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Opting out of cervical screening

(89 Posts)
TeaAndHugs Mon 26-Nov-12 13:47:37

This is not a thread to discuss the benefits or otherwise of cervical screening.

I want to officially opt out of the NHS Cervical Screening Programme. I have looked at the data regarding risk of cancer vs risk of unnecessary treatment and decided that I would rather live with the cancer risk (I have the necessary statistical training to make an informed decision).

However, every time I see the doctor or nurse the appointment is dominated by a lecture about screening, rather than a discussion of my actual health problems. I want to officially opt out of the screening program so that I stop showing as overdue for a test on the doctor's system.

According to the NHS Cervical Screening Programme Good Practice Guide I can opt out by putting my request in writing, but it doesn't say who I need to write to. Is it my local PCT (which is Oxfordshire)? Or is there a national admin center?

Has anybody else successfully opted out? How do you do it?

This is not a thread to discuss the benefits or otherwise of cervical screening.

MoaningMingeWhimpersAgain Mon 26-Nov-12 13:57:13

http://www.tvpca.nhs.uk/_store/documents/ceasing-women-from-the-nhs-cervical-screening-call-august-2009-20100429.pdf

There is a specimen letter here, at the end of the document. It does appear that your GP's surgery is obliged to still offer you screening at least every 5 years though, even if you have opted out. Perhaps adding a phrase about 'I am aware that you have a duty to offer screening but I do not wish to discuss this further and I do not consent to you contacting me about this again. I am aware I may opt back into the screening program if I wish.'

FWIW I believe the screening program is excellent and the NHS has made the relevant assessments about the risks and benefits of screening. I know you don't want to discuss it, and that's fine.

MoaningMingeWhimpersAgain Mon 26-Nov-12 13:57:42
TeaAndHugs Mon 26-Nov-12 14:06:37

Thanks. I've seen that sample letter, but I don't know who to send it to. If I send it addressed to "Screening Team" using the address of the TVPCA main office given on the website, do you think it will find its way to the right person?

TeaAndHugs Mon 26-Nov-12 14:07:40

Should I also send a copy of the letter to my GP's surgery?

MoaningMingeWhimpersAgain Mon 26-Nov-12 14:09:01

I would send it to the GP practice (2 copies)and ask them to send one copy on to the relevant people at the Health Authority and keep the other for their files.

TeaAndHugs Mon 26-Nov-12 14:09:41

Ok, thanks. I'll do that smile

portraitoftheartist Mon 26-Nov-12 20:27:06

Last time I went I told the nurse I would not have any more as I knew the risks and that I was highly unlikely to get cervical cancer. I've never been called again.

TeaAndHugs Mon 26-Nov-12 20:47:38

That's what I should have said to the nurse today but she waited until she had a needle in my arm drawing blood to bring up the subject, so I didn't want to antagonise her! I did already tell the doctor I wasn't interested, but it doesn't seem to have made any difference. I'll send a letter to the practice tomorrow; it's better to have these things in writing.

Peppermintcrumb Mon 26-Nov-12 21:31:33

I successfully opted out of the cervical screening programme and it is now a pleasure to visit my GP without my cervix always being top of her agenda.

TeaAndHugs - don't forget to send your letters to your GP and Health Authority by recorded delivery to get a signature so that they cannot say they didn't receive your letter. I had to send mine twice AND hand deliver a copy to my surgery before those irritating "invitations" stopped.

There is always a chance that you will be asked to visit your GP so that they can try and persuade you to change your mind. Be aware of this as my GP tried this tactic but was unsuccessful.

BelaLug0si Mon 26-Nov-12 22:41:30

The GP will need to send copies to your local call/recall office (they administer the database which does the invites) and the local PCT. The call/recall offices go under different names according to your area but that's who I'd suggest contacting if you want to be sure it's been acted upon.

TeaAndHugs Mon 26-Nov-12 22:42:11

Thanks for the advice. I will deliver the letter to my GP surgery in person and let them know I'll be sending one to the health authority too (I think I've worked out which dept to address it to).

redrubyshoes Mon 26-Nov-12 22:47:05

I would have been dead by the age of thirty if I hadn't had cervical screening. The cells can can change within months.

If you are a virgin or in a single sex relationship then you are probably ok but the NHS saved my life.

TeaAndHugs Mon 26-Nov-12 23:02:38

@redrubyshoes See bold statements in the original post. My reasons for opting out are none of your business.

redrubyshoes Mon 26-Nov-12 23:18:31

Good luck OP but do not judge healthcare professionals for doing their job.

BelaLug0si Mon 26-Nov-12 23:22:13

I work in cervical screening but I understand and respect an informed choice not to attend for screening. It is your right but you will need to have the correct paperwork etc.

Otherworld Mon 26-Nov-12 23:44:51

I no longer have a cervix and am wondering now if anyone has thought to take me off the list of people to screen. I'm guessing they have as I've not been bothered by it and it's been a good five years since I had my last (ever) smear.

Peppermintcrumb Mon 26-Nov-12 23:50:47

@Redrubyshoes

I don't believe TeaAndHugs is making any judgement. I believe an informed choice is being made here.

I feel the screening programme makes opting out (I don't remember opting in) difficult because they want as many woman as possible to screen. In my experience, I faced many barriers before it was recognised that I am capable of making my own decisions about my healthcare.

Having successfully removed myself from the Cervical Screening Programme, I am now following a similar path with the Breast Screening Programme.

