Cancer information for people with learning disabilities

2 minute read time.

It’s awful going in to have hospital treatment and not knowing what is going to happen to you, not knowing makes us feel more nervous. When you have cancer, it’s scary and if you don’t know what’s going to happen to you, you feel worried. Knowing that these accessible cancer books are here makes me feel supported

Catherine Carter – Trainer with learning disabilities at CHANGE

There are around 985,000 people in England living with learning disabilities.1 That’s 2% of the general population. And yet, it can sometimes be really difficult for this audience to find accessible health information.

It’s hard enough being told you have cancer and trying to understand all the treatment options and possible implications. For people with learning disabilities, the struggle to understand is even more difficult, especially when the information provided is complex.

It’s vital that people with learning disabilities have access to the information that’s right for them, so they can understand their condition and what’s happening.

At Macmillan, we’re trying to reach more people with learning disabilities through our Easy Read patient information. This is part of our vision to reach everyone affected by cancer by 2030.  

Easy Read booklets about cancer

We distribute a range of Easy Read booklets about cancer for people with learning disabilities. You can order these for free from our be.Macmillan website. There are three different booklets:

  • Symptoms, screening and staying healthy
  • Diagnosis and treatment
  • Palliative care, end of life care and bereavement


And there are two different versions of each booklet – one for the person with learning disabilities, and one for the carer of someone with learning disabilities.

These award-winning booklets are produced by CHANGE, a national human rights organisation led by disabled people. It produces Easy Read information for people with learning disabilities using simple language and images.

Easy Read information is useful for other audiences too – people with low literacy levels, who speak English as a second language, or who have sight or hearing problems often also benefit from Easy Read.

Other accessible information from Macmillan

We’re always trying to make our range of information as accessible as possible for everyone affected by cancer. That’s why we also produce other formats and languages.

Audiobooks
We have audiobooks about different cancer types, tests and treatments. You can order these for free on our be.Macmillan website.

Translated information
We’ve produced translations of some of our most commonly requested information in Bengali, Gujarati, Hindi, Punjabi, Urdu, Chinese, Polish, Russian and Welsh.

British Sign Language cancer information videos
We’ve produced some of our videos in British Sign Language.

Braille and large print
We can produce any of our cancer information in Braille or large print on demand. Just email us at cancerinformationteam@macmillan.org.uk to make a request.

We want your feedback

We’re keen to know what you think about our accessible information. Please email us at cancerinformationteam@macmillan.org.uk if you have any ideas about how we can improve it to reach even more people affected by cancer.

Ideas for blog posts? Let us know.
Comments? Feel free to add them below (you need to be logged in). If you can't see the comment box, click on this blog's title at the top.
Keep in touch Follow Macmillan’s cancer information team on Twitter @mac_cancerinfo 

Sources
[1] British Institute for Learning difficulties. Learning difficulties http://www.bild.org.uk/information/factsheets/

Anonymous
  • FormerMember
    FormerMember

    It's good you're producing this material, but is there a reason why one can't download the Easy Read booklets from your website (and need to register with be.macmillan to order)?  I appreciate that one can order print copies, but (aside from putting a barrier in place to getting the information) some disabled people find information in electronic format more accessible.

  • FormerMember
    FormerMember

    Hello ground,

    Thank you for your comment. We are currently looking into creating these Easy Read booklets as downloadable PDFs, and we’re talking to the organisation who produced them about this. We’re keen to ensure people are able to access our Easy Read content in a format that suits them.  

    In terms of registering for Be.mac, the reason you need to register is to give your address for delivery of anything you order. It's also very useful for us to know who's ordering our information - people at home, health professionals, other Macmillan staff. And now, the new 'My Macmillan' account pulls together your Be.mac account and your Online Community account, so everything's in one place and it's easier for people to switch between the two sites using the top left of the screen.

    Hope this helps,

    Abi

  • FormerMember
    FormerMember

    It's good to see Macmillan reaching out to ever more people.

    I picked up relevant Mac booklets at the cancer centre where I was treated, and they also had books for children whose parents had cancer. I'm sure this will be the place where people with learning difficulties will be most likely to pick them up.

    Otherwise the Be.mac source will allow their carers and supporters to obtain booklets for them if they can't do it themselves.

    Blind people have screen readers so ebooks will be good for them too.

    Well done!

    Colin