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Smear tests

203 replies

miriam25 · 30/12/2013 17:54

Hi all,
I seem to have developed a phobia of smear tests - today 10mg of Valium wouldn't even help! I've read about HPV blood tests - has anyone had one or does anyone have any idea where you can get them done?
I've also thought of having a course of hypnotherapy - has this worked for anyone one??
Many thanks

OP posts:
rabbitstew · 01/01/2014 17:25

Hmm. There is, of course, the risk that a private GP will tailor his care to your whims, rather than needs (see Michael Jackson...), and of course to your personal finances (see Michael Jackson...). I think the NHS has many failings, top of the list being governmental interference via ludicrous targets and statistics, and attempts to stretch money too far, thin and wide and ignore the growing cracks. However, hundreds of years of past experience indicate that private medicine is no great shakes for the majority of people. Whatever system you have, you still have outrageously awful doctors in the system, OK ones and brilliant ones, and you still have limited overall control over which sort you end up being treated by.

fairbalance · 01/01/2014 18:25

Pennysillin: I have moved twice in the last 10 years each time I have registered then waited for the phone calls to start, bundled up the letters and sent them to the PCT with gone away written on them. In my experience this is a regular occurrence. I do keep trying but unfortunately get no further in having an NHS GP!

Pennysillin; Sugarcane said that if a woman does not attend for a smear its flagged up on the computer and discussed at her next appointment? Do you do this? Reading Honey and UnduePressure's comments that was issue they encountered every time they attended their GP.

It is very worrying that even if I received no phone calls my decision may be challenged in a consultation when I am ill and vulnerable. This definitely puts me off even attempting to register with an NHS GP.

Pennysillin: speaking to my GP cousin about this he directs you to The Journal of General Practice article he says this "hounding" is rifle in some GP Practices www.ingentaconnect.com/content/rcgp/bjgp/2013/00000063/00000606/art00022 Some great Medical Professor has written about this see the link.

This seems to be a common occurrence as various posters on this thread including Sugarcane have experienced it too.

Rabbitstew: there is good and bad in everything. I want as far as possible to receive balanced information not government/political messages when I attend a doctor. As my coil experience highlights and this great Medical Professor Paper shows political whims and unbalanced information would seem to be endemic in the NHS. I would rather take my chances privately. It is up to me and my doctors to decide what my needs are not the NHS and politicians.

You can only make decisions that are best for you as an individual. One size does not fit all.

PennySillin · 01/01/2014 18:34

This is not my experience. No I don't flag it up with them at their next appointment, (tbh the main reason is I just don't have time,) if I do mention I make it very clear they have a choice and I'm not bullying them into making an appointment, I am able to remove them from the recall if this is what they wish.

miriam25 · 01/01/2014 18:46

Happy New Year! Sorry I'm new to mumsnet and didn't register that there were so many replies. I've just scanned all the pages and thank you for your advice.
I don't know how I've developed this phobia, but I have and it's real. I accept that many women will have little patience for this, but I had to have 6 sessions with a therapist before my last one 8 years ago - embarrassing to admit. I don't have children but thought this would be a good forum to ask for female advice.
I do want a smear - why not? I'm happy to have any health checks. Although I totally respect anyone who doesn't want a smear or breast check. I do get slightly annoyed with all the smear reminders, but only because it reminds me of what I'm putting off.
Thank you to the lady who said that hypnotherapy worked for her - I'm going to go to my GP and chat about alternatives. I was really hoping someone would tell me it's possible to have an HPV blood test - that would have been amazing for me, but I don't get the impression that these are viable yet.

OP posts:
fairbalance · 01/01/2014 18:54

Thanks Pennysillin good hear.

However for a Medical Professor to write an paper about these issues relating to the GP Contract and targets clearly it is an serious issue. This is backed up by posters who are affected here on this forum.

Perhaps when you register with a GP patients should be able to opt out of these government GP Contract targets and smear tests etc.

Some research needs to be done to assess how many patients are not registering with a GP or are avoiding attending due to these types of issues.

