If you're a woman with a learning disability, getting a cervical cancer screening can be traumatic – here's why

For too many women with learning disabilities and autism, 'no' can be the default answer. It shouldn’t be like that

Charities warned the Covid-19 crisis has put more women at risk of developing cervical cancer and urged health professionals to clear logjams of cancelled treatment as quickly as possible to ensure cancer does not have time to develop (Getty)

World Cancer Day is about acknowledging the progress we have made against this terrifying disease, but also about making plans for how we make new and valuable progress. It should also mark a moment when we talk about difficult issues – the ones we risk shying away from.

For many, research released last week on cervical screening rates was shocking. The figures showed screening rates were at their lowest in two decades. Almost one in three women aged 25 to 64 have not had a screening within the recommended timeframe.

But there is more than that. For myself, and other women with learning disabilities and autism, this is a familiar tale. The #MyGPandMe campaign, spearheaded by Dimensions, an organisation supporting people with learning disabilities and autism, found that only 19 per cent of women with learning disabilities have had a recent cervical cancer screening. That compares to 73 per cent of women in the general population. It is a deeply worrying gap.

A cervical screening is an important procedure, and a legal right for women, even if you have a disability. So why are so few women with learning disabilities getting screened?

One reason is an assumption in our society that women with learning disabilities are not sexually active. That leads many doctors, carers and families to wrongly assume they don’t need the test.

Sometimes, health professionals can think that women with learning disabilities shouldn’t or can’t have procedures that are too “intimate” or “invasive”. This topic can be difficult to talk about, but it should not be brushed under the carpet. All women with learning disabilities should be able to choose whether they want, and need, screening. Some of them might need additional help in deciding whether the screening is right for them.

When a woman is not able to make this decision for herself, the Mental Capacity Act lays out a clear process that will help those around her to make a decision that is in her best interest.

We should all be given the power and opportunity to have a say in the decision that affects our health.

It is important that enough time, understanding and simple kindness is given to women with learning disabilities, as well as their families and support workers. GP surgeries and staff are under constant pressure, but it’s important that doctors and nurses are supported with training, so they have the awareness and knowledge to build trust with patients and decide the best approach to a procedure that can cause a great deal of anxiety.

My own experience with gynaecological examinations has been quite traumatic. Because appointments are very rushed, and there can be a lack of sensitivity from medical staff, this has even resulted in me getting an injury during a procedure.

In addition, it is sometimes very difficult to get information about whether a screening is the right option. Information can be difficult to understand, and people can give you very different advice.

When I first got a letter inviting me to a cervical screening, I called a nurse at my local surgery who advised me to have one. However, due to other gynaecological issues, a specialist GP advised that it might be better for me to hold off on the procedure.

For many women who decide to go ahead with the screening, problems can arise. Betty, a woman supported by Dimensions, understands the importance of having a screening and wants to go ahead with it. However, previous experiences and a brusque approach from a nurse have left her terrified. Betty freezes in absolute terror at the last moment, and several attempts at screenings have ended in this way.

Her support workers, together with nurses, have put in place a number of reasonable adjustments to help her with the process, including familiarising her with the instruments that would be used, providing easy to read documents explaining the procedure, holding her hand at either side of the bed. So far, none of these adjustments have been successful, but the support workers and nurses are determined to keep trying.

The Equality Act makes reasonable adjustments a legal responsibility for GPs and primary healthcare staff. Something that may seem simple, like a longer appointment time or allowing a trusted support worker to be in the room with the patient, can make all the difference.

Some women with learning disabilities might be unable to communicate in an unfamiliar environment, and the presence of the support worker could help ease their anxiety, and help the surgery staff understand what the patient wants.

For too many women with learning disabilities and autism, “no” can be the default answer. It shouldn’t be like that. Women with learning disabilities are an important part of society, and need to be supported to have the same fair access to healthcare as everyone else.

Gemma Jones works as a Quality Consultant at Dimensions