We make choices every day of our lives. Some are minor, while others, such as those relating to our health, could have significant long-term implications.
In this country health screening is not mandatory; each type of screening is a choice. People can decide whether or not to have it based on the information we provide and their own attitudes and values.
So why do we focus on choice rather than just making screening compulsory? Wouldn't compulsory screening help more people?
The key thing is that screening programmes are offered, predominantly by the NHS, to people who had not sought advice about that problem. Nor would be they necessarily think they are at risk.
We know that the screening tests have false positives (they wrongly tell people that they have the risk or problem when they don’t) or that people don’t have a problem when in fact they do.
Much effort goes into making sure that chance is minimised but cannot be completely eliminated. This means that people who weren't worried about something might be made worried or (if they have more tests) harmed when they would never have had a problem.
It is unethical not to tell people about this and allow them to choose what it right for them. If they are more concerned about the possibility of a false positive then they may consider that the screening programme is not for them.
So why do we offer programmes? Each screening programme offered by the NHS will do more good than harm for the whole group of people who are offered the programme.
This is why it is so important to give people full information so they can decide for themselves. But how do we help people make an informed choice that is right for them?
Informed choice – what is it all about?
The report Informed Consent in Antenatal and Newborn Screening (2011) uses a definition of informed choice as one that is based on relevant knowledge, is consistent with the decision-makers’ values and can be made at a time and place where a person, faced with alternative choices, is able to make their preferred choice.
This report acknowledged that, for informed choice to happen, people need more than just to be provided with information; the information must be understood and presented in a way that does not suggest that there is a right or wrong choice.
There are a number of methods we use to help people make these important and sometimes life changing decisions.
The NHS Abdominal Aortic Aneurysm Screening Programme developed a screening patient decision aid to help men and their families understand the potential benefits and risks of screening so they can decide if they want to be screened, based on the available evidence.
This is also an important tool for GPs, helping them to respond to patients’ questions and concerns, discuss the screening process and support patients in making an informed decision.
The published information we provide to patients and health professionals is crucial.
The principles of informed choice led to the development of a completely new antenatal and newborn screening booklet.
New bowel cancer screening leaflets were also published in 2013 as part of Informed Choice about Cancer Screening.
The principles we follow to help people in the decision making process include:
- People should understand it is their right to accept or decline screening and this choice should be clearly communicated;
- The information should be balanced and include detail about benefits and harms;
- The information should be easy to understand and written in plain English. More detailed information is available online for people who want to find out more;
- The information should be scientifically accurate;
- The resources are regularly evaluated so they can be improved in future;
- Key people, including the public and health professionals, are involved in the development of the information.
Breast screening
Breast screening is an excellent example of the amount of work that goes into creating quality information for patients.
Breast screening does save lives (1,300 per year according to the Marmot Review). But for some women, they may be diagnosed with a cancer, leading to treatment, when the cancer may never have become life-threatening.
So it is clearly very important, in this case, that women understand the potential for harm before making a decision about breast screening.
Over 1,000 people were consulted in the development of the most recent leaflet, as part of an independent review in 2012. This review included critics of the breast screening programme and women of screening age. The final product was universally seen as an improvement over previous versions.
But it is not enough to rely on online tools and published information. The role of health professionals is absolutely crucial in the decision making process. Therefore, we have an extra duty to make sure health professionals are equally aware of the risks of screening, as well as the benefits, and are able to explain this balance, clearly and in an unbiased way, to those thinking about screening.
To support health professionals promote informed choice around screening we developed a national training programme called ‘Screening Choices’ in 2005. All NHS staff had the opportunity to undertake training in various formats from e-learning to formal events. The electronic component was used over 10,000 times and the taught sessions covered the whole of England. The resource is now being developed into a stand-alone e-module.
Could we be doing more to help people make these choices?
We know that public understanding of screening varies. People also understand and relate to information in different formats and using different approaches. Some people prefer descriptions, others diagrams or videos. Many people don’t have time to read more than the basics, but some want to read everything they can about a subject.
That’s why we have produced a range of materials that everyone can find useful. The concept of informed choice in health screening is a constantly evolving process and, as such, we keep all our resources under regular review, introducing new ways of communicating with people and updating what we already produce.
To further improve the way we communicate the risks of screening, and to ensure a consistent approach, the UK National Screening Committee is establishing a public information and professional development group to share information and best practice across the four UK countries. This will provide a platform for regular discussions and knowledge sharing in order to develop a quality approach to information.
We’ve come a long way over the last few years in terms of producing world class public information. Our online screening information is now part of NHS Choices, where more people can find it, and our leaflets are read by millions of people every year. We also have some great online decision aids. But there’s a lot more we want to do, such as producing better video content to support our leaflets and using other digital channels and social media.
As usual, if you have any ideas about how we can better support the public and health professionals to understand screening and the choices that are available, please do let us know.
46 comments
Comment by Deirdre posted on
So many people don't know they have a choice, and believe it is compulsory because threats were used in the past to get compliance, and because of media campaigns not making it clear that people have a choice. Campaigns have focused on making women feel silly, embarrassed and scared if women chose not to attend screening. We don't see men being made to feel like this if they don't want to be screened. A lot of the cervical screening campaigns are downright patronising and insulting. The recall letters in the cervical screening programme make women feel it is a summons they must obey. Although the leaflet says it is a choice, the letters do not give women an opportunity to say, no thank you. They just keep on coming, and the GP keeps asking. Women have a legal right to know, how they can stop the letters, opt out of the programme, and make sure that this annoying pestering is not part of future medical consultations.
