Support to understand information
Understanding health information
Some people might need support to get the information they need, or to understand it.
For example, you may:
- not understand or speak English very well
- have a physical disability that affects your hearing, sight or speech
- have a learning disability
- have difficulties with reading.
Or you might find that your healthcare team does not understand your culture, and how best to communicate with you.
When talking to your GP or cancer doctor, it can help to have someone with you. They can help you to make sense of the information later.
You should always be able to have someone with you at your hospital appointments. This might be a carer, family member, friend or support worker. If you do not have anyone, your healthcare team should be able to arrange for a social worker or volunteer to be with you.
Other people, such as a translator, can also be present. This will depend on your needs.
Related pages
Booklets and resources
Language or culture
You might have difficulties in understanding information or getting your GP or cancer doctor to understand your concerns for different reasons.
This could be because English is not your first language. Or there may be things to do with your culture that affect how you feel about your treatment or care.
To give you the best care and treatment, your healthcare team should:
- try to understand anything that might affect your decisions about your treatment and care
- make sure you are not disadvantaged, whatever your ethnicity or culture
- make sure that your culture or language do not prevent good communication and understanding between you and your healthcare team.
Translators and interpreters can help you get the information you need to understand your treatment.
If you do not speak or understand English well
The NHS must make sure that anyone who uses their services can get all the information they need. If language is an issue, they should offer:
- a professional interpreter in the language you choose
- translation in the written language you choose.
These services are free.
Interpreters
The NHS should always use professional interpreters, rather than your family or friends. This means your family can focus on being there to support you to make a decision. It also means there is less risk of getting important information wrong.
Interpreters translate everything your cancer doctor says to you, and everything you want to say back. If you would like an interpreter, tell the hospital as soon as possible.
You can also speak to the Macmillan Support Line team in your language using our interpreter service.
Call us free on 0808 808 00 00 to tell us, in English, the language you or someone that you are calling in support of needs.
Translated health information
Your healthcare team should provide you with written information about health and care services. This is often a series of leaflets, and should be in a language and format that you understand. Some hospitals may provide cancer information in different languages.
If translated information is not available in your preferred language, the NHS should provide it free. These websites provide a selection of health information in different languages:
- nhsinform.scot/translations
- nhs.uk/about-us/health-information-in-other-languages
- healthinfotranslations.org.
Macmillan has a range of information in languages other than English. This includes information about:
- different cancer types
- being diagnosed
- cancer treatment
- side effects.
Related pages
If you have a physical or learning disability
If you have a physical disability, learning disability or neurodivergence, you might find it harder to have the conversations you need with your healthcare team.
They should communicate with you in the most effective way to give you the information you need.
The NHS has to make sure that disabled people can use health services as easily as people without disabilities. This is called making reasonable adjustments.
It could include:
- making sure there are no physical barriers for people using wheelchairs or with mobility issues
- longer appointments to give you more time with a cancer doctor or specialist nurse
- offering an appointment at the beginning or end of the day, or a quiet place to wait, if activity and noise makes you more anxious
- providing easy read information or simple pictures to help you to understand treatments and side effects.
You can ask for information about your reasonable adjustments to be recorded in your medical notes or another document.
If you have a learning difficulty like dyslexia, or find printed text difficult to read, Macmillan provides:
- audiobooks
- easy read information – this uses simple words and pictures on about cancer symptoms, diagnosis, treatment, and end of life.
If you are deaf or blind
If you are deaf or blind, your healthcare team should make reasonable adjustments to help you get the same care as anyone else. This can also include some people who have low vision or are hard of hearing. Your healthcare team should make sure you:
- get information in formats you can read and understand - for example, audio, Braille, easy read or large print
- have a communication professional at your appointments - for example, a British Sign Language (BSL) interpreter
- can contact them using email or text message if you find this easier.
If you use BSL, you can email us or chat online to arrange a free call to the Macmillan support line 0808 808 00 00 with a BSL interpreter. Or a hearing family member or friend can call the support line to organise this. Find out more about using the Macmillan Support line with BSL.
We also have a small range of videos about cancer using BSL. You can watch them on YouTube.
Our easy read booklets can also be useful for people who use BSL. You can download a PDF or order a printed booklet.
We also have a new service in partnership with Self Help UK to improve access to cancer information and support for Deaf people.
For people who are blind or have low vision, we produce information:
- in Braille
- in large print
- as audiobooks.
If you have speech problems
If you have problems with your speech, you may use different types of communication aids or BSL. Let the hospital know what your needs are, so they can support you with the type of communication aid you are most comfortable using.
Organisations that can support you include:
Booklets and resources
If you need help to get your views understood
If you find it hard to get your healthcare team to understand your views on treatment, someone might be able to speak on your behalf. These people are called advocates. They are not employed by the NHS.
They can help you to:
- talk about how you feel about your treatment and to make decisions
- get your views and wishes about treatment understood by your team.
An advocate can also be a friend or family member you take with you to important meetings. You might want them there for moral support and to get your views understood.
Depending on where you live in the UK, different organisations can give help and advice.
- NHS guidance on advocates
- Care Information Scotland
- mygov.scot guidance
- Scottish Independent Advocacy Alliance
- Advocacy Support Cymru
- Llais – Your voice in health and social care in Wales.
We also have information on things you can do if you are unhappy with your care.
About our information
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References
Below is a sample of the sources used in our Making treatment decisions information. If you would like more information about the sources we use, please contact us at cancerinformationteam@macmillan.org.uk
NHS England. Guidance for commissioners: Interpreting and Translation Services in Primary Care. 2018. Available from https://www.england.nhs.uk/wp-content/uploads/2018/09/guidance-for-commissioners-interpreting-and-translation-services-in-primary-care.pdf
NHS Scotland. The Charter of Patient Rights and Responsibilities. Revised June 2019. Available from www.gov.scot (accessed June 2022).
The National institute of health US (NIH). Cultural Respect. Last reviewed 2021. Available from https://www.nih.gov/institutes-nih/nih-office-director/office-communications-public-liaison/clear-communication/cultural-respect. Last accessed January 2023.
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This information has been written, revised and edited by Macmillan Cancer Support’s Cancer Information Development team. It has been approved by members of Macmillan’s Centre of Clinical Expertise.
Our cancer information has been awarded the PIF TICK. Created by the Patient Information Forum, this quality mark shows we meet PIF’s 10 criteria for trustworthy health information.
The language we use
We want everyone affected by cancer to feel our information is written for them.
We want our information to be as clear as possible. To do this, we try to:
- use plain English
- explain medical words
- use short sentences
- use illustrations to explain text
- structure the information clearly
- make sure important points are clear.
We use gender-inclusive language and talk to our readers as ‘you’ so that everyone feels included. Where clinically necessary we use the terms ‘men’ and ‘women’ or ‘male’ and ‘female’. For example, we do so when talking about parts of the body or mentioning statistics or research about who is affected.
You can read more about how we produce our information here.
Date reviewed
Our cancer information meets the PIF TICK quality mark.
This means it is easy to use, up-to-date and based on the latest evidence. Learn more about how we produce our information.
How we can help