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Transition from children to adult services for young people with cerebral palsy

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Cerebral palsy in under 25s

About

What is covered

This interactive flowchart covers diagnosing, assessing and managing cerebral palsy in children and young people from birth up to their 25th birthday. It aims to make sure they get the care and treatment they need for the developmental and clinical comorbidities associated with cerebral palsy, so that they can be as active and independent as possible.
The management of cerebral palsy is provided by a variety of multidisciplinary services with a focus on maximising individual function, choice and independence. There are 2 main components to it.
The first component is optimising movement and posture while minimising potential secondary musculoskeletal deformity. It is covered by the interactive flowchart on spasticity in children and young people, which concentrates on the motor disorder of cerebral palsy. The second component is recognising and intervening to address the many developmental and clinical comorbidities that are associated with cerebral palsy.

Updates

Updates to this interactive flowchart

9 October 2017 Cerebral palsy in children and young people (NICE quality standard 162) added.

Person-centred care

People have the right to be involved in discussions and make informed decisions about their care, as described in your care.
Making decisions using NICE guidelines explains how we use words to show the strength (or certainty) of our recommendations, and has information about prescribing medicines (including off label use), professional guidelines, standards and laws (including on consent and mental capacity), and safeguarding.

Your responsibility

Guidelines

The recommendations in this guideline represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, professionals and practitioners are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or the people using their service. It is not mandatory to apply the recommendations, and the guideline does not override the responsibility to make decisions appropriate to the circumstances of the individual, in consultation with them and their families and carers or guardian.
Local commissioners and providers of healthcare have a responsibility to enable the guideline to be applied when individual professionals and people using services wish to use it. They should do so in the context of local and national priorities for funding and developing services, and in light of their duties to have due regard to the need to eliminate unlawful discrimination, to advance equality of opportunity and to reduce health inequalities. Nothing in this guideline should be interpreted in a way that would be inconsistent with complying with those duties.
Commissioners and providers have a responsibility to promote an environmentally sustainable health and care system and should assess and reduce the environmental impact of implementing NICE recommendations wherever possible.

Technology appraisals

The recommendations in this interactive flowchart represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, health professionals are expected to take these recommendations fully into account, alongside the individual needs, preferences and values of their patients. The application of the recommendations in this interactive flowchart is at the discretion of health professionals and their individual patients and do not override the responsibility of healthcare professionals to make decisions appropriate to the circumstances of the individual patient, in consultation with the patient and/or their carer or guardian.
Commissioners and/or providers have a responsibility to provide the funding required to enable the recommendations to be applied when individual health professionals and their patients wish to use it, in accordance with the NHS Constitution. They should do so in light of their duties to have due regard to the need to eliminate unlawful discrimination, to advance equality of opportunity and to reduce health inequalities.
Commissioners and providers have a responsibility to promote an environmentally sustainable health and care system and should assess and reduce the environmental impact of implementing NICE recommendations wherever possible.

Medical technologies guidance, diagnostics guidance and interventional procedures guidance

The recommendations in this interactive flowchart represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, healthcare professionals are expected to take these recommendations fully into account. However, the interactive flowchart does not override the individual responsibility of healthcare professionals to make decisions appropriate to the circumstances of the individual patient, in consultation with the patient and/or guardian or carer.
Commissioners and/or providers have a responsibility to implement the recommendations, in their local context, in light of their duties to have due regard to the need to eliminate unlawful discrimination, advance equality of opportunity, and foster good relations. Nothing in this interactive flowchart should be interpreted in a way that would be inconsistent with compliance with those duties.
Commissioners and providers have a responsibility to promote an environmentally sustainable health and care system and should assess and reduce the environmental impact of implementing NICE recommendations wherever possible.

Short Text

Everything NICE has said on cerebral palsy in children and young people under 25 in an interactive flowchart

What is covered

This interactive flowchart covers diagnosing, assessing and managing cerebral palsy in children and young people from birth up to their 25th birthday. It aims to make sure they get the care and treatment they need for the developmental and clinical comorbidities associated with cerebral palsy, so that they can be as active and independent as possible.
The management of cerebral palsy is provided by a variety of multidisciplinary services with a focus on maximising individual function, choice and independence. There are 2 main components to it.
The first component is optimising movement and posture while minimising potential secondary musculoskeletal deformity. It is covered by the interactive flowchart on spasticity in children and young people, which concentrates on the motor disorder of cerebral palsy. The second component is recognising and intervening to address the many developmental and clinical comorbidities that are associated with cerebral palsy.

