It's Cervical Cancer Prevention Week. Put your questions to the experts from Jo's Cervical Cancer Trust, Friday 27 Jan, 1-2pm

[RachelMumsnet]

To mark Cervical Cancer Prevention Week, we’re running a webchat on Friday (27 Jan) lunchtime, between 1 and 2pm with Adeola Olaitan and Claire Cohen from Jo’s Cervical Cancer Trust. Please join us then, or post your questions in advance on this thread.

Every year in the UK, around 3,000 women will be diagnosed with cervical cancer. It is is the most common cancer in women aged 35 and under. Adeola Olaitan, Consultant Gynaecological Oncologist at the University College London Hospital, and Claire Cohen, Head of Information and Education at Jo’s Cervical Cancer Trust will be on-hand on Friday to answer your questions, whether you're unsure what the symptoms are, have questions about cervical screening (smear tests), are worried about your chances of contracting cervical cancer, or you've been diagnosed and want to know more about treatment and support.

Join Jo’s Cervical Cancer Trust this week for their #SmearforSmear campaign to raise awareness across social media this week. Find out how you can join in.

Cheryl-in Essex you cannot opt out unless you have had counselling and your GP signs the opt out form to say you have been counselled. This is the Essex Local Screening Office. This whichs rape and assault victims will be pushed to disclose their reasons. This is a definite breach of the DPA. Opt out from screening is no different to opting out sending financial information about other products. The way the NHS operate is unlawful.

As I understand it watching Victoria Derbyshire this morning GPs get a flat rate of £80 per registered patient per year, plus incentives for certain things like vaccination take-up.

That's ludicrously low - in a year I need as a bare minimum two nurse appts (Pill check) plus one set of thyroid bloods. I bet as soon as I make an appointment for anything else they are losing money on me.

So if I refuse a smear that they would get additional funding for, that would mean I'm reducing total funding for the practice. Of course they don't want to let that go without a bit of encouragement.

Another disappointed one here. They didn't even attempt to engage with the question. The charity does some great work in terms of supporting women who want screening and who are experiencing cervical cancer, but some of the other attitudes leave a great deal to be desired.

I also found this wording from the poster Samantha Walsh upthread particularly worrying:

I worry that already 1 in 4 women don't attend smear test appointments and by removing the phone numbers to call to book from the letter and making the wording softer "Your Choice" even less women will attend.

If women are attending because they don't realise they have a choice, that's hardly a good thing! I've had letters that were far too confrontational and did nothing to spell out the optional nature of the procedure. We need less of that, not more.

Some women may choose not to be invited for future cervical screening
tests. If this is the case, the woman may ask to have her name removed
from the list of eligible women. Before this request can be implemented,
the following conditions must be satisfied:
• The woman must be provided with sufficient information to enable
her to make an informed decision about withdrawing from the
cervical screening programme – this must be in a format which is
accessible to her. It should include information on the condition being
screened for, the screening process (including risks and benefits) and
the consequences of attending or ceasing.
• The woman must be informed that withdrawing from the programme
will prevent her from receiving any future invitations or reminders
about cervical screening.
• It must be made clear to the woman that she can be returned to the
programme at any time at her own request.
The woman should put her request to withdraw from the programme in
writing to confirm that she has made an informed decision. The template
letters in the Appendix (form B for cervical screening) have appropriate
wording for this purpose. If a woman is unable to sign a standard
form, for example because of a severe physical disability, then alternative
methods of communication are acceptable according to individual
circumstances.
A copy of the confirmation letter stating that the woman has been withdrawn
(ceased) from the screening programme should be sent to her
GP.
Tipsyscat You will have to just repeat I have read Cervical Screening: The Facts like your prisoner number.

I can find no need for counselling in the guidance. Not even the practice nurse of the GP signing it off. Just a letter.

phescreening.blog.gov.uk/2016/09/30/whod-opt-out-of-screening/

PHE support your right to opt out. The recognise that screening is recommended for the general population if it will do more good than harm, and that this is not necessarily true for the individual person and they can make their own choice.
If circumstances change, you can opt back in again. Simples (should be, anyway).

