I have never made my disdain for the NHS cervical screening programme a secret, I have always openly criticized the programme and what I see as glaring ethical, moral, and scientific issues with it, but I don't think I've made a comprehensive list that explains exactly what those things are and how we could fix them, and how simple it would actually be to do if the NHS was at all open to the idea. So here it is, the big comprehensive list of everything wrong with the cervical screening programme and how to make it better.
the issue: Lack of balanced and honest information.
current cervical screening info focuses on one thing and one thing only, and that thing is getting as many bums on as many exam couches as possible, it doesn't put very much emphasis on giving patients the information and tools they need to make an informed decision on whether or not screening is right for them. The info that is provided oversells the benefits and ignores the risks, it makes cervical screening look like a no brainer. Why wouldn't you screen with all those benefits and so few risks?
the solution: provide leaflets with honest and balanced information.
It really isn't that hard, the NHS already produces information leaflets on cervical screening, it wouldn't cost anything extra to add more balanced information on the potential risks and potential benefits of screening. Leaflets that talk about the potential benefits of choosing to screen like the possible early detection of HPV or precancer, but also talk about potential risks, like false positives, overtreatment, loss of fertility, sexual dysfunction, and chronic pain that can follow screening and related procedures, as well as acknowledgment of the psycological and emotional toll the invasiveness of the screening itself can take on people who face barriers like being disabled, being a survivor of sexual violence, being trans, etc as a risk in itself. Stress the importance of understanding those risks and making your own decisions, and give people the tools they need to be able to make that assessment.
the issue: lack of informed consent and coercion.
Many people report feeling as if they didn't have a choice in whether or not they screened and felt bullied and coerced into screening by their health care provider, the NHS cervical screening leaflet did not even mention the right to refuse the test or talk about consent up until a couple of years ago, and even then when it was changed it faced backlash from medical professionals and organizations complaining that people knowing their rights was dangerous and would make fewer people screen.
The solution: End screening targets and punish coercive providers.
As long as targets are in place informed consent will not exist, as long as providers are given incentive to coerce and bully patients they will continue to do so, targets and the corresponding incentive payments have to go if we ever want to have a fair, balanced, and consensual cervical screening programme. Right now providers have financial incentives to get as many people to screen as possible and it has lead to far too many patients being bullied and coerced into screening rather than making the informed decision themselves to go. do away with targets and incentive payments that will change. And start reprimanding or punishing providers who are caught engaging in coercive behavior. We could easily repurpose whoever is responsible for setting and keeping track of targets and disrupting points for them into a task force that ensures patients' informed consent is being respected in the cervical screening programme for little to no extra cost to taxpayers.
the issue: an unacceptable testing method.
Despite dozens of campaigns to increase cervical screening uptake around 25% or 1 in 3 ignore their screening invite or choose not to attend as I prefer to put it. When asked (and when the data isn't cherry-picked but we're not gonna call anybody out, this time lol) a significant percentage of people say their reason for not attending is the test itself and how invasive, uncomfortable, painful, and violating the testing method is. This is especially true among people and communities who face barriers to accessing screening, like disabled people, survivors of sexual violence, medical trauma, or FGM, those with chronic pain or conditions like endometriosis, vaginismus, or fibromyalgia, those with PTSD, and those with learning or developmental disabilities. As well the LGBTQ+ community, partially trans men and asexual women.
the solution: self-sampling.
That's right, you don't have to have a stranger prying your genitals open with a torture device looking tool and rooting around in your most personal areas to participate in cervical screening, smear tests are not the only option. Self-sampling-where you take a swab of your own cervix, yourself, in the privacy of your own home or alone in an exam room is not only possible but is the most viable, cheap, and easy method of screening for cervical cancer. There is currently a pilot programme in London testing out this method, but the cold hard truth is the UK is abysmally behind on this method, other countries have already not only successfully implemented self-sampling but effectively replaced their cervical screening programmes with it.
It completely eliminates many of the barriers many different groups of people report facing and makes screening more accessible to survivors of trauma, disabled people, and LGBTQ+ people.
Most people when surveyed admit that they would much prefer being able to self-sample and most people were confident in their ability to take their own sample successfully. At this point, there is no excuse not to offer self-sampling as it's just as effective as regular screening.
It would even save the NHS and taxpayers money.
