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 NICE NG54. This includes changes in behaviour, loss of skills (including self-care), or an increased need for prompting in recent months NICE NG54.

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 NICE CKS. This team may include various specialists such as psychologists, psychiatrists, speech and language therapists, and occupational therapists, depending on local service provision NICE CKS.
• 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 NICE CKS.
• 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 NICE CKS.
• Clinical Genetics Specialist: Consider referral if a chromosomal or genetic anomaly is suspected NICE CKS. Referral is also advised if teratogenic exposure is suspected or confirmed, to rule out an underlying genetic cause NICE CKS.
• 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 NICE CKS.
• 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 NICE CKS. 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 NICE CKS. 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 NICE CKS.