Quality standard
Quality statement 3: Independent living referral
Quality statement 3: Independent living referral
Quality statement
Adults with cerebral palsy who want support to live independently are referred to a professional with expertise in independent living.
Rationale
Adults with cerebral palsy should be able to live as independently as possible. They should be able to participate in activities they like and fully take part in life and the wider community. A professional with expertise in independent living, usually an occupational therapist, can work with people with cerebral palsy to assess their abilities and goals, identify any barriers, provide advice and tailor support to their aspirations and needs. This may include using assistive technologies or making modifications to their home or personal care assistance.
Quality measures
Structure
a) Evidence of local pathways that allow adults with cerebral palsy to be referred to a professional with expertise in independent living.
Data source: Local data collection, for example, from service specifications, NHS trust directories of services and clinical commissioning group pathways.
b) Evidence of local networks of care providing occupational therapy services to adults with cerebral palsy.
Data source: Local data collection, for example, from service specifications.
Process
Proportion of adults with cerebral palsy who want support to live independently referred to a professional with expertise in independent living.
Numerator – the number in the denominator referred to a professional with expertise in independent living.
Denominator – the number of adults with cerebral palsy who want support to live independently.
Data source: Local data collection, for example, local audit of patient records.
Outcome
Proportion of adults with cerebral palsy who feel that they live independently.
Numerator – the number in the denominator who feel that they live independently.
Denominator – the number of adults with cerebral palsy.
Data source: Local data collection, for example, local survey of adults with cerebral palsy.
What the quality statement means for different audiences
Service providers (such as occupational therapy services) ensure that referral pathways are in place so that adults with cerebral palsy who want support to live independently can be referred to a healthcare professional with expertise in independent living.
Health and social care professionals (such as GPs, rehabilitation consultants, neurology consultants, allied health professionals and social workers) ask adults with cerebral palsy what they enjoy doing, if they find it difficult to participate in activities and what living independently means to them. They give information about assessments of independent living skills and refer people who would like support to live independently to a healthcare professional with expertise in independent living, usually an occupational therapist.
Commissioners (such as clinical commissioning groups) commission occupational therapy services for adults with cerebral palsy who want support to live independently, and ensure that referral pathways are in place.
Adults with cerebral palsy who want support to live independently are referred for support from a healthcare professional with expertise in independent living. They discuss how the person would like to live their life, and what activities are meaningful and important to them. They also discuss what activities the person finds difficult, problems they may face and how these can be overcome through special equipment and adaptions, or developing skills and new ways to perform tasks.
Source guidance
Cerebral palsy in adults. NICE guideline NG119 (2019), recommendation 1.2.11
Definitions of terms used in this quality statement
Adults
For this quality standard, adults are defined as people aged 25 and over, in line with the source guidance. The NICE quality standard for cerebral palsy in children and young people covers people under 25. [NICE's guideline on cerebral palsy in adults]
Professional with expertise in independent living
A professional, usually an occupational therapist, who can assess the functional ability of adults with cerebral palsy, what their home situation is like, what support networks are in place and discuss their goals for independent living. They can identify activities that people have difficulty with, potential barriers to achieving goals, and interventions that will enable independent living. [Adapted from NICE's guideline on cerebral palsy in adults and expert opinion]