Comment by Anne Mackie posted on
Hello. Thanks for your comment and I'm sorry that you feel the information isn't always clear that there is a choice. If there are particular instances where the balance doesn't seem right please let us know and we will have a look. We keep all screening information under regular review and take the issue of informed choice very seriously. With regard to cervical screening, we are in the process of developing a new set of letters for women which support choice. The new invitation letter clearly states that it is the woman’s choice whether or not to attend for screening, and it will be received alongside a new leaflet titled “Cervical screening – helping you decide”. It is also possible for women to ask their GPs to remove them from the screening list to avoid receiving invitations if they so choose. Best wishes, Anne.
Comment by Pete Taylor posted on
This is all very well, but while you have organisational and population level targets on screening uptake you cannot truly claim to be giving people choice. On the population level, the targets mean that you have already decided the "right" decision.
The targets have insidious effects on the advice patients are given: how can people be expected to give truly balanced advice when their employer faces criticism and/or penalty if too many people make the informed choice to decline?
The Government routinely advises us to avoid biased financial advice from organisations with sales targets to meet, and instead seek an independent opinion. Why is the same not true for screening?
Comment by kat rehman posted on
May I suggest that GPS are informed that screening is a choice?? Despite informing my practice in writing, verbally and signing a disclaimer I am still hassled every visit to submit to a smear test.
I am asked why I didn't want a smear test, I just repeat I signed a disclaimer and won't be having the test. My doctor just sighs and makes it known he's not happy. I view this as harassment now.
Comment by Anne Mackie posted on
Hello. I'm very sorry to hear that you continue to be asked by your GP about whether you want to attend your cervical screening appointment. It is entirely your choice as to whether or not you want to take up your screening invitation and it is for you to decide if you would like to opt out of the programme entirely. Screening is very much down to individual choice. We have GPs on the advisory committee that sign off the cancer screening information materials and we do let GPs and the public know that cervical screening is a woman's choice. Best wishes, Anne.
Comment by Ms Duncan posted on
Women can ask their GPs to remove them from the screening list to avoid receiving invitations, Really? This is something I have done verbally and by letter, yet still I receive the invitations, still at every GP visit for unrelated issues screening will be mentioned and is seen as necessary to counsel me, ignoring my right of choice. Perhaps when your new leaflet is eventually printed it will include an "opt out" form, even though we didn't opt in? Cervical screening really is not all what it seems and after 6 years of research and shock, I will screen for nothing. Almost every other woman I know has had cervical treatment for abnormal cells, of which most are overtreatment, but they all still claim to be cancer survivors, it makes no sense.
Comment by Deirdre posted on
I think there is a huge discrepancy about what the NHS Screening Committee thinks goes on in GP practices and what actually happens. Far from being offered a choice the following instances have recently been posted elsewhere online:
A women wrote that the practice nurse told her "there was no getting away" and that "we hunt women down like a terrier at this practice"
Another reported being scolded for being "overdue" in front of a crowded waiting room.
Of GP's ordering receptionists to book appointments for those who have just refused and telling them to attend.
Those never sexually-active having to "report" their virginity to avoid testing or simply go along with testing against their will. This "virginity declaration" has dogged some women's every GP appointment throughout their adult life. How do you think this makes women feel? It is comparable to the human rights abuses carried out in developing world dictatorships.
The incentive payments to GPs have robbed women of their human rights and dignity since implemented in 1989 and has done much to destroy the doctor/patient relationship today.
Comment by kat rehman posted on
I think that since the cervical screening programme has already commandeered the details of every so called eligible woman for the purpose of "inviting" them for screening, the same programme should send each one a questionnaires asking their opinion of the programme.
I'm sure the authorities look at the figures of how many women screened and think we adore the programme where in reality we are harassed and coerced into complying
Comment by Elizabeth posted on
I think informed consent is largely an academic exercise in women's cancer screening and sometimes in practice, there is no consent at all. Coverage is the thing that matters and protecting the program. (not women) Take note of the language used in women's cancer screening, "capturing" women, "non-compliant women" or "the unscreened" or "overdue" or "failed to attend" or "all women must" or "all women should".
I don't see or hear anything that suggests we have a real choice about testing. Opportunistic screening is also openly encouraged with GPs rewarded for reaching screening targets. (but this potential conflict of interest is never mentioned to women)
I don't understand how the medical profession could possibly think this is an appropriate way to treat women, it says to me there are some serious issues and inappropriate attitudes within the profession. You don't have the right to make screening decisions for us, to accept risk on our behalf and our bodies belong to us, not to the medical profession and these programs.
Some women are ambushed in the consult room with a power dynamic that means some will unwillingly submit to the test, we might not care who looks at our sprained ankle, but a pap test is a very different matter. I also believe that predatory doctors have used this program to take advantage of women who enter their consult room for any reason, the lack of respect for consent and informed consent means these doctors can safely pressure or even coerce women into a pap test.