Sigh.

whizmum Wed 28-Nov-12 15:24:52

Useful information.

I wish to opt out too - at the moment I string them out by taking a year or two to respond. I have no idea of how I got on to this system - it just happened. I was quite happy making my own appointments as and when before that.

noddyholder Wed 28-Nov-12 15:26:13

A smear saved my life aged 36

TeaAndHugs Wed 28-Nov-12 15:54:03

Interesting that people are saving the tests "saved their lives". Many cancers that are treated as a result of screening would never have become invasive.

I've written to the doctor's surgery and the Thames Valley PCA using the model letter given above. If changes in lifestyle move me into a higher risk group for cervical cancer in the future, I might book a test, but I don't want to be on the list for constant nagging, especially as I have actual health issues that are currently being sidelined by lectures about screening.

To put this in perspective, the lifetime risk of cervical cancer in the unscreened UK population is between 1 and 2%. I can live with that level of risk.

whizmum Wed 28-Nov-12 16:00:38

Good luck with that , TeaAndHugs, and hope you get your other health issues sorted soon
w

LonelyLinda Wed 28-Nov-12 19:05:42

May I ask why you don't wish to be screened? Please feel absolutely free to say no!!!

I am not judging or giving my opinions, just interested in any extra information, or reasons why somebody would wish not to be screened.

Please feel free to tell me to 'do one' or start my own thread.

Elizabeth52 Wed 12-Dec-12 23:54:34

Tea and hugs,
I made an informed decision to decline cervical screening about 30 years ago and more recently also, declined breast screening. It annoyed me I had to do my own research to get to real information. I found the official "information" was misleading and incomplete. Women have always been told they "must" or "should" screen, which is not ethical cancer screening.
We don't have a call and recall system here in Australia, so I shopped around and found a respectful GP who accepted my decision and marked my file. No need to opt out...or fill out forms.
I didn't want to go over the same thing at every consult, taking up valuable consult time. I don't get letters, phone calls etc...
I know many women here and overseas who avoid doctors altogether thanks to the pressure to have pap tests, not good for their health. Far more likely risks to their health are being neglected...a rare cancer is now the main focus in women's healthcare. (and it was always rare, by the way)

The UK has a call and recall system which means women get letters and more letters and even after opting out, more letters after 4-5 years. If that happened here (and it's being considered) I'd refer the matter to my solicitor, it's harassment when you've made clear you're not interested. Our GPs receive target payments from the Govt, the target was raised to 75% of eligible patients recently as our screening rate fell to the lowest level in a decade. IMO, this is because more women are working out they're being seriously over-screened which does nothing more than send over-treatment rates through the roof. Our doctors don't mention target payments to women, a potential conflict of interest. Our lifetime risk of referral for colposcopy and some sort of biopsy is 77% thanks to serious over-screening.
Damage to the cervix can lead to infertility, miscarriages, premature babies, c-sections, cervical cerclage etc
The lifetime risk of cervix cancer is 0.65%, less than 1%...
The UK also has target payments, but I understand it was changed and no longer relies on screening a certain % of women. There is no doubt IMO, that target payments ramp up pressure to screen.

Just be careful with your doctor and the surgery...
I contacted the NHS cervical screening program after an online friend was told by her GP that she'd have to attend a counseling session at the surgery before she could opt out. This is NOT a requirement and IMO, it's unethical, a try-on...these sessions do not cover the risks with screening, the rareness of the cancer or how few benefit...IMO, it's an attempt to scare and intimidate. The UK program sent me a response that said it all, "it's not a requirement, it sounds like an over-zealous doctor".
I'd call the NHS program and find out what needs to be done to take yourself off the register.

Anyone interested in cervical or breast cancer screening should do their own research and look at evidence based programs. The UK is lucky to have some amazing advocates for informed consent in women's cancer screening, we have one doctor in this entire country...she was brave enough to warn women about over-diagnosis in breast screening and uncertainty of benefit.

It's easy with mammograms, go to the Nordic Cochrane Institute website and read, "The risks and benefits of mammograms" and with cervical screening...well, the Finns have the lowest rates of this rare cancer in the world and just as importantly, refer the fewest women, they offer 7 pap tests, 5 yearly from 30 to 60. The Dutch have the same program, but are moving with the evidence yet again to 5 hrHPV primary triage tests offered at ages 30,35,40,50 and 60 (or test yourself with the Delphi Screener) and ONLY the roughly 5% of women who are HPV positive and at risk will be offered a 5 yearly pap test. This will greatly reduce pap testing, over-treatment and is more likely to save lives by identifying the small number actually at risk. (with a small chance of benefiting from a pap test)

Aussie women are still being horribly over-screened and over-treated, every day they receive bad medical advice...no woman needs an absurd 26 (or even more) pap tests, it just keeps day procedure busy and destroys the health (emotional and physical) and lives of huge numbers of women. It's been hard to watch the damage and distress caused by this program over the decades, especially when most of this damage was avoidable with screening in ethical and responsible hands. We've also missed too many of these cancers with our inefficient excess.

I'm not against ethical screening - where all of the information, good and bad, is released and women are free to reject or accept it as "they" see fit. (as we see in prostate screening) Words like "must' and "should" only seem to feature in women's cancer screening.
Ever noticed there is little pressure to have bowel screening, yet that cancer is far more common than cervical cancer.
HPV Today, Edition 24, sets out the new Dutch program - registration is required, but free.
The Nordic Cochrane Institute website is a great source of real information, especially on breast screening.

