Who do I complain to about being refused a smear? I'm going round in circles, help

[CheeeseOnToast]

Rather long backstory, full story here, brief resume below:

Have a history of abnormal/borderline smear tests, but last one came through fine so been requested a recall in 3 years time. That's May 2011. For the last year I've been getting breakthrough bleeding on my combined pill (Microgynon, was then changed to Celeste 6 months ago, problem persists). I've also been getting worse and worse cramps and the BTB is lasting longer (last month I had almost three weeks of bleeding out of the month, 3 days for my 'period' the rest a persistent spotting).

I saw my local family planning centre three months in to taking Celeste, and told them I was still having the breakthrough bleeding and I was concerned about my smears and asked if I could have an early one. They said no, and that I should rule out any other potential causes before having a smear, and they told me to come back in four months for pill renewal if all was negative. So i had a full STI screening, including HPV, HIV, and everything else - all negative. I didn't want to hang around for four months so I bypassed the FPC and went to my GP, and he said of course I could have a smear test, and recommended I book it in with the nurse at reception. That appointment was today - and she refused to do me a smear test.

She instead said she'd change my pill to a progestogen only pill (Cerazette) which she said would control the bleeding. I told her I wasn't happy about not being given a smear test, and she said that unless it was decided by the local health authority, she 'wasn't allowed' to give me one.

So now I'm home I've done some research online into this pill and it states that this pill should not be given to anyone with "Abnormal vaginal bleeding of unknown cause". Is this not what I've got?

I'm really cross. I am 28, which she seems to think puts me in the 'don't bother with' category, despite the fact that my good friend - younger than me - recently had to have surgery for abnormal cells. And another friend had cervical cancer at 25.

So what do I do now? I really don't want to just wait until next May, it feels too long away. Can I contact my local health authority directly (somehow bypass the GP?) and get them to send me an 'invite'?

I'm getting quite stressed about all this and it's all rather ridiculous, I don't understand why they can't just do it, then if it's ok I just wait three years from now, it's not like I'm saying I want one now and then another again in May.

What do i do? On the other thread I started (link earlier in post) someone suggested getting a smear done privately, I will do this if necessary but just think I should be able to get one on the NHS. And why am I being prescribed a pill that specifically states should not be given to someone with unexplained bleeding? how will I know if there's a problem or not if I start taking a pill which in its own literature states that it causes changes to bleeding?

Sorry this is so long. Please someone help, I'm so confused.

I would go back to your GP and ask them to perform it. The nurse shouldn't be prescribing your contraceptive (unless things have changed since I left the UK0.
I agree, you should be able to get one on the NHS not have to go privately. It's not like you want botox for wrinkles.
Good luck.

Thanks kreecher. But the nurse I saw was at the GP practice, and I told her the GP said I should have one, and she still wouldn't do it because I hadn't been invited for one by the people who coordinate smears. I suppose I could ring the GP practice and ask the people on the desk what they think I should do?

After some further googling last night I found the number for the Patient Advice and Liaison Services (PALS) which I thought I could maybe ring, and ask their advice. Not sure if this is a good idea or not though.

The problem here I think is that you are asking to be a special case in a nationwide screening programme that does not have an option for special cases. You have to take yourself outside of the screening programme. Ask for a referral for unexplained vaginal bleeding to a local hospital gynae unit. I don't know where you are, sorry, but if you are in South London Kings College Hospital does a one stop sort you out appointment that beats everything else hands down. I had two consultants in the room when I was examined as they said it saved time having to refer to each other. Other places must have similar. Hope this helps. The national screening programme is for women without symptoms. You have symptoms. You need to make it clear to your GP that you want to be treated outside the programme. Get a referral.

Thanks Janinlondon, that's great advice. That's exactly it, thank you. I am in east London. I'll make another appointment with the GP and ask for a referral. Thanks

JaninLondon's advice is excellent.

I just went for a smear at a family planning clinic (Margaret Pyke Centre, on Charlotte St, since you are in London) - they hadn't invited me (my GP had) but they didn't question me at all about showing up & demanding a smear.

