• 31May

    Learning how to make health information accessible for people with learning disabilities

    Last week I attended a great training day run by Shaun and Jai from CHANGE, a charity working for equal human rights for people with learning disabilities.

    The session was located in Birmingham and participants had come from far and wide. The morning opened with a discussion about how we had all made our way to the venue, and how we had known where we should go. Being provided with directions and address details in a format we understood, or by using technologies we were able to access, soon emerged as the key themes, setting the tone for the day ahead!

    The Accessible Information Standard

    The aim of the day was to introduce participants to the requirements of the new NHS England Accessible Information Standard (AIS), and support them to think through how their organisation could meet these requirements.

    The AIS applies to people with a learning disability or sensory impairment, and by law organisations must:

    • Ask everyone if they need any communication support (it is key not to make assumptions about who the AIS might apply to).
    • Record what communication support is required.
    • Highlight this information, making it really clear so that it can’t be missed.
    • Share this information within your service, and more widely with consent.
    • Act on this information, and make sure the communication support is met at all points of contact between the service and patient.

    Change have produced a leaflet outlining who the Accessible Information Standard applies to, and the different types of accessible information and communication support that exist. And the AIS documentation produced by NHS England contains a useful glossary section.

    man doctor computer conversationAnyone who provides adult health or social care services that are funded from public money will be required to meet the AIS in full by 31 July.

    But delegates at the event were not only from organisations that directly provide services, and it was soon clear that the implementation of the AIS will have an impact on a wide range of organisations including commissioners and information producers.

    The impact of poor information support

    The day was illustrated with stark examples of poor information support and communication as experienced by CHANGE staff and service users, fantastically role played by Jai and Shaun!

    These examples included:

    • A hospital pharmacist stating they were too busy to explain how some new medication needed to be taken, despite the patient sharing they were confused and unable to understand the medicines leaflet.
    • A key diabetes check appointment being missed, as the notification letter used a font that was too small with the words appearing ‘like ants on the page’.
    • A GP providing information on improving diet to a patient diagnosed with type 2 diabetes without checking that the information had been understood, or that the pile of leaflets handed out at the end of the appointment were accessible.

    Confused man with learning disabilitiesCHANGE shared findings from their service user engagement work, including that a lack of information is a major barrier to people with learning disabilities being included in their community, and how 2 out of 5 people with social, behavioural or learning disabilities have felt treated like a nuisance.

    And it became increasingly clear of the importance of creating all health information and communication materials in accessible formats as default, rather than as an optional extra or ‘nice to have’.

    Shaun shared that anxiety, stress and a lack of confidence compound communication needs, making it even more challenging for people with learning disabilities to ask questions or understand the information they are being provided.

    Health passports were identified as a useful intervention that supported people with learning disabilities to more easily share important information about their health.

    Participants also shared some of the approaches they already used to make their services and information more accessible: including a community dental service in Coventry who sent patients a dental smell box, and a video talking patient’s through each step involved in attending the service for an x-ray.

    Making information more accessible

    For the final session of the day we worked in small groups to translate a piece of information on housing into a resource that was more accessible for people with learning disabilities. And our group found to do this well, takes time and expertise!

    The top tips from CHANGE were to:

    • Highlight the key facts you need to convey.
    • Include only these main points.
    • Use simple words and examples from everyday life.
    • Break up information into small chunks.
    • Make sure hard words are explained.
    • Use pictures to aid understanding, that fully reflect that point or sentence.

    We were advised to avoid statistics (unless they were key to the information or communication), or including different versions of the same idea.

    The most important point was to INVOLVE people with learning disabilities in creating the information or communication materials, as it is only through working with service users can you be confident how understandable your resources are.

    Thanks Shaun, Jai and CHANGE for a really interesting and useful session!

    You can find out more about CHANGE on their website.

    You can find out more about the Accessible Information Standard on the NHS England website.

    At the end of June, PIF will be launching an online forum to support people and organisations who are implementing the Accessible Information Standard. This project is being funded by NHS England, and if you have any questions about the AIS please share them with us by emailing claire.murray@pifonline.org.uk. We will include these within the new forum and try to find answers to your questions!