General Medical /Health

Overview

Many people with Down syndrome are fit and healthy. However, there are a number of medical problems that occur more frequently in Down syndrome.  

Sometimes these may present in an unusual way. Signs of pain or illness may be missed, or misinterpreted due to an individual’s learning disability. Carers or healthcare staff may assume that signs of illness are actually simply part of their diagnosis of Down Syndrome.  

If not detected early and treated, illness can affect physical health and development. Knowledge of the different patterns of disease is important therefore to help to reduce medically associated complications and so that prompt treatment can be offered. The life expectancy of people with Down syndrome has increased dramatically over the past century, mainly due to improvements in access to cardiac surgery and better treatment of respiratory infections. 

All children and young people with Down syndrome should be under the care of a paediatrician. They should coordinate care between other healthcare professionals, and provide expert advice to carers. Regular health surveillance should be undertaken, with healthcare staff and families working together to prevent avoidable health issues, and spot any which are arising before they cause major issues.  

Transfer of care from the paediatrician to the GP usually occurs at school leaving age, with additional input from specialists when required. In the UK, all those with an intellectual disability are entitled to an annual health check, usually arranged with the GP practice. 

Updated Dr Richard Harrison and Dr Liz Marder 2024

 

DSMIG Guidance

DSMIG evidence-based guidelines for basic essential medical surveillance

Suggested Schedule of Health Checks from the Personal Child Health Record Insert  for Babies born with Down Syndrome DSMIG 2020

Additional Resources

Resources relating to Children

Keeping  Children and Young People with Down Syndrome Healthy  
Anastasia Michael and Liz Marder,  Paediatrics and Child Health ( 2021)

Nottingham Guidelines for Management of Children with Down Syndrome ( 2022)

Resources relating to adults

Down’s Syndrome Association annual health check information 

Information  on annual health checks in primary care for those over 14 , from Down Syndrome Association, England Wales and Northern Ireland 2022

 

Annual health checks – learning disability . For teenagers  and adults who have Down‘s syndrome .
Checklist for GP’s for annual health checks from Down‘s syndrome association/ DSMIG
September 2024

 

Book

Down Syndrome – Current Perspectives (2015)

Edited by Richard Newton , Shiela Puri and Liz Marder

Mackeith Press