Children with life-threatening and life-limiting conditions:
Draft policies for the next Parliament

1. Every child should have access to children’s palliative care in the setting of their or their family’s choice and whenever they need it - 24 hours a day, seven days a week. This should include diagnosis, ongoing care and end of life care.

  • The NHS Outcomes Framework should include a new outcome measure to improve the experience of care for children and young people at the end of their lives.
  • The Clinical Commissioning Group (CCG) Outcomes Indicator Set should stipulate that data is collected on the numbers of children and young people with end of life plans who die in the place of their choice.
  • There should be greater clarity over the way responsibility for commissioning specialised and general children’s palliative care is divided between NHS England and CCGs.

2. Every child - and their family - should get a short break if they need one.

  • Short breaks for children who need palliative care should be fairly and sustainably funded from money allocated to local authorities for short breaks; local authority spending on short breaks should be regularly audited - and the findings made public - to assess whether this is the case.
  • Information about local need for short breaks should be collected in a more consistent way and used to inform what services are offered and to whom.
  • Local authorities should be subject to stronger duties and time frames to identify and assess all children who may require short breaks in their area. There should also be a stronger statutory framework for re-assessment intervals.

3. Services should be more integrated around the needs of children* and their families.

  • Every child should have a single assessment process and plan to co-ordinate their care from the ages of 0 – 25; this should be regardless of their educational status or whether they have a special educational need; their plan should include their transition to adult’s palliative care where appropriate.
  • Through its local offer, every local authority should have a duty to describe and provide information about the range of services which are available to children who need palliative care. Local authorities should be obliged to provide information on what is provided to help families to navigate the system. They should also consult with children*, their families and services providing children’s palliative care in developing their local offers.
  • Where children* are required to choose between receiving a personal budget or direct payment for any aspect of their palliative care, they should be supported with information to help them make this decision.
  • Every child should have a key worker or named person to co-ordinate their care. 
  • One Minister should be given overall responsibility for ensuring that Government policies for children* complement each other.
  • Children’s palliative care networks should be funded to support more co-ordinated services.

4. Every child - and their family - should have access to palliative care services, including children’s hospices, which are sustainable and fairly-funded.

  • The new statutory funding system for children’s palliative care services in England should be fully tested before it is implemented to ensure that it is fair and sustainable.
  • Children* and their families, in addition to professionals and services who provide children’s palliative care, should have a formal opportunity to have their say on the new funding system through a public consultation - before it is implemented.
  • The NHS England grant of £10.7million per year to children’s hospices should be maintained until the gap in local funding from CCGs is eliminated.
  • Commissioners should be clearly guided to help them comply with the law on ensuring social value when planning and procuring services.

5. Services which provide palliative care to children* - including children’s hospices - should be regulated fairly and proportionately.

  • Monitor should recognise the social value that voluntary organisations providing children’s palliative care offer to local communities in determining how the market to provide health services operates in England.
  • The Care Quality Commission (CQC) should recognise the unique nature of children’s palliative care - including children’s hospices - in regulating the care they provide.
  • The CQC should monitor the extent to which children* are offered care which is integrated and centred on them.

6. Every young person should have a smooth transition from children’s to adult’s palliative care services.

  • When a child who needs palliative care reaches the age of 14 (and is likely to continue to need services as an adult), their local authority should have a duty to initiate advance planning of their care needs as an adult - in addition to the needs of those caring for them.
  • These assessments should take place before the young person is 16.
  • Every young person over the age of 16 who needs palliative care (and is likely to continue to do so as an adult) should have a five-year rolling transition plan.
  • Local authorities should have a duty to meet the support needs of those caring for young people where it is likely that they will need support once their child reaches the age of 18.
  • Free social care should be provided to young people who need palliative care up to the age of 25.
  • Transition plans should include any intentions to enter further or higher education, enter the workplace or move to independent or assisted living; local authorities should be able to initiate housing assessments for young people in transition.

7. Support to families of children who die with life-threatening or life-limiting conditions should be improved.

  • Every employer should have a bereavement policy which includes an entitlement to time-off for bereaved family-members and agreed arrangements for pay during this period.
  • Families with low incomes should be supported in meeting funeral costs when a child dies.
  • Family carers who have provided long-term, full-time care to a child who has died with a life-threatening or life-limiting condition should be offered training and support to return to work.
  • There should be a gradual reduction - rather than a sudden end - to benefits paid to families who have cared for a child who has died with a life-threatening or life-limiting condition.
  • The Government should be made clear who is responsible for commissioning and providing bereavement care to families in local communities.
  • Every parent and sibling of a child with a life-threatening or life-limiting condition should have access to fairly and sustainably-funded pre and post bereavement support when and where they need it.

8. Families should receive help from the state to help mitigate the financial impact of caring for a child.

  • The mobility component of Disability Living Allowance (DLA) should be extended to include children under the age of three who need palliative care.
  • The DLA should not be stopped when a child who needs palliative care is in hospital for more than 84 days.
  • Housing benefit rules should be changed to allow for the costs of an extra bedroom where it is needed as a result of a child's life-threatening or life-limiting condition.
  • Families of children who need palliative care should be given appropriate information and support to help them access the benefits they are entitled to.
  • The Government should recognise the higher costs of childcare for children* within the Universal Credit.
  • The Government should extend the right to request flexible working from the first day of employment for parents of children who need palliative care.

* with life-threatening and life-limiting conditions.