Women With Learning Disabilities Are Missing Life-Saving Cancer Screenings

While Louise, Dawn and Liz’s screenings did not run smoothly, many women do not even make it into the room for an appointment. One of the biggest barriers preventing women accessing screening hinges on their carers understanding of consent to the procedure, Robinson explains. 

Under the Mental Capacity Act, if a women is assessed as having the mental capacity to weigh up the pros and cons of the procedure, it is her choice to consent to having it – or deciding not to.

If the women is assessed as not having the capacity, then a ‘best interest decision’ is made on her behalf. But, this doesn’t always lead to a screening. For some women, their carers, GPs or support workers may consider screening to be too traumatic for them, and they will be opted out. 

“Unfortunately, for many women with learning disabilities, they do not even get to the point of the Capacity Assessment being made,” Robinson says.

“It has not been unusual for a GP or the person’s carers or supporters just to be of the opinion at the outset that screening is just not right, useful or appropriate for a woman with learning disability, without that decision being subject to a formal assessment process.” 

For things to improve, Robinson says, we need to give GPs and their teams enough time and training so they are able to communicate clearly and confidently to women with learning disabilities, their families and support workers, and establish the best way to help them as individuals. 

It took months to prepare Louise for cervical screening – she needed to understand the instruments that would be used, the exact details of the process, and she also needed to choose the nurse who would perform it.

Kerry, a member of Louise’s support team, explains: “The first two unsuccessful attempts made us even more determined to help Louise with the procedure. When we drilled down to why she refused, we soon understood it was her fear of the unknown.”

But with some extra time, the team were able to help Louise feel in control of the process. For an extra moral boost, during her third attempt at screening, they also pinned a picture of David Beckham – her celebrity crush – to the ceiling during the procedure. “It’s not in the normal book of reasonable adjustments,” says Kerry, “but it certainly did the trick!”