Women, cervical smears, and manipulation

These are two recent adverts for cervical screening. The first relies on fear, the second relies on promotion of screening as a lifestyle choice.

It’s striking that neither relies on fair information to invite women for screening. What is the risk of missing a single smear and dying of cervical cancer? I don’t know, but it is very low (see Raffle). Why do we not give fair information and instead rely on fear as a motivation for screening?

The results of a campaign like this include harms. Sadly, these often go ignored. Strikingly, many women have complained on websites about their exclusion from screening because they are aged under 25. Many of these women feel that they too could leave their child an orphan because they aren’t eligible for screening.  It’s clear that in this group of women, screening is unhelpful and harmful. But because screening is presented by the NHS as a simple choice rather than a complex process and balance of harm and help, we invite women under 25 to see themselves as at risk simply because of their age, and we offer them fear rather than information.

The continued use of fear to scare women, rather than fair information to give us knowledge and the ability to make informed choices is an ongoing scandal. It degrades women. It needs to stop.

 

 

 

78 Responses to “Women, cervical smears, and manipulation”

  1. Liz Bestic February 5, 2013 at 1:02 pm #

    I can’t believe the language the GP has used in my latest call to screening! They messed up my last test because they caused a slight bleed which contaminated the sample so they have now written to me saying: ‘Your next cervical screening test is now due. Your previous results make it very important you come for the test’. What previous results? There weren’t any! I have rung them to say I think their use of language is unhelpful. Told to contact health authority. Too busy. Same old!

  2. Mitzi Blennerhassett February 5, 2013 at 3:15 pm #

    The Department of Health has recently confirmed that ‘if a local health authority deems recruitment to breast screening is getting too low it may offer financial incentives to GPs to encourage women to be screened’ – and women are not told about GPs’ vested interests (payments) in recruiting women to cervical screening.

  3. Kate Rayment February 6, 2013 at 3:44 am #

    As an informed woman, when it comes to screening I regard all of the ‘facts’ that come from the NHS and certain charities as ‘sales pitch’. I felt there was something wrong with this test right from the beginning, although I didn’t know much about it – few women really do – but the adage ‘if something seems too good to be true, it usually is’ popped into my head whenever I read or heard how *wonderful* pap smears were. Sadly, I only began to educate myself (Angela Raffle was a great starting point) on the harsh realities of this test once I had been ‘captured’ and pushed through the system. Unlike most women, I knew that I’d had a false positive and was angry with myself for getting caught.
    I think the powers-that-be knew right from the start that many women would be resistant to the almighty pap smear due to it’s invasive nature. So out came the propaganda machine… scaremongering, bullying, manipulated statistics, withheld information… it basically amounts to brainwashing, and it angers me that women are so easy to manipulate.
    Some of the *facts* printed in the NHS leaflet are laughable. If we were buying a product based on this kind of *information*, we’d be able to take them to court for false advertising!
    Something else that bothers me… how much money is spent on screening programs like this? The administration, incentives, testing, treatments, further interventions (cerclage etc), must cost a fortune. Everyone who goes through the system seems to believe that they were *saved*, yet screening only benefits a tiny minority and does a great deal of harm along the way. Screening using an antique like the pap smear, in my humble opinion, is like looking for a needle in a haystack. Could it not be that screening programs are leaving other areas of healthcare short of money? Are we robbing Peter to pay Paul? Is the NHS spending so much time, energy and money trying to ‘prevent’ cancer that patients elsewhere are dying through lack of care?
    Just a thought.

  4. Keith Walker February 6, 2013 at 1:24 pm #

    Whoever neglected to think about the added misery felt by a cancer sufferer upon seeing this poster, having missed or opted out of screening, is in some want of brains. If they did think about it, they are in want of decency.

  5. Malvolio February 6, 2013 at 6:24 pm #

    The Department of Health uses fear to promote vaccination, despite safety concerns. And GPs have a vested interest in promoting vaccination to all and sundry, whatever the weather. What is the risk of missing a flu jab, or an MMR vaccine or two? Any thoughts?

  6. Cherry Black February 6, 2013 at 8:09 pm #

    I managed a small success last month! After being initially told that there was no way to opt out of the screening program, eventually I managed to speak to a nurse who told me that I could fill in a form to take my name off the mailing list. She didn’t know where this form was, however as she had never used it. I insisted that she find out, and after waiting for nearly an hour one of the reception staff handed me the hallowed sheet of paper.
    So now I’ll just have to wait and see if I get any more letters “inviting” me for screening.

    By the way, my last GP practice told me that I could only opt out if I’d had a full hysterectomy (including cervix).

  7. Mary February 6, 2013 at 9:44 pm #

    When I visit my GP, I am routinely offered a smear test, Mirena coil or we have a discussion on why I didn’t attend an appointment the Breast Screening Clinic made for me (I didn’t ask for the appointment – why should I go?)

    I dislike the pressure that is put on you to have a smear test. I understand it’s a rare cancer and yet the advertisements above would lead you to believe that you taking a huge risk by not screening.

    I have at most 15 minutes to speak to my GP. It is too much to expect those minutes to be focused on the reason for my visit?

  8. Scott Granger February 6, 2013 at 11:08 pm #

    Keith, the information leaflet states very clearly that regular smears cannot prevent every case of cervical cancer. Screening produces false negatives as well as false positives. If I were one of the people who’d trotted obediently along for every test and still got cancer, I’d be furious if I saw one of those posters. They’re downright insulting.

    Cherry, my wife rejected the smear test many years ago – she thinks the whole program is a disgrace.
    She heard from a friend about the disclaimer form, but her GP told her such a form didn’t exist! Eventually, she found the website of her PCT and printed out a copy of their ceasing policy. On the list of reasons why a woman may be withdrawn is ‘patients informed choice’. She took that to her GP, slapped it down on the desk and called him a liar!

    By the way, Dr. McCartney, is it true that the incentive payments for smears are gone now? I keep hearing about a 70% target. Does the surgery get penalised if they fail to meet that target? Enquiring minds need to know!

  9. Margaret McCartney
    margaretmccartney February 6, 2013 at 11:22 pm #

    yes, its true, GPs are incentivised to meet targets
    http://www.nhsemployers.org/Aboutus/Publications/Documents/QOF_guidance_GMS_contract_2011_12.pdf from 40-80%.
    Additionally, the letters which many health authorities send to women to ask them to come in for a smear appear to come from their GP. They don’t – they come from the screening service. I think this is misleading. It’s apparently a contractual issue, and the BMA have told me that they will look into it, but it’s not a priority for them. Alas.

  10. Kate Rayment February 7, 2013 at 6:30 am #

    Thanks Dr.
    Yes, I noticed that the invitations are now coming from the PCT ‘on behalf of’ my local surgery. They’ve been sending them every three months. What part of the word ‘No’ do they fail to understand?
    Indeed, Mary – the pressure you’re put under to comply with recommendations is appalling. One of my workmates thought that smears were mandatory! So much for ‘informed choice’.
    My health hasn’t been too good of late, but I’m loathe to see a
    doctor – the last appointment I had with my GP lasted all of three
    minutes, and I had to jump through hoops to get that appointment in the first place. Of course his most pressing task was to persuade me to have a smear, never mind the actual problem I went in with!
    You know, if you get an genuine invitation, to a wedding, for example, there’s always the option to say ‘no thank you’. The smear invite doesn’t give you that option – I don’t know if it’s the national standard, but the letters I get have an attendance slip at the bottom. So, yes, they want you to make an informed choice, but they expect you to accept. And if you decide, for whatever reason, you don’t want to be part of their precious system, you’re pursued relentlessly.
    Similar issue with breast screening and those generated appointments.
    ‘Please come to my dinner party. There’s no obligation, of course, but I’ll be expecting you and setting your place at the table.’ Coercion much?

