Better Health Care for Adults with Down's Syndrome

Photo: Cover of the health book

The easy read health book for adults with Down's syndrome can be taken to annual health checks and to general appointments; © Down's Syndrome Association

The Down's Syndrome Association's annual awareness week campaign aim is to improve health care for adults with Down's syndrome. People with learning disabilities have poorer health than the general population, yet are less likely to access regular health checks and routine screening.

People with Down's syndrome are predisposed to certain medical conditions, including cardiac diseases, thyroid disorders, hearing impairments, visual problems, coeliac disease and Alzheimer's disease, most of which are treatable. If left untreated, these conditions can cause secondary complications and seriously affect the overall well-being of the individual, as well as resulting in unnecessary costs, which may be avoided.

In 2008, Annual Health Checks were introduced to improve healthcare for people with learning disabilities as part of a direct enhanced service (DES). The Down's Syndrome Association surveyed their members to find out about their experiences of adult annual health checks.

The results of the survey found that uptake of annual health checks was patchy, with some of our members not knowing of their existence.

• 15 percent had never had an annual health check Health checks were not being conducted in line with official guidance with basic checks that are critical for people with Down's syndrome being missed.
• Less than 30 percent had both a blood and urine sample taken.
• Not everyone who had a health check was given sufficient time for the check to be carried out thoroughly.
• 22 percent of checks took less than 15 minutes – GP guidelines say people with learning disabilities should have two half hour sessions.

Following on from the survey they began to think of ways to increase the uptake of adult annual health checks and to improve the experience of adults with Down's syndrome having health checks.

They have produced an easy read health book for adults with Down's syndrome to take to their annual health check and to general appointments. The Health Book is being sent to all adult members with Down's syndrome on Monday 17th March 2014.

A rolling programme of delivery will mean that as their members with Down's syndrome turn 18 they will receive their Health Book as part of the transition to adult hood. We are encouraging our adult members to take ownership of their own health with support from their carers.

The Down's Syndrome Association have produced an area on our website specially for GP's to access clear up-to-date information on various health conditions that are significant to people with Down's syndrome – The information on the website can be used in conjunction with the Health Book.; Source: Down's Syndrome Association

More about the Down's Syndrome Association at: