Cervical screening for women with learning disabilities

Cervical screening is a way of preventing cancer. It tests for a virus called high risk human papilloma virus (HPV). High risk HPV can cause cervical cells to become abnormal. Most cases of cervical cancer are linked to high risk HPV. 

The cervix is part of the female reproductive system. It is the lowest part of the womb and is at the top of the vagina. A nurse takes a sample of cells from the cervix using a small soft brush (smear test) and sends the sample to the laboratory. 

Who has cervical screening?

The NHS cervical screening programme invites women from age 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.

Cervical screening also applies to people within this age range who have a cervix, such as trans men. You can talk to your GP about this.

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.

Things to think about 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: 
05 Mar 2020
Next review due: 
05 Mar 2023
  • Experiences of cervical screening and barriers to participation in the context of an organised programme: a systematic review and thematic synthesis

    AJ Chorley and others

    Psycho-Oncology, 2017. Vol 26, 161-172

  • 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 March 2020)

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

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