Accessible Information and Healthcare: Thoughts and advice from a person with a learning disability

Shaun Webster MBE is an International Project Worker at CHANGE and has delivered training worldwide. He is a role model for co-working and co-production.

In this blog Shaun shares his personal experience of accessible information in healthcare and how he is working with C4CC.

My personal experience

When I joined the local doctor’s, they used to send me appointment letters. I didn’t understand the letters and used to miss my appointments. The writing was in small lettering, on white paper, with no spacing between the lines. It would make me feel quite sick – it was like looking at ants on a page. This is because of my dyslexia and learning disability. I told the receptionist I would be able to read documents if they were printed on pale green paper, in bigger fonts and 1.5 gaps. They didn’t take this information seriously. They didn’t seem to understand the effects of my learning disability. I felt like it took my independence away.

This was very important information about my health and wellbeing which I could not understand and this could have affected my life in a very serious way. After two years of this situation, new management took over the surgery. They had a different approach and attitude to my disability. They started to think out of the box to find solutions. We talked about different options and finally decided to use text messages to remind me of my appointments and the reason for going. This worked very well for me – now they will even ring me to remind me of my appointment. This helps as I have short-term memory issues, so two reminders is better.

Here are some other ways health services can be more accessible:

  • To help me remember what medication I take, it would help to have access to Easy Read documents with pictures of the types of medication.
  • Having pictures of the doctors could help me recognize the doctor I have seen, as I am good with people’s faces.
  • A lot of people with learning disabilities find it difficult to get the information they need in a 5-10 minute appointment. Doctors should think about giving them longer appointments.
  • Prescriptions are written in small letters and doctors and chemists do not explain enough about the side effects of the medication and how often you should take them. Easy Read prescriptions would be better.

Important things to remember about accessible information

  1. Everybody is different

Find out when someone joins a surgery what type of support and communication they need. Ask them at the beginning rather than assuming what the solution is. You might want to invite a support worker, family member or advocate to the first meeting.

For people with learning disabilities Easy Read is often used for documents.

  1. Use jargon-free language

Professionals need to talk in plain English otherwise people with learning disabilities will find it hard to understand. It is important to always double check that the patient has understood the information correctly.

People with higher support needs might need an advocacy worker or support worker to help them understand their condition and their choices. However, it is important that professionals keep talking to the patient, and make eye contact with them, rather than exclude the patient from the conversation!

How is good accessible information made?

Always work with people with learning disabilities from the beginning rather than at the end of the process.

At CHANGE, we  make accessible information by combining the life experience of people with learning disabilities with the skills of designers. Everybody works together from the beginning to the end of the making of the document to decide if the words and pictures are understandable and fit together. This process means we don’t go in the wrong direction.

Why is it important to have accessible information in organisations and services?

If accessible information is not provided to people with learning disabilities, they will feel not included and not equal.

However, if accessible information is available, the person will feel more confident, empowered, and have a voice. This will allow organisations and services to break barriers and change attitudes.

If I had accessible information from the start, I would have made it to my appointments, been more independent, and it would have saved time and money spent on letters that were not useful to me.

On a bigger scale, accessible information can help anybody who finds reading and writing hard, not just people with learning disabilities e.g. people who do not have English as a first language.

I am looking forward to working with C4CC to break down barriers and change peoples’ attitudes by advising and delivering training on accessible information.

A note from C4CC:

The C4CC hub-team was recently given easy-read training by Shaun and his colleagues at Change. We found this invaluable in enabling us to create our own easy-read documents and reaffirmed our belief that organisations can always learn more by speaking with and working together with people who have lived experience.

If you are interested in creating easy-read documents of your publications, or would like to know more about the training offered, get in touch with Change on info@changepeople.org or click here.

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