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?

I agree not all cervical cancers are HPV related, but they only check the cells if you test positive for HPV. So smears are now pointless.

I have the opposite problem, bloody wish they would actually test the smear I just had but I was HPV neg so they won't, think i'll
go private. I want to maximise my chances of staying on this earth thanks!

Yes the NHS might be in a state generally, but that doesn't mean that individual bits of it shouldn't work properly - it is someone's job to co-ordinate the screening process, work out what is automated and how to opt-in or opt-out - and the fact that there are record waiting lists in other areas doesn't mean that this part of the service can't function effectively, or that we can't expect things like this to function effectively. It's not a massive funding issue to adapt a system to effectively opt-out certain patients from reminders - obviously they do it to other patient groups by sex or age or whatever, so it is not an unreasonable ask. It's not like anyone is asking for some complicated new service to be set up, or that difficulties in other parts of the NHS have to automatically affect everything and reduce our expectations of any part of it working well.

My understanding is different of what they test and I just double checked on NHS site.

The test now is that they look for abnormal cells AND HPV.

The HPV is then relevant for the frequency of next test.

• If no HPV you are at lower (not no risk) of cervical cancer so you will be called again in 5 years. (When they will test for abnormal cells and HPV)

-If there is HPV , they call you in 1 year as you have higher risk of cervical cancer

It isn't true that they now only test for HPV.

I know this isn't your issue OP but I thought worth correcting the misunderstanding that they only now look for HPV. The test also always looks for abnormal cells. The HPV is to help pick out higher risk to call you more frequently

Wish I could edit - I've just read it again the wording is ambiguous ... it says if negative HPV no further tests are required for abnormal cells.

This may increase the chances of it being better/not as bad, but it's not necessarily sufficient.

I've had one smear test in my life (I'm still in my 20s). It was in my home country, at the gynaecologist, and since my visit there included an ultrasound it was offered to me on the basis of 'since we're already probing you, would you also want this checked?'. She was a female gynaecologist, nice calm manner, on the chair where you spread your legs wide and they're on cushioned legs, etc.

To be fair, I can't tell you which part of the pain and discomfort was for the ultrasound and which for the smear itself. But I was hissing and tensing up with pain every time she moved it. It was really very painful for me. She switched me to the smallest speculum (if I can fault anything, it's not starting with that in the first place). In the end the ultrasound was finished anally, which was as an alternative and described as 'uncomfortable, like you need to go' - and so it was, but it wasn't painful.

I haven't got a cervix and still get the reminders.

I'm half tempted to go along to an appointment, and wait for the nurse to go.....oh! 😆

I hear you, it is relentless messaging

Soon it’s going to be a DIY swab at home. Would you do this?

NHS has spent billions on IT still not FFP but many friends of the government got rich.

It’s your body, you have every right to do whatever you wish with it. Nobody has authority over you but you.
The reminders are annoying though but like other have said the computer system isn’t set up to deal with these issues. Computer says no.
I just ignore and delete.

There is an incentive for GP's to do the smear tests. There is no incentive for GP's for mammograms that's why the GP surgery will actively chase you up for smears. If you decline a mammogram you won't be chased up by the GP surgery.

I sent a stiff letter to my local Trust. 51 and the only smear I’ve had was when I was under a general anaesthetic. Like you, OP, lots of therapy, EMDR etc.

Tell them to bog off, they can't force you to have a smear test to keep your registration.

It's about time they rolled out the home test for HPV, they've been piloting it for long enough.

Youre bring ridiculous. I've never had a smear test and I just don't take up the offer.

Do you freak out about pizza flyers through the door too?

Just ignore them.

Just ignore them.

The same as I ignore Mother's Day leaflets, flyers, TV ads and emails since my mum died over 20 years ago.

Do GP practices get paid well for screening like this? I’m currently being harassed to go to a health check, that was a total waste of time when i did go last time at 35. Its even more annoying that you can’t get an appointment if you do want to see someone, so I’m surprised the receptionist has time to be ringing me when I've already declined the email and the text message…I’d really like an appointment to discuss possible HRT, but no, no appointments available for that!

I haven't worked in a surgery for 4 years so not sure if this is up to date information, but when I did they got paid for every NHS health check they did.

They wouldn’t stop sending me reminders when I had already had cervical cancer and a radical hysterectomy🤷‍♀️

It was upsetting and stressful but no one seemed to be able to stop them!

YANBU, it shouldn’t be so difficult to opt out.

They’re only offering it to you, loads of us have been overdue our smears and not felt felt we’re being coerced into it, I don’t remember getting more than the odd reminder letter

They test for HPV first.
If negative, it's routine recall, three or five yearly depending on age.
If HpV positive they look for abnormal cells. No abnormal cells then recall in 12 months, abnormal cells is referral to colposcopy.
I did my update two weeks ago and this was unchanged.

SamBeckettslastleap not completely pointless. A smear is a chance to visualise the cervix. I have referred many women for asymptomatic polyps for example, which can become cancerous.

They definitely do not test of HPV negative. They used to, I requested the information, it took a lot of letters and the doctors don't even know but they no longer check the cells of those that are HPV negative.

I can only assume the ambiguous wording is so the doctors keep getting their bonuses.

I wish the reminders would stop. I wish I could ignore them like it was normal spam.

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.

but I can't, because it comes with this fear and guilt ^
My rapist may kill me, I know that. I don't need it as a fucking monthly reminder.

I’ve never had hvp - still had cin 3 and also struggle with smears so went private with the cancer specialist dr who removed my cin 3 - he still only tested my smear for hvp… !

The 'incentives' practices get for calling for smears actually puts the lights on and pays the staff. Less money, less staff, fewer clinics, longer waits etc etc.