About our campaign
Clear, understandable information is important to help you make decisions about your health and care and get the most out of services.
The Accessible Information Standard gives disabled people and people with a sensory loss the legal right to get health and social care information they can understand and communications support if they need it. But, is the standard being delivered by services and does it go far enough?
Our campaign ‘Your Care, Your Way’ aims to:
Find out how well health and care services are delivering the accessible information standard.
Make sure that, if the standard covers you, you know your rights.
Find out who else has problems understanding information about their healthcare and needs to be covered by the standard.
Join the campaign and find out about the organisations involved.
Do you need this information in British Sign Language or Easy Read?
Audio description (this will play on YouTube)
Why is clear information important?
We all expect to be involved in decisions about our health, treatment and support.
But medical and healthcare information can be complex, and if you don’t get clear and understandable information, you might not make decisions that are right for you.
Some people find getting clear and understandable information even harder because they have communication needs that require support.
For example, you might need an interpreter or information in format like Braille.
Our survey is now closed.
What rights do you have?
The Accessible Information Standard gives you the right to be given information and communication support when using health and care services.
If you have a disability, impairment or sensory loss, or are a parent or carer of someone who does, you should expect:
To contact and be contacted by services in ways you find accessible
Services to give information and correspondence in formats you can read and understand
To be supported at appointments if needed.
Health and care services to support you to communicate.
I feel like the doctors in the surgery don’t even listen to me and they don’t even give me the time I need to explain my issues with my health. I struggle with understanding and need more time because I have a learning disability and my health is a bit more difficult because of this.
Are people getting accessible information?
We reviewed the stories that 6,200 people shared with us about accessible healthcare information.
While some people experience good communications support from services, we found that many more are not.
People told us about the obstacles that made it hard to access care and use services, leaving them frustrated, concerned about their health and reliant on others.
These issues are often caused because there is not enough awareness of what patients should expect.
Are services addressing accessibility problems?
We ask NHS organisations questions to find how many fully meet the Accessible Information Standard.
139 NHS organisations responded, and we found that:
- Only a third (35%) fully meet the standard.
- Only 53% of NHS services said they ask patients about their accessible information needs when they first contact them.
- Only 36% of NHS organisations had undertaken work in the last three years to find out if they’re meeting the Accessible Information Standard.
How can we fix the issues?
We are asking Government and health and care services to take five steps.
To make sure that more people with a disability, impairment or sensory loss are given information in the way they can understand, we are calling for:
Health and care services to be made more accountable for delivering the standard.
Every health and care service to have an accessibility champion.
Better IT systems so you can tell services your support needs.
People with communication needs to be involved in designing better services.
Compulsory accessibility training for NHS staff.
Should more people have rights?
Some people think the legal rights provided by the Accessible Information Standard should cover more people.
- If your first language is not English, have you had problems getting health and care information translated?
- With one in ten of us estimated to have dyslexia, would some people benefit from a more dyslexia-friendly NHS?
But to help NHS England answer this question, we need more evidence.
That is why we are calling on people to tell us their experience of being given or told health and care information, whether it is good or bad.
You can access our survey in a range of formats.
Our survey is now closed.