When will I be allowed to refuse a smear test?

[nothankyou45]

I don’t want another smear test. I’ve said no. Lots. I’ve asked for it to be noted in the system.
And yet the reminders keep coming. In the post. To my phone in the form of text messages. I don’t know how else to say no. The surgery have recently created a form that I can fill out that will opt me out until the next recall. But not permanently. There is no way to say “no thank you” and just get on with my life.
Everyone seems to think if only I “truly” understood I’d say yes:

-Do I want to speak to a doctor about it?
I have. And I watched him note to not contact me further in my file.

-But it’s really important?
I get that. But unfortunately it’s not something I am able to do.

-But have you tried therapy?
Yes, CBT and EMDR

-Oh what about meds?
Tried to diazepam. Sorry that didn’t work either.

-Ok fine. Don’t do it but you’ll get cancer and end up needing treatment that’s worse than a simple test.
Right. Thanks

-If nothing else- think of your children! They need their mother!
As above, right. Thanks.

-Surely whatever has happened in your life can’t be that bad? I mean no one likes a smear but we just get on with it? … What happened?
What happened to being 45, reviewing the options, saying no and having it respected?

When do I get bodily autonomy? When will saying no be enough?
Or do I just need to continually fight the PTSD that each reminder brings? Will I one day be so worn down that I finally say yes? Is that how consent works now?

That's horrific.

Throw the reminder letters into the bin and don’t go for one. No one is going to frog march you down for one.

@SamBeckettslastleap you make a great point. (sorry, I have no idea how to reply or edit posts). I've just searched and it looks like there actually has been at least one pilot by the NHS. Be great to know how effective it was, because surely that would be so much more efficient all round...

https://www.england.nhs.uk/2021/02/nhs-gives-women-hpv-home-testing-kits-to-cut-cancer-deaths/

The evidence for the success of smears is poor, just one article discussing it

https://www.theguardian.com/society/2003/may/22/genderissues.publichealth

But I've seen more scathing. I've heard discussion on studies that show smears make bugger all difference to cancer survival in the absence of other symptoms.

Don't let smear/cancer guilt remove your right to consent.

Personally I won't have another smear and I won't be encouraging DD to either.

I don't know why I'm getting drawn into this, as it is clearly a personal choice, but that Guardian article is from 2003 - over 20 years ago.

So I got interested in the history of screening:

1960s: cervical screening began. 1988: the NHSCSP was set up with the introduction of computerised call and recall systems. 2004: the introduction of liquid-based cytology ( LBC ), which has significantly reduced the amount of inadequate cervical screening results.

As of December 2019, primary HPV screening is fully rolled out and being offered across England as part of the NHS Cervical Screening Programme. This significant landmark will improve screening by identifying more women at risk of cervical cancer.23 Jan 2020

1 in 130 UK females will be diagnosed with cervical cancer in their lifetime (born in 1961). 99.8% of cervical cancer cases in the UK are preventable. 99.8% of cervical cancer cases in the UK are caused by infections. 21% of cervical cancer cases in the UK are caused by smoking. https://www.cancerresearchuk.org/health-professional/cancer-statistics/statistics-by-cancer-type/cervical-cancer

There are around 850 cervical cancer deaths in the UK every year, that's more than 2 every day (2017-2019).

When cervical cancer is diagnosed at an early stage, the 5-year relative survival rate is 91%. When cervical cancer is diagnosed after it has spread to nearby tissues, organs, or regional lymph nodes, the 5-year relative survival rate is 60%.27 Apr 2023

80% of women who develop cervical cancer, have never been screened or have not been screened regularly. https://www.cancer.org.au/cervicalscreening/about-the-test/what-is-hpv

Clearly, some posters have such trauma that they can't face a test and don't wish to be reminded of it. That is horrendous for them and I'm not posting this to guilt anyone. Each weighs up what they are prepared to risk - but cancer is no picnic and this one has no early symptoms but is so preventable. If you are in age range and potentially at risk, at least consider home testing.

I think you have mistyped because these numbers don't add up:

99.8% of cervical cancer cases in the UK are caused by infections. 21% of cervical cancer cases in the UK are caused by smoking.

That comes to 120.8% in total.

Relative has never gone for one 🤷‍♀️

Delete and ignore.
if they come out with threatening comments like ‘ your kids need you’ or ‘you will die of cancer’ I’d make a formal complaint.
Surgeries get very worried about these.
You can also complain to cqc

@VitoCorleoneOfMNMafia I also spotted that and wondered if perhaps the 0. had been missed on the second % (I straight copy /pasted from the link).

Or maybe there is an overlap:

'Quitting smoking can help a person's immune system fight HPV. If someone smokes and has a positive HPV test, it is particularly important that they quit. Stopping smoking may not make HPV go away immediately or completely, but some research suggests that it may reduce the impact of HPV on the body.'22 Nov 2021

OP I’m so sorry for whatever trauma you’ve experienced that has led to PTSD.

Would you feel able to write a formal letter of complaint to the GP practice? You don’t have to go into any detail about why you don’t want a smear test but just explain that on repeated occasions you have recorded your wishes with the practice and they continue to ignore this. Ask for a copy of the practice complaints procedure as well. It may not solve the issue but I think it would be your best shot.

Absolutely, no woman has to disclose anything but for some of us it gives a feeling of control over the experience and it also gives a chance to gauge the nurse/gps response before they start the process of actually carrying out the smear. I also felt very lucky my nurse was very compassionate and empathic.

The sad thing really is the lack of standards of care some women in this thread have experienced. I think it's perfectly reasonable for women to decide that they want a medical professional to know about trauma they've experienced so they can be better supported and accommodated during a particularly sensitive procedure be it smear or coil insertion etc. It makes sense that it forms a part of my medical history. The problem is that what this thread evidences is that that doesn't always translate to a more compassionate and sensitive service and that's a major problem. If women didn't want to have to repeatedly disclose even if there was a tick box on file that made the practitioner aware that extra sensitivity was needed that should be enough without requiring detail as to the 'why' itself. A longer appointment could be booked, someone could be arranged to attend as support, follow up care could be provided etc but really what I think this comes down to is lack of continuity of care, lack of consistency in how nurses/gps are responding to the disclosures they do get and just overall lack of respect for women's comfort during sensitive or potentially painful examinations or procedures. When you think about that is it any wonder so many women choose not to disclose and not to attend?

I don't think there's a right or a wrong here, some women feel ready and able to take the chance with it and others don't. It's a purely personal decision.

Is that all they test for though? My wife had one recently and her letter said that they had tested for HPV and also that there weren’t any concerning cells (I cant remember the exact wording but definitely implied they had done both things).

They are odd about smear tests in general though… my mum once got into a row with a gp who kept insisting that she MUST have one, right now, go down to the treatment room and tell them I sent you urgently, I can’t give this medication until you have one… she had had a radical hysterectomy 15 years earlier and doesn’t have a cervix.