  11. Teresa Lewis February 7, 2013 at 9:57 pm #

    Using the term ‘invite’ to coerce women into having breast screening and smear tests is an example of Orwellian double speak or NLP used for unsavoury purposes. I am annoyed about the pre arranged appointments for three yearly mammograms and this is one of the reasons why I declined the first ‘invite’ to have one as well as the mobile units in car parks often close to hospitals with X-Ray departments. The real reason for these mobile units is not accessibility but making it as visible as possible. I don’t know why more women haven’t spoken up against this. They simply don’t turn up and those are the ones who think for themselves.

  12. Elizabeth (Aust) February 8, 2013 at 8:49 am #

    I cannot understand how they get away with it, I suspect if more women made formal complaints or sought legal action, they’d have to think twice. Informed consent is a legal right of men AND women. We have breast screen clinics in department stores here, I was offered a quick “screen” while I was making a purchase of nightwear. I wrote to the department store and made a formal complaint, they replied and said they were committed to women’s healthcare and all consent matters were a matter for Breast Screen. I think that’s naive when I was invited to screen by one of their employees.
    I’m so tired of the dirty tricks used to capture women…and I’m sure a call and recall system will be introduced here with our screening rates falling…or more incentives for GPs. I welcome the day they “call” me and keep calling me….talk about nudging a sleeping tiger. These campaigns are so offensive (and unethical) and insult our intelligence.

  13. mary February 9, 2013 at 7:42 am #

    Keep it up Dr McCartney. You have a lot of fans who appreciate your honesty. And what is it about the Mirena? It’s suddenly the greatest thing since sliced bread. Doctors are so keen for you to have one. But if you ask to get it out, they come up with all sorts of excuses why it can’t be removed. One woman complained that her doctor couldn’t because he didn’t know how! I think part of the training for inserting, would include removing, wouldn’t you? Very fishy if you ask me.Obviously there’s some kind of kick backs involved.

  14. steve February 9, 2013 at 6:20 pm #

    Hi Mary – no kickbacks involved – although there is a payemnt attached to doing it. But that applies to dozens of things in UK general practice – it’s the way our contract is set up. It doesn’t mean we are pushing it just to get paid – that’s a slur on our professionalsim which has no basis in reality. We get paid for all contraceptive services we provide.
    However, you are right, Mirena should only be inserted and removed by those with training (although removal is pretty straightforward) but training would have included both procedures – so if you’re trained to put it in you’re trained to take it out.
    The reason why it is promoted is that long-acting contraceptives are being recommended at a national level by family planning specialists and Government health departments. Mirena is only one form of LAC but it is highly effective and can be left in for a number of years. It often stops periods altogether. So for a number of reasons many women find it an ideal choice. But it’s not for everyone and a significant number of women cannot tolerate it because of bleeding issues.
    Of course, no-one should be coerced and all women should be given information about all methods of contraception, including natural family planning, with the pros and cons of each highlighted to allow a truly informed choice.
    The one thing that does disturb me is the number of couples who are considering sterilisation in which both the woman and the man think it is the woman who should be sterilised. Personally I always try to resist this and instead try to convince them that if they are serious about sterilisation then it should be the man who has the procedure!
    Anyway, back to the issue at hand. The use of fear to promote screening is utterly wrong – particulary when there is little or no evidence to back up the frightening claims.
    Some forms of screening are effective, others less so or not at all. What we all need is accurate information to allow us to make an informed choice and that is waht is not happening.
    Sometimes we as doctors have to lead by example. So for here’s a wee story.
    A man came to see me to ask for his cholesterol to be checked because an artilce in the Daily Mail had convicned him it was a good idea. He was a year younger than me but otherwise his risk factors were idential to mine – he was not obese; he didn’t smoke; he consumed little alcohol; he had no medical history of note; his blood pressure was normal; and he had no significant family history. I told him that I had never had my cholesterol checked and I had no intention of ever doing so because if I developed heart disease or diabetes or had a TIA/stroke I would just take the statin anyway. This approach is logical and based on the evidence. He decided not to proceed.

    • Simone January 14, 2016 at 11:13 am #

      Cripes I can’t believe you discouraged someone from taking preventative action in favour of waiting from something potentially problematic to happen and then just taking a wonder drug. Any incentive to use statins? If someone reads something and decides they would like to do something proactive for their health and they need a bit more info, then what’s wrong with that? Your patient asked for something, regardless of where they got the information from and you denied him the choice, when it’s a simple blood test. Using your own health to inform your patient’s choices is not helpful – this isn’t about you. Whatever happened to patient centred care?? Give the evidence, not what you would do…

  15. mary February 9, 2013 at 8:47 pm #

    Steve, I find it rather puzzling that my GP got pretty annoyed at me that I didn’t want to consider other forms of contraceptives that he was trying to “sell”, including the Mirena. I’m happy with the pill, I’m happily marrried, a “mistake” wouldn’t bother me in the least, yet my GP kept trying to get me to try another form of contraception when I specifically asked for the pill. In the end he got angry and told me I was having a breast exam the next time I came back. It seemed more as a threat and punishment for my contraceptive choices than any concern for my health. Let’s face it, a doctor is going to get paid a lot more inserting an IUD than wrting a script.
    But whatever the issue (pap smears,contraception) as a woman I find doctors, or I should say male doctors have a real problem accepting my choices. They can’t accept a “no” the first time. I have to repeat myself and get into an argument.
    There should be training for male medical students to respect womens choices and to stop trying to tell us what to do.

  16. steve February 9, 2013 at 10:15 pm #

    Hi Mary – please don’t tar all us blokes with the same brush! I would never have treated you in the way that you describe and I am appalled by what happened to you. The actions of this doctor were unacceptable in my book and if youI feel as strongly as you appear to you should complain. I constantly try to give as much choice and info. as I can – and even when I feel strongly about something I just bite my tongue, give people all the facts and let them decide. Then I respect their decision and try to support them as best I can. My job is not to moralise or impose my ideas or beliefs on others. My job is to guide them through the maze of modern medicine and help them decipher the facts from all the bulls**t that swirls around out there. That is what I hope I manage to do.

    • Simone January 14, 2016 at 11:14 am #

      Please see your previous advice to your patient Steve…not imposing any ideas?

  17. Kate Rayment February 10, 2013 at 6:54 am #

    Steve, would you be my GP please? Personally, I’ve found female GP’s worse than the males. I actually got yelled at by one female GP for refusing a smear test – I had gone in with an unrelated health problem and she refused to help me after I’d declined the smear.

    I think the scaremongering involved in female cancer screening is what’s doing most of the damage – fear clouds your judgement.
    You only have to look at the breast screening review – some of the comments made by the women in the group made me despair of my gender! Seemed that they were so frightened of this disease that they couldn’t see the wood for the trees.

    • Julie August 4, 2015 at 11:45 am #

      I have just had a letter from my doctor’s surgery “We are advised by the Primary Care Support Service, that despite being sent ain invitation and reminder letter recently, you are yet to book for a cervical screening (smear) test………….”

      This letter gives no option to opt out. I am nearly sixty, and haven’t had a smear test for twenty five years, and the last time was because the GP pressured me while I was there for something else. One of the many reasons I don’t ever want another smear test is that I was expecting to get a letter saying I was clear, but didn’t and eventually telephoned the doctor’s receptionist, who said they only contact you if there is a problem. Of course, issues like possibly unsterile specula and instruments that have been inside millions of other women are more important, and as I haven’t been sexually active for about fifteen years, and am approaching the age (65) where they thankfully stop pestering you about smear tests, for me the risks of taking the test outweigh any possible benefit. I have never had any problems down there, and don’t want to start having other people’s, I have enough of my own.

      I have other health problems, and am a bit worried that my doctor will throw me off their books.

      Does anyone know if the GP will keep on pestering me about the smear test? How does the system work, is this the final letter, and do they give up?

