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'We're absolutely appalled' say mesh campaigners over NICE decision - ITV news Apr 2019

Discussion in 'Other health news and research' started by Sly Saint, Apr 2, 2019.

  1. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    the problem of lack of recording of harms again a problem
    https://www.itv.com/news/anglia/201...lled-say-mesh-campaigners-over-nice-decision/
    (the story is also in various papers)

    see also this thread:
    https://www.s4me.info/threads/healt...-of-medical-treatment-issues.2553/#post-46645


    eta: this was the poster for the review, am looking for the results.
    https://www.gov.uk/government/news/...t-medicines-and-medical-devices-safety-review
     
    Last edited: Apr 2, 2019
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  2. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    this is the review website:
    http://www.immdsreview.org.uk/


    Statement on the use of surgical mesh following publication of the NICE guideline
    02/04/19

     
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  3. Arnie Pye

    Arnie Pye Senior Member (Voting Rights)

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    'We're absolutely appalled' say mesh campaigners over NICE decision

    I'm absolutely appalled too. This is NICE telling women everywhere to piss off because their experiences and their quality of life is of no interest and of no importance to the NHS. Saying there is "limited evidence on the long-term harms" just means that nobody has thought it important enough to listen to women and record their experiences of mesh surgery. It wouldn't be that difficult to collate the necessary evidence, but clearly there was no real medical or political will to do so.
     
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  4. DokaGirl

    DokaGirl Senior Member (Voting Rights)

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    Very appalling, but no longer surprising, as commerce seems to come before health and safety with governments and industry.

    As Dr. Nancy Klimas said in Unrest, "Let me be a feminist here", (paraphrased), and say why do manufacturers and governments think it's OK to implant potentially damaging metal and plastic medical devices into women's urogenital organs?

    Canadian Class Action Lawsuit re damages from transvaginal mesh implantation:
    https://www.siskinds.com/class-action/transvaginal-mesh/

    Health Canada warning re this mesh (not banned):
    http://www.healthycanadians.gc.ca/recall-alert-rappel-avis/hc-sc/2014/39475a-eng.php

    Canadian Urological Association position on this; patients should be made aware:
    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5461136/
     
    Last edited: Apr 2, 2019
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  5. It's M.E. Linda

    It's M.E. Linda Senior Member (Voting Rights)

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    There has been some ‘political will’ as heard in the Debate
    ‘Safety of Medicines & Medical Devices’ in House of Lords 28.2.2019

    (Moved by Lord O’ Shaughnessy) who said, in his opening words:


    “Thirdly, and related to the previous point, all these women had been campaigning for years to have their voices heard, their pain and suffering recognised, and it had often fallen on deaf ears. In this respect, the parallels with scandals like the one at Mid-Staffordshire could be seen: a system that too often turns its back when criticised, rather than offering a compassionate and understanding face that seeks to help those affected and prevent the problems occurring for others. It was this insight—that there were common themes that warranted further explanation—that led to my suggesting to the then Health Secretary, Jeremy Hunt, whose abiding principle was that patient safety should always come first, that we needed an independent review into our medicine and medical device safety regime. I was delighted when he and the Prime Minister supported the proposal, and even happier when my noble friend Lady Cumberlege was appointed to lead it. It is fantastic that she is able to speak in the debate today. The work she is doing is so important, and I believe that the way she has engaged patient groups around the country through her review has been truly exemplary. She has already made a big difference, because it was on her recommendation that a pause was instigated on certain mesh procedures in England.”


    Then, pay particular attention to Baroness, Lady Cumberlege at 1.50pm in

    https://hansard.parliament.uk/Lords...FBE6225E54/SafetyOfMedicinesAndMedicalDevices

    So, even with an independent review already started, NICE has made an appalling decision.

    Glad to see that Baroness Cumberlege is continuing the fight as shown in @Sly Saint ’s post above.
     
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  6. Arnie Pye

    Arnie Pye Senior Member (Voting Rights)

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    Thanks for the hansard link. I'm glad there are some people in parliament with a heart. I still think there are plenty of politicians who had theirs excised at some point in their lives, but that could just be my own prejudice.
     
  7. Trish

    Trish Moderator Staff Member

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    I agree it's very worrying. It's not only a feminist issue, there is also a problem of mesh used in hernia operations which affects men as well.

    BMJ news, September 2018:
    Hernia mesh complications may have affected up to 170 000 patients, investigation finds.

    https://www.bmj.com/content/362/bmj.k4104

    I know a young man in the UK who had a mesh hernia op 10 years ago, luckily without complications so far, but when he needed the other side done, he wanted it without mesh and his local hospital in a big UK city had no surgeons who knew how to do the op without mesh, so he travelled to Germany to have it done and the NHS says it will pay most of the cost of the operation.
     
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  8. Diluted-biscuit

    Diluted-biscuit Senior Member (Voting Rights)

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    I’ve been disappointed with how the problems have been framed. There seems to be an issue with implants in general and a lack of testing and trials. The media focus is very narrow in my opinion.
     
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  9. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    this is what could easily happen with the ME/CFS NICE review re CBT/GET which means that any argument to remove them from the guidelines will need to be carefully phrased in particular to counter the argument that 'the treatments help some people'.
    If they deem that there is 'insufficient evidence of long-term harm' (which there will be if they only go by trial results) then there must be a stronger argument with almost indisputable evidence as to why CBT/GET should not be included as specific 'treatments' for ME/CFS.