Updates

Updates to this interactive flowchart

9 October 2017 Cerebral palsy in children and young people (NICE quality standard 162) added.

Sources

NICE guidance and other sources used to create this interactive flowchart.
Cerebral palsy in children and young people (2017) NICE quality standard 162

Quality standards

Cerebral palsy in children and young people

These quality statements are taken from the cerebral palsy in children and young people quality standard. The quality standard defines clinical best practice for diagnosing, assessing and managing cerebral palsy in children and young people under 25 and should be read in full.

Quality statements

Follow-up for children with major risk factors for cerebral palsy

This quality statement is taken from the cerebral palsy in children and young people quality standard. The quality standard defines clinical best practice in diagnosing, assessing and managing cerebral palsy in children and young people and should be read in full.

Quality statement

Children with any major risk factor for cerebral palsy have enhanced clinical and developmental follow-up from birth to 2 years.

Rationale

The signs of cerebral palsy might not be apparent at birth. Following up children with any major risk factor for cerebral palsy for the first 2 years of life will help to identify and diagnose cerebral palsy as early as possible. Early diagnosis can guide interventions, inform prognosis and let family members know what to expect.

Quality measures

Structure
Evidence of local arrangements to provide enhanced clinical and developmental follow-up from birth to 2 years for children with any major risk factor for cerebral palsy.
Data source: Local data collection, for example, service protocols.
Process
a) Proportion of children with any major risk factor for cerebral palsy attending a routine appointment up to 3 months of age who had movement and development checked.
Numerator – the number in the denominator who had movement and development checked.
Denominator – the number of children with any major risk factor for cerebral palsy attending a routine appointment up to 3 months of age.
Data source: Local data collection, such as the Royal College of Paediatrics and Child Health personal child health record (‘red book’).
b) Proportion of children with any major risk factor for cerebral palsy and older than 3 months who have a planned schedule of developmental follow-ups.
Numerator – the number in the denominator who have a planned schedule of developmental follow-ups.
Denominator – the number of children with any major risk factor for cerebral palsy and older than 3 months.
Data source: Local data collection, such as the Royal College of Paediatrics and Child Health personal child health record (‘red book’).
Outcome
Number of children and young people with cerebral palsy who were diagnosed by age 2 years.
Data source: Local data collection.

What the quality statement means for different audiences

Service providers (such as secondary care services) work together to ensure the provision of enhanced clinical and developmental follow‑up for children from birth to 2 years (corrected for gestational age) who have any major risk factor for cerebral palsy.
Healthcare professionals (such as midwives and neonatologists) identify major risk factors for cerebral palsy and refer children who have a risk factor for cerebral palsy for enhanced clinical and developmental follow‑up from birth to 2 years (corrected for gestational age).
Commissioners (such as clinical commissioning groups) ensure that they commission services that support children with any major risk factor for cerebral palsy by providing enhanced clinical and developmental follow-up from birth to 2 years.
Babies who have problems that might cause cerebral palsy have their movement and development closely checked until they are 2 years old, because cerebral palsy is not always obvious at birth. Some common causes of cerebral palsy are problems in the way the baby’s brain develops before birth, an infection in the baby before or shortly after birth, or a difficult or early (preterm) birth.

Source guidance

Cerebral palsy in under 25s: assessment and management (2017) NICE guideline NG62, recommendations 1.1.2 and 1.3.1

Definitions of terms used in this quality statement

Major risk factors for developing cerebral palsy
The following are major risk factors for developing cerebral palsy:
  • birth before 28 weeks
  • neonatal encephalopathy
  • neonatal sepsis (particularly with a birth weight below 1.5 kg).
[NICE’s guideline on cerebral palsy in under 25s, recommendation 1.1.1 and expert consensus]
Enhanced clinical and developmental follow-up
Enhanced clinical and developmental follow-up ensures that a child has their movement and development closely checked. This should happen at their routine appointments up to age 3 months. They should then have extra follow‑up appointments to check for problems until they are 2 years old. However, these should be tailored to the needs of the child or young person. Follow-up should be provided by an expert who can draw on the following expertise from a multidisciplinary team:
  • paediatric medicine
  • nursing care
  • physiotherapy
  • occupational therapy
  • speech and language therapy
  • dietetics
  • psychology.
[Adapted from NICE’s guideline on cerebral palsy in under 25s, recommendation 1.5.3 and expert opinion]

Referral for children with delayed motor milestones

This quality statement is taken from the cerebral palsy in children and young people quality standard. The quality standard defines clinical best practice in diagnosing, assessing and managing cerebral palsy in children and young people and should be read in full.

