The language around cervical screening & self-testing is confusing- we need clear and consistent language to increase uptake

This week the news of the first clinical trial in HPV self-testing, YouScreen, hit the headlines and caused a lot of confusion, our Comms Officer, Lydia, talks through the history of cervical screening and how the language surrounding it has been stuck in the past-causing much confusion. This blog is adapted from her opinion piece in The Independent.

Which you can read here.

As soon as we posted the news on The Eve Appeal social media channels, we were hit with a tidal wave of comments and questions – people were concerned about at home ‘smear tests’, whether they would be able to manage to do it, and if it would be as effective as going to your GP.

The big confusion seemed to start with the difference between the at home HPV test and the current cervical screening test done at your GPs. I get it, I can see where the confusion comes in, the language around cervical screening has become quite confusing.

This test used to be called the smear test (because it involved smearing cells on a glass plate), in the US it’s called the ‘pap’ test after the medic and researcher (George Papanicolaou) who created the test. We quite often hear an amalgamation of the two ‘Pap smear’. The cervical screening programme updated its procedure in 2003 and moved to cell collection put into tubes and sent off for cytology (no more smearing!). But the language kind of stuck.

To this day, most of us commonly hear and use the term smear test, although in fact there is no longer any smearing going on. Recently (in 2019), the cervical screening programme changed again and although the test is taken in the same way (using a speculum, and a small brush to collect cells on the cervix which is then put in a tube and sent away) what they check for in the first instance changed, but again the language didn’t.

In the current NHS programme, your cervical cells get sent off to a lab and checked for high-risk strains of HPV, the very common virus which causes 99.7% of cervical cancers. If you are found to have potentially cervical cancer-causing HPV, the sample is analysed further to see if there are any abnormalities to the cells on your cervix. If there are abnormalities, then you are referred for a colposcopy (further investigation that looks at the cervix) and the cells are removed or you are monitored more closely, to prevent cervical cancer from developing.

Self-sampling HPV tests are going into clinical trials in a number of London boroughs- a fantastic step forward in making cervical cancer prevention more accessible to the women and people with cervixes with barriers preventing them from getting their cervical screening done. These aren’t ‘smear tests’ per se but do test for HPV – so cover the first stage of the current cervical screening programme that normally takes place at your GP.

Over the years, everything has changed about the methodology of cervical screening – but the language has stayed the same – and the confusion is clear, which is not helpful when there is low attendance of cervical screening, especially from people with extra barriers, and a woeful amount of misunderstanding about HPV.

The self-sampling clinical trial is starting in London, and is being run by Kings College University London, around 31,000 women will be testing it out. It works by women or people with a cervix using a vaginal swab to take a sample from their vagina, which they send off in the post. The sample will get checked for HPV, much like the first stage of analysis on our cervical screening programme used in the NHS today. If they are found to have HPV they will be contacted and asked to come in for a cervical screening test to get a sample from their cervix to look for abnormal cells, the same as the second step of analysis in our current programme. So self-sample HPV testing is a fantastic step forward in making HPV testing more accessible for women and people with a cervix who face barriers- such as previous sexual trauma, body dysmorphia, FGM, vaginismus, physical disabilities or learning disabilities. Some studies show it increases attendance by 10%, but the test isn’t a like for like alternative to the current programme.

For people reading the news and concerned that they wouldn’t be able to find their own cervix, or worried about taking the sample correctly, it will be much more similar to an at home STI test than the cervical screening tests you know and may have experienced before at your GP surgery. A vaginal swab, analysis, and if found to have high risk HPV, the medical professionals will be in charge of trying to find your cervix if that’s needed later down the line. The at home test has very thorough instructions on how to take the sample, and evidence suggests that 99% of people can self-sample accurately and the test is as accurate as when done by the GP.

You might read this and think ‘well, for people with barriers, those barriers will still exist when they are called in for phase two of screening and need to go in to see their GP’. True- Self-sampling is not an answer to all of the problems stopping people from getting their cervical screening done, but it is certainly a positive step forward, and one that is hugely needed for women and people with cervixes facing barriers to accessing their screening. A health test that can be done at home, in your own time, privately and without you needing to get naked from the waist down, is surely a step in the right direction.

We’re really looking forward to the results and hope to see self-sampling rolling out across the UK in the NHS in the future, and offered as an alternative to cervical screening at the GP. In the meantime, we’re going to work closely with medics, health charities and others to get some consistency into the language around cervical screening and HPV testing. When it comes to something as important as preventing cervical cancer- we can’t leave language up to chance.