A diagnosis of HPV can cause confusion, fear and anxiety. Imogen Pinnell, health information manager at Jo’s Cervical Cancer Trust, suggests ways to approach conversations about this in the pharmacy
Human papillomavirus (HPV) is a common virus that eight in 10 people will get in their lifetime. There are more than 200 types of HPV, most of which are relatively harmless and usually go away without causing any problems.
However, there are some types of HPV that can be higher risk. Nearly all (99.7%) cases of cervical cancer are caused by a high-risk HPV.
In the whirlwind of the last year, communications about HPV testing becoming the method used to test samples from cervical screening has taken a backseat. In Scotland, the change happened just as the UK went into lockdown, and in England and Wales there are many people who have not attended a cervical smear test since the change in programme.
This week (14 to 20 June) is Cervical Screening Awareness Week. We have a valuable opportunity to highlight the importance of the HPV test and the ways in which cervical cancer can be prevented, including the HPV vaccine. The week is also a great time to communicate what HPV testing is, as well as what it means to have HPV. Improving cervical screening uptake remains essential, yet it should not be a tick-box exercise where we overlook the needs of those faced with a diagnosis of HPV or cervical cell changes. This is not only to reduce anxiety, but to retain confidence and trust in the screening programme.
For those of us armed with the facts about HPV, a diagnosis may seem straightforward. It’s incredibly common, with eight in 10 people getting it at some point in their life. However, these three letters are what we hear the most about through our support services at Jo’s Cervical Cancer Trust. This continues to increase as more and more people learn that they have HPV. For many callers, the first time they heard about HPV at all was in the letter they received telling them of the
results of their test. Confusion, fear and anxiety are common reactions. We hear from people who have faced the breakdown of a relationship due to HPV, with connotations of promiscuity, feeling dirty, and assumptions it means cancer. Callers are often considering making significant lifestyle changes to try and clear the infection, such as using additional protection with long-term partners to try to avoid reinfection.
For those diagnosed with cell changes or cancer, the HPV diagnosis itself can bring long-lasting, and sometimes severe impacts on mental health. Fear of judgement can also make it more difficult to reach out to others for support, at a time when support matters more than ever.
‘When I found out that I had cell changes and HPV, I freaked out. It takes a lot for me to cry, but I broke down. I was gripped with fear and uncertainty of what was going on inside my body. I had no idea what HPV was or how I had got it. I searched “What is HPV?” and it said an STI. I was alarmed and confused, as I had been with my boyfriend for over four years. The diagnosis made me feel vulnerable and frightened. It was only when I started to learn a bit more that my fears began to disappear.’
Here are a few tips for pharmacists on how to talk about HPV.
1. Ask open-ended questions to check the person's understanding and feelings about HPV. You could say...
· ‘How does having HPV make you feel?’
· ‘Can you talk me through your understanding of what HPV is?’
· ‘What else would you like to know about HPV?’
2. Be mindful of the language you use. Ensure the words you use do not add to the stigma, shame and fear around HPV. It is unhelpful to link HPV to promiscuity and sexual behaviour, so avoid calling it an STI or STD. Unlike many STIs, HPV can't be treated, fully prevented and is not always detectable. You could say...
· ‘HPV is a really common virus that most of us get at some point in our lives.’
· ‘It is really hard to protect against getting HPV.’
3. Acknowledge that HPV is confusing. HPV is a new topic to lots of people and there are still gaps in research and understanding about the virus. Be prepared for difficult questions,
especially ones where there is no right or wrong answer - for example, whether to tell sexual partners. You may find that you do not have the answer to every question. You could say...
· ‘I don't really know that, because there hasn't been enough research yet. But here's what I can tell you about HPV.’
4. Offer reassurance about HPV. Giving the facts about HPV can help people understand that, in most cases, the virus will go away on its own. You might want to talk about the role of the HPV vaccine and cervical screening.
This is a good chance to address the HPV myths and stigma, especially around shame, cheating and sexual behaviour. You could say…
· ‘Sometimes people think having HPV is a reflection of their actions, but it’s absolutely not. HPV is really common and hard to completely protect against.’
5. Signpost to further support. Jo’s Cervical Cancer Trust offers reliable information and support at jostrust.org.uk and have a free Helpline on 0808 802 8000.
Cervical screening is a difficult test for many people, like those who find it painful or who have experienced trauma, and people who face a language barrier, or who have gaps in understanding about what the test is for. The impact of Covid on the programme, and reluctance of some to access primary care services over the last year, have provided further hurdles.
So, this Cervical Screening Awareness Week, help us get the facts out about HPV and cervical screening. We want everyone understands what the test is for, where to access tips and support and, importantly, knows what their results mean. For more information: jostrust.org.uk/csaw