Quality statement 4: Personal folders for children and young people with cerebral palsy

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.