Quality statement

Children with delayed motor milestones are referred to a child development service.

Rationale

The diagnosis of cerebral palsy is typically based on observations and parental reports on the attainment and quality of motor milestones. Referral to a child development service will enable early diagnosis of cerebral palsy, guide interventions, inform prognosis and let family members know what to expect.

Quality measures

Structure
Evidence of local arrangements to provide child development services for children with delayed motor milestones.
Data source: Local data collection, for example, service protocols.
Process
Proportion of children with delayed motor milestones who are referred to a child development service.
Numerator – the number in the denominator who are referred to a child development service.
Denominator – the number of children with delayed motor milestones.
Data source: Local data collection, such as the Royal College of Paediatrics and Child Health personal child health record (‘red book’).
Outcome
Number of children and young people with cerebral palsy who were diagnosed by age 2 years.
Data source: Local data collection.

What the quality statement means for different audiences

Service providers (such as primary care services) ensure that they provide healthcare professionals with training to enable them to identify delayed motor milestones in children.
Healthcare professionals (such as GPs, practice nurses and health visitors) are aware of motor milestones in children and refer children with delayed motor milestones to a child development service for multidisciplinary assessment.
Commissioners (such as clinical commissioning groups and local authorities) ensure that child development services are available to provide an assessment of motor milestones to help early diagnosis and intervention in children with delayed motor milestones.
Children with unusual signs that suggest possible cerebral palsy are referred to a specialist team at the local child development service for more checks to find out whether they have cerebral palsy. Examples of unusual signs are not sitting by 8 months, not walking by 18 months, or using one hand more than the other before 12 months.

Source guidance

Cerebral palsy in under 25s: assessment and management (2017) NICE guideline NG62, recommendation 1.3.6

Definitions of terms used in this quality statement

Delayed motor milestones
The following are the most common delayed motor milestones in children with cerebral palsy:
  • not sitting by 8 months (corrected for gestational age)
  • not walking by 18 months (corrected for gestational age)
  • early asymmetry of hand function (hand preference) before 1 year (corrected for gestational age).
[NICE’s guideline on cerebral palsy in under 25s, recommendation 1.3.5]
Child development service
A service that offers multidisciplinary assessment for children and that:
  • provides the following expertise, as appropriate, though a local network of care:
    • paediatric or adult medicine
    • nursing care
    • physiotherapy
    • occupational therapy
    • speech and language therapy
    • dietetics
    • psychology
  • can enable access to other services within their local or regional network as appropriate, including:
    • paediatric or adult neurodisability, neurology, neurorehabilitation, respiratory, gastroenterology and surgical specialist care
    • orthopaedics
    • orthotics and rehabilitation services
    • social care
    • visual and hearing specialist services
    • teaching support for preschool and school-age children, including portage (home teaching services for preschool children).
[Adapted from NICE’s guideline on cerebral palsy in under 25s, recommendation 1.5.3]

Information for parents and carers of children and young people with cerebral palsy

This quality statement is taken from the cerebral palsy in children and young people quality standard. The quality standard defines clinical best practice in diagnosing, assessing and managing cerebral palsy in children and young people and should be read in full.

Quality statement

Parents and carers of children and young people with cerebral palsy are given information about the diagnosis and management of cerebral palsy.

Rationale

Providing information is essential in enabling parents and carers to help children and young people with cerebral palsy to manage their condition and in reducing the chance of complications. It also helps to reduce the anxiety associated with a cerebral palsy diagnosis and improve satisfaction with the care process for the person diagnosed and their parents or carers. Parents should be given information from diagnosis and throughout the person’s care.

Quality measures

Structure
Evidence of local arrangements to ensure that parents and carers of children and young people with cerebral palsy are provided with up-to-date information on the diagnosis and management of cerebral palsy that is tailored to their needs.
Data source: Local data collection, for example, service protocols.
Process
Proportion of parents and carers of children and young people with cerebral palsy who are given information about the diagnosis and management of cerebral palsy at the point of diagnosis.
Numerator – the number in the denominator whose parents or carers are given information about the diagnosis and management of cerebral palsy.
Denominator – the number of children and young people with cerebral palsy.
Data source: Local data collection, such as the child or young person’s personal folder.
Outcome
Level of parent and carer satisfaction with information they are given about the diagnosis and management of cerebral palsy.
Data source: Local data collection based on feedback from parents and carers of children and young people with cerebral palsy.