  18. steve February 11, 2013 at 2:45 pm #

    Hi Kate – no problem if you move into my practice area – but I suspect that would be an enourmously distant move for you :-)

  19. Elizabeth (Aust) March 3, 2013 at 11:27 pm #

    Some researchers here have come out and said we should raise our screening age to 25. We got a scary story in the paper this weekend, a 23 year old saved from cc by an early pap test. I suspect we’ll get more of those stories. Some facts might be nice for a change. One particular group fear women will die as a result of the change. I hope the review Panel and the Govt ride out the pressure, this change must be made. If you look closely at these awareness and survivor groups, you often find vested interests.
    Another worrying development, some GPs are saying behind closed doors that they use the pap test to opportunistically screen teenagers and young women for STIs…yet I don’t see them calling for teenage boys and young men to have unnecessary and potentially harmful prostate checks to opportunistically test for STIs.
    The attitudes are inappropriate, unethical, insulting and infuriating. Doing sneaky STI checking is now the reason some give to keep pap testing very young women. One male doctor posted on a medical site, “old enough for sex, old enough for pap testing”…he does sneaky STI testing on teenagers and young women.

  20. Ann UK March 17, 2013 at 1:42 pm #

    The poster with the crying boy made me so angry I spoofed it:

    http://www.freeimagehosting.net/8cl9f

    a blank template:
    http://www.freeimagehosting.net/t/1ic1r.jpg

    guidelines:
    http://www.cervicalscreeningproject.com/whatdidwedo/developandtest/phase2/servicepush2.php

    Reading the sampling for the focus groups it seems they gave up on the more educated folk. In social policy land the prejudice about women being all irrational and unable to make their own decisions now has social class dimensions to it. How to make women comply? Show them a crying child.

  21. Scarlett March 28, 2013 at 6:06 pm #

    Dr Margaret, it would be really helpful if you could post some information we could take to our GPs to help with refusing screening. I could virtually see the look of understanding on my doc’s face when I said I never have sex without a condom as well as the Pill – and still she insists I have it. I haven’t had one recently – I filled in the form and the letters stopped – but every time I go for my Pill, I dread the conversation. It makes me want to get the Pill privately – I’d rather pay if a private doctor won’t subject me to this bullying. An advice page on how women can resist pressure without being labelled a difficult patient would be really helpful.

    • Margaret McCartney
      margaretmccartney March 31, 2013 at 6:26 pm #

      hello
      I’m sorry about your problem with this. YOu have a few options; see another dr in the practice, write them a letter outlining that you want to make an informed choice, wait for the INformed Choice in Cancer Screening http://www.informedchoiceaboutcancerscreening.org/ to report, which is going to update all the leaflets and hopefully make plain that it’s an individual informed choice; the last time I went I just said ‘I’ve made an informed choice not to have’ and there was no problem. I bet Elizabeth has some more ideas.

  22. Elizabeth (Aust) March 31, 2013 at 9:00 am #

    I find it incredible that a doctor could “insist” on a woman having an elective screening test, does she also, insist her older patients have mammograms and bowel cancer screening? Is she prepared to accept full responsibility for any distress or harm flowing from a false positive and over-treatment? (which is MUCH more likely than being helped by this test)
    I wouldn’t use a doctor who thought this was an appropriate way to treat her patients.
    I think finding the right doctor is so important. Screening is never mentioned to me, my file is clearly marked. It might also, say I’m a difficult patient, so be it…screening is my decision and I don’t want it.

  23. Elizabeth (Aust) April 2, 2013 at 11:55 pm #

    Ideas…
    When I was young I have to confess I simply avoided doctors and luckily, I was in good health. In mid life though, I’m simply not prepared to go without medical care to avoid this insane pressure to have pap testing.
    The answer for me was shopping around to find the right medical practice and doctor…when the topic arose, I explained firmly and politely that I made the decision long ago not to screen. It was clear I knew what I was rejecting and was accepting full responsibility for that decision…you’ll soon know whether you can work with that doctor.
    We’re not obliged to explain why we don’t want pap tests, a simple NO SHOULD be enough, but that’s rarely the case. I felt my doctor was reassured after our discussion and it was worth the trouble…the subject was closed. I’ve also, declined breast screening. (still not sure about bowel cancer screening)

    Personally, I think dynamics in the consult room are important…do you feel you can talk to your doctor? Do you feel comfortable with your doctor? Do you have a respectful two-way relationship? Does he/she listen or talk over the top of you/dismiss you/lecture/patronize you?

    I also, know women who’ve sent a letter first, to test the water…some women tell lies, “I get tested at family planning etc” Others get the Pill online and find pap tests are rarely mentioned if you’re not asking for the Pill, that’s the consult that often triggers the pap test “discussion”. Others change their doctor all the time etc…
    I don’t blame them, the system is so unfair you have to do whatever works to get medical care. It shouldn’t be necessary though, I really resent the way these screening authorities have corrupted the doctor-patient relationship. There is no doubt in my mind that women’s health care is the poorer because of these screening programs…or at least, the way they operate with no respect for our right to real information and to say NO.

  24. Laura Evans October 31, 2013 at 5:32 am #

    The arrogance of the NHS and a number of the healthcare professionals within it is staggering. I recently tried to get a BCG vaccination for my son – which he is entitled to under the recommendations of the policy on it due to having a ‘parent or grandparent born in a country with annual incidence of over 40/100,000’. Despite being armed with this information and the policy being perfectly clear, I was met with constant rebuffs, one GP despairing, “why do you want to? The TB incidence is just so so low in this country!” Think I might use that one back on her the next time I’m turning down cervical cancer screening as that incidence is lower still. In both cases the assumption that I’m an imbecile is their starting off point for dialogue. Not the correct skin colour seems to be their only reason to deny my son TB vaccination and I’m pretty sure that’s not legal.

  25. Michelle Voutt April 25, 2014 at 12:19 pm #

    Myself and my partner received the following texts from our GP surgery yesterday. Mine contained the wording “breast screening”, my partners contained the wording “cervical smear screening”:

    “In accordance with new National Guidelines, anyone not attending routine breast (cervical smear) screening will be deregistered from their GP practice. In order to avoid this unnecessary event we urge you to book promptly when you receive a letter inviting you to have this done st.davidspractice@nhs.net

    I was under the impression that any letter I receive was an “invitation” for me to attend screening, not a threat to deregister me thereby denying me access to a GP if I don’t.

    I was put on HRT last week, at my request, and it was suggested that I have a smear test as part of the health checks carried out before this was prescribed. I felt like a piece of meat, and was very painful. My obvious discomfort appeared to be a surprise to the nurse, who offered little in words of reassurance. As a 54 year old lesbian I have always considered myself to be low risk, but not no risk. However, after this very negative experience, followed up with a threatening e-mail I will not be returning.

    • margaretadmin April 25, 2014 at 4:19 pm #

      hi Michelle, would you be able to email me a copy of the letter? margaret@margaretmccartney.com. I would really love to know what national guidelines these are….

  26. Michelle Voutt April 28, 2014 at 1:29 pm #

    Hi Margaret ,

    It wasn’t even a letter, it was a mobile phone text – even more disturbing! I also received the follow up text messages:

    “Dear partient, following on from the text yesterday on screening and registration, we have had a variety of issues raised by patients. We aim to resend a revised message to clarify all these concerns by end of play today. thankyou. st.davidspractice@nhs.net

    and later on that day:

    “NHS england emailed stating that they will deregister patients if they dont attend for their breast screen. We are strongly against this. If you have been screened dont worry, if you are due one you will get an appointment. If you do get deregistered, feel free to reregister anytime. st.davidspractice@nhs.net

    I have lodged an official complaint to the NHS regarding the first message received, and have asked that they provide me with a copy of the National Guidelines. I have received a reply confirming that my complaint has been given a reference number. Once I have received a proper response I will let you know.

    I am particularly concerned that both the original message and the follow ups, both appeared to have been sent from the St David’s practice, despite their assertion that they were “strongly against” this guideance.

