Quality standard

Quality statement 3: Information for parents and carers of children and young people with cerebral palsy

Quality statement 3: Information for parents and carers of children and young people with cerebral palsy

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.

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's 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.