Quality statement 4: Specialist paediatric palliative care team

Quality statement

Infants, children and young people with a life-limiting condition are cared for by a multidisciplinary team that includes members of the specialist paediatric palliative care team.

Rationale

It is important to manage distressing symptoms, in particular pain and agitation, to ensure that infants, children and young people approaching the end of life have the best quality of life possible. Being cared for by a multidisciplinary team that includes members of the specialist paediatric palliative care team ensures necessary assessments are carried out and treatment can be provided to resolve any distressing symptoms as quickly as possible.

Quality measures

Structure

Evidence of local arrangements to ensure multidisciplinary teams involved in the care of infants, children and young people with life-limiting conditions include input from the specialist paediatric palliative care team.

Data source: Local data collection.

Process

Proportion of infants, children and young people with life-limiting conditions cared for by a multidisciplinary team that includes input from a specialist paediatric palliative care team.

Numerator – the number in the denominator cared for by a multidisciplinary team that includes input from a specialist paediatric palliative care team.

Denominator – the number of infants, children and young people with life-limiting conditions.

Data source: Local data collection.

Outcome

Level of satisfaction with end of life care in infants, children and young people with life-limiting conditions, and their parents or carers.

Data source: Local data collection based on feedback from children and young people with a life-limiting condition and their parents or carers and other people important to them.

What the quality statement means for different audiences

Service providers (such as hospitals, hospices, GP practices and community nursing services) ensure that protocols are in place for multidisciplinary teams caring for infants, children and young people with life-limiting conditions to include members of the specialist paediatric palliative care team.

Health and social care practitioners (members of the multidisciplinary team such as secondary care doctors, nurses, GPs and care workers) involve the specialist paediatric palliative care team when infants, children and young people are approaching the end of life and have unresolved distressing symptoms.

Commissioners (clinical commissioning groups) ensure that the services they commission have arrangements in place for infants, children and young people with life-limiting conditions to be cared for by a multidisciplinary team that includes members of the specialist paediatric palliative care team.

Babies, children and young people with a condition that may shorten their life are cared for by a team that includes specialists in caring for children and young people at the end of life. The team can provide treatment quickly to help with the symptoms and make sure the infant, child or young person is as comfortable as possible.

Source guidance

End of life care for infants, children and young people with life-limiting conditions: planning and management (2016) NICE guideline NG61, recommendation 1.3.20, 1.5.2 and 1.5.3

Definitions of terms used in this quality statement

Specialist paediatric palliative care team

The specialist paediatric palliative care team should include as a minimum:

  • a paediatric palliative care consultant

  • a nurse with expertise in paediatric palliative care

  • a pharmacist with expertise in specialist paediatric palliative care

  • experts in child and family support who have experience in end of life care (for example, in providing social, practical, emotional, psychological and spiritual support).

[NICE's guideline on end of life care for infants, children and young people with life-limiting conditions, recommendation 1.5.4]