Cervical screening for people with learning disability
This page tells you about some of the issues when women with learning disability are invited for cervical screening tests. You can find out about
A cervical screening test is currently the most effective way to find changes that may lead on to cervical cancer. Once found the changes can be treated to prevent cervical cancer from developing.
In England, Northern Ireland and Wales, the NHS cervical screening programme invites women from ages 25 to 64 for cervical screening. Women aged 25 to 49 are invited every 3 years. After that, women are invited every 5 years until the age of 64.
In Scotland, women aged 20 to 60 are invited for screening every 3 years. But in 2016, this will change to follow the same screening schedule as England, Northern Ireland and Wales.
Women who are registered with a GP receive invitations to attend for screening.
Before the test it is very important that the woman has information about the test and what it involves. She (or her guardian) needs to be able to give consent to have the test. If a woman has very severe learning disabilities, she may not be able to understand the information and may not be able to give consent to having the test. This can make it difficult for the people caring for her to make a decision about what is best for her.
The screening test involves taking a sample of cells from the surface of the cervix. This can be very unpleasant for someone who does not understand what is happening. The woman having the test needs to take off their underwear and lie on their back on a couch. They have their knees drawn up and spread apart. A nurse then gently slides an instrument called a speculum into the vagina so they can see the cervix clearly. This doesn't hurt but can be uncomfortable.
The nurse gently scrapes the surface of the cervix with a small soft brush and puts the sample into a pot of liquid. They send the sample to the laboratory. They then remove the speculum and the test is over.
It is helpful for the woman's carer or guardian to talk through various factors with the woman's GP when deciding whether the test is likely to be helpful. The carer and GP will need to take into account the level of the learning disability and how much the woman is able to understand.
The doctor will also look at the likelihood of the woman having cervical changes that might lead to cancer. Women are very unlikely to have cervical changes if they
- Have never been sexually active
- Have no history of HPV infection in the cervical area
- Don't smoke
- Are not taking the contraceptive pill
- Have a strong immune system
For these women the risk of developing cervical cancer is very low and it may be better not to put them through a test that they may find distressing.
For women who are sexually active, or smoke, or take the contraceptive pill, the risk of developing cervical cancer may be higher. Then the benefit of doing the test and finding early changes in the cervix needs to be balanced against the possible distress that the test may cause. If the risk of causing distress is very high then it may be better not to do the test.
If the women or her carer and doctor decide that it would be helpful to have the test there are ways of reducing distress.
- The woman needs to have a good explanation of what will happen
- They need to have someone with them who they know and trust
- They usually need a series of visits to the clinic or surgery beforehand to get to know the people involved
We have detailed information about cervical screening and the risks and benefits.
There are several books and leaflets for people with learning disabilities which explain cancer and screening.
You may also find it useful to contact the NHS cervical screening programme for advice about screening for people with learning disability.
Question about cancer? Contact our information nurse team