wish they'd leave me alone

I am so relieved to find I'm not the only one. I was sent an invitation just over 4 years ago, and I left it a few months and then Jade Goody died of cervical cancer, so I booked my test and went to the GP, left my husband waiting in the car. I thought "oh yeah, it'll be a quick painless test!"

The nurse put a disposable sheet over me so I didn't feel completely embarrassed. It's weird, but it worked. But my goodness I found it painful when she was putting the speculum in, but fine once done, but then the scraping sensation was too much and I ended up in tears. I asked her to just complete it so it was done, but then she removed it because I was too upset, so she didn't get a sample. I then got dressed and sat in a chair and she basically almost made out there was something wrong with me! It's as though if you're sexually active it should be like the same thing?! But then when I said I was fairly newly married and we had only ever been with each other, she told me I was pretty low risk anyway. Well, I actually felt traumatised for several days I realise now, and just stayed at home shivering on the sofa in a tracksuit with a horrible internal pain and my husband was kind of worried about me. Is this right in this day and age? I had no idea it would be like that, and I felt totally uninformed about it. I really do feel the scaremongering is about meeting NHS targets, and you do feel bullied and backed into a corner with the letters that come if you ignore one. I thought it was an invitation?

But to top it off... I realised out the nurse actually lived in my street and I had been stroking her cats! (Sounds wrong, sorry!) Thank goodness we were moving out of the area a few weeks after that. Since then I have been weighing up my thoughts on the testing and reading opinions and the real facts, feel much more empowered to make a choice, and I am actually more concerned these days about eating well, getting regular exercise and going to my 6 monthly dentist appointments having lost my father to a mouth cancer.

Jazzy, So sorry you had a bad experience, but so pleased it's prompted you to do some reading.

You'd be surprised how many women have now made informed decisions not to screen, to screen less often or to seek out HPV primary testing or HPV self-testing with the Delphi Screener.

If you and your husband were not sexually active before you met each other...well, your risk is VERY low and remember, this is a rare cancer anyway, so your risk would be near zero. The risks with pap testing are rarely mentioned, but here in Australia where women are urged to seriously over-screen we have as a result, huge levels of potentially harmful over-treatment/excess biopsies. The lifetime risk of referral for colposcopy and biopsy is a whopping 77%...now this is for a cancer with a 0.65% lifetime risk. It's bad medical advice and nothing has been done to update our program for decades.

Only now are they saying it might be "safe" to move to 3 yearly pap testing from 25 to 70. In my opinion, the enormous profits being made has resulted in our program remaining unchanged for decades, women sacrificed for huge profits. Heads should roll...

In fact, the evidence may surprise you, most women cannot benefit from pap testing, 95% of women aged 30 and older are HPV- and cannot benefit from pap testing. We shouldn't be testing (pap or HPV tests) those under 30, there is no evidence of benefit, the same very rare cases still occur, but testing leads to false positives and over-treatment. Young women produce the most false positives.

There are far better ways of dealing with this rare cancer, the Dutch are the ones to watch, there new program will offer women 5 hrHPV primary tests at ages 30,35,40,50 and 60 (or women can self-test, this device is already in use and can often be ordered online from Delphi Bioscience, i know some Australian women have ordered the device from this company branch office in Singapore) and then ONLY the roughly 5% who are HPV+ and at risk will be offered a 5 yearly pap test. (until they test HPV-)

This takes most women out of pap testing and harms way and will save more lives, concentrating on those at risk.

forwomenseyesonly.com is a great site, lots of women sharing experiences and offering advice and sharing real information. Sadly, the BlogCritics site was upgraded and all of the comments were removed from the thread, we're told they'll reappear shortly, but it's been a month or so now and we're still waiting.

Anyway, you just made the best healthcare decision of your life, to take charge and act on real information and Yes, we can say no to screening. I'm 55 and have never had a pap test, an informed decision made over 30 years ago. It was the best healthcare decision of my life. It's disgraceful that the major focus in women's healthcare is a rare cancer, so many things are ignored, far more likely risks to our health.