Candyfloss27 Sun 15-Sep-13 11:40:31

I search the internet for "Opting out of NHS Screening". Found the inaptly named NHS Choices and landed on MumsNet and read the whole thread above. So for anyone else seeking the answer to the very simply question "How do I opt out of NHS Screening?" I have returned to answer the question smile

Firstly write one letter to your GP simply saying you wish to opt out of whatever you wish to opt out from. Secondly, write on a seperate piece of paper why it is you wish to opt out. Just a paragraph of simple statements is enough.

Make an appointment with your doctor and begin by handing over the letter stating you wish to opt out. Then, IF the doctor asks why, hand over your paragraph of explaination. (My GP so astounded me by not asking 'why' I asked her if she wanted to know why and gave her my carefully written paragraph!)

Smear Test recalls first pass your GP's desk. Although I must point out that they simply indicate who is to be recalled and record who attends. They are not the instigators of the 'non-attendance' letters that then repeatedly fall through the letter box! But your GP is the one to stop the Smear Test re-call letters.

Having spoken to your GP, you need to ring your local Breast Screening Service and ask for a form that allows you to opt out. (My GP even offered to do this for me). When the form arrives, sign and return. No explaination needed. The form clearly explains you can ring for an appointment anytime you choose in the future.

Please do not assume your GP is going to give you a hard time. I assumed and I was proven very wrong. I came away feeling supported in my decision.

The fact is there are genuinely good reasons why women may want to opt out, be that temporarily or permanently. Anyone saying you 'must' go for breast screening or smears, is not you, nor living your life and certainly not experiencing whatever is going on in your life at that time! And to say 'it saved my life' does not take into consideration that 'life' may not be quite so valuable to you at the point all the damn letters drop through the letter box! Your body, your life, your choice.

I am free smile No more letters (just about every screening invitation you can imagine has arrived through my letter box in the past 6 months). No removal of my GP's support in any way. No removal of the Pill (read on other website threads) I am free smile And now I shall concentrate on trying to live my life without my husband. When I am stronger and when I can work out how to handle life on my own, then and only then, will I ring and make screening appointments. I will ensure they are not all bundled within the same six months and ensure they are the only stressful thing I am needing to cope with at that time.

TBOO16 Sun 15-Sep-13 13:49:51

I run the The Big Opt NHS Confidentiality Campaign- Screening is covered by Sec 251 of the NHS Act 2006. This means the NHS can legeally contact/harass patients without their consent!

For complex legal reasons we shall be challenging this with the Information Commission shortly as it seems the NHS may be falling foul of the Data Protection Act and unfairly processing data, which is potentially unlawful.

You DO NOT need to fill their forms. You never agreed to be contacted so why should you sign their forms agreeing to their so called risks. There is NO legal requirement for you to complete their forms.

A letter stating you wish to opt out to both your GP and Screening Office is all that is required.If they persist in demanding their forms are signed a complaint to the Information Commissioner about harassment is warranted.

You will note that now on the screening info that is sent out there is information on how they use you slides/mammograms and records. That was down to me my MP took up my case. I stated I had been screened without my informed consent as I had not be informed about how my records nor had I consented to them being shared with the wider NHS. When Patricia Hewitt was Secretary of State for Health she ordered ALL my NHS records be deleted including screening records. The NHS had to send big TNT trucks to my door delivering my cytology slides! smile

TBOO16 Sun 15-Sep-13 14:32:34

@candyfloss27 Yes I agree its the best feeling in the world knowing the NHS cannot contact you. I do not even have an NHS number and due to Sec 10 of the DPA being applicable to me across the whole NHS I legally cannot be on any NHS database. I no longer have an NHS number.

Its just wonderful. You suddenly feel free its uttrely amazing how much hounding by the NHS can stress patients out. Yet the NHS thinks they have carte blanc to do this.

Havea0 Sun 15-Sep-13 14:38:56

I am finding this thread curious on several levels.

TB0016 What happens if say you need an operation?
Do they still have your hospital records? They have to be filed somewhere? Either paper or computer or both? I am always relieved, whenever I have had to have av operation, to see my records in a paper file, in their absolute entirety. And thinking of my childrenm who are allergic, agaim very relieved to see their full medical files since they have been born.

Havea0 Sun 15-Sep-13 14:42:55

Candyfloss. "life may not be quite so valuable to you..", sounds like you are in a dark place right now so dont care all that much about your health?

TeaAndHugs. I dont get why you say that they are sidelining your other issues.

Mosschops30 Sun 15-Sep-13 15:03:03

Not being contacted by the NHS is 'the best feeling in the world'
What an odd life you must lead.

Maybe this thread should be over in vacs with the rest of the crazies who believe the NHS is just hear to do us harm

Rarely swear on MN and have never been 'told off' but I'm willing to risk it

FUCKING IDIOTS!!

TBOO16 Sun 15-Sep-13 15:38:41

This thread clearly states its not for debate. Everyone needs to make there own informed decisions what is right for one person is not necessarily right for another.

I have no issue with these screening programmes so long as they are opt in with fully informed consent, sadly this is not the case.

Havea0 Sun 15-Sep-13 15:51:07

TB0016 you have not answered my question.
Perhaps you do not live in the UK.

And once a thread is posted, I or anyone else can debate if we want to.

fwiw, I do have smears, though suspect in my case, that they are not necessary.
But will not be having a mammogram again, as I feel it did more harm than good in my case.

