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Cervical screening for women with learning disabilities

Find out about some of the issues women with learning disabilities face when they have a cervical screening test.

What cervical screening is

Cervical screening is a way of preventing cancer by finding and treating abnormal cell 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 may 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 check for abnormalities.

In some cases, the samples are also tested for the human papilloma virus (HPV). This virus 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.

Before the test

Before the test it's 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 is unable 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.

Video about cervical screening

Public Health England and Jo's Cervical Cancer Trust have made a video for women with mild to moderate learning disabilities to help them understand what cervical screening is.

Factors to consider before recommending the test

It's 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: 
06 Jun 2017
  • Women with learning disabilities: risk behaviours and experiences of the cervical smear test
    S Broughton and K Thomson
    Journal of Advanced Nursing, 2000. Volume 32, Issue 4

  • 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. Volume 15, Issue 3

  • The role of learning disability nurses in promoting cervical screening uptake in women with intellectual disabilities
    JL Lloyd and NS Coulson
    Journal of Intellectual Disabilities, 2014. Volume 18, Issue 2

  • NHS Cervical Screening Programme
    Public Health England (Accessed June 2017)

  • Access to cervical screening for women with learning disabilities
    S Watts
    British Journal of Nursing, 2008. Volume 18, Issue 8

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