  27. Elizabeth (Aust) November 13, 2014 at 11:04 pm #

    There seems to be more “talk” about informed consent in women’s cancer screening, but it seems to be business as usual with these programs.

    This comment was left on another website by a concerned and angry woman (and informed)

    “New guidelines from the Scottish Cervical Screening Programme on opting women out of the programme.
    It is staggeringly patronizing, and seems to be confusing women with learning difficulties with women in general. A face to face consultation must be held with the woman signing the declaration in the doctor’s surgery, so that the doctor can tell you about the benefits of screening, (no mention of harms), and assess whether you are of sound mind, or not too mentally subnormal to have a mind at all. No sending opt out letters to people to return in the post.
    It also says that although a woman has a right to choose, she can only opt out with the doctor’s agreement. In other words, only if the doctor says so.
    I was disappointed to spot that Scotland will only be changing to the slightly less stringent screening arrangements that English women have after 2016, well after the more civilized countries have introduced HPV self sampling, no doubt.”

    So much for informed consent.
    Of course, most of these “requirements” fall over when challenged by an informed woman, all cancer screening is elective and legally and ethically requires MY informed consent. Of course, the program has always promoted this is something all women must do, no “excuses” so many women won’t know they can challenge this outrageous manipulation.
    http://nhsforthvalley.com/wp-content/uploads/2014/02/Opting-out-Women-from-the-Scottish-Cervical-Screening-Programme.pdf

  28. Louise January 30, 2015 at 3:59 pm #

    I refise to participate in the national breast screening program. Last night I was furious to receive a telephone call from a stranger informing me I had a medical appointment in February.
    I had no idea what she was talking about and she did not provide me with her name. It turned out to be a call about breast screening. Despite my husband emailing the authority and cancelling the appointment NHS England gave a complete stranger my personal data and got her to make an unsolicited telephone call to my home.
    The number was with held – I call this harassment from the NHS and it makes me determined not to comply with their dubious screening.

  29. Beth February 5, 2015 at 1:28 pm #

    I have a real issue with the pap test due to an extremely traumatic experience caused by being tested too early (age 18) and subsequently being sent for a colposcapy and biopsy where I was treated very badly (students in on exam, told to be quiet when I shouted out in pain during biopsy etc) only to then be told all was fine. I have since learnt none of this should have happened but at such a young age I just went along with it all like a little sheep.

    I have had a normal test since but do not trust the screening programme one little bit. I have tried to do research pre the UK screening programme being introduced in order to find out how much the incidence rates of cervical cancer have actually REALLY fallen since the programmes introduction. But I can never find anything. I have read time and time again that the screening programme saves 5000 lives per year in the UK but I can find nothing to back these figures up? In fact allot of the claims made in the so called ‘information’ leaflets seem to be made up with figures plucked out of the air? Or designed to push women into the test.

    I have tried to speak with my nurse and Dr and the same in other practices I have been a patient of, but I get an attitude I can at best describe as obstructive. How dare I ask these questions? Me the lowly person who is subjecting my body to this test.

    With regards to the risk factors mentioned I would say I am at relatively low risk, however I have always said if I can find the information to make an informed decision I would have the test if I thought it of benefit to me personally. But I just cant find any information, non biased factual information, anywhere. The internet and media is full of scare campaigns, my medical professional will not help me? It just makes me feel so frustrated and extremely anxious as I do sometimes bow to the pressure and think I must be putting myself at risk?

    Where I live in the uk the incidence of risk for CC is low, the last data I can find shows around 130 cases (of the 3000) diagnosed in the uk are in the country I live in. Of the few million women who live in Wales this is such a low number. I cant find anything that states how many of these women were screened and how many were not? Neither can I find any figures on how many of the 3000 cases were women who had/had not been screened. What I can find are many women who feel they have been saved from this horrible disease through treatment of cell changes but then there is conflicting information that states allot of these women would have never gotten cancer?

    I feel like I am in a whirlwind of misinformation and I cannot make an informed decision as I cannot find the information I need! How many lives (with backed up factual states) does the smear test actually save? 1 OR 500 OR 5000? I need this information so that I can truly weigh up if I am happy with my own risk. And it is simply not there.

    I believe that I will continue to decline my appointments but because of the lack of a ‘pro’s and cons’ type of information being available to me. I will always doubt myself and I do not want to live the rest of my life feeling like this. I am not uneducated, I am not stupid but I do feel like I have become a little neurotic about all of this. The UK cervical screening programme has made me feel this way.

    • margaretadmin February 8, 2015 at 7:20 pm #

      hello, sorry to hear this. are there no other doctors or nurses in the practice you can speak to and discuss with. I don’t think very accurate data on what you are asking exists, as most work is based on modelling rather than real life outcomes. I think it’s fair to say that cervical screening and the treatments they lead to do reduce deaths from cervical cancer, but also lead to some women being treated for changes that would never had led to any problems. With HPV primary screening being piloted, this is likely to change the statistics more, and I understand that more data will be available once the pilots are completed. http://www.cancerscreening.nhs.uk/cervical/hpv-primary-screening.html I’m sorry I can’t help more./

  30. Apocalyptic Queen February 12, 2015 at 7:01 pm #

    Hi Margaret – recently discovered your blog. Have read your work and that of Angela Raffle and Professor Michael Baum. I made an informed decision to opt-out of cervical screening. Consequently, I’ve never been screened and am content with my decision. I’d like to thank you for bringing this issue to women’s attentions – although sadly, I feel that there are far too many who blindly follow NHS guidance on this matter unquestioningly and feel that the rest of us should follow suit. What I wished to ask you is, do you know whether the cervical screening programme has been asked to update its advice to patients? I’m sure I read on the BBC website earlier this year that a report had recommended that the NCSP update its information to include more evidence on false positives and unneccessary treatments, much like the breast screening programme was ordered to do a few years ago? It’s about time that the cervical screening programme do this particularly given its prevalence as a relatively rare cancer in comparison to breast cancer. Do you know if and when these guidelines might be updated?

    • margaretadmin February 12, 2015 at 11:25 pm #

      hello, the leaflet was updated last year, but didn’t go through the same process as the breast screening leaflet went through. I respect women’s informed choice – either to have screening or not – and am aware that upheavals are likely again as primary HPV testing pilots finish and report. This is likely to lead to shifts in false positive/negative rates and new information for women to consider. Perhaps they are waiting for this before rewriting again….

  31. Cassandra February 15, 2015 at 10:21 pm #

    Thank you, thank you, thank you. Thank you all. Thank you for articulating many of the thoughts I’ve been having for 25 years. I thought I was in a minority of one.

    I was bullied very badly by a (female) GP many years ago for missing a smear test. I’d made a conscious decision to miss it, never having had sex. I went to see my GP about a minor skin infection. I wasn’t at all prepared for the tirade that followed about my missed smear. Further humiliation fell upon me when she insisted on knowing exactly why I didn’t see the necessity … I’m proud to say I looked her straight in the eye and told her. She did have the good grace to blush, but by that time she’d dug herself so deeply into her position there wasn’t any chance she would relent, and she denied I was low risk anyway. Needless to say, I never returned to the practice – that doctor/patient relationship was well and truly done.

    I was much more traumatised by this uninvited and hugely intrusive discussion than I was by the two rather badly performed smears I’d previously had. I haven’t had a smear test since, and in fact avoided any medical treatment (other than in A&E) for more than 20 years for fear of a repetition. I am still so angry about this incident that I get childish satisfaction from knowing I’ve been an imperfection in the screening stats for more than 20 years. Here’s a thought for NHS England – maybe if I hadn’t been bullied, I’d have just rolled my eyes and got on with the tests.

    I consider myself to be at miniscule to zero risk, but I can’t be sure because we’re just not given the facts. The last leaflet I saw (sent out with the ‘invitations’ for cervical screening) was nothing short of scandalous – if I remember correctly, it told me that as ‘most women’ do attend for screening, it’s best that I do, too – am I supposed to believe anyone with more than primary school science has endorsed this? Why would what most women do necessarily be applicable to me? What I want to see are relevant stats and risk ratios, without bias or an underlying agenda.

