Quality statement 4: Support for carers

Quality statement

Parents and carers of children and young people newly diagnosed with bipolar disorder, psychosis or schizophrenia are given information about carer‑focused education and support.

Rationale

Carer‑focused education and support enhances engagement and reduces carer burden and psychological distress, and may improve the carer's quality of life. As part of the initial process of assessment and engagement, carer‑focused education and support can also help carers of children and young people with bipolar disorder, psychosis or schizophrenia to be able to identify and monitor symptoms of concern.

Quality measures

Structure

Evidence of local arrangements to ensure that parents and carers of children and young people newly diagnosed with bipolar disorder, psychosis or schizophrenia are given information about carer‑focused education and support.

Data source: Local data collection.

Process

Proportion of children and young people newly diagnosed with bipolar disorder, psychosis or schizophrenia whose parents or carers receive information about carer‑focused education and support.

Numerator – the number in the denominator whose parents or carers receive information about carer‑focused education and support.

Denominator – the number of children and young people newly diagnosed with bipolar disorder, psychosis or schizophrenia.

Data source: Local data collection.

Outcome

a) Satisfaction of parents and carers of children and young people newly diagnosed with bipolar disorder, psychosis or schizophrenia with the information and support provided to meet their own needs.

Data source: Local data collection.

b) Quality of life for parents and carers of children and young people with bipolar disorder, psychosis or schizophrenia.

Data source: Local data collection.

What the quality statement means for service providers, health and social care practitioners, and commissioners

Service providers (such as GP surgeries, community health services, child and adolescent mental health services and early intervention in psychosis services) ensure that processes are in place for parents or carers of children and young people newly diagnosed with bipolar disorder, psychosis or schizophrenia to be given information and encouragement to participate in carer‑focused education and support.

Health and social care practitioners (such as psychologists, social workers and GPs) give parents or carers of children and young people newly diagnosed with bipolar disorder, psychosis or schizophrenia information about carer‑focused education and support, and encourage them to participate.

Commissioners (clinical commissioning groups and NHS England) ensure that carer‑focused education and support is available, and that appropriate referral pathways are in place for parents or carers of children and young people newly diagnosed with bipolar disorder, psychosis or schizophrenia.

What the quality statement means for children, young people, parents and carers

Parents or carers of children and young people newly diagnosed with bipolar disorder, psychosis or schizophrenia are given information about education and support. This can help carers to cope by improving their understanding of the condition and treatments for it, and giving them the opportunity to discuss their experiences with others.

Source guidance

Definitions of terms used in this quality statement

Carer‑focused education and support

This will include information about support groups and education programmes available locally, including those provided by the third sector. Support groups and education programmes will provide information, mutual support and open discussion to carers through voluntary participation. Support groups and education programmes should be available as needed and offer a positive message about recovery.

[Adapted from Bipolar disorder (NICE guideline CG185) recommendation 1.1.18 and Psychosis and schizophrenia in children and young people (NICE guideline CG155) recommendation 1.1.14]

Equality and diversity considerations

If a person does not have access to specialist training or support near their home, and has difficulty travelling long distances (because of the financial cost or other reasons), they may need additional support.

Equality of language and capability in training carers needs to be considered.