To ask why you’ve missed/delayed/declined cervical screening?

[chickentikkawhatswrong]

I see a lot of the campaigns on Facebook about women not going to smears or putting them off for too long.

However it’s generally stats and doesn’t seem to delve too far into the actual reasons?

If you are reluctant what holds you back from attending?

Graphista - thank you for your words. I agree totally. You are amazing!

I’m HPV negative so there’s no point having an invasive, very painful procedure to tell me what I already know. If I could pay for a proper examination of the cells I’d go.

Terfydactyl

This is the up to date advice:
www.gov.uk/government/publications/cervical-screening-removing-women-from-routine-invitations/ceasing-and-deferring-women-from-the-nhs-cervical-screening-programme

This is the rigmarole you have to go through to just say no:

2.1 Ceasing as a result of informed personal choice
The NHS offers cervical screening using the principle of informed personal choice. All screening invitations are accompanied by an information leaflet which seeks to provide accurate and balanced information about the possible benefits and risks of screening. This is to help the individual decide whether or not they wish to accept.

If someone decides to decline screening, either temporarily or permanently, programme and primary care staff must respect this decision.

A person may be eligible for screening but have circumstances which affect their ability to consent to the test, or affect the sample taker’s ability to obtain a sample. Special circumstances which require individual consideration are described in section 2.3. In most instances a person should only be ceased from call and recall if they agree to this. They will then be managed in the same way as people who choose to withdraw from screening.

2.2 Voluntary withdrawal
People can choose to withdraw from the cervical screening programme at any time, and do not have to give a reason for their decision.

Every person who wishes to withdraw permanently from the screening programme must be:

. provided with (or signposted to) sufficient information, in an appropriate and accessible format, to support an informed decision
given the opportunity to discuss their decision with a GP or other suitably qualified health professional (but they do not have to take up this opportunity)
. informed that withdrawing from the programme means they will not receive any future invitations or reminder letters about cervical screening from the programme
. asked to put their withdrawal request in writing, ideally using the standard template ceasing form available from the NHS Cervical Screening Administration Service (CSAS); if this is not possible, a record should be made at the time of the request (call and recall must receive and retain a copy)
. advised that they can return to the programme at any time providing they are still eligible for screening (following the process in the return to recall section below)
. notified in writing when the ceasing has been completed (their name is removed from call and recall)

Ceasing documentation
A person should put their request for permanent withdrawal from cervical screening in writing if possible. This is to ensure there is no misunderstanding and that they are not ceased from call and recall in error. The template ceasing form available from CSAS should be used. This contains the information needed to support a withdrawal request and is the preferred method of communication. The GP practice should arrange for the form to be provided to the individual. A clear and unambiguous written request signed by the individual is also acceptable.

If a person will not or cannot provide a written request, the GP or a suitably qualified healthcare professional should document the request in writing, noting the time, date and content of the conversation.

The withdrawal request is an important part of the person’s screening record. The GP practice must retain a copy of the document within the person’s medical record.

Since it is people who can now withdraw from the cervical screening programme, I will get DH to have a go and see if he has better luck than me.

@coatofsomanycolours oh wow! Thank you so much

I do wish I could clone the lovely woman who did mine the other week for people who want them but are nervous/find them painful
No weighing
Lying on your side
Smaller speculum with no problem
5 mins and done

And I'm someone who finds them painful because my cervix is at a weird angle. I did bleed but that's normal for me

Just to say I think the opt out process is hit and miss, I opted out of smears in 2015 and it wasn't a faff, I just wrote to surgery stating ibwould jot be having any more smears,,it wasn't up for discussion, I wouldn't sue anyone if I did get cancer, and I wanted no more "invitations " reminders phone calls or anything else from anyone. They sent me the official form which I also signed and apart from one doctor hassling me afterwards I've been left alone. Some women I know have gone through the same process but still get "invitations ", remind your practice it is actually ILLEGAL under data protection laws to continue to harass an opted out person about screening! ! I've also opted out of mammograms and had no hassle. Says it all when data protection laws take precedence over womens mental health

I've just had a letter to say I'm about to receive a bowel cancer testing kit. No contact given to opt out so it'll go in the bin as I do not want this screening.

I wonder if I'll get the same level of hassle from the medical profession as some here have from CC screening

On the GOV.UK website there’s an opting out of screening link and it tells you how to opt out of each of the screening programmes, or for bowel screening call 0800 7076060 to ask that all current and future “invitations “ and kits are stopped

And no, they probably won’t pressure you over bowel screening as men have them too! Even with mammograms, I never had any trouble opting out or questioning about it and I’m more likely to get breast cancer than cervical!! Yet even after opting out of smears I was once given the third degree about it!!

Interestingly there’s an article in the BMJ which states that bowel screening isn’t helpful if your Qrisk is under 3%.
I’ve just put mine into the Qrisk calculator and it’s come out at 1.1% 🤷‍♀️

Sorry it’s Qcancer
qcancer.org/15yr/colorectal/

www.bmj.com/company/newsroom/experts-advise-against-routine-bowel-cancer-testing-for-all-over-50s/
Article here

It does make you wonder doesn't it.

I found an article deep in the NHS's pages that says it is likely that the new FIT test will miss 51% of early bowel cancers due to the level of blood in the sample that triggers a positive.

It could be set lower but then they don't have the resources needed to cope with the number of colonoscopies that would result...

@Whattochoosenow

Interestingly there’s an article in the BMJ which states that bowel screening isn’t helpful if your Qrisk is under 3%. I’ve just put mine into the Qrisk calculator and it’s come out at 1.1% 🤷‍♀️

At what age do you start to think, 'well you've got to die of something?'

I know Margaret McCartney has talked about this too in one of her books (with particular reference to bowel screening).