For those of us who strongly object we currently have no choice but to go privately as patients cannot fully opt out of the GP Contract targets etc. It is worrying that as in the Professor Medical Paper patients are being left without medical care by the NHS if they object.

rabbitstew · 01/01/2014 19:45

Smear tests would be a lot less traumatic if practice nurses were better trained. In all the surgeries I've been registered at over the years, none of the practice nurses who attempted to torture me during my smear tests had been trained how to do internal pelvic examinations and they therefore stabbed about ineptly and bad temperedly for up to 30 minutes without success, because they had no clue in which direction they should be aiming... I've had no problems since I point blank refused ever to have a smear test done again by a practice nurse and the person doing my smears has worked out where my cervix is BEFORE inserting the speculum.

olaybiscuitbarrel · 01/01/2014 20:24

I'm another one whose life has been saved by smear testing. I had absolutely no symptoms at all but had cervical cancer requiring a hysterectomy.
I don't want to trivialise the anxiety felt by some over the screening and possible over treatment but there is nothing that compares to the terror of hearing that you have cancer. Fortunately for me because of the NHS screening programme it was caught at an early stage and I'm still here.

SpikeyTree · 01/01/2014 22:33

I have also attempted to opt out of smears, but am asked each and every time I go to my GP. One GP even tried to walk me to the reception desk to make an appointment and I literally had to run away. I don't really go to the doctor's now so have to deal with severe depression and PTSD without meds.

fairbalance · 01/01/2014 22:51

Oh so sorry Spikey that is what a lot of us are finding on this forum. Its so hard and incredibly stressful for those of us who object. It definitely a serious this GP Contract issue if a Medical Professor and a leading GP are taking up these issues relating to both smears, screening and the wider monitoring of patients under the GP Contract. However its very scary that patient are left with medical care and on ongoing prescriptions because of these issues and having no opt out.

Olay so sorry about your diagnosis. My take on this is we all eventually die and I far more scared of ending up like my grandmother who died a couple of years ago. She was 105, bed ridden, arthritis in every single joint and had dementia. She was totally dependant on nursing home staff and had no quality of life whatsoever. That scares me witless more than cancer.

We all must be allowed to make our own informed decisions. The NHS cannot be allowed to be effectively making decisions for patients through making it impossible to opt out of this screening and general health monitoring that is part and parcel of this GP Contract. What is going on is quite scandalous.

Spikey have considered making a complaint to the GMC over this? The more people that complain the better then the NHS may take notice.

Musicaltheatremum · 01/01/2014 23:41

Honeybee66 those dreaded three letters QOF I was a QOF assessor as a GP I hate it. I make sure as far as possible people are informed and if they say no I code them as having dissented from treatment/investigation but do warn them I have to ask every year (5 for smears)
Screening is a minefield. It is interesting reading all this about smears and how it would not be approved as a screening test these days and on the other hand people demand cholesterol checks out. The blue. And PSA checks neither of which have been proved to help diagnosis.

I spend a lot of time with my staff writing to or phoning patients to come for screening and then excluding them so my income can stay the same or fall less than it has year on year for the last few years. All time I could be spending treating ill people. Grr

fairbalance · 02/01/2014 00:23

MusicaltheatreMum: I know about this second from my cousin who is GP and my sister who is a nurse. My cousin dreads QOF visits he says they are so stressful.

Have you read the paper my cousin sent me by Prof Trisha Greenhalgh in the British Journal of General Practice about a lady who objects to being contacted by her GP from GP Contract issue diabetes, weight, BP etc as well as screening.

www.ingentaconnect.com/content/rcgp/bjgp/2013/00000063/00000606/art00022

It seems she has been left with access to a GP due to these objections.

I work in the financial/legal sector and from my knowledge professional knowledge it looks like Honeybee66 is spot on. We have to ask our clients if they want to receive promotional financial/legal literature due the Data Protection Act as clients have the legal right to opt out. Why is the NHS ignoring the law and acting potentially unlawfully in hounding patients and denying them there legal right to opt out? I agree with Honeybee66 it is one for the Information Commissioner. It is crying out for a formal complaint.

I was closely reading Honeybee66 and UnduePressure posts. Honeybee66 is clinically qualified and seem to know her way around the NHS. I never knew about care.data I googled it and I found this web site here by a GP care-data.info Why have n't patients been informed about this sooner? All our NHS medical records and this data that is gathered by GP's and the NHS is being sold off by Cameron.

Do you know if as a non-registered patient I need to opt out?

I find this whole situation so frightening informed consent is being walked over, patients are being given biased information telling one side of the story, we are being hounded to attend so our data/records can be harvested, our legal right to opt out under the DPA from being contacted is being denied, our medical records are being sold off and we have virtually no time to opt out.

Meglet · 02/01/2014 08:19

Actually, what I will say, is that after experiencing smears at the GP's and colposcopies carried out in a gynea ward, is that the gynea team are better at carrying out the procedure. In the gynea ward I had 2 nurses, one to carry out the procedure and one to support her and chat to me. I found the gynea 'chair' is also more comfortable than a flat couch in a GP surgery because it tips your pelvis into the right position. While it's a more medical set up I found my colposcopies more bearable than a smear.

