Quality standard

Quality statement 3: Referral for assessment

Quality statement 3: Referral for assessment

Quality statement

Children and young people with probable prenatal alcohol exposure and significant physical, developmental or behavioural difficulties are referred for assessment.

Rationale

When children and young people present with developmental problems, prenatal alcohol exposure is often not considered as a possible cause, especially if they do not have the characteristic facial features of prenatal alcohol exposure. This results in inconsistency in referring children and in the assessments they are offered. Referral for assessment can lead to different investigations and a range of outcomes including diagnosis of fetal alcohol spectrum disorder (FASD) or another neurodevelopmental disorder, or identification of an impairment not associated with any specific diagnosis.

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 pathways that refer children and young people with probable prenatal alcohol exposure to a healthcare professional with additional training in 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 service specifications, NHS trust directories of services and clinical commissioning group pathways.

b) Evidence of local arrangements to increase awareness of FASD among healthcare professionals.

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 staff training programmes and learning resources directories.

c) Evidence of local services with healthcare professionals who have additional training in 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 service specifications, NHS trust directories of services and clinical commissioning group pathways.

Process

Proportion of children and young people with probable prenatal alcohol exposure and significant physical, developmental or behavioural difficulties referred for assessment.

Numerator – the number in the denominator referred for assessment.

Denominator – the number of children and young people with probable prenatal alcohol exposure and significant physical, developmental or behavioural difficulties.

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.

Outcome

a) Average time to diagnosis of 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.

b) Diagnosis rates for 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.

What the quality statement means for different audiences

Service providers (such as primary care services, community paediatric services, child development centres, and child and adolescent mental health services) provide training in FASD to healthcare professionals. Primary care services give training to GPs to raise awareness of prenatal alcohol exposure as a possible cause of neurodevelopmental disorders. Community paediatric services, child development centres, and child and adolescent mental health services have training programmes for healthcare professionals on assessing and diagnosing FASD. They establish multidisciplinary teams and multidisciplinary approaches, and develop referral pathways for assessment.

Healthcare and education professionals (such as GPs, special educational needs coordinators, school nurses and health visitors) refer children and young people with significant physical, developmental or behavioural difficulties and probable prenatal alcohol exposure for an assessment that considers prenatal alcohol exposure as a possible cause. Referral is to community paediatric services, child development centres or child and adolescent mental health services for assessment by a healthcare professional with additional training in FASD. They discuss the need for referral with sensitivity, recognising the need to avoid anxiety and stigma.

Commissioners (such as clinical commissioning groups, integrated care systems and NHS England) commission services that consider prenatal alcohol exposure as a possible cause of neurodevelopmental disorders when assessing children and young people with significant physical, developmental or behavioural difficulties. They develop pathways for referring children and young people to healthcare professionals with additional training in FASD.

Children and young people with significant physical, developmental or behavioural problems that affect their daily activities who may have been exposed to alcohol before birth are referred for an assessment by a healthcare professional with additional training in FASD.

Definitions of terms used in this quality statement

Probable prenatal alcohol exposure

This can be based on information suggesting it is likely there has been alcohol exposure during pregnancy, such as:

  • reliable clinical observation

  • self-report or report by a reliable source

  • medical records documenting positive blood alcohol concentrations

  • treatment for alcohol-related problems.

The presence of all 3 facial sentinel features (short palpebral fissures, smooth philtrum and thin upper lip) has high specificity for prenatal alcohol exposure and FASD which means that confirmation of alcohol exposure is not needed when all 3 are present. [Adapted from Scottish Intercollegiate Guidelines Network guideline on children and young people exposed prenatally to alcohol, recommendations 2.1.1 (page 11) and 3.1.1 (page 15)]

Significant physical, developmental or behavioural difficulties

Physical, behavioural and neurodevelopmental difficulties associated with FASD include:

  • abnormalities in how the brain works, which can show up in different ways, such as problems with learning, attention, memory or language, difficulty with abstract concepts, poor problem-solving skills, difficulty in learning from consequences and confused social skills

  • physical effects such as a smaller head circumference, damage to the structure of the brain, heart or kidney problems, vision or hearing impairment and characteristic facial features.

Significant indicates that the difficulties are disrupting the ability of the child, young person or their family to function and carry out activities of daily living. [Adapted from Scottish Intercollegiate Guidelines Network guideline on children and young people exposed prenatally to alcohol, supporting material (information on FASD) and expert opinion]

Assessment

A process which considers prenatal alcohol exposure as a cause of possible neurodevelopmental disorder. It includes a review of family, social and medical history and a complete physical examination. [Adapted from Scottish Intercollegiate Guidelines Network guideline on children and young people exposed prenatally to alcohol, recommendations 2.1.4 (page 14) and 3.2 (page 17)]