What the quality statement means for different audiences

Service providers (such as child development services) ensure that systems are in place to provide up-to-date and tailored information about the diagnosis and management of cerebral palsy to the parents and carers of children and young people with cerebral palsy.
Healthcare professionals (such as paediatricians, nurses, physiotherapists, occupational therapists, ophthalmologists, speech and language therapists, dietitians and psychologists) provide information about the diagnosis and management of cerebral palsy to the parents and carers of children and young people with cerebral palsy.
Commissioners (such as clinical commissioning groups) ensure that services are in place to provide information on the diagnosis and management of cerebral palsy and associated comorbidities to the parents and carers of children and young people with cerebral palsy, and that the information is tailored to their individual needs and learning styles.
Parents and carers of children and young people children with cerebral palsy are given information about the child or young person’s diagnosis, the treatment they will receive and other conditions associated with cerebral palsy.

Source guidance

Cerebral palsy in under 25s: assessment and management (2017) NICE guideline NG62, recommendation 1.6.2

Definition of terms used in this quality statement

Information on diagnosis and management of cerebral palsy
The information provided should cover:
  • diagnosis
  • aetiology
  • prognosis
  • expected developmental progress
  • comorbidities
  • availability of specialist equipment
  • resources available and access to financial advice, respite care, social care and other support for children and young people, and their parents, carers and siblings
  • educational placement (including specialist preschool and early years settings)
  • transition.
[NICE guideline on cerebral palsy in under 25s, recommendation 1.6.2]

Equality and diversity considerations

Parents and carers of children and young people with cerebral palsy should be provided with information that they can easily read and understand themselves, or with support, so they can communicate effectively with health and social care services. The information should be in a format that suits their needs and preferences. It should be accessible to people who do not speak or read English, and should be culturally and age appropriate. Children and young people with cerebral palsy should have access to an interpreter or advocate if needed.
For children and young people with cerebral palsy who have additional needs related to a disability, impairment or sensory loss, information should be provided as set out in NHS England's accessible information standard.

Personal folders for children and young people with cerebral palsy

This quality statement is taken from the cerebral palsy in children and young people quality standard. The quality standard defines clinical best practice in diagnosing, assessing and managing cerebral palsy in children and young people and should be read in full.

Quality statement

Children and young people with cerebral palsy have a personal folder to help them make decisions about how their condition is managed.

Rationale

A personal folder will hold information about the child or young person with cerebral palsy that can be shared with health, social care and education providers to ensure good communication. Having a personal folder can help children and young people with cerebral palsy, their families and carers to take control and make informed decisions about their lives and how their condition is managed. Children and young people should be involved in creating their own folder, which is tailored to their needs and evolves throughout the patient pathway. The personal folder should remain with the child or young person.

Quality measures

Structure
Evidence of a locally defined approach to the development of personal folders for children and young people with cerebral palsy to help them make decisions about how their condition is managed, and systems in place to make staff aware of the approach.
Data source: Local data collection, for example, service protocols.
Process
Proportion of children and young people with cerebral palsy who have a personal folder to help them make decisions about how their condition is managed.
Numerator – the number in the denominator who have a personal folder to help them make decisions about how their condition is managed.
Denominator – the number of children and young people with cerebral palsy.
Data source: Local data collection based on audits of patient care records.
Outcome
Levels of satisfaction of children and young people with cerebral palsy with control over care and daily life.
Data source: Local data collection based on feedback from children and young people with cerebral palsy.

What the quality statement means for different audiences

Service providers (such as health, social care and educational providers) ensure that systems are in place for children and young people with cerebral palsy to have a personal folder that can be shared with family members and carers, and used in health, social care and educational settings.
Health and social care practitioners help children and young people with cerebral palsy and their parents or carers to develop and update a personal folder to help them make decisions about how their condition is managed.
Commissioners (such as clinical commissioning groups) ensure that they commission services that support children and young people with cerebral palsy to be involved in developing a personal folder that is updated throughout the entire care pathway to help them to make decisions about how their condition is managed.
Children and young people with cerebral palsy have a personal file with information that is unique to them. Their care team helps them to put the information together and keep it up to date. The personal file can help children and young people make decisions about the care they would like to have. It can be in an electronic or paper format, and can be shared with everyone who supports the family, including friends, other family members, health professionals, social workers and teachers.