Meglet · 02/01/2014 08:30

The gynea nurses also seemed to be more understanding of how vulnerable a gynea exam felt to the patient.

givemeaclue · 02/01/2014 08:38

Op I sympathise I feel the same. I had a reminder in May and am finally having the smear...tomorrow. Did enquire re gas and air but not available at my gp surgery.

Is it true that the test was invented by a man...who practised by doing one on his wife every day?

Meglet · 02/01/2014 09:03

The gynea nurses also seemed to be more understanding of how vulnerable a gynea exam felt to the patient.

summertimeandthelivingiseasy · 02/01/2014 12:25

Thanks for the info on Care Data - I had read it on my GP's website, but had assumed it was the same thing as the Summary Care Record stuff. They had to send you a letter for that!

What annoys me about the one size fits all recall system is that it is difficult for me to opt out, even though I have had regular smears from the age of 21 and am at zilch risk of getting HPV (although my practice nurse claimed there were other ways of getting it, but she could not tell me any of them.......). However, it seems it is now very difficult to be screened if you are under 26 even though more people are now sexually active at a much younger age than in my day. I would gladly give up my place for a worried youngster; women do die of it at that age.

I had a friend who died of cervical cancer. She only had 2y2m between her tests. It gave her another 5 years (combined with her husband's private health care plan, which meant she had a hysterectomy and lymph glands removed within 4 weeks of the result).

Really, I have mixed feelings about all this screening business. I had an unpleasant mamogram 2 years ago with a very unkind techician and have no wish to repeat the experience, especially as I have found out more about the follow up procedures. I have also been invited for a 'health screen' which seems to be more use for data gathering than my health, so have decided not to get on that particular bandwagon.

We all need better awareness of our own health and gps who can understand us, but that is probably a utopian dream.

sarine1 · 02/01/2014 12:35

For the record, I am in support of the smear testing programme.
However, I took great exception to receiving a letter from NHS England stating that if I did not respond to their letter asking me to explain whether I was going to have a smear test and confirm my details etc NHS England may remove my name from my GP's register!!
I phoned the sender of the letter who clarified that this was part of their audit processes to check that GPs were not falsifying their records. The letter was sent to women over 60 who had not responded to their letters. (In fact I had already contacted my surgery and had my smear test before receiving the letter)
There are all sorts of equality issues in threatening to remove a particular group based on their age / gender from GP lists - I will try to find my letter as that explains it more clearly.

sarine1 · 02/01/2014 12:40

Copy of my letter below - sorry it's so long - I was furious at being threatened in this way.

Dear
I would appreciate it if you could clarify NHS England's position regarding women over 60 who have not attended NHS screening tests and the threat to remove us from the lists of our GPs if we do not respond to your letters.
This seems like a sledgehammer to crack a nut and I take great exception to being threatened with removal from my GP's list because I have not responded to your letters. My relationship is with my GP and not you or your colleagues in NHS England. The surgery knows and has confirmed my details.
It appears to me that the exercise that you are undertaking is a financial audit trail to ensure that GPs are not falsely claiming funds for non existent patients. To then threaten actual patients with losing their GP because of their failure to comply with your audit processes is quite unbelievable.
I would also suggest that in specifically targeting a specific group in the community and threatening to remove them (ie females over 60) NHS England may well be breaching the terms of the Equality Act 2010 in that women over 60 who fail to respond to your bureaucratic processes will be being removed from their GP's lists unfairly. Presumably other specific groups will not be being removed in such a way.
I would finally point out that there will be a number of vulnerable people in this group who will be frightened by your letter for various reasons. Bureaucrats should NOT use threats disproportionately. If as you stated the next stage in the process is to check with the GP to confirm then perhaps your letter should state: "If after further checks, it appears that you are not using your GP and you have not responded to these letters, then it is possible that you will be removed from the GPs list" etc.
People working in 'back offices' should not interfere with the critical relationship between a GP and their patients. Financial audit processes are not a good reason to threaten me with with being removed from my GP's list. I happen to have a fantastic GP and appreciate the relationship that I have with her and do not take kindly to being threatened in this way.

I understand that letters that NHS England sends are important to them - to me they are part of a torrent of business and other mail which gets prioritised and dealt with according to my priorities - regrettably your financial auditing processes are not one of my priorities.
I trust that this is an over zealous and probably thoughtless comment in a letter and therefore would be interested to know the following.

How many of these letters have NHS England sent out in the last year?

