Quality statement 2: Named medical specialist

Quality statement

Infants, children and young people with a life-limiting condition have a named medical specialist who leads and coordinates their care.

Rationale

Assigning a named medical specialist to an infant, child or young person with a life-limiting condition can improve care. A named medical specialist can coordinate care and provide information and support, be a consistent contact to ensure that the infant's, child's or young person's needs are taken into account. The named medical specialist may change if the care that is needed or the care setting changes.

Quality measures

Structure

Evidence of local arrangements to ensure that named medical specialists are assigned to infants, children and young people with a life-limiting condition to lead and coordinate their care.

Data source: Local data collection.

Process

Proportion of infants, children and young people with a life-limiting condition who have a named medical specialist.

Numerator – the number in the denominator who have a named medical specialist.

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

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

Outcome

Level of satisfaction with end of life care in children and young people with a life-limiting condition.

Data source: Local data collection based on feedback from children and young people with a life-limiting condition and their parents and 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 a named medical specialist is available to lead and coordinate the care of infants, children and young people with a life-limiting condition.

Health and social care practitioners (such as secondary care doctors, nurses, GPs, community nurses and care workers) are aware of care pathways to ensure that infants, children and young people with a life-limiting condition have a named medical specialist who leads and coordinates their care.

Commissioners (NHS England and clinical commissioning groups) ensure that they commission services in which infants, children and young people with a life-limiting condition have a named medical specialist who leads and coordinates their care.

Babies, children and young people with a condition that may shorten their life have a healthcare professional who is their main contact. This person leads and coordinates their care as well as providing ongoing information and support.

Definitions of terms used in this quality statement

Named medical specialist

Named medical specialists may include:

  • specialists in the child's underlying condition

  • consultants and community paediatricians

  • palliative care consultants

  • hospice medical leads.

[Expert opinion]