This is not informed choice.

 

GPs are now paid to chase up people who have not returned their bowel cancer screening pack.

 

BS2

This is the letter that we are being sent from the screeners when a patient doesn’t sign up. There is no room for the possibility that some people might weigh up the pros and the cons and decide: no thanks.

We are writing to patients to say that if they want to talk to us about it, we are very happy to talk through the pros, the cons – the uncertainties and the statistics. I will be doing my best to be informative, not judgemental. I will not be encouraging people to attend, but offering a discussion of the facts as we currently know them. I will be using Cochrane’s small print.

“. For example, in England and Wales in 2004, the cumulative 10 year mortality from colorectal cancer in males for the decades beginning 40, 50 and 60 are respectively 5, 22 and 70 per 10,000 individuals (ONS 2005). If offering screening reduced this mortality from colorectal cancer by 16%, then the reduction in CRC deaths over the following 10 years for each of these age groups would be 0.8, 3.5 and 11.2 respectively, per 10,000 invited. This somewhat overestimates the benefits of CRC screening, as some of the mortality relates to those diagnosed prior to that decade (ONS 2004). However, it is also an underestimate for those who regularly attend CRC screening. If we use the mortality reduction of 25% estimated for those who regularly attend screening, the reduction in CRC mortality over 10 years for those aged 40, 50 and 60 would be 1.25, 5.5 and 17.5 per 10,000 respectively.”

This puffs the air out of the “16% reduction in deaths” from bowel cancer used in the screening publicity. It’s unfair to use relative risk unless you also tell people what their risk was to start with, and far better to use absolute risk.

This scheme raises pointed ethical questions. We must respect the autonomy of the patient and ensure that the person has enough fair information to make an informed choice. We must be clear about uncertainties and side effects. Using financial incentives to get people to attend screening is morally questionable. It would be far better if we were asked to help people make good choices – not to increase the uptake of screening.

 

Update, 4/Sept/13

This is the new letter.imgBS1

The words ‘through informed consent’ have been added. It’s just as bad.

It would be far more ethical to ask doctors to help patients make informed decisions  – not to simply ‘encourage participation’ . The purpose of informed choice is CHOICE.

 

New update – 26/12/13img122 (2)did get there, eventually.

 

13 Responses to “This is not informed choice.”

  1. steve August 27, 2013 at 9:12 pm #

    Hi Margaret – and agree 100%. I have campaigned for a long time to have relative risk scrapped in material aimed at the general public as it is so often mis-leading and, in my view, amounts in many cases to deliberate mis-selling of a health programme or therapy.

    Patients deserve and should be given absolute risks and a comparator to match them against.

    In this specific case, as Cochrane highlight, the absolute risk of someone in their 60s dying of colorectal cancer in the next 10 years is 70 per 10,000 or 0.7%. With screening this might fall to 52.5 per 10,000 or 0.52% – an absolute risk reduction of 0.175%.

    That’s the basis on which screening should be offered.

    • blima November 26, 2013 at 11:19 pm #

      They send frightening bowel cancer screening letters and offer you a colonoscopy without even knowing your medical history. I have been railroaded into having one and I also have piles that they don’t seem to care about and are most unsympathetic to pain I may be in afterwards. If they do not find anything other than piles I intend to complain and get it published in the press – that I was pressured into having an invasive procedure with risks

  2. Mary September 1, 2013 at 5:29 pm #

    Isn’t this the case for all screening? Breast, Cervical etc? I’m sure I heard that there are targets to achieve in both cases, that result in payments to the practice.

    If it is indeed the case, it should be banned – how can one trust a doctor’s advice if they’re being paid to put forward an opinion?

  3. margaretadmin September 1, 2013 at 7:39 pm #

    It is, Mary, alas.
    There are thresholds to get payment – and these are used as judgements of how ‘good’ a practice is.
    I hate it.

  4. Fed Up September 14, 2013 at 2:16 pm #

    “Informed Consent” can only be achieved when you are not put under “undue pressure” from anyone, never mind your GP. If they have a vested financial incentive to persuade you to change you mind and are, in turn, under undue pressure to achieve certain targets of take up, then undue pressure on the patient will always be a significant and very real risk.

    The use of the term “informed consent” in these circumstances is abhorrent as it seems to suggest that NHS Scotland do not have a concept what informed consent actually is and is not, and how they should be taking seriously the risk of undue pressure potentially being a factor in decisions of this nature.

    NHS Scotland have a duty of care to ensure that their actions are not contributing to undue pressure. This isn’t just a moral obligation, it is also actually a legal one due to the fact that all consent must always be sort in circumstances which don’t apply undue pressure. The buck does not just stop with the GP who deals with the patient. NHS Scotland have a legal obligation to ensure that informed consent is always a possibility and not at risk because of their actions and policies, not just the actions of the GP.

    If this is flagged as a potential risk, then I believe they legally have to take steps to stop this and make sure this risk is minimised to a level where it is highly unlikely to occur. The fact that no one seems to have picked up on these legal obligations when it comes to consent, is in itself, also hugely worrying.

  5. Elizabeth (Aust) September 17, 2013 at 7:15 am #

    I think informed consent has always been ignored in women’s cancer screening. How on earth can they claim any respect at all for informed consent when screening is always presented as something we must do? We have study after study pondering why some women don’t screen, no one ever mentions some women choose not to have this “elective” screening test. We must be non-voters, immature, victims of sexual assault etc.
    Now add target payments (never mentioned to women), the govt-set target and a screening authority with huge resources focused on reaching or passing the screening target…and you can forget informed consent.

    Some doctors still mislead women suggesting a pap test is “required” for the Pill, this was an early trick to increase coverage, women were routinely denied the Pill if they refused…it’s one of the reasons I’ve never used the Pill.

