Resources about cancer for people with learning disabilities
There are leaflets, books, websites and videos about cancer for people with learning disabilities. They cover issues including signs of cancer, going to the doctors, checking for cancers and dealing with bereavement.
It can be very difficult for people with learning disabilities to find suitable information about cancer. Books written for the general adult population can be difficult for them to follow and there isn’t a lot else available.
These books and leaflets use colour pictures making it easier for people with learning disabilities to understand an important message. They are designed to help them explore their feelings and feel able to talk about a difficult event such as going to the doctors or having a cervical screening test.
Some books have guidelines alongside the pictures. This is for carers and health professionals to refer to when showing them to people with learning disabilities.
There are books and leaflets about:
- having cancer
- checking for cancers
- going to see your doctor
- going to the hospital
- when someone you love dies
The leaflets are usually free but you may have to pay for the books or CDs/DVDs – there are details about the cost and how to get copies below.
Who can use these books and leaflets?
Picture based books and leaflets are most useful for:
- people with learning or communication difficulties
- anyone caring for or working with people who have learning disabilities
- people who can’t read or find it difficult to read
- helping people whose first language is not English when there is no interpreter
Books Beyond Words series
These are some of the books that Books Beyond Words offer. They have a wide selection. Go to their website to see more.
V Donaghey and others
Beyond words, 2002
This is a true story about a woman with Down’s syndrome whose doctor tells her she has cancer. It describes how scared this makes her feel. She is reassured that the cancer can be cured but will need to have surgery, radiotherapy and chemotherapy. The book is designed for use by anyone working with people who have a learning disability and have been diagnosed with cancer.
S Hollins and J Wilson
Beyond words, 2004
This book covers testicular self examination, seeing your GP and early investigations that you may need if your doctor thinks you may have a problem with your testicles. It doesn’t have information on testing for cancer or treatment for testicular cancer.
S Hollins and W Perez
Beyond words, 2017
This book tells a simple story about a women going for a mammogram and getting her result. It also explains what happens if you are called for further tests and how to look out for any changes in your breasts – being breast aware.
M Flynn and others
Books beyond words
This story shows how important a healthy lifestyle is in maintaining a healthy bowel and avoiding constipation. Reading this book will help to make conversations about poo easier and will show that constipation isn’t anything to be ashamed of or embarrassed about.
S Hollins, H Bailey and J Downer
Books beyond words, 2019
This book is designed to help prepare women with learning disabilities for a smear test. It talks about whether or not to have a smear test, what actually happens when you do have one, getting your test results and health education. It also looks at the emotions you may have about having a smear test.
S Hollins, J Bernal and D Slowie
Books beyond words, 2018
This book uses a story about two people going to see their doctor and what happens to them. It aims to help people with learning disabilities overcome fears about seeing their doctor, understand what is going on and know how to communicate their problems. GP’s and primary health care workers would also find this book useful when they have appointments with those with learning disability.
S Hollins, J Bernal and M Gregory
Books Beyond Words, 2017
This book is aimed at people with learning disabilities, their carers and health professionals in the hospital setting. It is designed to support patients by explaining in pictures what happens in various outpatient situations. It covers their feelings, trying to find the outpatient department and waiting to see the doctor. It also illustrates common procedures such as an ultrasound and x-ray. This book is usually best when read alongside ‘Going into Hospital’.
S Hollins and others
This book uses stories to deal with bereavement. It illustrates counselling and shows how this may help people cope better with their feelings.
S Hollins and L Sireling
Books Beyond Words, 2014
This book uses pictures to tell a simple but moving story about a mother dying. It ends in a positive way showing that there is hope in the future. Although this book is aimed at people with a learning disability it is also very useful for parents and teachers trying to explain to children about the death of a parent.
They also have a similar book called 'When Dad died'.
S Hollins and I Tuffrey-Wijne
Beyond words, 2009
This book tells the story of a man with a terminal illness. It looks at the emotional and physical aspects of dying.
Leaflets from the NHS Screening Programmes
This is a picture leaflet for women with a learning disability to tell them about breast screening.
This is a picture leaflet for women with a learning disability to tell them about having a cervical screening test.
A picture leaflet about colonoscopy, by and for people with learning disabilities.
Booklets and CDs available from FAIR multimedia
Fair (Family Advice and Information Resource) is an organisation who provides information for people with learning difficulties.
Their booklets, CDs and other materials have easy to read information on a range of subjects including checking for cancers, living with cancer and maintaining good health.
This booklet gives illustrated advice to women about how to check their breasts for early signs of cancer. It also contains tips on staying healthy and looking and feeling good.
An easy to read booklet, giving men of all ages everything they need to know about checking their testicles for early signs of cancer. It also answers questions such as:
- why should you check your testicles?
- how should you do it?
- where is the best place to do it?
A booklet on what a woman needs to know about going for cervical screening, and what happens afterwards.
The first in a series of booklets about living with cancer is called 'What is Cancer?' It explains what cancer is and describes different treatments and also includes tips for healthy living.
Other booklets in this series include:
- Someone I know has cancer – what does this mean for me?
- Colorectal (bowel) cancer
- Skin cancer
- Breast cancer
Booklets cost £1, e-booklets are £2 per disc and audio CDs are £2.50.
CHANGE cancer series
CHANGE is an organisation for people with learning disabilities fighting for human rights. They have produced a series of booklets for people with cancer. They include:
- Diagnosis and Treatment (for carers of people with learning disabilities)
- Diagnosis and Treatment (for people with learning disabilities)
- Palliative Care, End of Life Care and Bereavement (for carers of people with learning disabilities)
- Palliative Care, End of Life Care and Bereavement (for people with learning disabilities)
- Symptoms, Screening and Staying Healthy (for carers of people with learning disabilities)
- Symptoms, Screening and Staying Healthy (for people with learning disabilities)
This video was produced by Avon Breast Screening. It's for women with learning disabilities who are going to have breast screening.
The video is about 11 minutes long.
The Easyhealth website helps people find health information that is accessible for everyone. They link to a number of different booklets and leaflets produced by other organisations, charities and hospitals.
The British Institute of Learning Disabilities website also has links to easy to read information about health.
The Northern Cancer Alliance and the North East and Cumbria Learning Disability Network have produced a few short videos for people with learning disabilities and their families and carers. The videos include information about the common signs of cancer, encouraging people to see their doctor if they have any concerns, and lung cancer symptoms.