Havea0 Sun 15-Sep-13 15:52:44

And I will debate if I want to because it is MN rules.

But more importantly, this thread may impact deadly on some posters lives. So yeah, I will debate.

TBOO16 Sun 15-Sep-13 16:08:09

@haveao I have my own original paper records. Sec 10 has to be agreed by the NHS as was in my case so the NHS knows you understand the risks. I avoid the NHS as far as possible.

As I said I have nothing against screening programmes etc so they as they opt in with fully informed consent. I had to fight Cancer Screening UK to put in their literature what happens to your screening records.

The NHS makes it incredibly hard to opt out. In a lot of cases and they admit it, the data is used unlawfully.

It is such a shame that they fail to respect patients who want to opt out or do not want there records shared.

Patients need to make their own fully informed decisions and opt into the care they want to receive but sadly a large amount of NHS information is biased.

TBOO16 Sun 15-Sep-13 16:12:38

@haveao I had the support of my GP, Consultants, MP and then Shadow Health Minister Dr Andrew Murrison who was a GP so it was not a a decisions taken lightly. Its not something you can do easily. It requires lots of determination and my MP had to oragnise a parliamentary debate. It was reported in t he national press.

Havea0 Sun 15-Sep-13 17:07:20

Thank you for further explaining.

"I avoid the NHS as far as possible"

I cant think how that works. I too have very little need currently for them, but I couldnt possibly make a prediction that I wont need them
in the future.

Will see if I can track down your case.

starlightraven Sun 15-Sep-13 17:19:30

Thank you so much for this thread. Every time I got to my GP about ANYTHING they hassle and hassle me about the smear. These days I just smile and say 'yes I'll book it now' and never do. I have done a hell of a lot of research and decided I do not want them, and I don't want to be lectured about them constantly. I am a grown up and can decide for myself what I want to do. I live in Wales where they are stricter with the tests (start at 20) so I really hope I can opt out. I avoid the doctor sometimes now because I don't want the lecture, would, would be so great to be free of it.

TBOO16 Sun 15-Sep-13 17:21:18

It works quite easily I have 30 years experience of working in NHS there are ways around things plus I have support of my Consultants. My GP is a GP who I have known professionally for 20 odd years and supports the aims of The Big Opt Out NHS Confidentiality Campaign.

http://www.theguardian.com/society/2006/nov/02/health.epublic

Charlotte246 Wed 18-Sep-13 18:47:00

Mosschops - don't be so rude, describing people who have conducted their own research as "crazies" and "idiots". This thread is enlightening and I believe more women should be informed so they can chose whether or not to participate in screening.

summertimeandthelivingiseasy Wed 18-Sep-13 20:12:03

I have recently been invited to have a health screen, which will be repeated every 5 years.

This looks like another thing you have to opt out of.............

It involves (as far as I can see) taking your blood pressure and asking you if any relatives have died of xyz and then telling you if you are at risk of xyz. They have done this so many times before, (every year I have been on the pill) that I cannot see the point of it.

It may also involve a cholesterol test (I have had 2 proper ones any way and it is OK) and a screening test for kidneys if your blood pressure is high (mine never is). They will also record your height, weight and ethnicity (don't need to be screened to know this - it sounds like data gathering to me).

I shall have to ignore this as OH has chucked the instructions in the bin. At least they do not presume to give you an appointment, like the mamograms (not sure I ever want another one of those).

www.nhs.uk/Planners/NHSHealthCheck/Pages/Overview.aspx

Showtime Thu 19-Sep-13 00:24:49

I remember making the decision to opt out of the breast screening programme by having a word at the village surgery, no problem. After a hysterectomy, I was surprised to be stopped at the surgery (different receptionist) and told I was overdue for cervical screening. With everyone listening, I had to insist they checked my records, when they would understand why making an appointment was not a good idea.
Good luck sortin g this out soon.

Lighthousekeeping Thu 19-Sep-13 00:33:28

I so love all my screenings. I must be well weird.

starlightraven Fri 20-Sep-13 13:31:56

It is a nightmare trying to opt-out! I live in Wales so apparently I need to fill in an CSW opt-out form. However, these forms are not online and it is not clear who I have to contact to obtain one. They are trying to make it as difficult as possible to opt-out. I have a GP appointment next week and I'm really dreading the smear test lecture. They talk to me like I am a silly naughty child for not taking them. If I can't get hold of a form I will just try writing to my GP. Not sure if I have to justify my decision in the letter though?

CoconutRing Fri 20-Sep-13 18:32:51

You don't have to justify the reason for not screening. You didn't opt in so I don't see why you need to opt out. If your GP starts with the smear lecture, ask him or her to stop and concentrate on the reason for your visit. Be calm and don't lose your cool. Take control of the consultation. One trick I have learnt, is to turn up unwashed, wearing smelly trainers with no socks. Doctors are not so keen to get you naked if you have a personal hygiene problem!

TeaAndHugs Thu 13-Mar-14 12:17:49

As an update, I wrote* to the Screening Services Dept at Oxfordshire PCT and screening has never been mentioned since! It's been wonderful to actually get medical attention rather than lectures.

I'm due to move to a different part of England later this year. Does anyone know whether my opt-out will carry over to the new PCT, or whether I will need to write to the new PCT to opt out again? Has anyone done this?