How many from this group have actually been removed from their GP lists by NHS England as a result of failing to respond to these letters?

What further checks do NHS England make to ensure that people from this group live at their registered address?

Was an Equality Impact assessment completed in relation to this 'policy' of removing women over 60 from their GPs registers if they have not responded to your letters?

Will NHS England consider reviewing the content of letters sent to patients to ensure that they do not include inappropriate threats?

And breathe......

summertimeandthelivingiseasy · 02/01/2014 13:17

That is a good letter. Hope you get a response. Do you need to copy it elsewhere (GP, MP?) to ensure it is noticed?

If any GPs are falsifying records, it is not the patient's fault. It has nothing to do with them. It is between the bureaucrats and the GPs. Why should the patients be involved and penalised? Madness.

UnduePressure · 02/01/2014 13:43

For me there is a couple of points here that I need to make.

Part of my decision not to go with screening is for my health. Given the stress of it, I have considered the impact on my mental health. I do feel that this is completely neglected by the attitude of government and doctors.

Given the way in which they are so aggressively pursuing this with women, I also want to point out the bleeding obvious. Which women out there are the ones most likely to avoid going for smear screening? One of the most likely answers is women who have perhaps been abused or raped in the past or have some other history of anxiety. This also, sadly means they are women who are perhaps more likely to be at risk of developing cervical cancer due to their sexual history and they are potentially more likely to be vulnerable / have a lack of trust in authority too.

By making the system aggressive and so paternalistic, it has the potential to make women, who are most vulnerable disengage with doctors. This then becomes, not just about whether they might die from cervical cancer but also about a batch of other health issues which may be life threatening. If it is alienating enough women from a doctor, then are the lives saved made by screening being lost somewhere else? Its a crucial question that no one really wants to answer.

Not understanding how important building up a relationship of trust between a patient and a doctor is the real downfall of making the system so aggressive and impersonal.

I'm afraid, to a lot of women, its not just as simple as just 'throwing a letter in the bin'. That letter has the potential to be 'triggering' in someway. Especially if it is badly worded, or gives the lack of impression of choice.

In the end the last letter I had from my previous GP said that since I had not responded to their last letters about attending a smear test, that if I did not respond this time they would remove me from their books. I felt like an ultimatum; have a smear or deregister. Since I get so upset at these letters and had previously felt bullied by the GP, there was not a cat in hell's that I was going to respond. Thus leaving me unregistered.

Reading through this thread, I find actually incredibly insensitive from a lot of people heaping on the pressure saying it saves lives. The way in which it is being done, is probably actually having the opposite effect in encouraging a number of women. Even if it saved your life; it STILL does not give you the right to ignore the complexity of the issue and be so aggressive in trying to bully others out of trying to raise concerns which effect them.

In addition to this, women who 'have had their lives saved' and use this as an emotive way to persuade others are also missing an unpleasant, but important truth. Not to disrespect people on this thread, and no one is going to thank me for saying this, I still have to make the point. A lot of women who have come back and had treatment resulting from an abnormal result, have not had life saving treatment, they have had unnecessary treatment which they mistakenly think is lifesaving. The reason they have the treatment is because in a great many cases, there is simply no way to tell the difference between a result which is life-threatening and one which isn't, so everyone gets treatment. The effect of this is to disproportionately represent the benefits of screening by anecdote and popular pressure. So to the people saying there are X amount of people on this thread who have had their lives saved, that might not actually be the reality, and we need to be extremely cautious about it.

I find the combination of that emotive response, peer pressure and the lack of sensitivity and respect for women most alarming. It means that we are stuck in a situation where there is no movement forward in trying to accept that there are flaws to the system and trying to find new ways to improve women's health (which is not exclusively about smear screening, but the emphasis makes it). Unfortunately, the current obsession is focussing on screening and making sure that targets are achieved which ends up neglecting other aspects of healthcare.

I also find the attitude alarming, because it does make me worry about the possibility of one day in the future that smears are made compulsory. Poland proposed doing this for working women a couple of years ago in response to EU drives to increase screening; with the implication being that if you refused one, then you pretty much couldn't get a job. I fear that, unless we challenge the way that the NHS is being aggressive now, that we are already very much on the slippery slope to this, and that consent will be something that is very much irrelevant.