I'm 57 and have never had a pap test. I did some early research and rejected them, but quickly found that, "no, thank you" was unacceptable, we were all just expected to screen and scolded and judged if we didn't. There is an anger, an impatience with women who refuse to submit when directed to do so.
I've listened to this program mislead women for decades, violate our legal rights and know many women who've been traumatized and harmed by this program. Some women now avoid all medical care because of past pap test/false positive/excess biopsy/over-treatment trauma or pap test pressure. Almost all of the damage was avoidable with an evidence-based program and informed consent.
We see the same thing with breast screening, the same disrespectful and inappropriate attitudes and unethical practices. (I've declined to screen, an informed decision)
When you have screening targets in place and when you reward GPs for reaching targets, when you dismiss informed consent (and even consent itself) this can't be cancer screening, it's medical abuse.
I hope there is some justice one day for all the women abused by this program.
Informed consent...it's missing in women's cancer screening programs. We might get lip service, but it's business as usual at the surgery level. The language says it all, unscreened, non-compliant, overdue, should, must, necessary, failed to attend etc. etc.
Comment by Dr Anne Mackie posted on
Hello Elizabeth
Thanks for your comment and I'm sorry you feel that the information provided doesn't always make it clear that there is a choice.
We keep all screening information under regular review and take the issue of informed choice very seriously.
With regard to cervical screening, we are in the process of developing a new set of letters for women which support choice. The new invitation letter clearly states that it is a woman’s choice whether or not to attend for screening, and it will be received alongside a new leaflet titled “Cervical screening – helping you decide”.
It is entirely a woman's choice as to whether or not they want to take up their screening invitation and it is for each woman to decide if she would like to opt out of the programme entirely to avoid receiving invitations if she should so choose. Screening is very much down to individual choice.
We have GPs on the advisory committee that sign off the cancer screening information materials and we do let GPs and the public know that cervical screening is a woman's choice.
Best wishes
Anne
Comment by kat rehman posted on
Dr "Mackie I appreciate your replies, re inforcing that we do have choice however I think what's needed is at least an overhaul of the cervical screening programme and re education of doctors. It's not appropriate to coerce and force women in to screening. It's not appropriate to hassle a woman about screening in the middle of a medication review for severe migraine as happened to me. I have signed a disclaimer for my GP surgery and contacted NHS England informing them I don't ever want to hear from them again.
There have been trials of cervical screening done via urine or blood tests and these showed some success and would certainly be more acceptable to some women so why isn't this being built on? There is also a home self testing kit, why aren't women being offered this option? If the dangers of cervical cancer are really so serious why isn't more being done to formulate a more up to date test?
Men rejected a rectal exam for prostate cancer and a blood test was quickly devised but women are basically being told get over yourselves and submit to the speculum. It certainly suggests a two tier health care system '!
Comment by Dr Anne Mackie posted on
Hello Kat
Thank you for your thoughts. There is, as you say, lots of research ongoing into self testing and alternative ways of getting samples for cervical screening. Just to reassure you, the UK National Screening Committee (UK NSC) looks at new evidence periodically and also when something of significance is published in journals.
The national screening committee works closely with a huge range of academic and service users in cervical screening. We also produce quite a lot of material for GPs and other health professionals and will continue to maintain that screening is a choice.
In addition, the HPV (human papilloma virus) vaccine, offered to all girls aged 12 and 13 as part of the NHS childhood vaccination programme, holds out the prospect of cervical cancer becoming very rare indeed.
You may be interested to know that the UK NSC has just been consulting on screening for prostate cancer.
Many thanks, Anne.
Comment by kat rehman posted on
Thanks Dr Mackie. I was under the impression cervical cancer is already rare and was declining even before the programme began. I thought heart disease and stroke killed more women than cervical cancer.
As to the HPV vaccine I understood the effects wear off after a certain number of years? And a girl receiving it in year 8 could have lost the benefits of it by the time she's finally sexually active?
Surely instead of developing a test for all women's cancers to be delivered via smear testing as it is now is counter productive as women who refuse the test as it is now won't go?
Am I correct in thinking it's males who infect females with HPV? Would it not make more sense to test and vaccinate them?
Comment by Dr Anne Mackie posted on
Hi Kat
You are right to say that cervical cancer is rare and certainly kills fewer women than heart disease and stroke. There are major preventative programmes looking at both of those issues.
With regard to your questions about the HPV vaccine, the estimated duration of protection is expected to be at least 20 years and is probably longer. Protection is therefore expected to cover the period when a woman is most sexually active and therefore at greatest risk of becoming infected with HPV.
Because the main aim of the programme is to prevent cervical cancer, the greatest benefit comes from vaccinating girls rather than boys. The virus that causes cervical cancer is spread by someone having sex or being sexually intimate with another person who has the virus. Although both men and women can become infected, protecting girls means there are fewer viruses circulating. The knock on effect of this is that the risk for boys of coming into contact with these viruses, and passing them on, goes down.
Eligibility for vaccination programmes is kept under review and the possibility of extending the programme to include adolescent boys is currently being looked at.
We continue to look at other methods of testing for risk of cervical cancer
Many thanks, Anne.
