Jo’s Cervical Cancer Trust Chief Executive Robert Music speaks to HEQ about cervical cancer screening, treatment, and research.
In the UK, around 3,200 new cases of cervical cancer occur every year, with the highest incidence rates among female patients between the ages of 30 and 34. While incidence rates have remained broadly stable over the last decade, they are expected to fall in the next 10 years as a result of the introduction of a widespread human papillomavirus (HPV) vaccination programme in 2008.
Jo’s Cervical Cancer Trust is the UK’s foremost cervical cancer charity, dedicated to reducing the impact of cervical cancer by providing information and support for patients and clinicians, as well as campaigning for excellence in treatment and prevention at a policy level. Chief Executive Robert Music speaks to HEQ about the work of the trust and the impact of the COVID-19 pandemic.
What support does Jo’s Cervical Cancer Trust offer for patients and healthcare providers?
We offer a wide range of support – although that has changed quite a lot in recent months, because the COVID-19 pandemic has meant we can no longer offer face-to-face support as we had been doing. However, we still have a number of different services for those who are living with a cervical cancer diagnosis, as well as for those who are worried or have questions about cervical screening or treatment. One of the most popular of these services is a free helpline; and we also offer the opportunity for a callback service: we take a call on the helpline and then we get the opportunity to speak to callers again a few weeks after their initial call to see how they’re doing and whether they have taken any of the actions that were discussed on the first call. That is a relatively new addition to the service and it has gone down well; our users find it reassuring and it has been very popular.
We have an ‘Ask the Expert service’: we are lucky enough to have around 40 different health experts from the whole field of screening, prevention, HPV specialists, oncologists, and so on, who volunteer their time for free. If a member of public is worried or confused they can send in a question, which will then be forwarded to an appropriate panellist; and then normally they will have a response within a couple of days. We are currently in the process of preparing to launch an email service and potentially a virtual face-to-face service.
We have an annual event for those who are living with cervical cancer diagnosis, called Let’s Meet; as we couldn’t run the event in person this year, instead we ran it virtually over the course of a whole week. It was very popular; and we found that it enabled people who live far away or in remote regions to attend and to meet others in their situation, often for the first time. It helped to reduce the feeling of isolation, to know that they weren’t the only person with a cervical cancer diagnosis.
We produce a newsletter for health professionals, as well as a newsletter for our supporters. On our website we have a range of health information, which is all peer reviewed both by health professionals and our patient group, Jo’s Voices. Everything is regularly updated and reviewed: it is a really key concern for Jo’s to make sure that any information we provide is supported by the most current available evidence.
What are the key symptoms of cervical cancer which women should look out for?
There are a number of things to be aware of – the key sign to look out for is unusual vaginal bleeding, including after menopause, after sex, or between regular periods. There can also be changes to vaginal discharge; pain or discomfort during sex; and unexplained pain in the lower back. It is very important to note that any of these symptoms could occur for many other reasons – they may well not indicate cervical cancer – but if they are not normal to you, you should contact your GP straight away, so they can have a conversation with you, give you reassurance, give you support and look at any possible next steps as well.
Can you tell me about some of the research projects Jo’s Cervical Cancer Trust has given its backing to?
We try to do a lot of user-based research to understand how the public are feeling about certain areas of our field, for example by looking at the challenges facing those who have a physical disability and struggle to access screening or patients who have a learning disability. At the moment there are some pieces of research taking place into how people are feeling about the process of screening during COVID-19, which has been interesting: they have found that some people are more comfortable with the screening process now compared to where they were in June, when places were beginning to reopen again.
We also work towards exploring differences in understanding about screening and prevention between different communities: for example, we know that there is very low awareness among Black, Asian and minority ethnic (BAME) communities in comparison with white women, so we can use that knowledge in targeting campaigns. That data is really important, because it helps us to be more effective both in our work as a charity and in our public affairs work: we aim to influence policy in terms of parliamentary focus; and we also work with the NHS around communications and messaging. It is very important to consider the best ways to communicate to different groups and what the barriers are in terms of some of the issues around screening and cancer prevention.
Has the impact of the COVID-19 pandemic on healthcare services affected the rate at which cancer can be diagnosed and treated?
When COVID-19 first hit, the data around cancer referrals was very concerning – there was a significant drop in referrals of between 60% and 70%. In terms of how patients were being treated, the NHS was understandably very cautious; they were focusing on COVID-19 and wanted to make sure that people who had cancer would be safe and protected, so decisions were made to not treat or not see some patients for the sake of those patients’ health. A few months further down the road, I think the numbers have improved significantly; they haven’t yet returned to the level that we want them to be and it is important that they get there as soon as possible, but there will be a backlog.
There are concerns that patients who have cancer-related symptoms and have not yet been referred could be at risk of further progression of cancer, which may necessitate more invasive treatments with greater uncertainty about outcomes. That is why one of the things that we have done recently is a piece of work based on more recent research, focusing on awareness of the key symptoms of cervical cancer.
Have any new developments or innovations improved the success rate of cervical cancer treatment in recent years?
The earlier cancer is detected, the less invasive the treatment is, so screening and prevention programmes are key. We have been pushing for a pilot for HPV cell sampling, which would enable women to take a test for HPV at home when they are in control. They don’t have to book appointments, they don’t have to worry about accessing screening – and screening is a particularly major barrier for certain groups, such as those who have experienced sexual trauma.
Jo’s Cervical Cancer Trust