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Cervical screening for people with learning disability

Find out about some of the issues when women with learning disability are invited for cervical screening tests.

What is cervical cancer screening

Cancer screening involves testing apparently healthy people for signs that could show that a cancer is starting to develop. 

Cervical screening is a way of preventing cancer by finding and treating early changes in the neck of the womb (cervix). These changes could lead to cancer if left untreated. 

The screening uses a test called cytology, which many people know as the smear test. A nurse or doctor takes a sample of cells from the cervix with a small brush. They send the sample to a laboratory to be checked for abnormalities. In some cases, samples are also tested for a virus called human papilloma virus (HPV) that increases the risk of cervical cancer.

Who has cervical screening

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.

You need to be registered with a GP to get your screening invitations.

Why younger women don't have screening

We know from research that cervical cancer is very rare in women younger than 25. But changes in the cervix are quite common in younger women. So, screening them leads to unnecessary treatment and worry. Scientists have worked out that screening younger women leads to more harms than benefits.

The cervical screening test

Before the test

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.

During the test

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.

Factors to consider before recommending the test

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. 

Ways to reduce distress

If the woman 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
Last reviewed: 
11 Mar 2015
  • Women with learning disabilities: risk behaviours and experiences of the cervical smear test
    S Broughton and K Thomson
    Journal of Advanced Nursing. 2000 Oct;32(4):905-12

  • Cross sectional survey of cervical cancer screening in women with learning disability
    K Stein K and N Allen
    British Medical Journal (BMJ). 1999 Mar 6;318(7184):641

  • A review of the literature: interventions to maximize capacity to consent and reduce anxiety of women with learning disabilities preparing for a cervical smear test
    S Broughton
    Health Services Management Research. 2002 Aug;15(3):173-85

  • Cervical screening for women with learning disability. Concerted effort is needed to ensure these women use preventive services
    T Djuretic and others
    British Medical Journal (BMJ). 1999 Feb 20;318(7182):537

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