Quality standard
Quality statement 5: Management plan
Quality statement 5: Management plan
Children and young people with a diagnosis of fetal alcohol spectrum disorder (FASD) have a management plan to address their needs.
Rationale
An individualised management plan sets out the intervention and support needs identified during assessment and diagnosis of FASD. The plan signposts the child or young person with FASD and their family to resources and services. It covers the basic and immediate needs of the child or young person after assessment as well as their long-term needs. Because FASD has lifelong effects, a staged management plan may be needed to anticipate upcoming problems at planned intervals and revision should be considered at all transition stages in the person's life. A management plan also helps people with FASD, their families, carers and service providers to understand and address the associated challenges. The plan helps to coordinate care across a range of healthcare professionals, as well as education and social services, and improves outcomes.
Quality measures
The following measures can be used to assess the quality of care or service provision specified in the statement. They are examples of how the statement can be measured and can be adapted and used flexibly.
Structure
a) Evidence of local frameworks for managing FASD that ensure healthcare professionals coordinate care across disciplines and organisations.
Data source: No routinely collected national data for this measure has been identified. Data can be collected from information recorded locally by healthcare professionals and provider organisations, for example, from service specifications and service protocols.
b) Evidence of local arrangements for communicating and sharing management plans between providers of health, education and social services.
Data source: No routinely collected national data for this measure has been identified. Data can be collected from information recorded locally by healthcare professionals and provider organisations, for example, from service protocols.
Process
Proportion of children and young people diagnosed with FASD who have a management plan.
Numerator – the number in the denominator who have a management plan.
Denominator – the number of children and young people diagnosed with FASD.
Data source: No routinely collected national data for this measure has been identified. Data can be collected from information recorded locally by healthcare professionals and provider organisations, for example, from local audits of patient records. The Scottish Intercollegiate Guidelines Network's sample FASD management plan has been produced to support the source guideline.
Outcome
Health-related quality of life for people diagnosed with FASD.
Data source: No routinely collected national data for this measure has been identified. Data can be collected from information recorded locally by healthcare professionals and provider organisations, for example, a survey of people with FASD using a quality of life questionnaire.
What the quality statement means for different audiences
Service providers (such as community paediatric services, child development centres, and child and adolescent mental health services) have training programmes for healthcare professionals on managing FASD. They establish frameworks for managing FASD that allow healthcare professionals to work across disciplines and organisations, and they provide information on the effects of FASD to education and social services.
Healthcare professionals (such as paediatricians, psychologists and psychiatrists) develop a management plan for children and young people diagnosed with FASD. They discuss with the children, young people and their families their priorities and goals to be included in the plan, and who the plan should be shared with. They identify interventions and support to address the particular needs of the child or young person, including further referrals and education support.
Commissioners (such as clinical commissioning groups, integrated care systems and NHS England) ensure that they commission services that provide a management plan and support for children and young people diagnosed with FASD.
Children and young people with FASD and their parents or carers develop a management plan with the team who carried out the assessments before their diagnosis. They discuss what the plan should cover, their priorities and goals, and who the plan should be shared with.
Source guidance
Children and young people exposed prenatally to alcohol. Scottish Intercollegiate Guidelines Network guideline SIGN 156 (2019), recommendation 3.6.2 (page 24), 4.1.1 (page 27) and 4.1.2 (pages 27 to 28)