Comment by Elizabeth posted on
Hi Anne
It's great to see you responding to the comments and concerns on this thread, but there really is a serious disconnect between the oversight/management of this program and what happens at the coal face (so to speak)
If we're serious about consent and informed consent we need to get to GPs, make sure they understand this is an elective test and they have no right to pressure women into testing. Women are not due or overdue, screening tests are elective. It's not a numbers game, we have a legal right to make an informed choice.
Also, the Pill has nothing to do with smear testing and should not be tacked onto that consult, women should be free to decline the test, without having to plead their case. Every consult should not be ambushed with smear test pressure.
The emphasis has always been coverage and target payments, that needs to change if we're going to improve the situation for women.
We also need to let women know in clear terms that no one has the right to pressure them into smear tests, they cannot be removed from patient records for declining the test and that harassment to screen by letter, phone or every time you walk into the clinic is unacceptable - there could even be a hotline to report doctors and surgeries who do the wrong thing.
Until that happens this continues to be an academic exercise, we can "say" we respect informed consent, but until we address the issues at the surgery level, nothing will change, the bad old system will continue into the future.
Happy Christmas and hopefully, we'll see some real change in 2016
Comment by katrehman posted on
Dr Mackie what truly baffles me is why so much money, which to my mind could be better spent developing newer non invasive testing or diverted elsewhere in the NHS, is spent harassing and chasing women to screen for a rare cancer why is so much money spent on study after study on how to increase screening uptake, how can we make more women attend? Why is no one listening to women who are saying clearly they do not want this testing??
Comment by Dr Anne Mackie posted on
Thank you for your comment Elizabeth. I will come back to you on this.
Comment by Elizabeth posted on
Thanks, Anne
Also, are you aware of this ad?
It was mentioned by a UK woman on a forum for people concerned about the current approach and conduct of women's cancer screening programs.
"There is an ad at the moment on Brit TV showing a women getting the all clear for CC from her Doc. He tells her that it was fortunate she overcame her fear of smears to have one just in time. Her husband it sitting next to her nodding as if somehow taking the credit for convincing her to go."
Does this ad respect informed consent? Does it convey information on the risks and actual benefits of cervical screening? Does it respect choice?
We're being told informed consent matters for women, yet we continue to see this sort of campaign, I call them scare campaigns.
Or, this: "My Mum missed her smear, now I miss my Mum" (says a young child)
We can "talk" about informed consent, but until the scare campaigns stop, IMO, it says to me there is no respect for informed consent.
Comment by Dr Anne Mackie posted on
Hello Elizabeth
I'm afraid we're not aware of the television advert you refer to, but I am looking into it.
From our perspective, as I pointed out in my blog, it is entirely a woman's choice as to whether or not she wants to take up her screening invitation.
We keep all our screening information under regular review and take the issue of informed choice very seriously.
Best wishes
Anne
Comment by kat rehman posted on
Dr Mackie what would happen to an eligible person who declined bowel cancer screening? Would his \her unscreened status flash up on screen when they visited their gp for say, a throat infection? Would they be bombarded with repeated invitations to screen? Would a nurse phone them to demand their compliance? Would a man be denied viagra or inhalers until they screened or be belittled for being scared \embarrassed? Because bowel cancer affects men too and has a higher death toll.
I recently declined my first mammogram summons, as yet I've heard nothing from my GP but I'm not going to them even though I have ongoing health issues (migraine and anaemia) that affect me more than my cervix. This is because I am utterly sick, pardon the pun, of hassle to have a smear. This educated doctor keeps asking me of I want a smear today? No? Why not? Because o signed a disclaimer and I'm not regarded as am eligible women anymore? All I am to my practice is a vagina, basically! It's not a
Nice way to feel
Comment by Dr Anne Mackie posted on
Dear Kat
We invite people to participate in screening, and send a reminder, but people always have the right either to ignore the invitation, or to request to be taken off the list.
Where people ignore the invitation, we do notify their GP practice.
If someone wants to be taken off the cervical screening programme list, they should write to their GP.
If a person wants to be taken out of the breast screening programme, they need to contact their local breast screening office when they receive their next reminder (the phone number will be included in the information they send out).
If an individual wants to be taken out of the bowel cancer screening programme, they need to contact their local programme hub and complete a ceasing form. The programme hub contact details (mail and telephone) are at the top of the letter sent to each individual invited to be screened.
To clarify another of your points, accessing other aspects of NHS care is in no way dependent on participation in screening programmes.
Best wishes
Anne
Comment by kat rehman posted on
Dr Mackie, I've read your reply to Elizabeth, and maybe from your perspective you are clear women have choice. But it's obvious, from comments here and elsewhere on the Internet, that we are being hounded into screening. I now refuse to see my doctor unless I'm literally on my last legs as it were and I'm not alone.
So how can you. As a screening authority, change this? Because while women are being hounded and coerced into screening, we can't do a lot!!
