Opting out of cervical screening

[TeaAndHugs]

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]

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]

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


try again for the link

[TeaAndHugs]

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]

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

[MoaningMingeWhimpersAgain]

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]

Ok, thanks. I'll do that :)

[portraitoftheartist]

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]

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]

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]

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]

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]

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]

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

[redrubyshoes]

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

[BelaLug0si]

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]

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]

@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]

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]

A smear saved my life aged 36

[TeaAndHugs]

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]

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

[LonelyLinda]

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]

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]

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

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 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 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]

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! :)