Im 8 and last year I had cerazette, depo and the lot and had annoying spotting, after about 5 lots of swabs to see if I had clap (which I didnt!!) I had a smear done eventually and they found abnormal cells I had cin 2 and needed treatment.
I bled worse than ever on that damn pill. the only thing that stopped it was microgynon. Id see your GP again or see about changing your doctors cos its your health at risk not some mardy nurse!!

Hi iskra, interesting that your fpc gave you a smear. It seems to be so inconsistent, it's so frustrating. I see that's Camden PCT, I'm in Hackney.

And thanks von, it's stories like yours that make me want to push this. if you don't mind me asking, how long had it been since your last smear, before you got them to give you another? had you previously had ok smears? hope everything's sorted now.

Id never had one before! Id put off going
After the treatment I had check ups and my smears and colcoscopy were ok in may apparently. Ive reverted back to yearly smears as Ive got one of the dangerous hpv strains
Ive been getting some pains but Ive opted for the copper coil which I think is to blame.
I think its that depo that caused all this, on my colcoscopy after my cervix was bright red and they said its normal cos the injection stops cervix cells maturing.
If you read about cervical cancer they say youre at risk if you have sex at a young age , I lost the big V at 17 I wouldnt call it too young.
Therefore I opted for no more hormones!

I know this may be stating the obvious, but you need to talk to your GP again and ask him/her to overule the nurse. I am sure that the GP has final say as they are in charge of their budgets.

Was your GP in the building when the nurse said NO? If so, you should have told her to find im/her and ask.

IMO nurses can prescribe repeat pills, bu t not new ones.

Go back to GP and complain and maybe also write to the practice manager to say that communication between the GP and nurses is not what it should be.

How utterly frustrating. I used to go to the Margaret Pyke clinic, they are wonderful and it doesn't (or didn't use to) matter where you live, you can still use them. I worked near there (off TCR) but lived in Sheps Bush. Used to see Prof John Guillbaud who was amazing.

I think though that the pp was right you shouldn't be part of the national screening programme but should have a proper referal to a gyne.

See if you can get a referal to Prog G he is REALLY good, he is at UCL, not sure if he is at MPC any more as I last saw him just over 9 yrs ago. I had dreadful endo and he sorted it out in weeks. I was bleeding so bad, was anaemic, couldn't work some days as was bleeding so heavily.

Good luck.

Use some pester power with your GP. Or as someone else has suggested contact PALS.

My sister works for the NHS and she loves it when patients contact PALS as they go straight to the top bods, kick ass and make sure things get done.

Not sure how much a private smear costs, I had a private colposcopy once when they had a massive back log, might have been around £300 (mum paid) but the same consultant performed it.

Well the way I understand it is that screening is for people who have no other symptoms of the disease being screened for. You need further investigation into your bleeding and that is what you should be pushing for. A smear should not be the first stage in that investigation, which is presumably why the problems are arising.

A private smear costs around £50.

I really don't see why the GP can't sanction this.

Whenever I have gone along with spotting etc, the first thing they have asked is am I up to date with smears.

Although the 3-year interval is for people with no symptoms, I cannot truly believe that you would be refused one- by a nurse- if you have symptoms. GPs have control over their budgets- if they think you need another one, surely they will cough up the cost?

I have never, ever heard of anyone being refused a smear when they have symptoms just because they are not due for the test according to NHS guidelines.

A smear is not an investigation of symptoms!

Stealth- I don't see how you can say that. Ordinarily, a smear is a preventative test, but it is still carried out when people hav e other symtpoms, such as bleeding between periods etc. as it can show up cancer of the womb etc as well as cervix.

Any one going to drs with unexplained bleeding would be offered an examination, a smear if one not done in say the last year ( in the US and France i think they do them annually) and ultrasound scan.

