To coincide with this year’s Cervical Cancer Prevention Week, taking place from 22nd–28th January, the European Medical Journal was delighted to speak to Mr Robert Music, Chief Executive of Jo’s Cervical Cancer Trust, the only UK charity dedicated to women affected by cervical cancer and cervical abnormalities, about the condition and the work of the organisation. The prevention week also encompasses the award winning social media #SmearForSmear campaign, which aims to increase the number of women attending smear tests, particularly in the 25–29 age category. We discussed with Mr Music the report Jo’s released this year, which focussed on local activity to increase screening attendance and included recommendations about how to increase participation. We went on to dissect the gaps in knowledge around the human papillomavirus (HPV), almost invariably the cause of cervical cancer, in the context of the emergence of HPV primary screening in the UK. Additionally, we discussed important research commissioned by Jo’s and the impact it is having on policy, as well as the scope of the work the charity hopes to undertake in the future.
Access to Smear Tests
#SmearForSmear has been highly successful over recent years. The campaign is popular, simple, and highly effective, in which people smear lipstick on their face and take a picture for social media; however, attendance at smear tests remains a major issue for female healthcare in the UK. Recent data from Jo’s show that one in four women do not take up their smear test invitation and, amongst the 25–29 age group, the figure is one in three.1 This is despite the fact the test is highly effective at preventing cervical cancer: data shows that it prevents 75% of cases occurring. There are a multitude of factors as to why this is the case and local action is key to addressing many of the barriers, according to Mr Music. This assertion is in light of the newly published report, entitled ‘Cervical screening in the spotlight: One year on’,2 based on a freedom of information request the charity submitted to all upper-tier and unitary local authorities and Clinical Commissioning Groups (CCG) in England. This request asked what activities the institutions had undertaken to increase cervical screening coverage from August 2016 to August 2017, as well as the outcomes of those activities. Amongst other worrying statistics, no activities at all had been undertaken by 34% of CCG and 32% of local authorities, and many even stated that they have no responsibility to do so.
Accessibility to screening services is one of the biggest reasons for low attendance. Mr Music explained the practical difficulties many women face in attending: “We’re all living very mobile lives now. Women are sent their invitation letter, they have to pick up the phone and make the appointment, with the time offered by their GP often being very difficult or not possible; it can be on a Wednesday at 12 o’clock, for example. If you’re working, that’s particularly difficult because it is hard to get time off from work, so even if women are trying their best to attend, it may be very hard to do that.”
The report therefore makes a number of recommendations for the sorts of strategies CCG and local authorities should be considering to increase the accessibility of smear tests. These include extra screening during evenings and weekends, which was shown to have been implemented by some of the areas in the freedom of information data. Mr Music also suggested ideas such as allowing women to attend surgeries close to their place of work, the opportunity to self-test, and potentially mobile units, similar to those offered for breast screening.
Another major reason for women not attending is because of embarrassment about their bodies and having to get undressed in front of doctors and nurses. Survey data published on 22nd January by the charity found that 35% of young women (25–35-year-olds) stated that embarrassment has caused them to delay attendance. Mr Music believes that increased and targeted education and awareness about the smear test is key to reducing this issue; another of the proposals in the report makes it clear that local action should be taking more steps in this direction. The two most important messages to get across to women are emphasising the fact that everybody’s bodies are different and not to let embarrassment and concerns about external appearance get in the way of protecting your health. It is also important to convey that the people they will be seeing for the tests are highly trained professionals, committed to ensuring the experience is as comfortable as possible.
“It’s about normalising the fact that everyone’s bodies are different,” he explained. “And the smear testers see literally millions of people every year. They’re experts at this; part of their job is to make someone feel as comfortable and relaxed as they can be.” Mr Music noted that nevertheless, the extent of embarrassment problem should also be clearly articulated to those who give the smear tests, so that they take this into account to an even greater degree. “I think there’s a role for the charity, in terms of educating the staff, to make sure that they are aware of the significant numbers who do have concerns about their bodies, to make women feel as comfortable as possible, ask many questions, take their time, and ensure the process is as easy as it can be,” he added.
