Quality statement 6: Care at home

Quality statement

Infants, children and young people approaching the end of life and being cared for at home have 24-hour access to both children's nursing care and advice from a consultant in paediatric palliative care.

Rationale

Home-based care for infants, children and young people approaching the end of life can be preferable to hospital care and has been linked with improved patient experience. However, to ensure they receive the right care and have the highest quality of life possible, children's nursing care and advice from a consultant in paediatric palliative care should be available at all times, if needed. The advice from the consultant in paediatric palliative care could be provided in person or by phone.

Quality measures

Structure

a) Evidence of local arrangements to ensure that children's nursing care is available 24 hours a day for infants, children and young people approaching the end of life who are being cared for at home.

Data source: Local data collection.

b) Evidence of local arrangements to ensure that advice from a consultant in paediatric palliative care is available 24 hours a day for infants, children and young people approaching the end of life who are being cared for at home.

Data source: Local data collection.

Process

a) Proportion of infants, children and young people approaching the end of life and being cared for at home who have 24-hour access to children's nursing care.

Numerator – the number in the denominator who have 24-hour access to children's nursing care before their death.

Denominator – the number of infants, children and young people approaching the end of life and being cared for at home.

Data source: Local data collection based on audits of patient care records.

b) Proportion of infants, children and young people approaching the end of life and being cared for at home who have 24-hour access to advice from a consultant in paediatric palliative care.

Numerator – the number in the denominator who have 24-hour access to advice from a consultant in paediatric palliative care before their death.

Denominator – the number of infants, children and young people approaching the end of life and being cared for at home.

Data source: Local data collection based on audits of patient care records.

Outcome

Proportion of infants, children and young people who had the option of being cared for at home when approaching the end of life.

Data source: Local data collection based on feedback from children and young people, and from the parents or carers of infants, in the last days of life.

What the quality statement means for different audiences

Service providers (such as hospitals, hospices, GP practices and community nursing services) ensure that systems are in place for infants, children and young people approaching the end of life and being cared for at home to have 24-hour access to children's nursing care and advice from a consultant in paediatric palliative care.

Health and social care practitioners (such as secondary care doctors, nurses, GPs and community nurses) ensure that infants, children and young people approaching the end of life and being cared for at home are given contact details for children's nursing care and advice from a consultant in paediatric palliative care, available 24 hours a day.

Commissioners (clinical commissioning groups) ensure that they commission services that provide 24-hour paediatric palliative care services at home for children and young people approaching the end of life, which include 24-hour access to children's nursing care and advice from a consultant in paediatric palliative care.

Babies, children and young people who are nearing the end of their life and being cared for at home can have nursing care or advice from a specialist at any time of day or night, if they need it.

Definitions of terms used in this quality statement

Children's nursing care

The children's nurse should be a nurse who holds a recognised qualification in caring for children and who has the right knowledge, skill and competency across the child/young person's care pathway.

[Children and young people's health outcomes forum (2012) and expert opinion]