If we combine that with abolishing target incentive payments we'd be saving quite a lot of taxpayer money actually.
the issue: wasted resources and taxpayer dollars.
The bottom line is, the cervical screening programme wastes a lot of resources, time, and taxpayer dollars that would be better distributed elsewhere within the NHS. If you don't believe me, just ask anybody who has ever tried to opt-out of being invited for screening. Right now women who have had a hysterectomy and no longer have a cervix are still often invited to screen, so are transgender women who also don't have a cervix, so are people like me who have decided they don't want to participate in screening and asked to stop getting the invite. What should be a simple call to your GP stating that you either don't have the appropriate equipment needed for cervical screening or don't want to screen is instead a whole unnecessary ordeal. I actually didn't even know how to do it until someone on Twitter was kind enough to explain it to me. I will definitely do another post explaining opting out in greater detail but for now just know you basically have to walk through hellfire to stop getting your invite even if you don't have a cervix. Just the amount of time and money wasted on post to send out screening invites to people it isn't relevant to would probably horrify any taxpayer, and it's been so hard to stop receiving the damn thing most people don't bother.
the solution: provide an easy opt-out method.
It really is as simple as providing a box you can tick with your cervical screening invite that states screening is not relevant to you or that you don't want to have it. I even took the liberty of designing a card that shows what this opt-out might look like.
See? it's easy, that took me 5 minutes to design, and could prevent so many wasted resources, time, work, and money. As well as unnecessary distress for people who find screening too difficult or triggering to deal with. Prior to finding out that I could opt out, I use to throw my invites in the barbeque grill on my balcony and burn it. I was literally burning money and resources all because the NHS doesn't want to respect my choices and give us an easy opt-out method.
The issue: low uptake in screening.
Uptake for cervical screening is at an all-time low, with 1 in 3 eligible patients not attending.
the solution: make changes we're asking for and if that doesn't help accept it and move on.
not everyone wants to have a smear test, some people have made the informed decision not to have them and that is ok and their choice should be respected. Cervical screening awareness campaigns should not focus on pressuring as many women as possible into screening blindly, the aim should be to inform as many people as possible about the benefits of screening, while also acknowledging the risks and encouraging individuals to make the best decisions for them, their health, and their mental and emotional wellbeing. Screening is not one size fits all. Work on making the changes patients have been asking for you to make for years, and make the screening method more accessible and acceptable but be accepting and respectful of people's decisions.
the issue: lack of LGBTQ+ friendly care and information.
many members of the LGBTQ+ community report feeling excluded from screening discussions and not included enough on information leaflets.
the solution: include better information and ensure NHS smear takers are trained in LGBTQ+ needs.
make sure LGBTQ+ people understand their risk of cervical cancer and HPV and have options to find LGBTQ+ friendly care in their area, reprimand providers who are not providing this care. This includes care for trans men that ensures their needs are met and they are kept comfortable.
the issue: lack of trauma-informed care for survivors of sexual violence and other trauma.
many survivors of sexual violence and/or medical trauma report screening being very difficult for them and struggling to access trauma-informed care that meets their needs and leaves them in control of their bodies and what is happening to them. The cervical screening programme has long ignored the issues faced by this group of people and is quick to brush off very real fears or trauma associated with smear tests and the level of unacceptable many survivors find smear tests to be as simple embarrassment or childishness. There has literally been a campaign from the NHS telling people who struggle to attend smear tests to not "die of embarrassment" and coercion and emotional manipulation has long been used as tools to get bums on exam couches without even a second thought for how this affects trauma survivors.
the solution: just stop being douche bags lol.
it isn't a hard concept for most of us to grasp, being kind and is compassionate is 100% free and actually pretty easy to do. NHS smear takers should be learning about trauma-informed care and providing it to every single person who walks through their doors, it should be the standard of care and not something survivors have to "come out" as survivors to a random stranger to ensure they are treated in an acceptable and non-triggering manner. Providers should be trained in what to say and what not to say, and how to treat traumatized patients, if they fail to do so they should be reprimanded and eventually lose their practice license if they don't comply with trauma-informed care standreds
These are the biggest issues I have with the cervical program and how I think we could fix them, I'm sure I missed some, but feel free to add your thoughts and opinions in the comments below and keep the discussion going.
What would you like to see changed about the cervical screening programme and how would you change it?
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