    One more thing – to repeat and heartily endorse what Elizabeth said in her post above – we should not have to justify why we’ve made our decision, a simple ‘no thanks, not this time’ should be enough.

  32. Linda March 20, 2015 at 7:03 pm #

    Hi. I went to the doctors recently as I’m having trouble with my neighbour and have been very stressed. It was a new doctor to the practice and I had never met him before. Without even introducing himself or acknowledging my presence as soon as I sat down he turned from his screen and said to me ‘you haven’t had a smear test for five years I can do one for you now or book you in for one.’ I was totally taken back but I said no I don’t feel well and began blurting out everything that was wrong with me. He soon realised something was wrong and we talked about going on antideps and to come back and see him in a couple of weeks.
    A few days later the practice nurse rung and said she wanted to book me in for my ‘annual check’ I said I’ve been with you for twenty years and have never heard of such a thing. She said I needed a blood pressure check, my weight taken, and my height recorded as well as one or two other things. I asked what were the other things so she said its time for your smear. I said I won’t be having one but I will come in for the other things. I did go a few days later and the moment I got in she said I would have to have a smear in a manner that made it sound as if she was giving me an order. I said I won’t be having one she started giving me a lecture on how horrible cervical cancer is an that I should be more responsible for my health. I left after saying I was too ill at the moment but would come back.
    A few days later she rung me at home and said ‘the doctor has instructed me to ring you, you are seriously over due for a smear and you will have to have one this week. I have a gap tomorrow morning for you’
    I said no. I couldn’t face it. I am too ill I was only contemplating killing myself the week before. This couldn’t be that urgent. She said because I had left it too long in between smears there was a chance I had developed cancer. I couldn’t believe what I was hearing. On top of everything else!!!! Now I had cancer. I managed to get her off the phone by saying I would have one in a few weeks. I felt like a naughty child being caught out doing something wrong. It was a weird feeling as she is a lot younger than me.
    It was then I stated doing research on the internet. Over the past few weeks I have been on a very long journey of awakening.
    When I was 22 back in 1987 at a visit to the doctors he said you will have to have a smear all women who are married have these to get the pill. I let him because I didn’t know any better. Over the years I got letters reminding me to go which dutifully and believing them to be mandatory I went for them even though I hated them.
    Imagine my shock to learn I had a choice all along. That as a women in a monogomous marriage where both partners were virgins I had virtually no chance of getting this cancer. For the last few weeks I have been reading everything and anything on the subject. My emotions have ranged from sadness that someone has got away with subjecting me to those exams against my will to out right anger that there is absolutely no chance of getting back at them. I cannot believe that I ( a reasonably intelligent woman ) has been hood winked for so long. I must have been stupid. I could kick myself for allowing myself to go through this for so many years. I’m glad my last one was at 45 and that my latest one is well over due. I will not ever be having another. My vagina could be trailing along the floor behind me before I let any of those bastards near me ever again. I’m so upset. Because somewhat naively I wanted my husband to be the only person whoever touched me there. Romantic nonsense I know but I had no idea as a young women that an endless procession of people had been queuing up to get in my vagina. I feel sad at my loss.
    I have joined numerous forum to express my anger. Since going on the internet I have become aware of the work of other women – Margaret Mcartney, Elizabeth (aust) who must have thought they were lone voices in the wilderness for so long. I thank everyone who has supported me over the past few weeks as I am not a well person (the doctor who coerced me so long ago must have known that)
    I am going to make it my business to go on all the forums and inform women of what is going on and to take a firm stance against the horrific treatment and complete disregard the medical profession has of women. This test is elective, no one has to be forced into doing something they don’t want to. And as for the doctor and practice nurse trying to ambush me when I was at an all time low. Shame on them. But they didn’t get me and now they never will. There are some excellent site on the internet. ‘forwomenseyesonly’ is fantastic. I have been made to feel really welcome by the friends I have found there who have similar experiences to mine.

  33. Linda March 21, 2015 at 3:51 pm #

    Hi Moderator. so sorry was my comment not accetable in some way? Linda.

  34. Elizabeth (Aust) March 24, 2015 at 8:45 am #

    I reported a doctor to the Medical Board recently, he made this statement on a medical forum:

    “My practice is to insist on the PAP test when due or no pill prescription, or proof of result from another practice.”

    In my opinion, this conduct negates consent. The Medical Board received a different story from the doctor, he follows the ACGP recommendation to offer a pap test to women on the Pill and respects a refusal. Interesting his comment on the medical blog sounds more like medical coercion.
    Anyway, the Medical Board have accepted his statement, even though it doesn’t sit with his comment to other doctors, and have closed their file.
    Hardly surprising, few come to this subject with clean hands. The AMA continue to make public statements linking the Pill and pap testing and one male spokesmen made a statement last year that seemed to be endorsing medical coercion. “I’d be surprised if many doctors prescribed the Pill without a current pap test on file”.
    I suppose if they take action against this male doctor, they’d also, have to tackle the AMA and others. In my opinion, the system is rotten from the bottom to the very top.

  35. kat rehman April 24, 2015 at 2:05 pm #

    I’m so glad I came across this site and wanted to share my experience. I’ve not had a smear in15 years and am not about to start but I changed practice a few years ago. I ignored letters asking me to book a smear and was asked by Gp in consultation about another matter if I’d had it. I said no I wasn’t going to. Thankfully he dropped it.
    Anyway last week another “invitation ” dropped through the letter box and I read on websites procedures had changed. Ignore 2 written “invitations ” and the nurse will be phoning you. I would find that even less acceptable than the written “invitations ” and figured anyway the nurse was probably very busy and didn’t need to be chasing me. So I wrote a polite but firm letter stating I would not be having a,smear, that I wanted no more communication on the subject and I wouldn’t sue if I got cancer, and if I did have any problems with my intimate health I’d book a gp appt. It worked because I got a form to sign back saying I understood implications and wanted to resign from the program. I sent it back. Maybe it’s worth a try for you too?

  36. Linda May 1, 2015 at 10:23 am #

    Hi Kat. Margaret Mccartney is a leading light. Her work has helped a lot of women. However while this blog is very helpful it is not accessed by women all of the time. You can find most of us on ‘forwomenseyesonly’ Please feel free to join our ongoing and very lively discussions.

  37. kat rehman May 8, 2015 at 2:55 pm #

    Thanks Linda I’ll try that one.. To update, I. Sent the signed disclaimer back to Gp and was dismayed this week to receive another “invitation ” this time from health authority. With leaflet. I phoned them and they said they’d not had anything from Gp. I immediately wrote to health authorities saying I would not have a smear and requested no further “invitations ” or contact. I also asked why in the leaflet which states it aims to help decide whether to screen or not, why no information is given on how to opt out of what you never opted in for! # got letter today saying I’d been removed from call list here’s hoping… I’ve got Margarets book and I’ll try thewomens eyes only. Thanks!!

    • Linda May 10, 2015 at 3:29 pm #

      Hi Kat. I can’t wait to see you on our website. Don’t worry about opting out – as you said you never opted in. You are an informed woman now – one of us – and no one can force you now in to anything. This knowledge empowers us women in the doctors consult room. Never again can we be forced – coerced into any thing we don’t want. They just hate that. They might try to get you in on the pretext you have to have a chat with them before you can full opt out. Don’t be taken in. Its just a ruse to brow beat you into submission. See our research at ‘forwomenseyesonly’

      • margaretadmin May 10, 2015 at 10:11 pm #

        hey- there are lots of GPs who I am sure will want to help you. Many doctors dislike/loathe the GP contract as it stands. Please talk to your doctor and let him/her get on your side – partnership is the way to go. all best. mgt

        • Adawells May 20, 2015 at 5:47 pm #

          Margaret, I appreciate all your hard work, but I do very much sympathise with Linda’s anger on this. There is so much dislike and resentment about the cervical screening test, and the way it has been carried out on all women. It is very difficult to see the doctor as “on our side” much of the time.

