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Practice What Your Patient is Thinking

What a patient with a learning disability would like you to know

BMJ 2016; 355 doi: https://doi.org/10.1136/bmj.i5296 (Published 05 October 2016) Cite this as: BMJ 2016;355:i5296
  1. Emily Smith

Emily Smith has Down’s syndrome and is an Expert by Experience at the University of Nottingham. After a visit to an emergency department (A&E), she was referred to her general practitioner. Here she contrasts the interactions she had with the different healthcare professionals

I didn’t want to come and see you because last month I had to go to A&E when I had a funny turn in the town, and the people I saw were rude and talked to me like I was a child.

The doctor in A&E said, had I had breakfast? I said, no, not yet. He didn’t give me time to tell him I was meeting a friend for breakfast afterwards, and he said I was a “silly girl.” I don’t know why. I’m a 26 year old woman.

Sometimes in A&E people with learning disabilities aren’t given anything for pain. Maybe it’s because people don’t listen with their whole self to see the person is in pain. My friends and I do feel pain, it’s just not true that we don’t!

Talk to me

When I was little the doctors always said hello to me first, now I’m a grown up not all of them do. They talk to my carer. I am a person and it’s my body. I know I don’t always talk clearly so you can ask the person who is supporting me for help with what you don’t understand.

I don’t like it when they use upside down language! “Positive” results are bad and “negative” is good, I didn’t know that.

I have been so frightened since that A&E doctor said he was going to refer me to see you. I thought I was in trouble or really poorly. So I brought Eliza with me today who is the learning disability acute liaison nurse, but you were lovely.

I didn’t even know what “refer” meant, but you explained that to me clearly. You told me it was like an introduction, not a mention. You said if you needed to refer me it would be like introducing me to someone who knew that bit of the job and that bit of the body best.

You asked if you could call me by my name and didn’t make me feel silly when I told you I was a bit anxious.

Show me

You smiled, and each time you explained something you had a picture or a model so I knew what was happening in my body.

I felt in charge for a change.

The leaflets you gave me made sense and there were only two of them.

I now know that it’s important not to take my tablets on an empty tummy thanks to you, and I promise to always have breakfast!

You were just brilliant!

The doctor I saw in A&E could really learn from you. I’m glad I’m healthy. Thank you!

What you need to know

  • Talk to me, not my carer, but you can ask my carer for help if you need to

  • It helps when you use pictures to explain what is happening to me and don’t use upside down language

  • My friends and I do feel pain so give us pain relief like you would for someone who doesn’t have a learning disability

Further resources

Footnotes

  • For series information: Rosamund Snow, patient editor, rsnow@bmj.com

  • I thank my colleague Helen Laverty (@helen_laverty), a learning disability nurse lecturer, and Hayley Goleniowska (@DownsSideUp), whose daughter has Down’s syndrome, for their support.

  • Competing interests: I have read and understood BMJ policy on declaration of interests and declare the following: none.

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