When should I refer a patient with Down's Syndrome to a specialist for further assessment or intervention?

For a patient with Down's syndrome, specific considerations for referral to a specialist include:

• Dementia Assessment: During annual health checks for adults with Down's syndrome, you should ask them and their family members, carers, or care workers about any changes that might suggest the need for a dementia assessment ³. This includes changes in behaviour, loss of skills (including self-care), or an increased need for prompting in recent months ³.

General referral criteria for individuals with a suspected learning disability (which includes Down's syndrome) or associated conditions are:

• Local Learning Disability Support Team: If a learning disability is suspected after initial assessment, refer the person to the local learning disability support team for diagnosis confirmation and management ¹. This team may include various specialists such as psychologists, psychiatrists, speech and language therapists, and occupational therapists, depending on local service provision ¹.
• Clinical Psychologist: Consider referral if the person requires assessment for issues like accessing benefits, determining mental capacity, deprivation of liberty safeguards, parenting assessments, or fitness to plead within the criminal justice system ¹.
• Specialist Mental Health Services: Refer if there is associated behaviour that challenges and/or a mental health problem that cannot be managed in primary care ¹.
• Clinical Genetics Specialist: Consider referral if a chromosomal or genetic anomaly is suspected ¹. Referral is also advised if teratogenic exposure is suspected or confirmed, to rule out an underlying genetic cause ¹.
• Local Child or Adult Safeguarding Team: Refer if there are concerns about possible exploitation, abuse, or neglect, or if the person is in contact with the criminal justice system ¹.
• Multidisciplinary Autism Team / Neurodevelopmental Paediatrician / Child and Adolescent Psychiatrist: If autism is suspected, arrange referral if a child under 3 years has regression of language or social developmental milestones, or if a child or young person of any age has persistent and significant limitations to daily living activities due to features suggestive of autism ². Consider referral if there are moderate limitations to daily living activities caused by features suggestive of autism, especially with significant family/carer concerns or risk factors for autism ². Refer to a neurodevelopmental paediatrician or paediatric neurologist if a child over 3 years has regression in language developmental milestones, or if a child of any age has regression in motor developmental milestones ².