Comment by Helena posted on
These are interesting comments, and ones which I can fully relate to! For the past 30 years, I've been bullied, harassed, intimidated and hunted down in order to get me to comply with having a smear test. I have refused every single last demand - and yes, they are demands. Even when I was 20 years old and still a virgin, I was shouted at by a GP who absolutely insisted that I consent to having a smear test right then and there. I was in tears, but I refused. A number of GP's also tried to tell me I "must" take the contraceptive pill. Again, I refused (and I'm very thankful that I did). I've been cornered by receptionists in a waiting room full of people, I've been lectured by Doctor's when I've gone in to see them for something totally unrelated, I've been rung up on a weekly basis by aggressive, over-bearing nurses who refused to take no for an answer, who have tried to scare me into having the test. It was only when I told them that I was utterly sick and tired of their harassment and I would be looking into the legal implications of their non-stop bullying that it finally stopped. My GP later apologised to me, telling me that they were under financial pressure from the government and the local health authority to have as many women screened as possible, even though he himself admitted this was a very rare cancer and my chances of developing it close to zero. I now have to sign disclaimers which is fine, although I still find that ridiculous. Why should I have to "opt out" of something I never "opted-in" to in the first place? Because I am female, I am being hounded - literally hounded by the NHS to the extent that I will no longer go to my local GP. I'm even considering removing myself from the NHS altogether. I have now received an "invitation" to attend breast screening. Invitation is not what I would call it. Make no mistake, this is a summons. I have not been invited - I have been told that an appointment will be made for me and I must attend or re-arrange the appointment. No information has been provided as to the pro's and con's of having this screening and no mention whatsoever that this screening is entirely elective - I'm not even yet 50 for another three years so it appears I've been selected as part of a trial. Unfortunately, my cat has been sick on the letter so now I am unable to call the number. I suppose I can now look forward to receiving another 20/30 years of harassment over this type of screening. By my reckoning, I've got perhaps another 20-30 years of life left (although I should be long dead from cervical cancer according to the rants of previous GP's) and I do NOT want to spend it being subjected to NHS experimentation and harassment with regards to their "elective" screening programs. I am a well educated individual - I have made my informed choice and that should be respected. Stop sending out these demands to women. An invitation should read something along the lines of, "..if you're interested in having this screening, please contact your GP's office or the above number to make an appointment." . Stop making appointments for us without our consent, stop forcing us to opt out of something we never opted in to and please make it very clear to women that they do, in fact, have a choice as to what happens to their own body and give them accurate and honest information about the risks of screening.
Comment by kat rehman posted on
Helena, please see my post above and Dr Mackie replied. You can take yourself off these programmes, including breast screening. I phoned and told my breast unit to cancel the summons (you're right, it's not an "invitation ". So far I've not heard another word, but I haven't seen the doctor since last summer even though I have ongoing problems not connected to my vagina!! Hope you succeed in stopping the harassment!
Comment by Dr Anne Mackie posted on
Dear Helena
As mentioned previously, we invite people to participate in screening, and send a reminder, but people always have the right either to ignore the invitation, or to request to be taken off the list.
In your comment you mention about recently receiving an invitation to participate in the breast screening programme. If you decide you want to be taken out of this programme, you need to contact your local breast screening office.
If someone wants to be taken off the cervical screening programme list, they should write to their GP.
If an individual wants to be taken out of the bowel cancer screening programme, they need to contact their local programme hub and complete a ceasing form. The programme hub contact details (mail and telephone) are at the top of invitation letters.
Best wishes
Anne
Comment by Elizabeth posted on
Dr Mackie, what action do you recommend if your GP ignores your request and continues to pressure you at every consult, if you continue to receive phone calls, letters etc. If you're threatened with removal from patient records.
What is the best course of action when the doctor or nurse does not respect your right to opt out of screening? Here in Australia women simply doctor-shop, but that's more difficult in the UK and in the States where you have to register with a GP/surgery.
Comment by Sarah posted on
Could you tell me if the guidelines for opting out of screening listed in the 18/02/16 post would apply if registered with a GP in Scotland?
Comment by Dr Anne Mackie posted on
Hi Sarah
Regarding your query about opting out of screening if registered with a GP in Scotland. Any queries on opting out of the Scottish national screening programmes should be directed to screening@gov.scot
Best wishes
Anne
Comment by Helen posted on
It would be much better if we could opt INTO screening, rather than have to opt out. Then, we really would have a choice.
Comment by kat rehman posted on
Dr Mackie, there are now lots of posts on here by different women. All of them are saying basically the same things and all of them are dissatisfied with the programme and their experiences of it.
This programme is meant to be for our benefit! Please take notice of what we are saying and review the way you conduct these programmes.
Could "invitations " come with a detachable slip at the bottom so women could indicate if they want to be part of the programme? Or why can't we opt in to the programme as the last poster suggested?
Comment by Fiona Rodriguez posted on
There is a lot of conjecture here, and this statement is very biased, are you aware that people are more likely to take the time to complain than to compliment? Are you aware there are only a handful of commenters here presenting an issue, of millions of participants? Are you aware that if a GP is pestering you to be screened, this is a local issue and beyond the scope of the NHS screening committee?
If you have a complaint about being ”harassed” by a GP or health professional, may I suggest you take it up with your local Patient Advisory Liaison Service. Screening is a wonderful thing, and the programmes are always mocked and given grief, and never thanked.