So glad to have found this thread. I have only been receiving the letters for a few months and I already feel harassed and upset about the whole ordeal. Having done my research, it would appear that the risk of someone in my circumstances developing the disease is extremely low, but these low-risk factors seem to be severely underrepresented in the NHS literature. I would have been happy to discuss the pros and cons of taking the test with a doctor, but this was not offered prior to being phoned up on a weekly basis and sent pushy letters!

I later received a document from my GP, stating that if I had no plans to arrange a smear I could put an end to the 'reminders' by signing a declaration to confirm that I was taking stupid risks with my health and would not hold the surgery responsible. Since I felt that my decision was informed and not at all stupid, I didn't sign the declaration and the letters continued.

I don't want to undermine the procedure as if obviously saves some people's lives, but the way the scheme is handled is surely out of order? It also begs the question why there is not a similarly aggressive initiative for prostate cancer.

Blue Moon, it's an outrageous way to treat women and hardly an "offer" of elective cancer screening together with real and balanced information permitting you to make an informed decision to screen or not.

Informed consent is a legal right and the doctor has an ethical responsibility to obtain that consent.

The UK has a call and recall system and i understand your GPs also, receive target payments for pap tests. (ours do too) Some practices, nurses, doctors, receptionists have taken it upon themselves to pursue women aggressively and disrespectfully, this is unprofessional and unethical conduct. Some practices remove you from patient records, ie. sack you, if you continue to decline or flag your file for opportunistic pressure when you next appear at the practice. This sort of conduct should be challenged...report them to the Screening Authority and/or send a letter of complaint to the practice outlining how you've been treated.

Some practices may "say" you need to see a doctor or two for counseling before you can opt-out. This is an unethical tactic, a try-on, to pressure you into screening.

I contacted the NHS Cervical Screening Authority about the treatment some women receive and they assured me all screening is elective and they respected our right to decline. They said some over-zealous doctors or practice nurses would be responsible for these phone calls, home visits etc. You don't have to provide a reason for choosing not to screen, unless you choose to provide one. (I chose to discuss my reasons with my GP, but if you go that way, make sure you do your reading, some doctors see it as an opportunity to challenge you)

If my GP was rude, dismissive or refused to accept my decision, I'd change my doctor and let her know why I was changing my doctor. I think it's important to challenge this sort of conduct, they do it because they get away with it, it works and gets most women screened. I'd sign the letter and include a paragraph saying you do not agree with the wording of the opt-out letter and the practice should review their attitudes and conduct. All screening has risks and hopefully, some benefit, and legally and ethically requires informed consent. It is inappropriate and disrespectful to female patients to harass them about screening or to present screening in a one-sided "must have" way. The use of scare tactics is also, inappropriate.

Few benefit from pap testing as the cancer is rare, always was, while a much larger number of women endure excess biopsies and over-treatment after false positive pap tests. It is for us to decide, not practice nurses or anyone else. For me it was easy, near zero risk of cervical cancer v a 77% lifetime risk of colposcopy and potentially damaging biopsy or over-treatment. (Now I know I'd be HPV- and not at risk) I've never screened and I'm now 55 and unlike most women my age, have an intact cervix. It's shocking to see the damage caused to huge numbers in an reckless attempt to help a few. ALL women matter...and anyway,there was never a need to harm so many with evidence based screening and informed consent.

Blue Moon, it's the practice that is in the wrong here, not you, you have every right to decline screening for any reason. The UK cervical screening program says it respects informed consent, they could even be asked to speak to the practice about their conduct. Weekly phone calls is harassment, which makes me think it's a practice nurse drunk on power. There is a disturbing thread on another website where practice nurses talk about chasing women to get them screened and boasting they "get" everyone. I challenged them and called them out on their attitudes, it's grossly improper conduct that needs to be addressed, I can only assume these people have not been trained or supervised properly or reflect dysfunctional thinking at the practice.

By the way, Dr Margaret McCartney, the Scottish GP and writer, has also declined pap testing and will also, decline mammograms when she turns 50. We're not alone...there are lots of women and men who decline cancer screening. You're right, men are treated differently, I think the profession is still very paternalistic.

