing the ends of their lives, their carers, and those important to them, receive the care and support they need to live and die well
Section 21 of the Health and Care Act 2022 states that
An integrated care board must arrange for the provision of the following to such extent as it considers necessary to meet the reasonable requirements of the people for whom it has responsibility—
(h) such other services or facilities for palliative care as the board considers are appropriate as part of the health service.
Find out more about what palliative and end of life care for children and young people is here.
Short breaks regulations
To enable short breaks for carers of disabled children section 2.10 of the ‘Short breaks for carers of disabled children: departmental advice for local authorities’ states:
Health services have multiple roles to play in the provision of short breaks for disabled children in their areas. They will directly provide and commission some services, for example, short breaks for children with complex health needs. (For some children, this may involve spending some time in a hospice.) They will also support local authority and voluntary and Community sector provision, for example, by training the workforce and providing nursing support and timely access to necessary equipment.
There is a legal precedence which establishes that the NHS is responsible for short breaks where the ‘scale and type of nursing care’ is such that it is outside that which can be provided by the local authority (R (T,D and B) v Haringey LBC).
Special educational needs and disability (SEND)
To meet the needs of those in palliative and of life care with special educational needs and disability (SEND): Jointly commissioning services, publishing local offers, EHC plans, and personal budgets
Many children and young people who need palliative and end of life care also have a special educational need or disability (SEND). The Children and Families Act 2014 is clear that ICBs have legal duties in respect of children and young people with SEND. This includes children who need palliative and end of life care.
Jointly commissioning services
NHS and local authorities have a legal duty to jointly commission education, health and care for children and young people with SEND.
The Special Educational Need and Disability (SEND) Code of Practice sets out in detail what local areas must and should do to jointly commission services for children and young people aged 0 – 25 with SEND.
Local offers
Local authorities must publish a local offer, setting out in one place information about provision they expect to be available across education, health and social care for children and young people in their area who have SEN or are disabled, including those with and without EHC plans. This includes both universal and specialist services.
ICBs, NHS England, NHS Trusts or NHS Foundation Trusts and local health boards must co-operate with local authorities in the development and reviewing of the local offer
Education, health and care (EHC) plans
EHC plans specify additional provision for those children or young people who a local authority decides require such a plan and whose educational needs cannot be met solely by their early years setting, school or college. EHC plans must focus on outcomes and local authorities must seek advice from a range of partners, including health, when assessing needs and drawing up plans.
ICBs have a legal duty to have mechanisms in place to ensure practitioners and clinicians will support the integrated EHC needs assessment process.
Personal budgets
Parents and young people with EHC plans can request a personal budget, which can include funding from education, health and social care. The scope for personal budgets will vary according to individual needs.
Decisions in relation to the health element (personal health budget) remain the responsibility of the ICB or other health commissioning bodies and where they decline a request for a direct payment, they must set out the reasons in writing and provide the opportunity for a formal review.
Children and young people who have a continuing care package have a legal right to a personal health budget.
The Department of Health and Social Care and the Department for Education provide and maintain 0 to 25 SEND code of practice: a guide for health professionals: Advice for Clinical Commissioning Groups, Health Professionals and Local Authorities
NHS England provides Children and Young people: Quick Guide About Personal Health Budgets and Integrated Personal Commissioning.
Find out how ICBs can meet these legal duties in a way which is consistent with the commissioning cycle here.