Quality standard
Quality statement 5: Neuro-rehabilitation
Quality statement 5: Neuro-rehabilitation
Quality statement
Children and young people (aged 0 to 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
The following measures can be used to assess the quality of care or service provision specified in the statement. They are examples of how the statement can be measured, and can be adapted and used flexibly.
Structure
Evidence of local arrangements to ensure that all children and young people (aged 0 to 24 years) who have had a central nervous system malignancy receive a specialist neuro-rehabilitation care package.
Data source: Evidence can be collected from information recorded locally by provider organisations, for example from clinical pathways.
Process
The proportion of children and young people (aged 0 to 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 to 24 years) who have had treatment for a central nervous system malignancy.
Data source: Data can be collected from information recorded locally by healthcare professionals and provider organisations, for example from patient records.
What the quality statement means for different audiences
Service providers ensure that specialist neuro-rehabilitation care packages are available for children and young people (aged 0 to 24 years) who have had a central nervous system malignancy.
Healthcare professionals ensure that children and young people (aged 0 to 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 to 24 years) who have had central nervous system malignancy.
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
Improving outcomes in children and young people with cancer. NICE guideline CSG7 (2005), Rehabilitation: page 69, paragraph 2
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 NICE's guideline on 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.