These news articles come from Jo's Trust latest Press Release. They give supposed reasons for non-attendence but fail to acknowledge a large amount of non attendance may be due to a woman's informed decision not to attend www.elleuk.com/life-and-culture/culture/news/a33608/smear-test-cervical-cancer-screening/ It's shocking they are ignoring women's informed choice. An incredibly biased Charity that does immense harm to some women who are de-registrating or avoiding the GP as has been discussed/documented on Mumsnet many times before. It seems a top UCLH Consultant supports the Charity's stance of trying to deny women an informed choice on intimate screening/examinations.

If women are attending because they don't realise they have a choice, that's hardly a good thing! I've had letters that were far too confrontational and did nothing to spell out the optional nature of the procedure. We need less of that, not more.

My DdepartedMIL attended every one of her cervical smear appointments. She always did the 'right thing'. For her and DFIL, the nearest thing to pre-marital sex was dancing a waltz at the church social, then a lifetime of total fidelity.
At the time, the powers that be were bemoaning the fact that the people who did not go for cervical smears were the ones who were getting cervical cancer. Strange, that

Cherlylene unfortunately it's not that simple, not in Essex. NHS England's Essex Screening Office insist on counselling and countersigning by your GP. Indeed I booked marked a internal document from the central London NHS England Screening Office which states "women should not be opted out of the screening programme unless they are incredibly angry and distressed"! I have kept a copy feel free to PM if it is useful to anyone making complaints.

I don't see why a woman needs counselling before being "allowed" to opt out of the screening program. How patronising. I would write a letter to the GP surgery and the screening office stating my position. I would also state that any further communication would be considered harassment. Any future consultation with a GP or HCP where screening was mentioned, I would state that I have opted out and the subject is not up for discussion.

One would hope it means being offered counselling to deal with anything making you feel unable to go, for those who are choosing not to go because of the risk/benefit of the procedure itself and not the screening more generally.

So if a woman says "I can't go because I'm too scared" then they should say "can we help you be less scared?" before they say "ok we'll opt you out".

Anyone who needs a copy for the Essex Local Screening Opt Out that needs countersigning by a GP please feel free to PM me I have a copy. ToadsforJustice under the Harassment Act it is criminal offence to cause alarm/distress on two or more occasions. Screening could be deemed to be Harassment especially as the central London NHS England Screening Office internal document state s women should only be opted out if they are extremely angry and distressed.

MrsPorter no woman should be forced to explain their reasons to opt out. It stops women attending when they are I'll and legally is a breach of the Data Protection Act.

It is very difficult to find the local area office. My local CCG website only offers the leaflet, links to the national site, and a video for people with learning difficulties by the ubiquitous Jo's trust.

No info on which lab it goes to, what it does (primary screening by hpv, or cytology) or even where it is. And certainly no info on opting out.

The leaflet gives you lots of information so that you can decide whether to have your smear - but not whether to not have it and no information as to how to go about it at all. So it really is giving you a Hobson's Choice.

If you don't go, you get this on your notes: Coded entry Cervical smear non-responder (New Episode)

I have another 3 years to go before I need to opt out and am hoping that something better gets sorted out in the meantime.

I'm going through this at present and I feel there's a place for sensitively asking the equivalent of:

"Are you not coming because you don't believe the benefit outweighs the risk in your case, or because you have a psychological/physical barrier to attending the smear test procedure?"

There are patients (including me) who believe in the benefits of screening in general, but can't face the particular undressing/stirrups process. We'd like to want to go. The opt out process is an opportunity to identify these patients even if they haven't already tried to access therapeutic routes, and even if the patient does still opt out they might be referred to MH services as a result of asking the question.

So I think it's valid to offer counselling as part of the process, though certainly it is unacceptable to require it.

Patients legally have right to opt out yet it is being denied to them as it's dependant on counselling and GP countersigning. All it needs to say is if are unsure about opting please see your GP not a requirement to do so. Personally I have an issue re opting out of something I have never consented to participate in. Screening should be opt in only.

I am sure that the practice nurse could find time to talk to you about it if you ask. They are usually pretty nice - mine always have been. TBH, I have never found it particularly bad - you only have to whip your knickers off and there are no stirrups.