---

*In case anyone is struggling to find a template online, this is the one I found and used:

"Please do not send me any further invitations to participate in the NHS Cervical Screening Programme. I assume full responsibility for this decision and confirm that I have understood the leaflet Cervical Screening: The Facts which explains the benefits and disadvantages of cervical screening and the importance of screening in preventing cervical cancer and reducing deaths from it.

I understand that my name can be restored to the screening list at any time at my request to my GP."

Underneath that, I gave my name, address, GP's address, NHS number and date of birth, and signed and dated the letter. Seemed to do the trick.

specialsubject Thu 13-Mar-14 14:15:29

please feel free to opt out, it is a free country.

you will of course also refuse any treatment should you (hope not) get cervical cancer?

TeaAndHugs Thu 13-Mar-14 17:01:46

Yes, I would refuse treatment. I have watched family members die of cancer, and get treatment and survive, and would rather take the first option. Although I'd be offing myself after diagnosis rather than waiting for the cancer to do it for me.

Meglet Thu 13-Mar-14 17:16:06

You won't know if / when you get cervical cancer if you're not being screened for it. And by the time you realise that actually something isn't right, and hasn't been right for a very long time, then it will have probably spread heaven knows where in your body.

TeaAndHugs Thu 13-Mar-14 17:19:07

@Meglet - I know. That's one of the reasons why I don't want to be tested. If I'm going to die as a result of cancer (since I don't want treatment), I'd rather not know about it for as long as possible.

SpinningFates Thu 13-Mar-14 19:50:36

Well done for opting out. Yes, you will have to opt out again if you move to a new PCT. As you have the template, it shouldn't be a problem.

As an aside, I cannot understand the venom that is directed at a women that chooses to opt out of the cervical screening programme. Your body, your choice.

littleme61 Tue 22-Jul-14 12:57:58

I believe we should have choices about our own bodies! Whatever we choose for ourselves is the right choice for us. No one shold be attacking another person as they want to make a different choice. I came here today as I want to find out how to opt out of smear testing, whatever you think, it's my right what another person does or doesn't do to my body! I am a rational adult who has looked at all the facts. I was horrified at the way my Doctor disregaurded I was even sitting in the room today when he called the nurse in after seeing I hadn't had a smear for over 5 years, and without consulting me asked her to book me in on the way out! Then when I tried to get out of the surgery without further question I am shouted at by the receptionist...excuse me...you haven't booked your smear test! And then goes on to ask me (in front of other patients) if I have my period right now! I don't remember being asked if I choose to have a smear test or not, it's just assumed I will do as I am told! I am actually furiuos about it and wondering how to formulate a complaint letter! I went to the doctor as I have high blood pressure and needed to be monitored, not to feel bullied into a procedure I do not wish to have.
I looked at the link at the beginning of this thread re a template but it's now been removed. Does anyone know how I can find a form to opt out of screening and how to approach my GP hopefully not to be taken off his books when I have a medical condition!

rabbitstew Tue 22-Jul-14 14:38:20

Look on page 2 of this thread, TeaAndHugs typed out a copy of what she sent... I don't understand why you tried to get out of the surgery like that, though, rather than explaining your feelings at the time? You must have known trying to sneak out without talking about it wasn't going to end well.

angeltulips Tue 22-Jul-14 14:47:27

Gosh. I'm by no means a big fan of the nhs, but it had never even occurred to me to get cross about preventative screening.

To the (Aussie?) poster who said that particular countries restrict CC screening to the "5% of women that have HPV" - are you sure it's only 5%? At least in Britain, I am fairly sure HPV rates are a LOT higher than that.

starlightraven Tue 22-Jul-14 15:12:00

Glad to see other people have managed to opt out successfully. I finally managed to find out how to opt out, will say how for those who may be seeking info as I know it's hard to find! It's so nice being able to go to the doctors without being lectured about the smear, it used to make me not want to go at all. I can't believe it is seen as acceptable to make women feel they don't have any choice in the matter and to patronise us for making informed decisions about our own bodies. My body my choice!

For those who live in Wales - you can apply for an opt-out form by contacting your local Regional Coordinator at Cervical Screening Wales. Contact details here: www.cervicalscreeningwales.wales.nhs.uk/contact-us
They sent me an opt-out form in the post and I sent it back with a short statement saying why I wanted to opt out. Since then I've been free from the lectures and reminders.

grimbletart Tue 22-Jul-14 15:43:38

Obviously it should be made easy to opt out for those that don't want it for whatever reason. As starlight says "my body my choice".

On a lighter note those adverse to cervical screening will be pleased to know that they don't bother with you any more after you reach 65. Presumably no one over that age ever gets a new sexual partner……

That's the good news. The bad news is that after 65 you get a little package, envelope and spatulas sent to you every two years. You are asked to smear two pieces of poop (from different parts of your poop) onto a little plastic window, three times within the course of two weeks max that you then put in the envelope and send through the post. Welcome to the world of bowel cancer screening.

Personally I found it a lot more taradiddle poop scraping than having a nurse rummage around my lady bits for a couple of minutes.

But of course I agree with the OP. Just trying to introduce a little levity into the thread.

