Quality standard

Quality statement 2: Annual review

Quality statement

Adults with cerebral palsy who have complex needs have an annual review with a healthcare professional with expertise in neurodisabilities.

Rationale

Care and support needs for adults with cerebral palsy may change. An annual review is an opportunity to identify changes; assess clinical and functional needs; check for problems and comorbidities; and make sure that the person's needs are being met. People with complex needs, including multiple medical comorbidities, or cognitive or communication impairments, would benefit most from an annual review. Annual reviews may help reduce unplanned admissions to hospital and improve the person's quality of life. Information about the review and any changes to the person's needs should be shared, with the person's permission, to ensure integrated care between the different healthcare professionals providing care and support. A main point of contact should also be provided to ensure that people can access advice and services between reviews.

Quality measures

Structure

Evidence of local systems and pathways to identify adults with cerebral palsy who have complex needs and invite them to have annual reviews.

Data source: Local data collection, for example, from service specifications.

Process

a) Proportion of adults with cerebral palsy and complex needs who have had an annual review within the last 12 months carried out by a healthcare professional with expertise in neurodisabilities.

Numerator – the number in the denominator who have had an annual review within the last 12 months carried out by a healthcare professional with expertise in neurodisabilities.

Denominator – the number of adults with cerebral palsy and complex needs.

Data source: Local data collection, for example, local audit of patient records.

b) Proportion of adults with cerebral palsy and complex needs who are given details of a main contact for support at their annual review.

Numerator – the number in the denominator given details of a main contact for support at their annual review.

Denominator – the number of adults with cerebral palsy and complex needs who had an annual review.

Data source: Local data collection, for example, audit of patient records.

Outcome

a) Rate of unplanned hospital admissions of adults with cerebral palsy.

Data source: Local data collection, for example, local audit of patient records. NHS Digital's Hospital Admitted Patient Care Activity includes number of admissions by primary diagnosis and admission type.

b) Health-related quality of life of adults with cerebral palsy and complex needs.

Data source: Local data collection, for example, survey of adults with cerebral palsy.

What the quality statement means for different audiences

Service providers (neurology services and rehabilitation medicine services) ensure that systems are in place to identify adults with cerebral palsy who have complex needs and offer them annual reviews with a healthcare professional with expertise in neurodisabilities. They ensure that reviews include information from a range of health and social care professionals, including assessments carried out by specialist multidisciplinary teams in the past year. They have systems in place to document the reviews, share the results and provide a main point of contact to the person with cerebral palsy.

Healthcare professionals (with expertise in neurodisabilities) offer an annual review of clinical and functional needs to adults with cerebral palsy who have complex needs. They discuss what information should inform the review and who should receive clinical information following the review. They also identify who will be the main point of contact between reviews and provide information on how to contact them.

Commissioners (such as clinical commissioning groups and NHS England) ensure that service specifications for neurodisability and rehabilitation medicine include annual reviews for adults with cerebral palsy who have complex needs with a healthcare professional with expertise in neurodisabilities.

Adults with cerebral palsy who have complex needs are asked if they would like to have a regular review of their needs with a healthcare professional with expertise in neurodisability. The review will be done at least every year and means that the specialist can see how well the person's care and support are working and discuss whether any changes are needed. The results and any changes to treatment or care will be shared with others providing care and treatment, with the person's permission. The person will also be given details of a main point of contact for advice and support between reviews.

Source guidance

Cerebral palsy in adults (2019) NICE guideline NG119, recommendation 1.1.13

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]

Complex needs

Gross Motor Function Classification System levels 4 and 5 and any of the following:

  • communication difficulties

  • learning disabilities

  • living in long-term care settings

  • living in the community without sufficient practical and social support (for example, being cared for by elderly, frail parents)

  • multiple comorbidities.

The Gross Motor Function Classification System is a 5‑level clinical classification system that describes the gross motor function of people with cerebral palsy based on self-initiated movement abilities. People assessed as level 1 are the most able and people assessed as level 5 are dependent on others for all their mobility needs.

[NICE's guideline on cerebral palsy in adults, recommendation 1.1.13 and terms used in this guideline]

Annual review

A planned clinical appointment between an adult with cerebral palsy and a healthcare professional, or group of healthcare professionals, with expertise in neurodisability. They may explore common concerns, physical symptoms, mental health, pain, nutrition, communication and barriers to participation in everyday life to ensure an individualised approach to care. This also allows the opportunity to address general health issues that affect people as they grow older.

This review is distinct from, and in addition to, other reviews that an adult with cerebral palsy may have, such as an annual health check in primary care for adults with learning disabilities and reviews of care and support plans of people using social care services.

[Adapted from NICE's guideline on cerebral palsy in adults, terms used in this guideline, and expert opinion]

Equality and diversity considerations

Adults with cerebral palsy who have complex needs have limited mobility and may find it difficult to attend an appointment. Arrangements should be made to:

  • offer an accessible location for the review within a reasonable travelling distance for the person

  • provide accessible transport services

  • ensure that appropriate equipment (for example, hoists and wheelchair weighing scales) and adequate changing and toilet facilities are available

  • offer an alternative to clinic-based review, such as home visits.