No a smear test is not a diagnostic test. The NHS CSP guidelines are quite clear, purplepeony that the scenarios you describe are not appropriate for someone with symptoms.
Yes 'smear' test can detect endometrial cancer but that's basically an off-chance, some cells from the cancer might be present in the sample and might be picked up by the screener but its not what the test was designed for.
Someone who is having vaginal bleeding is not "well" per se. Appropriate investgations for endometrial cancer includes a transvaginal ultrasound - taking a cervical smear test on the off chance that (a) the woman does have endometrial cancer (which is actually very unlikely) (b) it will be detected is delaying the investigation and using resources unnecessarily.
The US and France screen annually because private health insurance pays for it. They do not have properly organised, quality controlled and standardised screening programmes. If you compare the outcomes of the programme they are quite different.
Guidelines for the management of young women with bleeding

Essentially, HCPs who are peripherally involved in screening are less up to date with the current practice and should not be offering out of programme cervical testing.
Other tests and investigations are more appropriate.
The cervical screening test also is not perfect - there are false negatives. My concern with someone having a cervical smear test is that could be the only "investigation/test" that woman has when they have actually got something significantly wrong with that needs further investgation. If the test comes back negative - what incentive has the requesting HCP got to do more tests? Does the woman/patient think, oh, ok, well everything must be ok, my smear test was normal.
I know from contacting HCPs who have sent us samples on symptomatic women that they're often waiting for the smear test result before doing anything else.
Why? Even if its negative, the patient still has bleeding, pain etc. So what happens next?

OP - go back to your GP. Ask to be referred to gynaecology. Ask them why you've been prescribed medication which appears to be contraindicated. They are correct in not doing an earlier follow up cervical smear test. It may be that you've actually got an wide ectropian which bleeds very readily - this is why a gynae or colposcopy appt would make sense. They don't need to do another smear to sort this out - it just delays it.

Bel I actually do know all of that- I have spent the past 2 years being treated by a gyane in Harley Street for ovarian cysts and possible endometrial cancer.

Just to play devil's advocate- had Jade Goody presented with bleeding- which she did and was treated and told to keep up her smears- which she didn't- then she might be alive today.

I don't know why you will not acknowledge that cervical cancer is one possible cause of bleeding.

One poster on the menopausee forum is currently being investigated for bleeding and amongst other tests she has had a cervical smear- you can follow her posts.

Of course, a negative smear does not mean end of story- no more tests needed- but it is one test that must be done to exclude c cancer.

I know you are involved in screening, from your previous posts, but what you say is not borne out in practise by many drs, including some gynaes.

Actually Jade Goody did go for screening, did go for treatment and was supposed to go back for more treatment and didn't go back for the treatment.

Yes of course I acknowledge that cervical cancer is a possible cause of bleeding but if you are bleeding because you have cervical cancer then a smear test is not the right test, it just delays the investigations.
It is possible to have a negative cervical smear test in the presence of cervical cancer - and then what happens to the patient? Even with the best trained staff, the test is not perfect and if people continue to behave as if it is then women will not get the correct investigation. We have thread after thread on here where women have bleeding, and the first thing is "have smear done", even, as earlier on the thread in the case of someone who's had one recently.

I know of cases where the HCPs were not going to do any further investigation other than a smear test, until I rang them up and asked them what investigations they were planning on doing!

There seems to be a lack of knowledge and understanding of the limitations of cervical screening. If someone has symptoms which could be associated with cancer then by definition a screening test is not suitable.
There almost seems to be an idea that if a woman presents with some sort of ailment below the waist then she should have a smear test.
The poster you're talking about on the other thread (if she was up to date with screening) then should not have been given a cervical smear test.
The people I work with are trying to educate primary care about appropriate testing, and gynaecologists who specialise in other areas, also are not as up on the NHS CSP current guidance.

I am not going to comment on the practice of private gynaecologists because that's another matter entirely.

PS I should point out that I have no special "inside" knowledge about JD, that's from an interview with her in a magazine in which she stated that she had found her initial treatment difficult and painful and hadn't gone back (for awhile) when she was asked to.