I am quite happy to whip my knickers off if it benefits me, but I find the whole thing is stressful as it is utterly pointless and not benefitting me - I have 30 years of negatives to prove it (and no, they do not offer me relief - I don't even bother asking for them). For several years I have just had it done to stop the bloody letters coming. I would like a way to get them off my back and give me space to deal with all the other screening stuff they keep throwing at me (general health, bowel scope and breast squashing to date).

Shocking women should have to agree to screening to stop the letters coming. Screening programmes need a complete overhaul and become opt in only for those who give informed consent to participate.

Well, now is their chance! Apparently, they need a new IT system, as well as changing how all the labs work and what the people do who work there. When they bring in primary HPV screening, they will need to vary the intervals between screening according to the results. It is all in the Screening Blog.

However, if past NHS IT is anything to go by, it will add years to the project and things will have moved on again by the time they change over .

Patients legally have right to opt out yet it is being denied to them as it's dependant on counselling and GP countersigning

Right, so actually what you're objecting to is that it's a requirement and not just an offer. I agree: that's shit. There's a clear implication that a woman's body belongs to society and she has to take extraordinary steps to avoid being poked and prodded, and that she's getting extraordinary treatment to be permitted to do so.

Yes correct MrsPorter that is the harsh reality. Ever get the feeling this web chat is not going the way Jo's Trust intended. There are loads of us here with differing but serious concerns.

It would appear from internet searches that those who operate the call/recall system insist on a one to one counselling session before they will cease. This is not mentioned in the national guidance.

Not sure all GPs will - it is a waste of time when they are so busy.

One also suggests that a letter is sent after 5 years to see if you still want to be ceased (ie not get any letters - I am on 5 yr recall anyway)

Interesting Jo's Trust appear to have mobilised Twitter to drown out Mumsnet. It is a common technique. Jo's Trust works closely with the Dept of Health/NhS England. They are given acknowledgement on the smear leaflets. They seem to have mobilised CCGs, NHS England to tweet with the hadhtag #smearforsmear first thing on a Sat morning. Jo's Trust really did not research Mumsnet very well. Loads of us have had these concerns for years. Way before I ever read Mumsnet people were posting the problems and consent issues.

If you’re a GP or help people make decisions about screening then please remember no one should ever be pressured into screening. At the national population level, these screening programmes prevent illness and save lives. But screening is not always the right decision for an individual and that should always be respected

From Public Health England
phescreening.blog.gov.uk/2016/09/30/whod-opt-out-of-screening/

I watched an episode of the GP programme Behind Closed Doors. There was a man with warts on his tongue. No advice given about HPV or oral cancer. No prizes for guessing how he probably got the warts.

We realise a lot of people have been asking about opting out of cervical screening and Jo's Trust have sent over to us their response to your questions about this:

Attending cervical screening is absolutely a choice and if a woman makes a decision about not attending then this should be respected. However it is vital that all women are able to truly make an informed choice about attending. For this to happen it is essential they have all of the information to be able to make that decision and it must be presented in a way that they fully understand. Our research has shown that for significant numbers there is low understanding of what cervical screening is for and the role it can play in preventing cervical cancer.

For example over two thirds of women aged 25-29, and 20% of women over 50, do not think cervical screening reduces a woman’s risk of cervical cancer, therefore we are concerned that women who are choosing to opt out or delay screening may not be fully informed about the health risks of not attending. Cervical screening prevents three quarters 75% of cervical cancers and saves an estimated 5,000 lives every year in the UK and not attending is the biggest risk factor to developing the disease. Since the screening programme was introduced we have seen significant drops in both incidence and mortality and, therefore as a charity that believes cervical cancer could one day be eradicated we would encourage women to attend this potentially life-saving test when invited.

Naturally, they fail to engage entirely with the point. Ie that women can't make an informed choice if they aren't told about the risk of having painful and invasive procedures, with potential side effects, for issues that likelier than not would've resolved themselves anyway. Until they do that, all the stuff about informed consent is no more than noise. Very disappointing. I'd like to see them invited back to talk about this, instead of mouthing more platitudes at us.