Better Health Care for Adults with Down’s Syndrome

Down’s Syndrome Awareness Week 17 – 23 March

Better Health Care for Adults with Down’s syndrome –

Helping adults with Down’s syndrome stay in control of their health

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 our 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% 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% 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% of checks took less than 15 minutes – GP guidelines say people with learning disabilities should have two half hour sessions

Following on from our survey we 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.

We 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 our adult members with Down’s syndrome on Monday 17th March 2014.

A rolling programme of delivery will mean that as our 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.

We are offering support to GP’s

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.

We are engaging with the Government on Tuesday 18th March, we will launch the Health Book at a Parliamentary Reception sponsored by Dr Hwyel Francis,Chair for Down’s syndrome All Party Parliamentary Group.  The reception will be attended by interested members of both House of Parliament and officials from the Health department.  They will be joined by GP’s, people with Down’s syndrome, carers and organisations involved in providing support for people with the condition.

During the reception guests hear from Professor Tony Holland who will speak about the research behind the DSA’s Health Book, and to meet parent member and Patron for the Down’s syndrome Association Damon Hill OBE.

What have people with Down’s syndrome said about the Health Book during our pilot test?

Sarah aged 32 said,

“It helps me and my mum remember things and makes me more confident and independent because I can show the doctor my book and she talks to me then and not my mum.”

Dan aged, 26 said,

“I wouldn’t have had an Annual Health Check if it wasn’t suggested in the Health Book.  Now my GP says I will have one every year.  The blood test showed I was needed B12 injections.”

Awareness Week Call to action –

This letter tells them about our Annual Health Check campaign, offering them support and resources on annual health checks for adults with Down’s syndrome.

During awareness week we want to reach out to the “hidden” adult population of people with Down’s syndrome in the community.

  • Membership for adults with Down’s syndrome is FREE.

If you work for/with, provide care for or if you are family/friend of an adult with Down’s syndrome make sure they get their Health Book. Visit the DSA website and sign up them up for FREE adult membership.