Quality statement 2: Access to a specialist nurse

Quality statement

People with idiopathic pulmonary fibrosis have an interstitial lung disease specialist nurse available to them.

Rationale

An interstitial lung disease specialist nurse can ensure that people with idiopathic pulmonary fibrosis, and their families and carers, receive all the information and support they need throughout the care pathway. This includes information about investigations, diagnosis and management. Interstitial lung disease specialist nurses can sensitively discuss prognosis, disease severity and progression, and life expectancy.

Quality measures

Structure

Evidence of local arrangements to ensure that an interstitial lung disease specialist nurse is available to people with idiopathic pulmonary fibrosis at all stages of the care pathway.

Data source: Local data collection.

Process

Proportion of people with idiopathic pulmonary fibrosis with an allocated interstitial lung disease specialist nurse.

Numerator – the number in the denominator with an allocated interstitial lung disease specialist nurse.

Denominator – the number of people with idiopathic pulmonary fibrosis.

Data source: Local data collection.

Outcome

Satisfaction of people with idiopathic pulmonary fibrosis, and their families and carers, with the support they receive.

Data source: Local data collection.

What the quality statement means for service providers, healthcare professionals and commissioners

Service providers (regional specialist centres) ensure that an interstitial lung disease specialist nurse is available to people with idiopathic pulmonary fibrosis, and their families and carers, at all stages of their care.

Healthcare professionals ensure that a referral is made to an interstitial lung disease specialist nurse who is available to people with idiopathic pulmonary fibrosis, and their families and carers, to support them throughout their care pathway.

Commissioners (NHS England specialised services area teams) ensure that they commission services from regional specialist centres that employ interstitial lung disease specialist nurses as part of their multidisciplinary teams.

What the quality statement means for patients, service users and carers

People who have idiopathic pulmonary fibrosis have a specialist nurse with training and experience in lung disease to provide information and support to them, and their families and carers, throughout all stages of their care. They can discuss tests, treatment options and any other concerns they have about their condition with the specialist nurse.

Source guidance

Definitions of terms used in this quality statement

Interstitial lung disease specialist nurse

An interstitial lung disease specialist nurse is involved in a service that sees at least 500 people with interstitial lung disease a year or has completed at least 6 months of specialist training in interstitial lung disease. The interstitial lung specialist nurse is readily contactable by people with idiopathic pulmonary fibrosis (and if they wish their families and carers) at all stages of the care pathway.

[Full guideline on idiopathic pulmonary fibrosis and expert opinion]

Equality and diversity considerations

Some people with idiopathic pulmonary fibrosis may have an interstitial lung disease specialist nurse who is located a considerable distance from them, because of the specialist nature of these nurses' role. To ensure equality of access to care, measures should be put in place to support access to interstitial lung disease specialist nurses, for example by providing telephone and email contact details and, if needed, transport, and offering appointments in centres as near to the person's home as possible.