Comment by Deirdre posted on
It is wrong to dismiss the views on this thread as being the conjecture of a handful of dissenters. This topic has received far more responses than any of the other posts and is still being added to today. FYI there are a number of other websites, which go back many years containing hundreds and hundreds of complaints about the force and coercion used against British women in our NHS cervical screening programme. Over a quarter of women are now turning away from the programme and the single biggest reason has been shown by research to be previous bad experiences making women think very hard about future attendance. I followed PALS advice years ago and took my valid complaint about my experience to Healthwatch, who dismissed it as just something women need to put up with. I work for the NHS and it's a huge shame that women are driven to complain on overseas websites because they are silenced at home.
Comment by Kat rehman posted on
@Fiona.. I can't speak for the other posters here, but personally I'm not against screening as such. You think it's a good thing and I respect that. It's for every individual to do what's best for them.
However, personally, we are told it's our decision to screen or not, and myself and other women on here aren't having our decision respected. Helena reports her doctor virtually ordering her to screen. Is that really informed consent? Or respecting her?
Maybe there are millions more women out there who feel as I do, but do so silently and don't speak out, for whatever reason.
How is the NHS respecting us over breast screening, in sending out a. Pre booked appointment without our consent? When no attempt is made to find out how we feel about screening? We are just rounded up at 25 for cervical, 50 for breast.
How is my decision respected when time meant to be for a migraine med review hijacked to berate me for not having a smear test? Is my vagina responsible for the condition?
While we have targets, the GPS being given financial incentives to get more women to screen, informed consent and the right to decline will never be taken seriously. By all means have screening programmes, but your wish to screen is accepted and respected. As a dissenter I want mine to be too. If it was I wouldn't be on here posting at all!
Comment by Elizabeth posted on
Kat, I agree, women who choose not to screen are often pressured, ridiculed and even coerced into testing, this is not good enough. Some women don't feel they can see a doctor for fear of more pap test pressure, some self-manage real health issues.
The law says informed consent is a must for all screening, for men and for women. This program, IMO, has never respected our right to choose, has never provided us with complete and balanced information on the risks and benefits of screening.
If women choose to screen, that's their business, but currently, women who choose not to screen are called defaulters, refusers, non-compliant etc....that says a lot about attitudes in medicine and how women are still viewed and it's time something was done about it. Coverage and targets should be scrapped in favour of real information and informed consent.
Comment by Dr Anne Mackie posted on
Dear Elizabeth, Helen and Kat
I am responding to you all at once as I think your issues are very similar.
We know that for women in the UK screening and treatment for risk of developing cervical cancer has been very effective indeed. The national screening programme has meant that deaths and suffering from cervical cancer are now rare events.
In the beginning of the programme there were no standards (you might call them targets), no prescribed pathway nor any quality assurance (mechanisms to make sure that all the parts of the pathway are working (from admin to IT to doctors and nurses) as they should be. Women were invited and screened and tested and treated according to local processes and enthusiasm. This led to a huge amount of unnecessary discomfort and anxiety for women and NHS clinical time and effort with little effect on deaths.
Recognising this the Department of Health asked that a central system be set up to improve the situation. A team developed standards, described a pathway and set up a system to make sure that all was being done as it should be. This legacy has meant that we have one of the best screening programmes in the world and cancer of the cervix is now rare.
Along the way we have learned all sorts of ways to make the programmes better deliver the health benefits that they promise. Key among them are centrally described pathways, standards and Quality Assurance. Also we learned that opt in programmes are utilised much, much less than opt out programmes. This means that if we were to make cervical screening an opt in programme that more women would get and die from cervix cancer. The introduction of GP payments helped to improve coverage from about 40-50% in the mid-80s to well over 80% in the early 90s
But.... we are also clear that screening is a choice and should not be forced on people who wish to decline. To that end we have produced supporting information for people and clinicians (GPs) that say it's an offer. Doctors being people too will have their own take on this information and we know that some are keener than others but all have been told that it is an offer. There is clear information to assist women who wish to decline to explain how they can do that on the offer letter.
So you may say how come you have targets? Doesn’t that show that you’re not serious about it being a choice?
My answer is that if the target was 100% then you would have a point but the target is 80%. This allows for women to decline. While we don’t know how many women actively decline in the cervix programme we know that in the breast programme it is less than 1%. If that is the case in the cervix programme or even if we say it's 10 times that many then that means there is still a lot of women who have not declined and yet are not being screened. We know that they are most likely to be those at risk as we have evidence that uptake is lower in women from poorer backgrounds who are more likely to smoke, which increases their risk of cervical cancer. We are concerned that such women, who are not screened, have not really made an informed choice not to be screened. It is therefore important we strive to ensure that all women are given a choice.
If you as individuals are being pursued by your GP in what you consider to be an inappropriate manner then you should follow the advice in this link to make a complaint http://www.nhs.uk/choiceintheNHS/Rightsandpledges/complaints/Pages/NHScomplaints.aspx
I hope this is helpful
Anne
Comment by katrehmam posted on
Hi Dr Mackie. I note the new leaflets for cervical screening are here which clearly state it's a woman's choice to attend. I wonder how PHE feels about north Herts health authorities who note that more women are opting out and signing disclaimers and seem to be saying women will not be allowed to opt out until they've seen a doctor for a counselling session? Until they've done this they will not be ceased and continue to receive "invitations " and reminders? Really? To opt out of an elective test? Is it even legal? This comes at a time when over stretched doctors want workers to new able to self certificate for 2 weeks sickness. Less time spent counselling women about smears might help?