My husband has previously mentioned, making complaints to those sending the letters, but I find the prospect both daunting and very scary in itself. I have no idea who I would actually be writing to, and whether they were actually part of the NHS either. I personally am not sure if I could handle the response; I fear it would be more of the same shit trying to get me to comply rather than actually listening to how I feel. It just feels like a faceless inhumane wall of policy. Not something that is genuinely concerned about my wellbeing, which is not just about my chances of whether I may or may not develop cervical cancer.

sarine1 · 02/01/2014 13:58

Thanks Summertime. I did consider copying it to my MP etc but don't really want to start a big campaign. It's just a thoughtless throw away threat written by someone who should know better. I spoke the the signee on the letter (assumed that he had written it) and hopefully, having had some direct feedback, he'll think twice before using such a threat again? (hopefully.....)

RedToothBrush · 02/01/2014 14:39

SpikeyTree I found a good GP in the end, who is respecting how I feel, though they can't stop the centralised letters. After writing to them and explaining the situation, they said that they were willing to take me on their books and would put on my records that I was not to be asked about smears, unless it was relevant or I requested it. They said they regularly had similar requests (which makes me wonder if my old GP surgery was particularly virulent in its approach) which helped to make me feel better about it in the end. To date they have been true to their word, despite seeing a number of different doctors in the last two years.

It took me a long time to get the courage to do so, and it was my husband who did it on my behalf, so I know how hard it is. It wasn't easy finding another surgery though, as this particular GP, though local, stated that it wasn't currently taking on new patients and I was lucky that they accepted my reason for leaving my other surgery and agreed to help.

My point is, that there are doctors out there that are supportive; like my GP and like Margaret McCartney. I also feel much happier being with a GP who doesn't look at me as damaging to their figures and may effect their pay cheque and instead teats me as a whole person. It says something about their integrity and ethics. I'm a long way off, but it is helping to restore my trust in doctors.

SpikeyTree · 02/01/2014 22:55

Screening should be available for those who wish to partake and it should be entirely possible to opt out of said screening without forfeiting your right to other medical care.

I listen to Margaret McCartney on Inside Health on Radio 4. She talks a lot of sense.

SwanKar · 02/05/2014 18:52

Very timely thread! I always knew better then to have these tests. What bothers me the most, apart from the damage this program causes through over-treatment, and the absurd amount of money it costs (128m pounds? I can look it up) is how it brings the fascist out of ordinary women. I can not believe one of the posters here said this could only happen in the "entitled" Uk- What, that women have a say who penetrates their vagina, and who has access to their medical data? Is that "entitlement"?? I am abhorred by the lack of sensitivity, and the lack of empathy through which ordinary citizens hound other ordinary citizens into this program, doing the work laid out by the nudge units relying on applied behavioural psychology. This test has been introduced without clinical trials, the cancer has always been rare in the developed world (www.theguardian.com/society/2003/may/22/genderissues.publichealth "If somebody suggested in 2003 we [should] introduce cervical cytology, no randomised trial would ever show it was worthwhile," admits Dr Anne Szarewski, clinical consultant for Cancer Research UK") - this test really is not good at all! What says it all about the mindframe of the "responsible women" how they would never question authority, and if they are ready to accept that smears are vital, they would never lobby for a less humiliating way of carrying the test out, instead they think they have the right to instruct their fellow women from the moral high ground they think a pathologist looking at their cells under a microscope bestows them. This test has been done the same way since the 1930s, but if someone says THEY DO NOT WANT ANY STRANGER NEAR THEIR VAGINA they are told to suck it up and just stop whining! Can you imagine someone being to stop whining because they demand a better technology, like better car brakes, better gas heaters, whatever? Highest time for women to be consumers, and not victims. ..

SwanKar · 02/05/2014 18:57

www.thelancet.com/journals/lancet/article/PIIS0140-6736(05)78229-5/fulltext

"Screening has distorted public belief. In our desire for good population coverage we have said that screening is simple, effective, and inexpensive. In truth, it is complex, of limited effectiveness, and very expensive. The simple message that “cervical cancer is preventable” means to the layperson that every death is someone's fault. How can families ever come to terms with a young woman's death if at the same time they believe it could have been prevented? We do not know what proportion of cervical-cancer deaths are preventable by screening—it may be 50%. For breast cancer it may be 25% in those screened, for bowel cancer 10%. The public have no idea that most deaths among women who have been screened are unaffected by screening programmes that are promoted as “simple and effective”. Another issue is the size of the problem that screening is trying to solve. Many newspapers report that cervical cancer is the most common cause of death in women under 35 years.4 Not true. It is widely quoted that 1 in 4000 women each year develop cervical cancer. Not true. But now that screening has become something of a feminist icon, it is very hard to explain that cervical cancer was a rare and diminishing cause of death before we even began screening "