Source guidance

Cerebral palsy in under 25s: assessment and management (2017) NICE guideline NG62, recommendation 1.6.5

Definition of terms used in this quality statement

Personal folder
A personal folder is a file that contains information about the child or young person with cerebral palsy that can be shared with family members and friends, and used in health, social care and education. The file can be in an electronic format, or on paper, whichever is preferred by the child or young person and their family or carers. It could include:
  • early history
  • motor subtype and limb involvement
  • functional abilities
  • interventions
  • medication
  • comorbidities
  • preferred methods of communication
  • any specialist equipment that is used or needed
  • care plans
  • emergency contact details.
[NICE’s guideline on cerebral palsy in under 25s, recommendation 1.6.5]

Equality and diversity considerations

Children and young people with cerebral palsy should be provided with information that they can easily read and understand themselves, or with support, so they can communicate effectively with health and social care services. Information should be in a format that suits their needs and preferences. It should accessible to people who do not speak or read English, and should be culturally and age appropriate. Children and young people with cerebral palsy should have access to an interpreter or advocate if needed.
For children and young people with cerebral palsy who have additional needs related to a disability, impairment or sensory loss, information should be provided as set out in NHS England's accessible information standard.

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Effective interventions library

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Implementation

NICE has produced resources to help implement its guidance on:

Information for the public

NICE has written information for the public on each of the following topics.

Pathway information

Person-centred care

People have the right to be involved in discussions and make informed decisions about their care, as described in your care.
Making decisions using NICE guidelines explains how we use words to show the strength (or certainty) of our recommendations, and has information about prescribing medicines (including off label use), professional guidelines, standards and laws (including on consent and mental capacity), and safeguarding.

Your responsibility

Guidelines

The recommendations in this guideline represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, professionals and practitioners are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or the people using their service. It is not mandatory to apply the recommendations, and the guideline does not override the responsibility to make decisions appropriate to the circumstances of the individual, in consultation with them and their families and carers or guardian.
Local commissioners and providers of healthcare have a responsibility to enable the guideline to be applied when individual professionals and people using services wish to use it. They should do so in the context of local and national priorities for funding and developing services, and in light of their duties to have due regard to the need to eliminate unlawful discrimination, to advance equality of opportunity and to reduce health inequalities. Nothing in this guideline should be interpreted in a way that would be inconsistent with complying with those duties.
Commissioners and providers have a responsibility to promote an environmentally sustainable health and care system and should assess and reduce the environmental impact of implementing NICE recommendations wherever possible.

Technology appraisals

The recommendations in this interactive flowchart represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, health professionals are expected to take these recommendations fully into account, alongside the individual needs, preferences and values of their patients. The application of the recommendations in this interactive flowchart is at the discretion of health professionals and their individual patients and do not override the responsibility of healthcare professionals to make decisions appropriate to the circumstances of the individual patient, in consultation with the patient and/or their carer or guardian.
Commissioners and/or providers have a responsibility to provide the funding required to enable the recommendations to be applied when individual health professionals and their patients wish to use it, in accordance with the NHS Constitution. They should do so in light of their duties to have due regard to the need to eliminate unlawful discrimination, to advance equality of opportunity and to reduce health inequalities.
Commissioners and providers have a responsibility to promote an environmentally sustainable health and care system and should assess and reduce the environmental impact of implementing NICE recommendations wherever possible.

Medical technologies guidance, diagnostics guidance and interventional procedures guidance

The recommendations in this interactive flowchart represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, healthcare professionals are expected to take these recommendations fully into account. However, the interactive flowchart does not override the individual responsibility of healthcare professionals to make decisions appropriate to the circumstances of the individual patient, in consultation with the patient and/or guardian or carer.
Commissioners and/or providers have a responsibility to implement the recommendations, in their local context, in light of their duties to have due regard to the need to eliminate unlawful discrimination, advance equality of opportunity, and foster good relations. Nothing in this interactive flowchart should be interpreted in a way that would be inconsistent with compliance with those duties.
Commissioners and providers have a responsibility to promote an environmentally sustainable health and care system and should assess and reduce the environmental impact of implementing NICE recommendations wherever possible.

Supporting information

Glossary

body measurements that include weight, height, knee height, mid-upper arm circumference, waist circumference, head circumference and skinfold thickness measurements
a person aged 11 years or younger
people aged 11 years or younger
the ability to walk independently in the community without the need for supportive devices such as a walking frame, tripod sticks or crutches
a person aged between 12 and 24 years of age
people aged between 12 and 24 years of age

Paths in this pathway

Pathway created: January 2017 Last updated: October 2017

© NICE 2017. All rights reserved. Subject to Notice of rights.

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