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Opting out of cervical screening

(92 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.

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


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.

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).

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.

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