          I recently read an article about compulsory smear tests in Brazil, which are now a legal requirement for a woman wanting any civil service type job. A primary school teacher of 25, and also a virgin, reports how she is forced, either to go to her doctor and have a smear test, or she must be certificated a virgin so as to excuse herself from testing. Just to teach in a school!

          At the same time a 23 year old woman in Scotland has recently posted for advice on a medical website. She is also a virgin and after having ignored her age 20 call-up for cervical screening she is now facing pressure to attend the second. She too, has two choices. Either go ahead with the test, or report her virginity to her GP in order to be excused. Both women report feeling utterly humiliated and ashamed to have to disclose their virginity.

          What is the difference between these two situations? I see none.

          Have UK women no more rights than women in developing nations? The Scottish lady went ahead and had the smear test. She said it was painful but at least it has stopped the nagging to “get it done”.

          What will it take to get these “screening zealots” to acknowledge the misery and violation of human rights these programmes cause, and appreciate the predicaments they often put women in?

          • Cassandra May 23, 2015 at 1:08 pm #

            Well said, Adawells. That is precisely the trap you can find yourself in.

            Many years have passed since I was first confronted with this dilemma (see previous post) and as I get older, I haven’t been able to avoid GPs altogether, so recently I’ve been faced with it again.
            These days I’ve made a conscious choice to tell the truth, rather than ‘pretend’ and go through with the test. This is very difficult (I thought I was going to pass out during one discussion), and undoubtedly affects the subsequent patient-GP relationship, but I won’t be bullied again. I look back at the young woman I was, and I do it for her (anger can see you through a lot). I sympathise deeply with the young Scottish lady you mention in your post, Adawells.

            The logical possibility that not all women are sexually active is admitted by the screening service themselves – they say so here:

            http://www.cancerscreening.nhs.uk/cervical/faq09.html

            But the opt-out isn’t available until you’ve been pulled in by your GP to justify your virginity. This is regardless of whether or not you want your GP involved in your sexual health (I happen to think it’s none of their damned business).

            The only conclusion I can come to is that the screening service understands very well that this situation will arise, but it just doesn’t care – after all, it only affects a small minority, and they’re relying on such women being shamed into taking the test as the lesser of two evils. Shamed and silenced. Who are you going to complain to? It’s public policy you’re going against, and it’s the last thing you’re going to want ‘outed’. Manipulation indeed.

            As Adawells said, it is deeply unethical. My own GP can’t justify it except with reference to it being for the benefit of ‘most’ (ie other) women. As for that opt-out – I’d guess it’s not there for patient choice at all, but only to give the scheme a veneer of legality. Weasel words to call it a ‘choice’.

            Finally – apologies to Margaret – none of this is aimed at you. I am immensely grateful to you for giving this subject a forum and opening up the discussion – thank you.

          • Adawells May 24, 2015 at 9:55 pm #

            Thank you for your response, Cassandra. I opted out of the cervical screening programme in 2003, after avoiding my doctor and those recall letters for many years, since, in those days, it was never made public that you could opt out, and there was no address to contact to stop the letters. You are deliberately caught by the system, as you make clear in your post above.

            Out of the blue one day in 2003 I was telephoned at home one afternoon and a complete stranger proceeded to ask me why I was ignoring my screening letters. I then had to answer questions and explain in details, why I thought my sexual history, and that of my husband, meant I was so low risk, that I should consider myself a candidate for opting out of the programme. I was 44 years old, and was furious at being treated like this, even though the “interview” remained civil.

            I deeply resent this medical policing of our bodies, and the promotion of this regular invasive, medical surveillance as a “normal part of a woman’s life”. I don’t see that it is any different from what happens in Brazil, or Saudi Arabia for that matter.

          • Elizabeth (Aust) September 18, 2015 at 9:52 am #

            Ada
            Some women are expected to go into detail. Virgin? So no actual penetration, but what about genital to genital contact? etc. I’ve read a few accounts over the years from women deeply embarrassed and angry that a doctor should feel it’s appropriate to expect answers to these intimate and very personal questions. I’ve also heard of women being asked to explain why they’re still a virgin at 25, 30, 40 etc.
            We can talk about women’s rights all day long, but these programs say to me that women are still treated and viewed very differently by the medical profession and others.
            Doctors and these programs should just provide the information, include it in the “invitation”, there is no need to ask for very personal information. Women can always ask for further clarification if they so choose.

      • kat rehman May 25, 2015 at 8:56 pm #

        Hi again Linda and ladies.. Linda it’s funny ( well u know what I mean).. I’m on regular daily medication and I wondered if the doctor would write my repeat or if they’d get funny about it and drag me in to try n smear me… Anyway the prescription was there. Having said that my review is due next month so maybe they’re saving it til then. If they do mention it I’ll just say “I made informed decision not to screen, I signed disclaimer and I’m here today to discuss….
        But it’s awful I’m thinking like this!!
        And I checked out women’s eyes only n left a couple comments…

  38. Linda June 2, 2015 at 1:05 pm #

    Hi Kat and everyone else here. I am now in the process of suing the NHS for Rape. I wrote to Theresa May recently about the scandalous treatment I received by doctors and nurses representing the the NHS. It was implied it was mandatory and I had no choice, I wasn’t even told what it was for, false negs, positive, innaccurate test, over treatment, the fact that the dirty snivellers get paid for doing it and of course that incredible concept which seems to fox doctors at every turn —– informed consent and the right to refuse.

    I believe that for me smear testing was rape as I was given no choice but to accept this vile test. Yes it can be called rape – for that it is what it is if you don’y want this test but are forced, coerced and bullied into having an instrument thrust into your vagina. Just like me on 7 separate occasions.

    Under 2003 sexual offences Act any penetration with an unwanted instrument is now considered a serious crime. Although she didn’t reply personally another Minister did and fully sypmathised with my argument and gave me the Healthwatch contact details for my area.

    Did you know you can set up a website of your own which is not policed by any authority whatsoever and name and shame your abusers. Weebly.com is a good one for me where I now name the doctors and nurses who have raped me. This abuse of women will stop.

    • Ada Wells June 2, 2015 at 2:23 pm #

      Well done Linda for speaking out against this treatment, and it is thanks to the internet that women are uniting on this front and questioning why it has to be accepted as a “normal part of being a woman”. I was persuaded by PALS to contact Healthwatch recently when I revealed about an assault carried out on me in 1997 in the name of this programme, but although they thanked me for letting them know, I found them quite useless, and they could only refer me to the NHS website for info on cervical screening. To be honest I was insulted by this.

      I have also heard of women going to the police, only to be told that turning up to the appointment and sitting on the couch with no underwear on counts as consenting to the procedure, so there are no grounds for saying it was an assault. The fact that women are told that this test “may save your life” makes many women believe that their life depends on it, and the authorities do not understand that years of deception and fear of being denied other healthcare for themselves or their children is the real reason many women put themselves through this much detested procedure.

      I have heard of women crying out in pain and weeping through the procedure. Doesn’t it ever prick a doctors conscience that many of these tests are so unnecessary?

  39. Linda June 2, 2015 at 1:15 pm #

    Furthermore you can contact Rape crisis like I have because I am so terribly upset at what has been done to me. Incredibly, my contact said they are hearing of this more and more and that they as an organistation also think there will be a huge backlash sooner or late.

    I totally applaud and thank Rapecrisis for everything they have done for me over the past few months as since finding out that I could have chosen to have this test or not and that as a woman in a mutually monogomous marriage for thirty years I most deffinately did have an argument to refuse if only I was told I could.

    In the wake of the Jimmy Saville scandal the NHS is on very shaky ground now. The NHS did not stop him even though they had their suspicions and that in my eyes meant that individuals working for the NHS condoned it.