I'll get my coat…..

kilmuir Tue 22-Jul-14 15:49:59

Why do we need to opt out. I have no intention of going for any more smears. I just put letters in bin

littleme61 Tue 22-Jul-14 15:51:27

Rabbitstew.....I didn't try to sneak out as you put it....I basically didn't want a confrontation with the woman on the way out!I must have known it wasn't going to end well you say....really!...I dont appreciate unprofessionalism from nhs staff nor sarcasm from other comments here! Not sure why some people seem to feel the need to attack others ...I am simply seeking advice!! Perhaps if you read through some of the messages you will see why some women feel pushed into doing this and badgered...perhaps you should consider that is how I felt today!
And to Angeltulips...perhaps I felt like I was being treated as a non person in the surgery! Being talked about instead of being spoken to is not very nice and I for one don't appreciate that attitude. If I am going to be attacked for my comments I won't be posting again...as this was my first time...but in future will get info via the net! Cheers!

littleme61 Tue 22-Jul-14 15:55:31

Kilmuir....thats what I did until today when I went for a blood pressure check and virtually had an appointment made for me till I mentioned I would be on holiday. Now I feel forced to opt out and wait for the out fall from my GP!

kilmuir Tue 22-Jul-14 15:59:46

Thankfully i have not seen GP for years.
I have made my decision and would not appreciate being made to feel an idiot. My body my choice

PicandMinx Tue 22-Jul-14 19:50:41

You can write to your GP and ask for an opt-out form. They are obliged to provide you with information.

I would also write a letter of complaint to the practice manager. Mention the dreadful behaviour of both the GP and the receptionist.

Cancer screening is an optional test. It is not compulsory but you wouldn't think that by the way some HCP disregard the concept of informed consent.

When you next visit your GP, state quite firmly, whilst maintaining eye contact, that you do not wish to waste the consult time discussing cancer screening. Do not engage the GP in an argument. Just smile and change the subject.

rabbitstew Tue 22-Jul-14 20:16:46

Sorry, littleme61, but the way you describe it, you were trying to sneak out! Maybe I'm just more upfront than you, but if someone had offended me and tried to organise something for me I didn't want, I would have told them that at the time and explained why. If you didn't feel able to do that and chose to try to leave quietly and complain later, then sneaking out quietly is a fair description, imvho. You also seem unusually concerned about being struck off your GP's list - if your relationship with your GP is that bad, it doesn't sound like a very fruitful relationship all round (certainly not one likely to lower your blood pressure!) and you might be better off in another surgery that shows more tact and sensitivity.

Pinkfrocks Tue 22-Jul-14 20:19:22

Instead of all the fuss about opting out- why don't you just ignore the letters? I do. Because I've had them privately for years every 2 years- partly because of my age the NHS only offers them every 5 years ( and having known 3 friends with CN3 discovered at a regular smear appt) and also because I don't want to wait ( as it used to be) weeks and weeks for the results.

Interestingly the results never seem to make it back to the NHS database ( not the GP practice) because I am frequently called for a smear even when I've had 1 privately in the recent past.

Presumably though, GP practices get funding for hitting their targets for screening as they do for children's vaccinations ?

anothervisittothepark Tue 22-Jul-14 20:31:41

I get annoyed with the constant harrassing for smear tests too. I keep meaning to read up on it to understand the risks better. I think i must be very low risk as i cant have been exposed to hpv. I was judt thinking the other day, once you are married or with long term partner, why cant they test for hpv and if thats negative just opt out until such time circumdtances change. It is annoying they make you feel like its compulsory and dont even outline thr facts and risks properly.

PicandMinx Tue 22-Jul-14 20:33:52

Yes, GPs get funding by hitting cervical screening targets. Before the introduction of the screening and recall system in the late 1980's, there was a low uptake amongst eligible women. After a financial incentive was introduced, the uptake rocketed. Nice to know that it's perhaps not your health that your GP is worried about, but his/her nice fat bonus.

anothervisittothepark Tue 22-Jul-14 20:38:36

Yes i did think the gp practice must have finsncial incentives.

Pinkfrocks Tue 22-Jul-14 20:59:18

another you won't have been exposed if both you and an only lifetime partner were virgins. Any other variation and then you will have a risk ..yes? I think- and may be wrong here- that HPV can be transmitted in other ways apart from just PIV.

littleme61 Tue 22-Jul-14 21:04:01

Rabbitstew.....I think I already explained why I wanted out of the surgery...perhaps I should have just stood there and said excuse me...but I don't want your damn test...keep it to yourself...but didn't.
I have actually only seen my GP 2 times since I have moved into a new area....and actually been on his list for over a year before I was asked to see the nurse for high blood pressure...which sadly is heredatory in my family and has caused both the death of my nan and my mum! So this being something I need to keep a close eye on...I am not happy that I felt this was thrown at me whilst in the room..plus the nurse being called in...me not even being given eye contact and hearing the doc say...make her an appointment on the way out....didn't sit well with me. I am planning on writing an opt out letter...like alot of the other ladies here having received letters over many years (18 for me!)...and destroying them...I now feel cornered. I am rather worried about being struck off after reading some of the comments through this thread....so there you have it....I read about others going through similar which has caused me some concern. TBH.....if I was struck off I would simply complain to someone higher and find a new GP! Just to add Rabbitstew...we are all individuals and act differently in life. Amen for our differences!

Pinkfrocks Tue 22-Jul-14 21:04:25

I still don't get the 'opt out'- we are not compelled to go- we haven't signed up to it, or 'contracted in' though I suspect a GP could - worst case- ask you to leave the practice is you were not willing to participate in preventative screening especially if they lose funding through it.

They will have a target- if the practice is in an area where uptake is low, then you are likely to be called/ pressured into having it done. If they already reach their target then they are likely to ignore the few women who don't turn up.

rabbitstew Tue 22-Jul-14 21:31:15

It is true, littleme61, that we all act differently in life, and some actions and reactions are more effective and constructive than others.

