We know the routine by now, every three-to-five years a recognisably NHS-blue letter plops onto the doormat urging us to book our next cervical screening and, just like that, suddenly there’s something else on our unending to-do lists.
For many people, that’s all it is, something else we need to remember to do. For others, though, going through such an intimate procedure can be painful, traumatic, or simply inaccessible. Following the news that the number of eligible folks not attending cervical cancer screenings is the highest it has been in ten years, GLAMOUR talks to its readers and gynaecological health experts to ascertain just what those blockers are and what can be done to improve accessibility to this vital service.
By the time you read this, it’ll be the tail end of Cervical Cancer Prevention Week. Cervical cancer is the fourth most common cancer among people who have cervixes globally. It can occur anywhere in the cervix (the opening between the vagina and the womb) and although anyone with a cervix is at risk, it is most commonly found in those between the ages of 30-45. Nearly all cervical cancers are caused by an infection from HPV, though not all people who have HPV get cervical cancer.
The good news is that cervical cancer can be cured pretty quickly if it’s treated early enough. The first step, which sounds straightforward enough in theory, is to attend a cervical screening.
EYNTK about HPV, smear tests and cervical cancer.
Cervical screenings, also known as smear tests, aim to find and treat changes to cells before they turn into cancer. At a cervical screening, a small sample of cells is taken from your cervix with an object called a speculum, and then these cells are tested in a lab for certain types of HPV. People who have cervixes are offered routine screenings every three years between the ages of 25-49, and every five years between the ages of 50-64 in the UK.
However, smear tests are inaccessible for many people, including many disabled and trans people, which can lead to skipped routine checks or, in the worst case scenarios, never being able to attend a screening at all.
“I can’t get to my surgery, so apparently, that disqualifies me.”
Dr Elise Dallas, clinical lead for the women’s health team at Babylon, shared that the most common reasons for missing a cervical smear test are:
- time – clashes with work and childcare arrangements
- fear – the NHS can offer appointments to discuss your fears and help decide how best to proceed
- ‘low relevance’ due to sexual behaviour – myths include that you don’t need screening after menopause, if you've not had sex for a long time or if you've been in a monogamous relationship for years
- administration error – not having been invited to book a screening appointment.
Emma, who is 40 and disabled, told me she has never had a smear test. “I can’t get to my surgery, so apparently, that disqualifies me. I would love to see the district nurses offering smear tests as they’re much more patient, compassionate, and used to dealing with disabled patients, and come to us for other tests and treatments.”
Jude* hasn’t had a smear test since 2015, as they are bedridden and can’t administer a home test. “Domiciliary services need to be better for bedbound and housebound people across the board if we are to have equality of healthcare,” they said.
“District nurses could be trained in cervical screening. The NHS needs to recognise that getting a body from A to B, e.g. by ambulance transport, isn't always the answer, especially if that person is extremely ill. Every year the conversation around cervical screening is focused on fear and disability, but accessibility rarely enters the conversation.”
Several people I spoke to said that they were scared of smear tests because their pain is so often minimised or dismissed. For people with conditions such as vaginismus, that pain can be unbearable.
“Every year the conversation around cervical screening is focused on fear and disability, but accessibility rarely enters the conversation.”
Hannah is terrified of cervical smears. “I have always been told the same thing. That it shouldn’t hurt. ‘It will only be a little uncomfortable for a short time and then it’s all over.’ This has never been true for me since my nerve pain started three years ago. It is an issue I believe needs to be taken more seriously to make patients feel safe and able to trust their health providers.
"Vaginismus, vulvodynia and clitorodynia all exist. As does pudendal neuralgia and other unknown or unnamed nerve issues that cause severe genital pain.”
Elaine, who has fibromyalgia and other impairments, said her last smear test was horrendous. She told me nurses often aren’t made aware of medical history, adding that “it’s like a conveyor belt - quick in and out onto the next patient.” Elaine feels that having dedicated gynaecological centres could help patients to feel more supported.
Elisha* told me that due to past painful experiences, they’re too afraid to book another test. “I am so afraid now of getting a smear test, if I even think about going I can feel my breathing changing again and actually feeling quite faint. It's so hard to explain but it really makes me so upset. I did actually attempt to have one done last year and the nurse was much nicer [than the previous], but it was still painful and after two attempts we decided to try again another time.”