Comment by katrehman posted on
Hi again Dr mackie. I realise you are the English authority but I note in Scotland uptake of smeartests has dropped below 70%which I believe would worry the authority as you need a certain number of participants to make the programme viable. Anyway I note a new hard hitting online campaign is being planned. It seems that for whatever reason these campaigns arent working as there have bin quite a few before and uptake continues to drop. I'm amazed no one in cervical screening seems to have taken this in board. The money wasted on this campaign could be used to bring in a self testing kit . UK women will learn very quickly that their Dutch counterparts can self test if they wish to take an hpv test. I'm shocked that though you say you want more women to attend you still don't offer self testing
The Internet is awash with women saying they find the speculum test unacceptable and painful but still we're expected to just get on with it. The advice offered on one website is keep calm and have your smeartests! ! Words fail me
Comment by Helen Wilkinson posted on
I am correct in thinking the reason you do not know how many women have opted out of cervical cytology is because you would rather GPs Exception Report under QOF rather than remove women permanently with the Screening Office via Open Exeter? If GP only Exception Report the Screening Office can retarget these again in 3 years time. Google revealed an internal document from a Central London Screening Office saying women should only be permanently removed by the Screening Office on Open Exeter if they are "extremely distressed and angry". Is my understanding correct re your preference being for GP to Exception Report under QOF rather than permanently removed on Open Exeter so they can be retarget again in 3 years time?
Comment by katrehman posted on
Helen I think it varies. I wrote directly to the screening authorities and they said I would not receive any more "invitations " from them but I think doctors can and do send out letters to try to get you to re engage with screening and also I've heard some surgeries only opt women out of one screening round meaning very quickly the "invitations " start arriving again!
Comment by Elizabeth posted on
Hi Helen,
I wouldn't be surprised by anything this program does or says, in my opinion, it has little respect for women and their legal rights.
Only informed women who stand firm manage to permanently opt out of screening. I never opted-in but made it clear to my GP I would not be screening, did not want to review or discuss further my decision in the future and did not want to waste valuable consult time talking about cervical screening. A quick letter to the Authority had me permanently removed from the breast screening program.
I would never put up with pressure or harassment, it's a try-on, when you stand firm or make a complaint, the "must" and "should" statements usually disappear. I believe this program has always used our ignorance to deceive and manipulate us, they suppressed all real information and then focused on tactics and strategies to get women into the program.
Interesting on new patient forms, you often see the Q: when was your last smear test? Just assuming women have them, IMO, it's another tactic, a denial of both consent and informed consent.
Yet the Q is phrased very differently for prostate and bowel screening.
Why is the approach in women's screening so different to say bowel screening? The latter takes far more lives...
It's telling that some women think screening is compulsory or something they can't reasonably refuse.
I don't believe a word coming from these programs or their protectors and supporters, over the years I soon learned it was spin, PR, manipulations of the evidence etc.
The program will change to 5 yearly hpv testing from 25 to 72 in Dec, (Australia) lots of women are worried, after all, we've been urged to have two yearly testing from teens until age 70 for decades.
Thanks to early screening and serious over-screening, we have huge excess biopsy and over-treatment rates. I think this was viewed as helpful by the program, it served to scare women into screening compliance and provided an often vocal group of "survivors"...of course, these women were almost all simply over-treated. False positives are a serious issue with excessive and early screening, this has been known for decades.
Of course, now the screening people are trying to convince women it's now safe to move to less screening thanks to "new" evidence and better testing options. You can't have it both ways, deliberately mislead for decades and then do a 360 and expect the screening herd to follow along quietly,
So many comments posted are damning, "most of my friends had cervical cancer before they were 25"...
No, you were misled, you should never have been tested in the first place.
So it's interesting to see the screening people trying to "explain" why the changes are now safe...
The evidence doesn't support hpv testing before 30 but because of our long history of non-evidence based testing and excess, the program could not start at 30, it would cause panic from all the "saved" and other women.
I hope the apparent contradictions prompts more women to do some reading, I think many will be angry they endured these unnecessary and avoidable procedures and have spent years believing they were a cancer survivor with all the fear and uncertainty that carries with it. So it's not just the excess testing, lack of consent and informed consent, over- treatment, women left with psych and health issues after over-treatment, it's also, the reduced quality of life caused by these programs.
The best healthcare decision I ever made was making an informed decision not to screen, otherwise, I fear my name would be part of the 77% of women here who have a colposcopy and biopsy, or one of the large number who have excess treatments, cone biopsies etc.
It saddens me to see the huge and avoidable damage caused by these programs, to screen for an always fairly rare cancer in the developed world. It can never be justified...
Comment by Carrie posted on
Revisiting this.
Last year I left a comment on here explaining why I have not seen a GP in 20 years (awaiting moderation, June 2016).
In short this situation came about because of a horrible practice nurse who ridiculed me because I was too scared (child abuse PTSD, which she knew about) to have a smear test.
Strange that my previous comment isn't showing?