    @Keela Too
    @adambeyoncelowe
    @Jonathan Edwards
     
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  10. Revel

    Revel Senior Member (Voting Rights)

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    I developed a serious "hidden" hernia early last year. Five months and 7 NHS doctors later, they still hadn't found it and suggested that my pain was imaginary, or that I had constipation (like I wouldn't know!).

    I privately sought out the German hernia surgeon who repairs hernias without mesh (presuming we are talking about the same person), and was lucky to get an appointment with her in London. She found my hernia easily by dynamic ultrasound within 5 minutes of meeting, which the NHS could have done I'm sure, if only they had believed me in the first place.

    Unfortunately, I was not well enough to fly to Germany for surgery, which the NHS would pay most of the cost for, and had to foot the entire bill to have it done by her in the UK (absurdly, the NHS will only offer financial aid if the operation is done abroad). I may be very much the poorer, but I was determined not to have mesh surgery if it could be avoided.

    The majority of NHS hernia surgeries in the UK are performed on men and virtually all are done using mesh. Although the number of women receiving this surgery is small in comparison, they have a far higher rate of post-surgery complications, largely due to their differing anatomy and greater susceptibility to auto-immune issues.

    The German doctor gave me her telephone number/email address and told me to contact her at any time if I have any concerns in the future regarding my recovery. I had to do so last month and, true to her word, she offered her advice freely at no additional charge.

    Did my ME diagnosis influence how the NHS treated me? I cannot say, but I was discharged from our local hospital, still in acute pain from an undiagnosed hernia, clutching only a box of unnecessary laxatives . . .
     
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  11. Trish

    Trish Moderator Staff Member

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    Probably not, since the surgeon in the case I know of was male! It's not just UK that has a problem. He met another patient having the same op the same day who was from Ireland and had flown to Germany to have the op without mesh.
     
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  12. Revel

    Revel Senior Member (Voting Rights)

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    Possibly from the same team, though. They see many patients from outside of Germany for revision of hernia mesh procedures gone wrong, or hernia repair. The surgeon that I saw comes to the UK once a month to operate here, but her male colleague works almost exclusively from the German hospital.
     
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  13. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    I have addressed this specifically in my memorandum to the committee, and repeated it in my summary. The argument aboit helping some people needs to be evidence based. Some people getting better is not evidence.
     
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  14. DokaGirl

    DokaGirl Senior Member (Voting Rights)

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    There is also porcine mesh, which is used for some hernia operations. It's supposedly more biocompatible. I don't know how well this works; I would think it is not as strong, but I don't really know:https://www.sages.org/wiki/biologic-mesh/

    This mesh is I believe, more expensive than the synthetic. I don't know if it causes health problems.

    As @Diluted-biscuit says, there seem to be issues with all implant devices. I would add bone grafts to that. One's own bone is hopefully exempt from that. But allografts, and xenografts don't necessarily work for everyone, no matter how many supportive scientific studies are written.

    Titanium dental implants are suspect by holistic dentists, whom I understand advise these implants can make people sick. I don't know if they have an evidence base on this.

    Although, what choice would someone with a shattered hip have? They need it replaced; unless I'm wrong, some form of metal needs to be used - hopefully more biocompatible metals.

    There are now zirconia implants on the market - however, there is a concern with this material fracturing: https://onlinelibrary.wiley.com/doi/full/10.1111/prd.12180
    https://onlinelibrary.wiley.com/doi/full/10.1111/prd.12180

    And, there are the issues of breast implants causing illness, as well Essure, a permanent birth control device that has caused life-changing pain for many, many women: https://www.s4me.info/threads/canad...tigation-of-medical-devices.7033/#post-126749
     
  15. DokaGirl

    DokaGirl Senior Member (Voting Rights)

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    Thank you @Jonathan Edwards.
     
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  16. wdb

    wdb Senior Member (Voting Rights)

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  17. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    There are issues with implants, just S there are issurs with drugs, cars, kettles and lawnmowers. But it wpuld be a mistake to generalise. Titanium is excellent for dentistry and no good for hip replacements.

    The central problem is treatment for profit. That drives huge numbers of unnecessary operations. If surgeons were paid a standard wage to select the best treatment or, equally, no treatment people might be a lot healthier.

    There is also a laxity of regulation in terms of evidence requirement fpr surgery just as there is for therapies.
     
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  18. DokaGirl

    DokaGirl Senior Member (Voting Rights)

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    Yes, titanium is excellent for dentistry. I forgot to mention that point. I don't know what is used for hip replacements, but will defer to your knowledge.

    I have found one can Google till the cows come home looking up all kinds of peer reviewed articles about various medical devices, and treatments, but what may be concluded in these articles still may not fit the individual. And yes, unfortunately I have seen the drive for profit all too often. Especially in dentistry - there is no universal dental care in Canada.

    @Jonathan Edwards, thank you very much for your research re ME/CBT/GET issues, and your work with the NICE committee. I watch from afar in Canada, but with the knowledge that what is decided will effect hundreds of thousands in Canada as well. We are glad to have you in our corner.
     
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  19. Arnie Pye

    Arnie Pye Senior Member (Voting Rights)

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  20. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    blog on BMJs website by Carl Henegan
    Carl Heneghan
    Editor in Chief BMJ EBM, Professor of EBM, University of Oxford

    https://blogs.bmj.com/bmjebmspotlight/2019/04/04/what-a-mesh/
     
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