People with learning disabilities have a lower uptake of cancer screenings due to various barriers. These barriers may include lack of knowledge about screening, information not being accessible and reasonable adjustments not being made. We want to ensure that people have the right information about the different screening programmes so they are able to decide whether they want to take part.
People with learning disabilities may be able to get support from their local borough community learning disabilities team with their screening.
There are 3 different screening programmes:
Bowel Cancer screening
Shortly after turning 60 men and women are invited by the NHS for bowel cancer screening (this will be extended to 50-59 year olds over a 4 year period). Finding bowel cancer early can improve the chances of it being treated and reduces the risk of dying. The test kit should be completed even if you don’t have any symptoms of bowel cancer as not everyone shows signs in the early stages.
About 2-3% of screening tests are positive, but a positive test doesn’t mean it is definitely cancer. If your test is positive, you will be invited for follow up appointments and tests to rule out serious causes including bowel cancer. It’s important to attend these.
An easy read guide, test kit and letter will be sent to the person’s home. The guide will show how to complete the screening kit and how to send it back for testing.
To find out more information about bowel screening you can read NHS Bowel Cancer Screening An Easy Guide. You can also watch the How to do the FIT bowel cancer screening test video by Cancer Research UK.
There is also an easy guide on having a colonoscopy which takes place if the bowel screening test comes back positive.
Carers can read the Public Health England guidance on supporting people with learning disabilities to access bowel cancer screening.
Breast Cancer screening
All women aged 50 and over are invited to take part in breast screening to make sure their breasts are healthy. Breast screening is important as it can help to find breast cancers even if there are no signs.
You can read more about the breast screening test and how to check your breasts in the Easy Guide to Breast Screening by Public Health England.
Public Health England have also produced guidance for people supporting women with learning disabilities to access breast screening and a new breast screening film which focuses on women with learning disabilities.
The North East London Cancer Alliance have also created a short animated video to show that breast screening services are running and safe from Covid-19.
Cervical Screening
Cervical screening (previously known as smear tests) tests for a virus called high risk human papilloma virus (HPV) and can help to prevent or detect cancer.
Anyone registered as a female at birth will be invited for a cervical screening test from the age of 25. This will be every 3 years up until the age of 49 and then every 5 years until the age of 64.
It is important to note that you can still get HPV, which can cause cervical cancer, even if you have only had one sexual partner, if you have only had female partners or if you have never had a sexual partner. So, whatever your sexual history, it is vital to attend screening.
Cervical screening is private and confidential. You can choose to have your screening performed by a female nurse or doctor. All health and care staff take confidentiality very seriously and would not share your test with anyone without your consent, not even close family.
It is important that women with a learning disability have the option to have a cervical screening test as it saves 5000 lives every year.
There is a lot of information about smear tests for people with a learning disability on the Jo’s Cervical Cancer Trust website. This includes information in easy read format, a video about the test, a helpline and links to other booklets and websites.
The North East London Cancer Alliance have also created a short animated video which shows the importance of cervical screening and helps overcome some common myths and fears.