We went on to discuss the human papilloma virus (HPV), of which certain strains are the cause of almost all cases of cervical cancer. Mr Music informed us that a large and rising amount of the queries and questions Jo’s Cervical Cancer Trust receives are related to confusion and misunderstanding about HPV. “We’re getting increasing calls around HPV, and it can cause a lot of confusion, worry, and anxiety. It can bring on feelings of guilt and other concerns, such as whether their partner been unfaithful and, if not, how and why have they got HPV,” he explained. “Survey after survey and research after research we’ve undertaken has shown really poor understanding of HPV and its link to cervical cancer, and the lack of understanding that it’s something that can lie dormant in your body for 20–30 years or more.” With primary HPV screening due to be rolled out across the UK as the method of examining cervical screening samples, following a number of successful trials, Mr Music thinks that questions about HPV will grow in prevalence even further.
Research and Influence on Policy
The trust undertakes copious amounts of research that frequently informs policy and initiates changes in approaches from government and healthcare providers. It’s this aspect of the charity’s work that Mr Music believes makes Jo’s an especially important voice in this area. The organisation has regular meetings with key health officials in government and last year organised a panel of influential experts to look at the results of a major study set up by the charity, as well as the recommendations from it. The study is named ‘Long term consequences of cervical cancer and its treatment’3 and analysed the side effects and impact of cervical cancer treatment on women. The charity also hosted drop-in events for Members of the Scottish Parliament and Members of Parliament in Westminster last year, to inform them about the impact of cervical cancer and what needs to be implemented to increase cervical screening uptake.
“I think all the research that we’ve undertaken over the last few years around the barriers to screening are very important. Its data that’s helped create a significant level of news, and has been added as evidence to national cancer strategies. We’re very much an evidence-based organisation and for me that’s absolutely key. It’s quite easy to go and shout about things but if you haven’t got the evidence to back it up there’s no point,” said Mr Music.
There are a number of other areas that the charity believe could be ripe for change in terms of strategies for preventing cervical cancer. These include funding from government for national awareness campaigns, which has been demonstrated to be crucial for increasing attendance at screen tests. In light of the trend towards HPV primary screening, ways to help women HPV self-test also requires more research and action. Other research commissioned by Jo’s, modelling the impact of cervical cancer by the year 2040,4 displays a potential need to increase the screening age from 64 to 70. We look forward to seeing what movements there will be in these areas over the coming years.
In regard to the future scope and direction of the charity, Mr Music was open to a range of possibilities if the outcome resulted in improved reduction of cervical cancer incidence. This could include working more closely with HPV organisations, given that HPV is the cause of a number of other cancers in addition to the cervical form. As the charity continues to grow in reach, it’s also important that, despite being a UK based charity, Jo’s will explore providing help and expertise to other countries in the future, particularly in the developing world. “I think we have a role and duty to share best practice and knowledge around the world,” commented Mr Music. “There are many developing countries where they haven’t got cervical screening programmes and we know that on average a woman dies every 2 minutes from cervical cancer; it’s horrendous, particularly when we are talking about a preventable cancer. So, if there are ways that we can share what we’ve learnt that could help improve situations elsewhere, we have a duty to do that.”
- Jo’s Cervical Cancer Trust. Embarrassment preventing young women from attending a test that could save their life. 2017. Available at: https://www.jostrust.org.uk/node/573478. Last accessed: 19 January 2018.
- Jo’s Cervical Cancer Trust. Cervical screening in the spotlight: One year on. 2018. Available at: https://www.jostrust.org.uk/sites/default/files/spotlight_2018_v4.pdf. Last accessed: 19 January 2018.
- Jo’s Cervical Cancer Trust. Long term consequences of cervical cancer and its treatment. 2017. Available at: https://www.jostrust.org.uk/about-us/our-research-and-policy-work/our-research/long-term-consequences-cervical-cancer-and-its. Last accessed: 19 January 2018.
- Jo’s Cervical Cancer Trust. Projected incidence and mortality of cervical cancer to 2040. 2017. Available at: https://www.jostrust.org.uk/about-us/our-research-and-policy-work/our-research/projected-incidence-and-mortality-cervical-cancer. Last accessed: 19 January 2018.
For more information about Jo’s Cervical Cancer Trust, click here.