Disability History Month: Health literacy and independence
For Disability History Month, we are shining a light on health literacy and why it matters for disabled people. Our recent audit found that 96% of the 50 documents we checked sat above the national reading age of a nine- to eleven-year-old.
Isha Duraisingam, our Health Equalities Programme Manager, explains: “Health literacy is about people being able to understand health information. It helps them make informed choices and feel more independent. If our content is too hard to read, we take that power away.”
We are now raising awareness across the Trust. Services across all our divisions are using simple tools to rewrite key information with patients. The next step is to help every team build these skills into their daily work.
We sat down with Dilesh Tanna, Patient Representative for CLCH, to discuss his experience.
“There’s still a lot of stigma about neurodiversity in some Asian communities. I live with my grandma. She will say things like ‘you can’t do that’. My dad steps in and says, ‘give him a chance, let him try’. That generation has a different way of seeing things. You can’t change it overnight. It’s about how people see learning disabilities.”
“People get lost in the healthcare system. It feels like there’s nothing that asks us what we need. My parents are my carers. My mum is getting older. At some point I’ll need to manage things myself. So I need to understand how the system works.”
He talked about how hard it can be to make sense of the wider system. This becomes more important as he takes on more of his own healthcare.
Letters are a key part of this. Yet many are difficult to follow. He explained how visual clues help.
“When letters come, I scan them and try to take in what I can. Pictures help. Lots of us need something visual. You see the picture and link it back to the information. Words help, but a picture can say a lot.”
Dilesh was showed two leaflets about podiatry, one was full of text and didn’t have any pictures, and the other was in an Easy Read style, with less words and more visuals.
“I need care for my feet. I’ve got insoles, which is something many people with Down’s syndrome need. If you had an easy read guide, people would understand what that means straight away.”
When information is unclear, trust breaks down fast.
“If I can’t understand it, it goes straight in the shredder.”
So he turns to family for help.
“Most of the time I take the letter to my parents and say, ‘I don’t get this, can you explain it?’”
Simple language makes a major difference. Small changes help people feel more in control.
“When the letter says ‘foot health’ in brackets, it helps. It’s much simpler than ‘podiatry’. If you had pictures next to the terms, it would be clearer. Not everyone knows the technical words. If someone doesn’t know what ‘anaesthetics’ is, how do you explain that? The information has to match the audience.”
He compared two leaflets and felt the Easy Read version worked far better.
“This version is much better. It’s easier to follow because there’s no jargon. It even has the bit about cancelling your appointment, which the other one didn’t. If you add pictures of the hospitals, it will be even clearer.”
Clear information supports real independence. It reduces stress before appointments and gives people the confidence to arrive prepared.
“It helps me understand what will happen and what steps I need to take. My mum comes to all my appointments. When I go on my own, I will value the Easy Read leaflet far more than the standard one. I’ll feel calmer because I’ll know what to expect. I wear my sunflower lanyard so staff know I have a hidden disability. That means they adjust the way they give information.”
He ended with a simple message for us all.
“People with learning disabilities and autism are known about but not spoken about. We need to speak about our experiences more, so we can take action. In healthcare, we need to invite more input from disabled people.”