    So come on ladies if you feel you have been caused an injustice by the NHS don’t just sit their moaning about it get active and do something.

  40. Linda June 8, 2015 at 4:08 pm #

    Hello Ms McCartney. Thank you for removing my last comment. I was completely over the top. Prior to accessing your site I had been reading accounts on an American website of girls around 13/14 years of age that had been taken by their mothers to the gyno against their will to be given some very intimate examinations. Some of the girls said they would remember them for the rest of their lives and were very upset. Their abuse had been utterly degrading having received – smears, breast exams, vaginal and rectal exams. I was so upset for them as I know if it was done to me my entire life would have had a pervading sense of sadness cast over it for all time and it would have destroyed my relationship with my mother utterly..

    But afterwards I came on here and vented my anger at all doctors in general. I couldn’t believe they would do this to children.

    I realise not all doctors would do this as they are aware of the mental scarring doing something like that to a young girl would cause. Its just a few unscrupulous ones.

    I totally appreciate your forum where woman can come together to express their disapointment over their treatment.

    • Adawells June 8, 2015 at 10:08 pm #

      Linda you are a very good person, and a pleasure to hear from on these forums. There is some terrible stuff online, so don’t upset yourself with it. Little by little things will change for the better, as more and more people see what they are doing is wrong. The world needs more people like you. J. Savile wouldn’t have got away with things for so long if you’d been around. You’d have spoken out.

      There are a lot of good people out here, and we are listening to you. Stay with us and let us know how you are getting along. We are with you.

  41. Julie August 4, 2015 at 12:01 pm #

    I just got a letter from my GP, “We are advised by the Primary Care Support Service, that despite being sent an invitation letter and a reminder letter recently, you are yet to book for a cervical screening (smear) test….. We would therefore like to invite you again to make an appointment….please contact the surgery to book an appointment with the practice nurse for this procedure”

    I really, really don’t want a cervical smear test. I am nearly sixty, and have never had any problems down there, and haven’t had a smear test for twenty five years. I haven’t been sexually active for fifteen years.

    The NHS website took down my comments straight away, their comments board is full of women in their early twenties going on about how nice the nurse was. They allow the occasional woman to say it hurt a bit.

    My reasons are more along the lines of at my age I don’t need this test, I am far more likely to die from illnesses I already have, and I don’t want to risk possible unsterile specula and instruments that have been inside millions of other women (reminiscent of the nineteenth century wards where women caught puerperal fever from cross-contamination, and knew to avoid). Also false positives, false negatives, it isn’t a very accurate test, leading to possibly unnecessary and similarly forced or pressured treatment you don’t need.

    I think I am not a risk for cervical cancer, and I think the test has a lot of risks.

    I didn’t actually say this in the comments that got removed from the NHS website comments board, I kept hush about my fears of badly sterilised instruments and just said that at my age and circumstances I don’t want it and how do you make the letters go away.

    I don’t need this stress. What is their system, is this the final reminder letter, or will they carry on pestering me?

    • Adawells August 5, 2015 at 9:26 pm #

      Julie, you can opt out of cervical screening by writing a letter to your GP. You just need to say that you no longer wish to be a part of the programme, and that you have read the leaflet and are making an informed choice not to take up the offer. It is a legal requirement that they should let you know you have a choice, and they must also stop sending you those letters. I opted out in 2003, after a last test was done on me in 1997. I had no idea opting out was possible until I was telephoned out of the blue one day by someone asking me why I wasn’t attending. It was only then that I heard about the opt out letter. If you Google cervical screening opt out letter, you can usually find a few on the web. Some GP surgeries even have them for patients to download from the surgery web pages! I am so sorry to hear that you have been put through so much trouble with this, it makes me so angry that they keep women in the dark about their legal rights on this issue. I have never been pestered since 2003, and never received any further letters.

    • linda August 12, 2015 at 4:55 pm #

      Hello Julie. All of my vomments have been removed fromthst website and they wernt even offensive. They just fon’t want independent thinking women on board,

      Please ,please join our great website for women called forwomenseyesonly – you will find us all there.

    • Elizabeth (Aust) August 18, 2015 at 2:42 am #

      The word “despite” does not sit with “invitation”…it shows choice is still not respected, even if we hear some positive things at a higher level, it seems many women still face orders, pressure, disrespectful conduct and even coercion at a surgery level. It’s not just GPs either, but often nurses and receptionists think they have a right to scold, shame, pressure or judge women. I think it’s a good idea to report this sort of conduct, have they been trained to treat women this way or have they taken it upon themselves to act as pap smear police?
      The surgery needs to be told this is unacceptable and if they can’t see a problem, go higher…they’ve gotten away with poor conduct for far too long.
      The Medical Council “say” that informed consent matters, so they should be very concerned to hear that standards are falling way short in many medical practices.

  42. Julie August 4, 2015 at 1:53 pm #

    I wanted to add that my impression is that cervical cancer is roughly 99% caused by HPV virus, which young women may have some resistance to, and from what I have read the body usually eventually throws it off. Healthy young women have acidic vaginas to deal with most infections. I am concerned that after the menopause we probably lose that resistance, and our general resistance to infection isn’t as good as it was when we were young. So maybe younger women have a fighting chance against infection even if the instruments are not properly sterilised, whereas older women could be more susceptible.

    Another reason why at my age and circumstances the risks seem to outweigh the possible advantages of cervical smear tests.

    I do have a few odd chronic infections, that I just can’t clear up, and feel it is likely I have less resistance because of my age.

    • margaretadmin August 5, 2015 at 10:14 pm #

      hello Julie
      – it should be absolutely your choice as to what to do. you can put a note into your GP to let them know
      -the function of cervical screening is to detect potential changes earlier, before you have symptoms. So the fact that you have no symptoms is not really the kind of information that should steer you towards or away from screening (in fact, symptoms need diagnostic tests, not the cervical screening test)
      – the speculums used for smears are disposable – they are no longer reused and are sterile – so again, I don’t think I would use this as reason not to be screened
      = the main risks of screening are a) if you feel the test is unpleasant/distressing/etc, and b) overtreatment from changes that would not become cancer and c) false negatives.
      the best decisions are made on the best quality evidence and I don’t want you to have bad info. YOur practice nurse or GP can discuss with you personally and help you decide if you wish, best wishes, mgt

  43. Christopher Lloyd October 24, 2015 at 9:48 pm #

    Dear All,

    Although Cervical Tests are here mentioned, i feel very strongly that women of all ages (not just 50-70) should be sent a Reminder about having a Breast check every 3 years at least.
    My Partner had a Reminder in 2009 (she was 68); then, because she reached this cut-off age of 70 in 2011, she was not sent out a Reminder for 2012 (the 3 years by then).
    Sadly, a malignancy was detected by a chance visit to the GP for an unrelated matter.
    Unfortunately, by this time, the lump was around 4cm and had Metastasized elsewhere.
    Upshot is that she died in August this year and i strongly suspect that if she had had the 2012 Mammagram done, it would have shown the lump earlier and perhaps it could have been treated in time.
    The people responsible must send Reminders to both younger and older women who currently fall outside the age “umberella” if we are to prevent missing people like my dear Partner Jenny and thus potentially save lives; memory alone is not good enough to rely upon to ask for a check either for below age 50 or 70 and above.

    Three years is too long to go to have to remember……..

    Thank you for hearing my Comment.
    Regards,
    Christopher.

    • linda November 17, 2015 at 5:39 pm #

      Hello Christopher. I am so sorry for your loss. I am sure you are devestated. It will take time to recover, if in fact you ever do.

      Every life on this planet is a jewel in Gaia’s crown and everyone who leaves us is missed truly.

      Reminders are fine for women who want to continue to screen. I am so sorry your beloved partner was overlooked. She did nothing to deserve what happened.