The really fascinating bit was that there was a study about the level of promotion which encouraged take up, but if they were then given more information to help make a properly informed decision about the effectiveness of it and the potential harms of screening, take up of screening actively dropped. Thus there was a dilemma over how much you should tell the patient to enable informed decision making and whether that was more important than getting the 'correct behaviour' from a patient and higher take up rates of screening.

She bowel cancer in particular she references a Cochrane Review which stated:

Combining the four trials did not show any significant difference in all-cause mortality between the screen and control groups

So basically the point is, if you get bowel cancer it's a sign that your body is giving up on you completely anyway, and it's basically a choice over your cause of death and the manner in which you go.

Of course, if you have a history of bowel cancer in your family or an identified higher risk of it, you might be wiser to play the odds and go for screening as you might well benefit from it more than someone in the general population.

And it was found that once people were informed about this, take up of the screening reduced.

She had a particular beef about how all cause mortality wasn't looked at properly - so you might reduce rates of death from bowel cancer, but you didn't actually reduce deaths.

I think screening probably has its place, but I also think we are locked into a mentality where we think screening = good when it perhaps needs a lot more critical thinking and consideration.

I've just done my risk in that, it's 0.5% which is nice.

I had to call up to ask for mine because I knew it was due and hadn’t been sent a letter. My last one was three years ago and I remembered it because 3 year old DS was 12 weeks old at the time. The GP receptionist tried telling me it was two years ago but I asked her to check again because it definitely wasn’t. Turns out she thought 2019 was two years ago… Christ knows whether they’d ever have realised and asked me, maybe a year late if I’d left it to that receptionist.

I've been putting mine off. Life is busy. I'm a shambles. Can barely remember to brush my teeth, let alone spend 10 minutes working out how to find a time that accommodates menstrual cycle, childcare needs and nurse appointment spaces.

If the local town had a drop service system I might manage it.

I went about 18 months ago and the nurse couldn't get to my cervix with the available speculums. I've not been back and I doubt I will tbh. Made me feel like a bit of a freak.

0.8% risk for colorectal cancer in next 15 years

What is the point of these screening programmes if there's so many false positives, they're screening for cancers that are very rare etc?

I'd rather money and resources in the nhs went where it is DEFINITELY needed -

Mh
Gynae REFERRALS When women are ALREADY reporting clear symptoms
Other REFERRALS when patients re already reporting clear symptoms
Providing continuity of care
This would free up appointment times too!

I'd genuinely like to know if these screening programmes are even value for money

Haven’t RTFT. I haven’t because I have been vaccinated against HPV and have only had one partner (my husband), where I am also his only partner. My risk of HPV is essentially 0, and HPV is the most common cause of cervical ca to the point the NHS only looks at cells from screening if HPV is detected, so I see no benefit of going through what is essentially an invasive medical procedure.

Some areas are trialling at-home self-swabbing for HPV detection, which I would gladly do. Sadly my GP isn’t participating.

@Elphame

It does make you wonder doesn't it.

I found an article deep in the NHS's pages that says it is likely that the new FIT test will miss 51% of early bowel cancers due to the level of blood in the sample that triggers a positive.

It could be set lower but then they don't have the resources needed to cope with the number of colonoscopies that would result...

Thanks for the link @Whattochoosenow my score was 1.2.

I dont understand why then the NHS is screening anything unless it's to teach a behavioural pattern. If we say you are at risk, we will agree this test/screen if you also lose weight/quit smoking/cut drinking/stop having any fun, we know best.
And then if you go to a GP with actual things wrong with you, you are shoved out the door with some tablets if your lucky and spend the next 10 or more years trying to get to see a specialist.

Paternalistic and I dont like it.

To add to this I knew a man who kept being given sleeping tablets by his GP. But he was schizophrenic. What possible good can sleeping tablets be if one is hearing voices, unable to leave the home because of the voices, doing very strange things inside the home ( a lot of tinfoil was harmed in the couple years he was on sleeping tablets) he sellotaped tiny holes in the walls, put tinfoil and black paper over the windows, swore blind he could hear mice talking, he needed very good MH care, he got sleeping tablets.

8 years later I'm still stumped what the GP was thinking.

@Elphame

It does make you wonder doesn't it.

I found an article deep in the NHS's pages that says it is likely that the new FIT test will miss 51% of early bowel cancers due to the level of blood in the sample that triggers a positive.

It could be set lower but then they don't have the resources needed to cope with the number of colonoscopies that would result...

I know someone on the 2ww to see a colorectal specialist due to bowel cancer symptoms (later confirmed and needing surgery).

His bowel cancer screening pack came during the 2ww so he completed it (in the hope that it was a false alarm and he didn't have BC) - it came back negative.

So screening seems a bit and miss.

If we say you are at risk, we will agree this test/screen if you also lose weight/quit smoking/cut drinking/stop having any fun, we know best.
And then if you go to a GP with actual things wrong with you, you are shoved out the door with some tablets if your lucky and spend the next 10 or more years trying to get to see a specialist.

Omg this is absolutely spot on!

"*@DimplesToadfoot Jesus…
To all of you that said you had trauma (either birth or sexual abuse) - that’s understandable and I feel for you but you should get some counselling and get the test done.
To everyone else that says it’s painful - no it’s not. It is uncomfortable and embarrassing definitely and I hate it too but god it is so important for your health!
Same with mammogram- I get one every 2 years (I’m 37). It is not painful at all- it’s pretty much having a picture taken of your breasts. They are a little squeezed alright but how is it painful…"

Aren't you lovely!

I enjoyed giving birth therefore all women should enjoy giving birth unless they have a DAMN GOOD REASON not to!!

I actually did enjoy giving birth and I actually DO find smears exceptionally painful. So there.