    Some will never respect informed consent, they are used to giving women orders, they view women as subjects/second class citizens, not independent adults with legal rights….and many have a vested or political interest in screening and the target.

    I see UK women will get a new breast screening brochure, it doesn’t go far enough, but it goes a lot further than the disgraceful excuse for a screening brochure we have here…but some just don’t get it or they refuse to respect informed consent, focusing on self-interest. Informed consent will always impact on numbers, profits, jobs etc…and that’s why it’s always been ignored..any mention of it at a higher level is mostly academic, at the surgery level many women still face serious pressure to screen and even coercion.
    When informed consent has never been respected for women, and programs have been permitted to throw proper ethical standards and the law out the window, it will take a lot to change things. I believe it starts with individual women, challenging doctors and the system and refusing to play their game.

    One example that caught my eye:
    “While breast cancer charities welcomed the move, Mia Rosenblatt, head of policy and campaigns at Breast Cancer Campaign, said it was important that women “are presented with the key facts about screening”. But, she added: “However this brings with it the potential that some women will be concerned as a result of this new focus on over diagnosis. This may have an impact on screening attendance.” Screening take-up now be monitored for any potential fall and all women should attend appointments, she added”

    So, she accepts it’s important to give women the key facts, but then finishes by “telling” women they should attend appointments. How on earth does that sit with giving women real information and a say in whether they screen or not? These people need to be challenged, they do not have the right to dismiss informed consent and continue to order women about, counting us off like ignorant sheep.
    Those who don’t get it and continue along the same paternalistic and unethical path should be challenged head-on.
    http://www.theguardian.com/society/2013/sep/16/breast-cancer-risks-nhs-leaflet

  6. Another commentator September 18, 2013 at 11:55 pm #

    I guess the screening service are working on the presumably correct assumption that most people not participating are just forgetting to return their packs.

    To inform the consent what are the downsides to the test I.e what is the false positive rate.

    I also find it interested that people that get worked up about consent for screening (rightly) will often not have the same regard for those who say choose not to have vaccinations.

  7. blima November 26, 2013 at 11:18 pm #

    They send frightening bowel cancer screening letters and offer you a colonoscopy without even knowing your medical history. I have been railroaded into having one and I also have piles that they don’t seem to care about and are most unsympathetic to pain I may be in afterwards. If they do not find anything other than piles I intend to complain and get it published in the press – that I was pressured into having an invasive procedure with risks

  8. Sam Lewis March 10, 2015 at 5:18 pm #

    Agree wholeheartedly Margaret.

    Many years ago our HA insisted on sending crvical screeing invitations as if from me .. Apparently studies had shown that patients werwe much more likely to trust their GP than their HA screening Officer !

    My battle to refuse their using my name (unless I worded the letter) dragged on for years and went to every committee you could think of.
    My beef was that the local cervical screening incidence had run at 5 women per year, whilst the screen-detected CIN rate was 350 per annum,
    No mention then of ‘overdiagnosis’ or ‘false-positives’.

    La lotta continua.

  9. Helen February 5, 2016 at 2:57 pm #

    In England, we are sent a letter inviting us to participate in the bowel screening programme. If we do not wish to, we have to phone a number, and say that we do not want a kit. When I phoned the number (twice), I was put on hold for around 10 minutes each time, so I gave up!

    Surely, a more sensible approach would be to invite us to opt in, not out????? That way, kits would only be sent to people who had requested them: those at high risk of getting bowel cancer, for example.

    I object to any sort of “mass” screening on principle, as I dont want to be spending my well-earned retirement worrying about diseases that I may never get, and undergoing tests when I do not have symptoms. Even if the bowel screening were to reduce my risk of dying from bowel cancer, it does not reduce my risk of dying from other cancers, so I’m probably not much better off if I do the test. And why risk having a colonoscopy if it isnt absolutely necessary? The info sent with the screening information states that of every 10 people offered a colonoscopy owing to a “positive” fecal occult test, five will turn out to have nothing wrong with them. That seems to be an awful lot of unnecessary colonoscopies, not mentioning the worry and the stress.

    The money would be better spent treating those people who are not well, and who need diagnostic tests.

    • Dr L Sam Lewis February 7, 2016 at 6:14 pm #

      Agreed.

      In her BMJ metanalysis Tang stated “It took 9.4 years (7.6 to 11.3) to observe an absolute risk reduction of 0.001 (one colorectal cancer related death prevented for every 1000 flexible sigmoidoscopy screenings).”

      She furnished no data on the risks of 1000 colonoscopies,and no data on total mortality.

      I threw my three invitations in the bin.. but I must expect a letter inviting me to discuss my non-compliance with my GP ?

    • katrehmam May 11, 2016 at 10:05 am #

      Over on the PHE blog someone asks why cervical and breast screening can’t be opt in so we can truly have choice to screen but Dr Anne Mackie states they’re utilised far less than opt out!
      She goes on to state they don’t have the number of women who officially opted out of cervical screening programme ( really? When we’re told it’s soo vital to screen and are hounded unmercifully??) she states I’m breast screening it’s less than 1%.
      I opted out of cervical screening last year, the written “invitations ” seems to have dried up, I refuse to see the doctor now after my last appointment august last year. He harassed me more about the lack of smear test than he spent discussing the anaemia I’d presented with.
      Before easter I told the breast screening unit I wanted to opt out in writing. I’m still waiting for a reply. And I’ll be refusing all bowel screening too..! Help!

  10. Helen February 28, 2016 at 2:48 pm #

    I have written an entry on my blog about my recent experience with bowel screening.

    http://www.mrswahoutsidethebox.wordpress.com

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