Comment by maria posted on
Hello,
I must agree with the comments above that not many women are aware of the fact that screening is optional and this 2017, South East England. I only found out when I was trying to make a decision to screen or not to screen. To do that I did a huge research online on forums and other sources of information. It does not get mentioned anywhere that this is optional and obviously, any cancer screening. All the forums talk about the tests, results etc. Trying to suggest that you would not want to have it done on the forums, brings insults, disbelief etc. Bizarrely, when I contacted cancer charities they said they supported informed decisions but had no information in this respect and they claim to have had their information approved by the NHS (they bear the quality of information mark). One wonders why it is so. Their gist of website was to get tested as soon as possible. The closest one get to is the NHS leaflet quoting one sentence. However, when you do click on the link it brings up a super long document of 28 pages. What puzzles me the most is that this does not seem to be a topic that is publicly discussed. Why??? The only article on the latest NHS leaflets (it is your choice) is against giving women a choice and how life saving this test is. Why??? Why is there not more press if this is supposed to be optional? Stories of women who have opted out?
The worst thing in this respect for me personally is that you do not inform women in this country about the voluntarity of testing in the doctor's surgery if they are virgins. When these circumstances were applicable to me I would never be told anything, just that I was low risk. Why not more? What about the risks, difficulties of testing? What medical value would this have had? What about suggesting that I might want to consider this later? As I come from a different country it is a written rule (and from previous medical examinations I know) that virgins do not get tested or have internal exams. This just defies medical ethics. What are the medical ethics that you have got regarding the tests? Where are the boundaries??? Do your targets come first?
The most incredible thing is that Gps will discuss my sexuality and testing when they can see clearly on the screen 'never had sex'. I am finding it beyond belief that in a country that has had sexual abuse scandals and people need CRB checks and regular safeguarding training I get asked at the beginning of a consult about sex (why do I not like sex? Etc.) and am regularly sent letters asking me to come for testing. Again I am asking what the medical ethics of this programme are.
To cut it short, the information you quote in one of the replies is that women can opt out through their GP is not true. I have tried and was told I had to ask myself to be taken off the list. I did manage to do that in the end. I opted out not because of my experience with your programme but because I did my research I concluded that the information we are provided is incomplete, biased, half-true and not up to date. I would not want to participate in a programme that is so forceful and is being sold to me everywhere time I go to the doctor even though it is optional.
Comment by SSM posted on
I have had the same experience in Canada. I was added to a list to harass me (by post to my private home) about my personal decisions that I have to discuss with my GP every single time I visit them (and during pregnancy, you visit them a lot). It's to the point where you walk into the room and before your blood pressure is even taken you have been informed that you are due for a pap - naturally my BP is often a little elevated and needs to be measured 3 times to find out that it's quite normal - when I'm not being harassed. It's gotten to the point where I simply don't go to the GP because it feels as though they are more concerned about having my pap "up-to-date" than why I am visiting in the first place. And yes, in Canada you are also meant to feel that the pill is being withheld until you submit to the tests... In my 20s I felt I had no choice, but now that I am in my 30s, with the same faithful partner for 15 years, I've had it with being harassed. You are still not really given the choice to opt out unless you initiate the discussion, plead your case (educated though it may be) and then put your foot down. How can that be considered informed choice??? It's not - it's testing under duress...
No one ever seems to consider this harassment when they summarize the ethical issues involved in screening. "Informed choice" is on the list, but it is never accompanied by - "must not be obtained under duress". And we wonder why 30-40% of women aren't "up-to-date". Probably no one has ever asked them if they are simply exercising their right to make decisions about their own bodies, or asked if they are simply fed with the harassment and are now actively "fighting" the system. Amazingly, no one ever sends me mail about poor eating choices, smoking and lack of exercise - life style factors that are far more likely to affect the quality and span of my life.
FYI - I lived in the US for a number of years where the test is now recommended every 5 years with HPV screening, which seems far more logical. Still not offered in Canada b/c the test is too expensive - cheaper to continue the postal harassment campaign.
Comment by Marie Urbancikova posted on
I opted out of screening a year ago and yet my notes have not been completely updated with this information. Also not every GP respects my opt out letter. Last time I went to see a GP I was offered to opt back in. Only getting angry and upset to the extent that I shouted at the GP made her realise I would not reconsider. Coincidentally, I was asked when I was being seen about breathing difficulties. How can you explain this to me? We are made sign a disclaimer from an optional test and this is to no avail. How do you opt out of this test then? Or this is just a pack of lies we are being told? I am really sick and tired of your Screening Programme!!!
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Comment by Duncan posted on
I recently read there are 220,000 abnormal cervical screening tests, assuming they will all go through to the colposcopy &/OR treatment stages, but then only 854 deaths! The sums just do not add up!
Looking back at the history of cervical cancer there was never this amount destined to get the cancer and was always quite rare. There are growing numbers of women wising up to this fact and perhaps this is the reason screening figures are falling, honesty is not really forthcoming with this test that never had RCT's in the first place on implementation. Are the authorities not afraid of all the collateral damage caused to women? Is this fair to put women through so much for such little gain!
Women are searching now for themselves and not relying on the information provided by you. It is plain to see that an individuals risk is only 0.65% risk of cc. So much money spent here yet the NHS is struggling to provide basic treatments to real people with real illness. Hospitals can't cope, GP's can't cope, the system just can't cope. I and many others are done with screening, screening for this, screening for that.