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Let’s talk about…accessing smear tests when you have a physical disability

Posted on: Wednesday, 23rd January 2019 by Kate Sanger, Head of Communications & Public Affairs

Smear tests can be difficult for a variety of reasons, but some women can face additional barriers to getting tested. This includes women with a range of physical disabilities such as muscular dystrophy or multiple sclerosis. While in some areas women are able to access smear tests, whether through home visits, equipped GPs or provision to attend in other settings such hospitals, this is unequal across the county and mean some women are missing out on tests that could potentially save their lives. 

Women share their experiences of smear tests with a disability

Cerebral palsy, which affects 24,620 people in the UK, is the name for a group of lifelong conditions that can affect movement and co-ordination.

Mary Doyle, who has cerebral palsy, says: 

“I have been receiving smear tests for 30 years and I’ve never missed one. I understand the importance of attending even though it is often a difficult and painful experience, even as a very independent wheelchair user. With cerebral palsy, I require much more time for my appointment, significant assistance onto the examination bed (which in itself can be very dangerous without the option of a hoist), a warm environment for my muscles to relax and very patient nurses as CP does not allow my body into the standard position for this exam, so the nurses need to understand, not rush me and also work with my stiff body or unexpected spasms and still get a good sample.

"I am conscious that having a spasm could result in damage to me or the nurse"

I have had spasms midway through which are very distressing as you need the test completed but don't want to abandon it half way through to only come back another day. I have experienced mostly excellent nurses but it’s still a physical and emotional drain to attend. I am conscious that having a spasm could result in damage to me or the nurse, and I have been hurt trying to stay still where they needed me, and also when the anaesthetic for a colposcopy didn't kick in. It was horrific. It took several weeks to recover. That’s why it is essential for disabled women to feel comfortable requesting their needs when making the appointment and during the appointment itself. Sexual health care for disabled women, preventative and treatment, needs to be discussed openly without assumptions. Continued education, improved facilities and honest communication by all, will make this a more accessible and less feared experience." 

Accessibility is an issue that we have been talking about for some time. In our report ‘Computer says no’, we discuss some of the problems that exist and solutions to tackle some. HPV self-sampling, is something that we urgently want to see introduced as it will enable women with a physical disability, as well as a wide range of other women, to sample at home. Not only is this a reliable and easy to perform, it also offers a way to overcome some of the barriers around accessibility. 

We want to see real change. It should not be the case that some groups of women are denied access to a potentially life saving test.

"There is also the presumption that we don’t need this screening"

Emma has spinal muscular atrophy: “Disabled women are being denied access to cervical screenings due to a lack of equipment like hoists in GP surgeries. There is also the presumption that we don’t need this screening like every other woman as many people think disabled women are asexual, which is simply not true. We [Muscular Dystrophy UK] will be fighting for access on both fronts to ensure disabled women can access basic healthcare, including life-saving cervical screening.”

What can you do if you have a physical disability?

If you, or someone you know, has a disability and is struggling to access a smear test, you might find these steps helpful:

  • Call our helpline and one of our team can talk you through your options
  • Contact your GP to discuss your needs and ask where you can access a test, this might include a home visit from a district nurse, at a local hospital or a different GP surgery 
  • You can also contact your CCG to ask about options in your area
  • Ask for a double appointment so you don’t feel rushed and have time to talk through your needs
  • Write to your MP encouraging them to take action on your behalf and that of other women living with a physical disability in their area

What can you do if you're a health care professional?

If you are a health care professional or provider: 

  • Assess whether women with a disability can access smear tests at your GP surgeries. This includes provision of hoists and step-free access
  • If surgeries cannot provide access then where can patients be referred. This could include at alternative GP surgeries, sexual health services or a hospital
  • Are nurses who do house visits trained to take samples to benefit those unable to leave their house?
  • Disability equality training can help staff take steps to reduce inequalities in access 
  • Provide a space in which discussions can be had without assumptions regarding physical or mental ability, physical sensation (or loss of) and judgement
  • Join our calls to make self-sampling part of the cervical screening programme 
  • Everyone with a cervix is entitled to a smear test and it should not be the case that some women are disadvantaged in the opportunities available to them to access the test