Quality statement 5: Neuro-rehabilitation

Quality statement

Children and young people (aged 0–24 years) who have had a central nervous system malignancy receive a specialist neuro-rehabilitation care package.

Rationale

All children and young people who have had cancer are likely to need some form of rehabilitation. Many children and young people who have had cancer affecting their central nervous system (such as brain tumours) are likely to need complex rehabilitation over a long period of time (for the rest of their lives for some people). Access to skilled neuro-rehabilitation can make a significant difference, enabling children and young people to become independent adults and reducing the need for ongoing complex care packages.

Quality measures

Structure

Evidence of local arrangements to ensure that all children and young people (aged 0–24 years) who have had a central nervous system malignancy receive a specialist neuro-rehabilitation care package.

Data source: Local data collection.

Process

The proportion of children and young people (aged 0–24 years) who have had treatment for a central nervous system malignancy who receive a specialist neuro-rehabilitation care package.

Numerator – the number of people in the denominator receiving a specialist neuro-rehabilitation care package.

Denominator – the number of children and young people (aged 0–24 years) who have had treatment for a central nervous system malignancy.

Data source: Local data collection.

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

Service providers ensure that specialist neuro-rehabilitation care packages are available for children and young people (aged 0–24 years) who have had a central nervous system malignancy.

Healthcare professionals ensure that children and young people (aged 0–24 years) who have had a central nervous system malignancy receive a specialist neuro-rehabilitation care package.

Commissioners ensure that they commission services that provide specialist neuro-rehabilitation care packages for children and young people (aged 0–24 years) who have had central nervous system malignancy.

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

Children and young people who have had cancer of the central nervous system (such as a brain tumour) are supported by a team of specialists to help them recover as fully as possible (called neuro-rehabilitation).

Source guidance

Definitions of terms used in this quality statement

Specialist neuro-rehabilitation care package

A package of support that takes into account the effects of the cancer and treatment on neurological, physical, psychological and academic function, recognising that these effects can become more evident over time. The specialist team should cover but not be limited to: speech and language therapy, physiotherapy, occupational therapy, neurology and psychology (including neuropsychology). The rehabilitation programme should continue for as long as it is needed and can make a difference. [Adapted from Children and young people with cancer: improving outcomes in children and young people with cancer. Rehabilitation: page 68, paragraph 6]

Equality and diversity considerations

When providing neuro-rehabilitation services for children and young people with cancer, any potential difficulties in accessing services, which may include distance, disability and financial barriers, should be taken into account.