      It must always be about an individuals decision to screen or not. Many of us believe the info on the leaflet must contain the pro’s as well as the cons of screening. This hasn’t happened in the past. Everyone is entitled to have all the latest scientific thinking and evidence concerning testing.

      It is now thought that many women have been over diagnosed and gone on to have chemo and even mastectomies they didn’t need. Sadly many cancers have also been missed.

      The decision to screen must always be left to the individual woman once she has access to all the fairly presented facts. Only she knows what is best for her body.

      With my deepest love from one human to another – I pray you find peace.

      Linda X

  44. MJ January 6, 2016 at 12:48 pm #

    My first test i found very traumatic, I was 21 but a very young naive 21-year-old
    I went to see the nurse to get the contraceptive pill and as I walked in there was I presume a medical student there could have been the cleaner tho, who knows, LOL I was not told who the other person was or what she was doing there
    As the nurse was giving me the smear test the other lady was looking right up inside me the whole time and I should have said but I was too timid too say I did not want a second person there. then she made a very personal comment whilst I was in such a vulnerable situation, no word of a lie, as to how much pubic hair I had shaved off!!
    I have also had two friends being really cold saying that they had abnormal cells which let them in to a great deal of distress
    Now I have had my second letter saying that I am due another test and to be honest I know I sound like a right wimp but I’m proper scared about this I should have complained about my arm fair treatment at the time but it has had an effect on me and I think the stress really does outweigh the pros and I just don’t want one
    I have to see the nurse every three months regarding a blood test and now I don’t think I will bother going to that because I know she is definitely going trying to force me into a smear although for a few occasions I could say it’s that time of the month or something but why should I be bullied??
    You would not let a man bully himself into your knickers so why should an NHS staff do the same??
    I just do not want the hastle of having to get them off my back when I go for a totally different reason

  45. Simone January 14, 2016 at 11:34 am #

    I don’t doubt that sometimes not all facts or evidence are made available, but they are out there and should be shared. The difficulty is that issues are rarely black and white, and complex messages just confuse people so it’s very difficult to get them just right. Imagine how many points of view there are and how many people you have to avoid offending when you tailor things. I can’t speak for national campaigns, I don’t find them especially helpful myself and don’t agree with shock tactics because I know the evidence (even though bizarrely many members of the public think that they work!) But in terms of local health prevention, we do not support actions that will harm or are unnecessary. When looking at provision, of course we don’t want to force treatments or assessments on people who don’t need them. What would the use be in that? Apart from anything else, the money needed to train people to carry them out and the time it takes would be pointless. But at the same time, we have to look at the evidence and find the best way of preventing diseases based on what we know. That’s a local thing and not just about the government or health service. Individuals don’t always agree that they are at risk, often when they already have health problems. Many people think bad things happen to other people. And most people on here responding to this issue seem to be pretty proactive and fairly informed about health generally. Don’t forget that not everyone is. And those are the people more likely to be at risk, which isn’t fair. I’m thankful that we have the level of healthcare and prevention in this country that we do, we are very lucky. It still doesn’t prevent everything that it could. Patient rights are important. If saying no to something and being heard were the only thing to crack, then we wouldn’t be doing badly. Just for the record, I train people in client-centred care as part of my role, which means respecting patient choice, but also making sure they really have the facts on which to base decisions, and are offered support if they need it. And being given the time to speak, listen, consider things etc. Not all health professionals do that unfortunately, but I live in hope that good habits rub off! None of us are perfect. Money is of course the thing that drives many of the issues mentioned on here. If any of you can find a way to crack that nut, I’m all ears!

  46. kk January 16, 2016 at 1:16 pm #

    what is the main reason gps bully people to get this test?? is it money related via the system??

  47. linda February 3, 2016 at 9:03 am #

    Hi. Women have been bullied into having this test for several reasons. Cervical cancer was hardly known in nuns but was seen in women who had large families. It was thought that because it was the ‘lower orders’ that mostly had large families it was also thought of as being a disease of the working class. During the 60’s the british government began worrying about the so called liberal attitude of women towards sex. It was seen that they were having sex with many different partners. Also in general more babies were being born in partic more girls were surviving onto adulthood than at any time in history. Along with this were women coming to Britain from the West Indies were CC was prevelent.
    There was a real fear these factors would cause an epidemic of CC which could possibly bankrupt the NHS.
    They were forced to adopt a very unreliable innacurate test recently perfected in the states. They knew it wasn’t the best way to check for CC but at the time it was all they had.
    To run it on the cheap while catching as many potential cancers before they developed (making the more expensive to treat,) an interval of 3 years was considered reasonable.
    Over the years the NHS built up an industry of 100 000 staff to take care of the perceived crisis. A crisis that never developed. The connect to HPV virus was made for deff about ten years ago. This can determine the liklyhood of cancer developing. If a women is HPV neg then she prop won’t develop it but if a woman is positive there is a slim chance she might. The test can be done either with a blood or urine sample. However, to dismantle this programme would now be a massive undertaking. Imagine hearing on the news a 100 000 were to be made redundant – the gov would never allow it.
    Also patriachal notions about the rampant sex drive of working class women still exists. If you care to look almost all smear test campaigns are run in working class areas, in working class newspapers or on sites that WC girls access.
    While middle class women are perceived as taking care of themselves and doing the right thing there is never any stories about them getting cancer but if a women from the lower classes get cancer ie. Jade Goody then we never stop hearing about it.

    Cervical cancer screening is never presented as a choice for women and many have been lead to believe it is a ‘mandatory’ exam. This idea has been allowed to pervade society.
    However, in 2003 the law on rape was changed to include ‘rape with an implement’ (check the crown pros service) Anyone coercing, intimidating, forcing a woman to have an unwanted object placed in her vagina can be charged with rape. Even a practice nurse trying to persuade you to have an unwanted smear test could be charged with attempted rape. Recently we are seeing a huge plethora of articles on the need to get a woman’s ‘informed consent’ (look up what doctors did to men in the tuskengee experiment)
    Informed consent has been missing from women’s cancer screening. Suddenly governments are waking up to the fact women have feelings -we don’t want strangers rooting around in our vagina. Our human rights have been violated and the British Cervical Screening programme has been operating illlegally.
    Between 1988 and 2010 the NHS got away with making me believe they owned my vagina and had me ‘raped’ (look up the concept of medical rape.) On 7 occasions.
    I recently approached the Euro court of human rights with the intention of prosecuting the Brit gov for rape. Amazingly they have issued me with a number which means they have agreed to consider my claim. It won’t be heard for another 7 minths but i am waiting.
    In the meantime i do everything i can to high light the dangers of gaving this ‘quick’ and ‘simple’ test.
    You might like to visit our site – ‘forwomenseyesonly.com’ or downliad our free ebook ‘the trruth about smear tests they dont want you to know.’

    Linda
    X

  48. Ally March 22, 2016 at 2:44 pm #

    I am a virgin so do not need a smear test . I am fed up with the incessant letters I get about needing a smear test. I don’t have periods either . I also have a mild form of cerebral palsy that would make a smear test very difficult in addition to my virginity. the covering over my vagina is still there too as I have never used tampons
    A doctors receptionist said it ‘didn’t hurt ‘ … I know she is the mother of two children so not in my situation .
    As a result of my experiences I have set up a Facebook Page – Cervical Screening – Right to Refuse

  49. Alps November 19, 2016 at 1:59 pm #

    Thank you to everyone who has posted on here and making me realise that I’m not the only woman in the United Kingdom who declines the smear test. Thank you for sharing your experiences because for a while when I had to deal with the “screening system ” I was made to feel like some kind of freak for declining and was often in tears explaining very personal information to complete strangers. Indeed still to this day when I have had a referral for e.g. Acid indigestion , the referral letter contained the detail of my having declined the smear test as I was a virgin. My sexual history being brandished around in this way is humiliating but I have been left alone now regards phone calls and constant letters for my “invite”. Best wishes to all and for having this blog Dr.McCartney

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