If you only wanted to know where to find a template for opting out, you shouldn't have posted a diatribe about the inadequacies of your GP's surgery and your personal reaction to it.

littleme61 Tue 22-Jul-14 22:51:29

Rabbitstew.....I didn't realise there was a troll waiting to pick on my every word...!!! Next time I will save my conversations for nicer people! Get a life!

littleme61 Tue 22-Jul-14 23:04:28

It would be nice to have had some constructive replies but I must have mistaken this thread as a place where adults posted comments, not school yard brats! Anyone with a brain cell like to continue this thread?

Bourdic Tue 22-Jul-14 23:23:24

My understanding is that they need an opt out form so that the surgery can reach the target which triggers the payment - the target % is a % of all eligible women minus any opt outs - hope this makes sense. So it s for their financial benefit

rabbitstew Wed 23-Jul-14 07:49:49

littleme61 - perhaps you should consider the tone of YOUR comments before your accuse others of being unconstructive. You have been a combination of whiney, aggressive, defensive and downright rude from the moment you posted. You reacted badly in the GP's surgery, yet you accuse others of having the problem.

DayLillie Wed 23-Jul-14 12:41:18

I would have, with this situation sprung on me unexpectedly, been too cross and humiliated to reply sensibly, and it would have resulted in me being very rude to the receptionist and walking out in tears. It is made all the worse if it is something I feel strongly about. Leaving and complaining by letter is probably far better, and less likely to get you removed from the GPs list.

It is nice if you can complain correctly at the time, but I need more time to think things out and express them properly, and can understand littleme's situation.

chockbic Wed 23-Jul-14 12:43:42

I've had three letters from the GP for cervical screening.

Never been given a blood pressure check or test for diabetes.

DayLillie Wed 23-Jul-14 12:55:58

Once you are over 40 something, they will send you letters for a health check where they will do these, along with a basic cholesterol test.

www.nhs.uk/Conditions/nhs-health-check/Pages/NHS-Health-Check.aspx

I have not found it useful, as I have had all those tests done recently for other things, so have not gone for it. There is no evidence that having these check ups regularly will help the general population.

At my gps, I saw the doctor and asked for a cholesterol test as I was worried about it and had it done. I am sure you could ask for a nurse appt and they would do a BP and urine test, if you wanted.

Pinkfrocks Wed 23-Jul-14 13:10:06

The NHS doesn't seem to do joined up thinking when anyone does have these tests elsewhere. I have had 3 routine mammograms referred privately via my gynae and 2 smears. The results clearly go back to my NHS practice as the letters I get are ccd to them. However this must not be entered into the 'right' data base because I've since had 2 letters asking me to have a smear and mammogram, within months of having them privately. I have so far ignored them, tough did ring up about the mammo as they had given me a day and time for it at a local portable screening centre and I wanted someone else to have the option.

RedToothBrush Wed 23-Jul-14 14:59:00

There is no evidence that having these check ups regularly will help the general population.

Not only is there no evidence, but no research has even been commissioned. They just implemented the idea without assessing its value based on the assumption its beneficial which is shocking. It could be costly, mean that people end up on medication without improving their health but putting them at risk of side effects, it could feed anxiety, it could restrict access to care for people who have conditions which do need monitoring by taking up appointments, it could even in theory have a negative effect on life expectancy through side effects of over diagnosis. The point is we just don't know. Its a live social experiment which we are unwitting guinea pigs.

In response to everyone saying "just ignore the letters" or "just change surgery" I think you don't fully understand the problem.

If you go to the doctors and you are being harassed in person it is very difficult for some people to assert themselves. I have previously been reduced to tears by on GP over it, and she still kept pushing. It destroyed my confidence in her. Thats NOT MY FAULT. That is the fault of the doctor for applying undue pressure which is totally unethical. So I can completely understand someone "sneaking out" as someone on this thread has delightfully put it. I can't abide that attitude as it assumes everyone feels able to do that and its just not the case and doctors have a professional duty to understand this.

As for "just changing GPs". Ever tried it? I have. Lets just say its not exactly easy and I encountered obstacles in doing this. The result is I avoided the GP completely and used other NHS service providers were necessary. It is fortunate I did not develop a health problem during this period.

I have opted out of my new GP's surgery. They don't bother me in appointments now unless its relevant. However, it has not stopped centralised letters coming.

Opting out is more than just ignoring letters. Its about feeling comfortable about going to the doctor, without fear that you are going to feel pressured to make an appointment and that your decision will be respected not constantly questioned.

Pinkfrocks Wed 23-Jul-14 15:19:13

I had an interesting chat with my consultant gynae about screening. He is one of the top consultants in the UK ( voted by other consultants) and as it's totally private he doesn't stand to gain anything financially from me being screened- I pay to see him for something unrelated and pay the hospital /lab for screening.

I trust him 100%.

His opinion on screening and 'over screening' is that it is beneficial to the individual who can then make an informed choice as to the next- if any- step.