Of course, there are health professionals who will listen to patients and support them as best they can. Where we have bad experiences with people who ignore our needs, make us feel unsafe or cause us physical pain, there are also those who are more sensitive, patient and tailor their service as much as they possibly can for our comfort. But when past experiences have been so scarring, it’s hard to know who to trust.
Alice Walton, a registered practice nurse, told me she invites patients who are worried in for a chat before their screening. Although the NHS appointment time is a max of 20 minutes, she said that having that initial conversation really helps to ascertain what support they need. For the screening itself, she said, “some people bring music, some bring in their partners, some have a look at the equipment we use beforehand. I think it’s important to build trust with the person and have this discussion.”
Dr Deborah Lee of Dr Fox Online Pharmacy also shared that sometimes the 4, 7, 8 breathing technique helps for anyone feeling anxious during the test. “Remember you are in charge, and during the procedure, if you change your mind at any time, you just say ‘stop’ and the procedure will be abandoned. You are in control.”
I have what’s known as a tilted cervix (or tilted uterus), which is actually incredibly common. This means that the cervix curves in a different direction than what is considered normal. Tilted cervixes can be anteverted or retroverted, either pointing down to the spine or pointing back towards the belly button. Cervical screenings tend to be more challenging for people with tilted cervixes, and from personal experience, I’ve found it very painful in the past. I went to my local sexual health clinic for my most recent screening, where staff specialise in gynaecological healthcare. Though the experience wasn’t without pain, it was more manageable for me.
Regular cervical screenings are vital for anyone who has a cervix. However, according to the Gov.uk website, their cervical screening IT systems are not able to include individuals registered with the NHS as male or non-binary. So, to avoid screenings being missed, the website states that the eligible patient’s GP practice or healthcare team is responsible for sending letters inviting them to attend screenings.
KP, who is non-binary and 31, said that the process for trans and non-binary patients has left them feeling discarded. “The NHS website says, “all women and people with a cervix...should be invited by letter.” I did get a letter in the post, but the letter said, “we invite women aged 25 to 64 a registered with a GP.” Receiving the letter, and effectively my identity being ignored in it, made me feel resistant to actually going. I have yet to book a test.”
“I’m not just scared of the pain, or of getting a medical professional who doesn’t understand that my vaginismus is real, but of going through a process that is misgendering and dysphoria-inducing.”
Quinn, who is now of eligible age to be invited for screening, is dreading his first smear test. He told me, “I'm still registered as female on the NHS system – I still get 'Miss Quinn Rhodes' on prescriptions I pick up and on letters the NHS sends me. So I'm not worried that I'll be passed over for a cervical screening, but I am worried about how I'll be treated when I go for an appointment.
“I’m not just scared of the pain, or of getting a medical professional who doesn’t understand that my vaginismus is real, but of going through a process that is misgendering and dysphoria-inducing,” he explained.
“It’s not uncommon for me to be the first trans person a medical professional has had, and that shows in how they interact with me. I don’t want to have to educate the person I’m vulnerable and exposed to about how they should be treating me. I want a medical professional who understands that the vagina between my legs doesn’t make me less of a man, and I wish I could trust that I would get one.”
Karen Hobbs of gynaecological cancer charity The Eve Appeal advised that having GP staff, nurses and doctors trained so that they can deliver trauma-informed care and make their practice a clearly welcoming place for LGBTQ+ individuals would make a big difference to the experience of trans men and non-binary people could have during screening.
She added, “Anything that can be done to make the care being given inclusive of everyone who needs a cervical screening test. It's not about excluding anyone; it's about including everyone who is eligible for this life-saving screening.”
But inclusion doesn’t always mean acceptance or safety. The NHS has a long way to go to ensure all of its patients, whether disabled and/or trans, or otherwise, feel listened to, cared for and respected through the screening process. So many vulnerable people have lost faith in our healthcare system due to traumatic medical experiences – it shouldn’t be on us to fix it.
*Some names have been changed.
- The Eve Appeal, the leading UK charity for all five gynaecological cancers, runs a nurse-led information service called Ask Eve. You can get in touch for free and confidential information and advice on cervical screening by emailing nurse@eveappeal.org.uk or calling 0808 802 0019.
- Jo’s Cervical Cancer Trust also offers support to people getting cervical screenings.
- Gov.uk information on cervical screening for trans people.
- NHS England has information for people who are anxious about cervical screenings.