These programs treat women badly and that needs to change, I think it starts with us, refusing to accept this treatment. Australia may introduce a call and recall system, it gives them more control over women and helps them achieve targets. I will seek legal advice if they refuse to remove me permanently from the registerI know in the UK women opt-out and then the letters start again 4 years later... you "can't" opt-out permanently...well, we'll see about that, it's another try-on. These people back away quickly when they're challenged, they know this is unethical and possibly, illegal.

By the way, most women cannot benefit from pap tests, you may be interested to know the new Dutch program will offer 5 HPV primary tests at 30,35,40,50 and 60 or self-test with the Delphi Screener, and ONLY the roughly 5% who are HPV+ and at risk will be offered a 5 yearly pap test. More women will reject population pap testing when they discover there is a far better way to screen for this rare cancer. More women who wish to screen will seek out HPV primary testing or self-testing. I know more Australian women are ordering the Delphi Screener online. MOST women cannot benefit from pap testing, it just risks our health, why on earth would we endure a lifetime of unnecessary pap testing and accept the high risk of over-treatment?

Sorry, about the formatting, not sure why that happened...

Hi eliz52,

I sorted the formatting out, I'm not sure if you were hitting the return key at the end of each line while typing but there is no need to as the box will "auto" wrap and there is a preview box below where you can check the format before posting the reply.

Regards,

Alan

Emis Moderator

Hi eliz52, thanks for your post. It's refreshing to hear from other people who feel the same way about this, and it does seem to be unprofessional and unethical.

You're right - it fits the definition of harassment. I told my practice that I currently have no intention of taking the test and if my circumstances change, I will contact them. If you are firmly told 'no' and continue to contact someone, that's surely harassment?

The NHS helpline staff have informed me that there is 'no way to stop' this behaviour, unless I cancel my registration with a UK GP practice, which I'm apparently also forbidden from doing for as long as I am resident in the UK.

It makes no sense. I thought that breast cancer was by far the more common cancer (I understand they can be linked, but why is the focus solely on cervical screening?).

I'm sure there is a significant number of women who have not been sexually active by 25, and it's upsetting to be constantly receiving HPV leaflets that take no account of this possibility. There needs to be more balanced information.

Blue Moon,

http://www.cancerscreening.nhs.uk/cervical/publications/nhscsp-gpg1.pdf

There is a section here on "informed choice" to opt-out of the program.

I think the helpline staff have NOT been very helpful, you can certainly opt-out. The NHS are a bit sensitive to criticism at the moment after they've been pulled up over a lack of respect for informed consent.

I'd get that form lodged and if the letters start again in 4 years time, sign another one or contact a solicitor.

If the practice keep hassling you, lodge a complaint in writing or go practice/doctor shopping, it's worth the effort.

I've found when you stand firm and you're informed, the pressure falls away. I've never tested, I'm now 55 years old and screening is never mentioned by my GP or the practice nurses. I've recently discussed breast screening with my GP, made an informed decision to decline and that has also, been noted on my file. I don't want to waste precious consult time debating the merits of screening tests I don't want...MY decision has been made and it's final.

I'd urge you to do your reading, knowledge will protect you.

Thanks Alan for sorting out the format.

Blue Moon, here is an article written by a doctor having the same problem...

http://www.independent.co.uk/life-style/health-and-families/features/why-im-saying-no-to-a-smear-7577967.html

Thanks for the links!

You're welcome, good luck.

I just read a piece by a doctor who says she wont have smear tests.

What she said made a lot of sense, she said the same for other tests.

I went along for one and the nurses said that as I have been celibate and never smoke she could not understand why I had wasted my time going there! But you have to remember they send these letters out to thousands of people. They are too busy to remember who thinks this and who believes that. They have to deal with them all the same.

I am glad i found this . I have felt bullied by receiving these letters and now sent a letter of complaint to my local health board. I am a virgin and also a regular blood donor so I know a thing or two about answering questions on my sexual lifestyle. However for nurses to say  'it doesnt hurt' is horrible.   I am not scared of needles and banter with blood donor nurses and even with the dentist when he is drilling. However a nurse invading my private space is another thing . Also smear tests dont really prevent anything . A blood donation saves another person's life maybe that of a baby or nice person .   What does a smear test do. I just hate this emotional blackmail on the smear test letter