Personally, I don't understand why anyone would opt out of cervical screening unless they are a nun or a virgin. I have 3 friends who had the worst level of pre cancerous changes picked up by a smear. It's clear what the outcome would have been otherwise.

littleme61 Wed 23-Jul-14 15:23:46

Thank you Redtoothbrush....all the above agreed with and any agression or nit picking it totally uncalled for! I hadn't started out angry but after this 'rabbit' person finding something to be snidey about in everything I have posted I can only feel sorry for them to feel the need to do so instead of being constructive! I don't go online to pull someone else apart and don't expect others to do so either!
You can't just ignore everything, because when you are in the surgery for another reason they will try to get you at that point. And changing surgeries is not a quick fix answer either if doctors are told at every surgery to fill their quota.....I would have the same problem again. This is down to choice and not feeling harrassed....some interesting points made here!

anothervisittothepark Wed 23-Jul-14 15:27:41

I must agree that ignoring the letters isnt that easy. I ended up being tested before i was even sexually active. I got sick of the letters being sent. I was still living at home and got embarrased that i was constantly being sent letters from gp. I tried telling them to stop but they just ignored me and co tinued harrassing me.

rabbitstew Wed 23-Jul-14 19:15:24

I agree that a GP should not put pressure on patients in that way, that talking about someone to a nurse while in front of that person is very rude, that it is not easy just to ignore letters telling you that you should have a screening test, and it is not always easy to explain at the time to someone why you feel they are putting undue pressure on you and that you do not appreciate it. Sometimes it is easier and better to set all this out in a letter, afterwards.

However, I disagree that it is acceptable for someone who specifically said they were "furious" in their first post and whose every other post has attacked anyone who disagreed with them in any way, to subsequently claim that they hadn't started out angry and that their offensive use of language is all the fault of someone they have so far called a troll, schoolyard brat, having no brain cells and this "rabbit" person. littleme61 -if you did not come onto this thread to be attacked for your comments, you have no right to be so unbelievably offensive yourself!!!

LightastheBreeze Wed 23-Jul-14 20:38:33

I have ignored the last 2 letters they have sent me, luckily I don't go to the GP much. With the breast screening I just rang up and cancelled the appointments so they weren't wasted and someone else could use them.

I'm just waiting to be told it would be best to take statins daily, as I'm over 55, that seems to be the current thing now.

littleme61 Thu 24-Jul-14 09:18:19

In reguard to the above comment from rabbitstew.....please check ....WIKIPEDIA
In Internet slang, a troll (/ˈtroʊl/, /ˈtrɒl/) is a person who sows discord on the Internet by starting arguments or upsetting people,[1] by posting inflammatory,[2] extraneous, or off-topic messages in an online community (such as a newsgroup, forum, chat room, or blog) with the deliberate intent of provoking readers into an emotional response[3] or of otherwise disrupting normal on-topic discussion.[4]

Every response was aimed at you....if you want to post comments to people that you know will get a negative response then this is an accurate description of you.....if you don't like receiving a negative response perhaps you should choose your words more carefully!

rabbitstew Thu 24-Jul-14 09:52:14

But littleme61, your very first post was inflammatory - it came 4 months after the last post on this thread, and yet you came out arguing. I'm not sure who with, but from the start you were angry and provocative in your choice of language. Does that make you a troll?... As for "Every response was aimed at you"?... What's that supposed to mean? Your response to angeltulips was calm, polite and measured, was it?

And in regard to your comments, it is never acceptable to call someone a schoolyard brat or lacking in brain cells. Look up the definition of "offensive" why don't you?

PhantomTollbooth Thu 24-Jul-14 10:06:00

I am curious as to why receiving these letters is so traumatic. They are easily recognised and binned. I don't go for pap screens because I too have weighed up the risks (am a HCP and medical writer) but to be honest the rigmarole to be taken off the recalls as described by yourselves is a lot more trouble than the few seconds it takes to bin.,

And if your doctor pesters you, change them! I have NEVER once been pestered or questioned by mine or any practice nurse. If you took the time to choose a GP more carefully, you'd not have this problem.

PhantomTollbooth Thu 24-Jul-14 10:13:48

As for changing GP practices- I have never found that onerous either having had at least twelve in the course of my life due to house moves and other factors.

It is not hard, not for most people anyway unless you live in a tiny village with only one surgery- then you could be stuck. However there are usually other GPs you can see within a practice.

sallyem Wed 13-Aug-14 20:09:32

Just to interject with the opinion/experiences of someone else who has been following this topic closely:
I was sexually abused as a child and emotionally abuse as a teenager. I am not only afraid of men, sex and relationships, but I am also terrified of anyone talking about, alluding to or going near 'down there'.
When I even get letters about my smear, I get hysterical. I can't control it. No amount of telling me to grow up, get over it, etc, will work, as it is a deeply embedded thing that I imagine only counselling/psychotherapy will fix.
There are people, like me, out there, who are not refusing these tests because they are being childish, pedantic, whatever. It is because of a deep, abiding terror of the test. Whether it be because like me it feels tantamout to submitting myself to abuse (again), or whether it's because of a phobia of another kind. It is possible to want to opt out because you just.cannot.do.it.
Please have a heart when you say you think it is silly not to want to do it.
As it is, I am going to go under general anaesthetic to have it done as I am terrified by everything in the media about cervical cancer.
If it is clear I will be opting out which is what led me to this post.
Yes, dying of cervical cancer would be horrible. But to me, the idea of going through this horrendous test (it is horrendous to me) is worse. It isn't logical, I admit. It just is what it is.
Sorry for the long post.

Pinkfrocks Wed 13-Aug-14 21:07:25

sally- are you able to access counselling via your GP?
How would you feel if you were pregnant or had to have examinations for any other kind of gynae issue- not just smears?

I am sure there must be support for women like you including maybe practising with a speculum at home and overcoming your phobia- which is what this is.

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