DSA Adult Health Book – We need your help

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This is what we need your help with

In April 2013 we would like to post 250 copies of our easy read health book to adults with Down’s syndrome, families, carers and GPs as part of a pilot project. We want to find out if we need to make any changes to the format and content of the health book. The health book will be accompanied by an evaluation form for participants to fill in. If you would like to take part in the pilot, please email Stuart Mills stuart.mills@downs-syndrome.org.uk with the name and address of the person the health book is to be sent to by 8th March 2013. We will not be sending out any more than 250 copies at this stage so participation will be on a first come first served basis.

We think it is really important to have your feedback about the health book. We want to ensure that we produce a useful tool to improve the health of adults with Down’s syndrome. The 2nd version of the health book, incorporating your feedback, will be mailed to our 3000 adult members with Down’s syndrome in 2014.

This is what we are doing

The health book is the next stage of our awareness raising campaign around Adult Annual Health Checks. The health book will be accompanied by parallel, and more in depth, information for GPs about health problems that are more common in people with Down’s syndrome. The information for GPs will be available at DSA’s website.

We hope that the health hook will give adults with Down’s syndrome a sense of ownership over, and involvement in, their own health care. It should also facilitate improved long term record keeping that will benefit the person with Down’s syndrome, medical practitioners and others who provide support. It is envisaged that the person with Down’s syndrome will fill in some sections of the book and will be the holder of the book. However the primary function of the book will be to guide GPs through the necessary health checks and to signpost further information on specific Down’s syndrome related health conditions. The current draft of the health book has been informed by consultations with GPs, the London Down 2 Earth Group and parents.

The Background

We have known for some time that adults with Down’s syndrome, and people with learning disabilities in general, experience poorer health than the general population and are less likely to be accessing regular health checks or routine screening. Annual health checks were introduced in England in 2009 to address the inequalities in health care experienced by people with learning disabilities. GPs are required to attend training before they can offer annual health checks, and are paid to deliver them. Not all GP practices offer annual health checks, but they should be able to refer you to a centre that will. In 2011 the DSA published a report about our members’ experiences of adult annual health checks. This is what we discovered:

Some people with Down’s syndrome have never had a health check, mostly because they were not aware annual health checks were available. Some health checks carried out took less than 15 minutes. Less than 30% of our sample had both their blood taken and a urine sample checked at their last health check – both basic checks.

You can read the report and about our work to improve our member’s experiences of adult health checks at our website: http://www.downs-syndrome.org.uk/campaigns/annual-health-checks.html