It is important to know who has intellectual disabilities in Primary Care. There are ways of identifying someone without embarrassing them. These tips may be helpful from the moment the person with intellectual disabilities contacts the GP. People with intellectual disabilities need to have sufficient time to allow them to speak for themselves.

Wendy Perez (UK)

TIP ONE: Offer the first appointment to someone who has intellectual disabilities.
Some people with intellectual disabilities, because of the nature of their disability, have difficulty with crowds, lack of space or waiting for a long time. They may get distressed and upset other patients.

TIP TWO: Offer double consultation time
Take your time with the person with intellectual disabilities if this is necessary. People with intellectual disabilities need to be encouraged and empowered to speak for themselves. Try and work out how much understanding someone has at your first meeting, and talk to them in a way that they can understand. When you meet a person with intellectual disabilities who is unable to communicate, ask the supporter if they have any special ways in which they communicate. Use these special ways if you can. Also if there are relevant pictures that the person would recognise, use them.

TIP THREE: Speak to the person with intellectual disabilities first, and only then check out with the carer if something is not clear. Be sensitive to the person's feelings and be encouraging.
Try and talk to the person with intellectual disabilities rather than to their carer or supporter. Sometimes the supporter takes over and answers questions for the person with intellectual disabilities. This should not happen; the person with intellectual disabilities should be allowed to answer for themselves unless they ask their supporter for help. It is OK for the person with intellectual disabilities to ask for help.

TIP FOUR: Try asking open questions or changing the question round to check out if you still get the same response.
People with intellectual disabilities may not understand the process of the consultation and therefore have no idea of what to expect or know how to participate. If the person cannot speak, ask the support worker how the person communicates and use their method or equipment.

TIP FIVE: Explain the process of the consultation before you start

  • I need to listen to what you say about why you have come to see me
  • I may need to look at the part of you that hurts
  • I will think about what is the matter with you
  • I will tell you what we will do next

People with intellectual disabilities may, because of previous experiences, be frightened of some of the equipment used in medical examination. Before you do anything to the person with intellectual disabilities, show them what you are going to do. Tell them why you are going to do it, and why you are using the instrument that you are going to use on them. Tell them if you think it might hurt. Then ask the person with intellectual disabilities if they understand what you are going to do.

TIP SIX: Use language that the client understands at a simple level, or use a communication aid, i.e. pictures or symbols.
Many people with intellectual disabilities will want to appear as if they understood what you have said to them and may well be able to repeat back what you said. This does not necessarily mean that they have understood! People with intellectual disabilities may understand common words in unexpected ways: e.g. for many people if you ask about their body, they think of their torso. If you fail, let the supporter answer, but always direct the question to the person with intellectual disabilities. The person should always be present if you are asking questions about them.

TIP SEVEN: Sometimes it may be useful to get information from supporters as well
Sometimes it is good to get information from the supporter as well as the person with intellectual disabilities. You can then see if you get the same information. There are often differences in the information that you get. It is good to hear both points of view.

TIP EIGHT: Always check out that the client has understood by asking them to explain to you in their own words.
People with intellectual disabilities are very unlikely to understand jargon or medical terminology, e.g. "Have your bowels worked today?". Some people will respond to closed questions by saying "yes" because they want to please. Keep explanations simple. Do not relate them to other ideas (like plumbing!) as the person may take this literally.

TIP NINE: When you are talking about time, use events that the person might understand
Some people with intellectual disabilities have little or no understanding of time. This may challenge you to explain things to them in different ways, e.g. explaining how often to take medicines may need more than "twice a day". For example, it is better to say: take this medicine with breakfast and supper.

TIP TEN: Do not assume that the person will understand the connection between the illness and something they have done or something that has happened to them.
People with intellectual disabilities may not make connections between something that has happened and their illness or their body and feeling poorly.

Article published in 2002. Reviewed in 2019, content continues to be relevant.