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One size does not fit all

CEO of Jo’s Cervical Cancer Trust Robert Music reveals how you can help increase cervical screening attendance, highlighting the many reasons for the low uptake.

When Jade Goody was diagnosed with cervical cancer in 2008, and died from the disease the following year, an extra 400,000 women attended their cervical screening, or smear test (Lancucki, 2012). However, since then uptake has been declining, and screening attendance in England is now at a 20-year low. This is despite the test being the best protection against cervical cancer, preventing 75% of cervical cancers from developing (Peto et al, 2004). Currently in the UK, nine women are diagnosed every day with cervical cancer, and two women will lose their lives (Cancer Research, 2018).

Why are women not attending?

There are many reasons women delay or don’t attend their cervical screening, including psychological, physical, literary, cultural and access, so it is important to remember that that there is not a ‘one-size-fits-all’ approach in tackling them.

Knowledge about the test and who it is for is a key barrier. Through our research, we have found many women do not know what cervical screening is for and why it’s important. This lack of knowledge can lead to misconceptions and result in women putting the test at the bottom of their to-do list or simply believing cancer ‘won’t happen to me’.

Barriers vary across age groups, with high numbers of young women feeling embarrassed about their body shape (35%), as the most recent research from Jo’s Cervical Cancer Trust showed (JCCT, 2018). Many young women fear the results (14%) and are worried that the test might be painful (25%) (JCCT, 2017). Among older women, on the other hand, there can be the misconception that cervical cancer is a young women’s disease, or that screening is not important if you have been with the same partner for a long time. Pain, especially post-menopause, can be a factor in non-attendance, as can a previous bad experience.

One of the other barriers to screening is around accessibility. Many women find it difficult to find time to attend an appointment amid busy lifestyles (25%) (JCCT, 2016). Sometimes GP surgeries have only a handful of nurses that carry out smear tests at their practice, limiting the number and times of available appointments.

For other women, having to visit their GP and going for such an intimate exam can cause extreme distress and anxiety. There are many reasons for this, including not feeling comfortable with their body shape or body dysmorphia, mental health problems, experience of sexual violence or having a previous bad experience. Even taking the first step to book an appointment can present a huge challenge.  

Among some women, often those from black, Asian and minority ethnic communities, there can be cultural and religious barriers to consider. Some prefer not to know if there was something wrong, and there are misconceptions that that only promiscuous women need to have the test. In some communities, it is often the husbands and fathers that arrange doctor’s appointments and make decisions about their family’s health, and lack of understanding may contribute to appointments not being made.

What can you do? 

Community practitioners have the advantage of already working closely within the community. They are acutely aware of issues and barriers within a specific community, having established local connections to spread health messages. Therefore, they have an important role to play in raising awareness of cervical cancer prevention and encouraging women to attend screening. 

Generally, it is important to avoid describing screening as a ‘test for cancer’ but instead as a preventative test to detect treatable cervical abnormalities. At the same time, it is crucial to explain what the risk is if women don’t attend their test when invited. When speaking to women who have never been for screening or who had a previous bad experience, talking through the test in detail, showing the equipment that is being used and offering advice – such as asking for a smaller speculum, should the test be too uncomfortable – can be a great help and make a huge difference to someone deciding to book an appointment. If women would like to have a more in-depth conversation about the test and why they might not want to attend, it’s important to be aware of and signpost to expert organisations and charities that have further resources, support services and information available such as NHS Choices. We would also recommend women contact their GP about any additonal concerns (see resources, below). 

Practitioners can also work with faith groups and community groups to reach women who don’t engage with the health service, or where literary, cultural and linguistic barriers present barriers. Knowledge around the test can be improved in the community through organising presentations and health talks or distributing information materials. Jo’s Cervical Cancer Trust also has online information available in a range of languages that might prove useful when engaging with women, including women with a learning disability, with low health literacy and where English is not the first language.

Our awareness weeks – promoting cervical cancer prevention and cervical screening awareness – provide key opportunities to get involved and organise information stalls, displaying posters and distributing information across venues in the wider community; this includes hairdressers, GP surgeries, pharmacies, libraries, gyms, children’s centres, job centres and public toilets. Awareness weeks are also a great opportunity to organise and trial new initiatives: for example, increasing GP opening hours by arranging extra screening clinics at the weekend, or identifying delayers and non-attenders and contacting them individually about booking their screening appointment.

Community practitioners working in schools or with schoolchildren have an opportunity to educate girls about cervical cancer and prevention at the point of giving the HPV vaccination. Jo’s Cervical Cancer Trust worked with the Teenage Cancer Trust to develop information materials, videos and lesson plans to support this work (see resources, below), including the need for women to continue to attend regular screening even if they have been vaccinated.

There are already some fantastic examples of successful local campaigns to increase cervical screening uptake. Jo’s Cervical Cancer Trust is always happy to work with and advise practitioners on some of the other steps that can be taken to improve uptake. Our vision is a future free from cervical cancer, and only through working collaboratively on both a national and regional level will we achieve this.

Robert Music is the chief executive of Jo’s Cervical Cancer Trust. He joined the trust in 2008 and has over 25 years’ experience working for healthcare charities.


Time to reflect

What more could you do to help increase women’s uptake of smear tests in your community? Or are you already doing such work? Join in the conversation on Twitter @CommPrac using the hashtag #SmearTestAware


Resources

For more information, visit jostrust.org.uk 

To direct women to more information about cervical cancer and abnormalities, see bit.ly/jostrust_support

For work with teenagers, see bit.ly/jostrust_teenagers

For information on what happens when a woman goes for cervical screening, see bit.ly/NHS_screening


References

Cancer Research. (2018) Cervical cancer statistics. See: http://www.cancerresearchuk.org/health-professional/cancer-statistics/statistics-by-cancer-type/cervical-cancer#heading-Four (accessed 23 February 2018).

Jo’s Cervical Cancer Trust. (2018) Body shame responsible for young women not attending smear tests. See: jostrust.org.uk/node/1073042 (accessed 20 February 2018).

Jo’s Cervical Cancer Trust. (2017) Barriers to cervical screening among 25-29 year olds. See: jostrust.org.uk/about-us/our-research-and-policy-work/our-research/barriers-cervical-screening-among-25-29-year-olds (accessed 20 February 2018). [is this right link though? See eail of wed]

Jo’s Cervical Cancer Trust. (2016) Further understanding of the perception of cervical screening among women over 50. See: jostrust.org.uk/about-us/our-research/further-understanding-perception-cervical-screening-among-women-over-50 (accessed 20 February 2018).

Lancucki L. (2012) The impact of Jade Goody’s diagnosis and death on the NHS cervical programme. Journal of Medical Screening 19(2): 89-93. See: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3385661 (accessed 23 February 2018).

Peto J, Gilham C, Fletcher O, Matthews FE. (2004) The cervical cancer epidemic that screening has prevented in the UK. The Lancet 364(9430): 249-56.

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