Just in case of use to anyone reading, Margaret Pyke Centre accept patients from anywhere - I live in south London & still go there (I did use to live nearer).

Bel- out of interest what is your role in all of this? I understood from previous posts of yours that you were a scientist working in labs? Are you a dr?

I don't think anyone disagrees with your point that a smear is not the be all and end all of any investigations.

However, if a woman is not up to date with smears, or is due for one, ( same thing) and has bleeding, then it is one of a range of investigations that should be carried out.

You may have missed the point that the OP here had had abnormal smears before.

Also, for what it's worth, I feel I should point out that drs who work privately ( as well as in the NHS as mine does) do what is necessary- they are not bound by finacnial constraints of the NHS. But neither do they waste patients money/insurance cover by doing tests that are not required- that would be unethical.

I am a scientist and TBH don't really want to go into any more detail about me or my job as then it would be name change time. I work with/liaise with, advise primary care about the use of screening. I also work with the colposcopists and am involved with patient care and management.

Again, a cervical screening test is just that - for the 'well' population, not for some who has symptoms. If there is concern about the cervix then a colposcopy is more appropriate than cervical screening test. The people working in the programme are trying to educate those involved to use the test appropriately.
Purplepeony, you may understand that someone needs a range of investigations but other people don't and also have a much more limited understanding. We're trying to get away from the almost reflex use of the test.

Having had an abnormal test, then bleeding, is not an indication to have an earlier repeat test. What does it add? If its negative, there is still bleeding. If it's abnormal, there is a strong probability its not causing the bleeding (have you read the management of bleeding doc?), so you are no further forward other than having done an unnecessary test and delayed other investigations.

Anyway, we have entered a circular discussion and I don't want to get into any more detailed because it probably won't be helpful to the OP. We clearly have entirely different ideas about what screening is, so I am not going to continue this discussion with you.

Bel your posts are unnecessarily agggressive; don't know why you need to take this slightly arrogant stance just because you are medical. I don't think we have different opinions at all.

You are at the far end of the spectrum in your work, in that you are trying to educate the drs what is right- so how can you expect the general public to know what is required? They take their lead from GPS.

IME many women have smears as a range of tests if they are due one ( and that is more than every 3 years in some drs' opinions) and they are then offered a range of other tests.

Obviously you know best, but I would have thought that in someone who has had previous abnormal smears, first stop must be a repeat smear, as it is cheaper than doing anything else. You jump to the assumption that it will /could be negative- but who says it would be?

As part of the investigations in my abnormal bleeding, I have had a smear- simply as I was due for one, TV ultrasound, endometrial biopsy and a hysteroscopy.

Having lost both breasts at 26 I am inclined to be cautious!!

The medical stance is of no use when you are the person with the worrying symptoms and nobody will listen to you. In my case i was told i would have a long wait to see a specialist as i "was so young"
I did pay privately and had extremely aggressive breast cancer. I also had to take th lead with my treatment as they too treated me like everyone else and breast cancer in pre menipausal women is a completely different issue and needs separate managment.

I ma 43 now and in good health so would advise anyone who has that instinct to push a little. Maybe op doesnt need a further smear(i know nothing) but she still needs further investigation even if only to reassure.

If I had tested negative for high risk HPV, I wouldn't be putting a repeat smear test high on my list of priorities for discovering the cause of my bleeding, as HPV tests are more accurate and sensitive than smear tests, and without high risk HPV, the chances of the bleeding being caused by cervical cancer are really very low indeed for a young woman. I would be demanding something more accurate and specific - eg an appointment with a gynaecologist... Maybe it's because HPV tests are now available that the sexual health clinic CheeseonToast went to didn't do a smear test for her to help set her mind at rest that the bleeding was most likely not caused by cervical cancer. Although they could at least have visualised the cervix for her, to see whether there was, eg, an ectropion on her cervix.

I would therefore be inclined to agree with Bela, that pushing for a smear test would just be delaying getting appropriate attention for unexplained bleeding.