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The Voices Today on Messed up Mesh

Telephone: (+44) 01454 772803 · Mobile: 07754 499280 Email: contact@tvt-messed-up-mesh.org.uk Website: www.tvt-messed-up-mesh.org.uk

Date: 20th October 2019 Newsletter Edition: 2 By: Lorraine Evans

Welcome to the newsletter, please take your time to read the newsletter published every six months, it certainly has been a busy time since our last newsletter in April 2019.

International Continence Society (ICS)

In June 2019, Lorraine Evans Founder, The Voices Today on Messed up Mesh (TVT MUM) is appointed International Continence Society (ICS) Committee Member Patient Representative for the ICS Consensus Document on the Diagnosis and Treatment of Mesh Complications.

Patient Support Group Meet and Greet

Date: Tuesday 15 October 2019 at 12.30pm Venue: Cross Hands Hotel, Tetbury Road, Old Sodbury, United Kingdom, BS37 6RJ It was so nice to meet you all, the love, care and sharing experiences was heart-breaking but we consoled with all our hearts to each other. Please can I mention the other ladies who couldn't attend this time I want them to know you were there with us as a mention too - Mary, Kimberley, Angela, Yvonne, Nirmala, Susan, Hayley, Terri, Ann, Carina, Elaine, and lovely Cat, plus I'm sure more would have come along, these ladies couldn't attend due to life's challenges, we missed you being there with us but you were all there in our thoughts as too all the mesh-injured ladies throughout the whole world. Love, care and empathy to each other is what we need throughout our difficult mesh journey.

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Facebook Private Patient Support Group

TVT Mum support group – South West of England Date: 14th October 2019 We have re-opened the Facebook Patient Support Group Facebook for latest news and events: https://www.facebook.com/tvtmessedupmesh/ Facebook Private Support Group: https://www.facebook.com/groups/653044931887243/ Facebook private support group is currently not published until the work is finished, thank you for your patience.

Celebrating 10 Years Anniversary Year 2009 to Present Day The TVT MUM website was published in May 2009 and opened our Twitter account in June 2009.

The Independent Medicines and Medical Devices Safety Review

IMMDSReview Oral hearing held on Tuesday 21st May 2019 Session 1 by Hayley Martin at TVT MUM MMDSR YouTube Channel: https://www.youtube.com/watch?v=KqeQaCd9eF4&feature=youtu.be By: Lorraine Evans Founder and ICS Committee Member Patient Representative, and Hayley Martin MBACP FdA Counsellor/Psychotherapist.

1. 21st November 2018 submitted evidence with supporting documents 2. 21st May 2019 Oral hearing session 1 by Hayley Martin 3. 27th September 2019 submitted timeline of events Year 2008-Present Day

Baroness Cumberlege CBE DL quoted within the oral hearing video ‘How do we rebuild confidence in the medical profession’ also ‘The data is flaky – we got to ensure to make it robust’ Sir Cyril Chantler GBE quoted ‘How many affected by non-legal claims – Statute of limitations out of time?’

IMMDSR Email: reviewteam@kcl.ac.uk IMMDSR Evidence Submitted: http://immdsreview.org.uk/Evidence.html

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NHS Specialised Women’s Service Date: May 2019 NHS PPV Stakeholder TVT MUM submitted feedback to help with the formation on the Multi-Disciplinary Teams (MDTs) for the Mesh Complications and Removal Services Webinar – 14th May 2019 NHS England - Clinical Reference Group Stakeholder Registration – April 2019-December 2020

Thank you Christopher Harding MA MB BChir MD FRCS Urol and Keri Lewis NHS Communications & Engagement Lead, ‘an opportunity for all the mesh injured to participate shaping the framework for mesh complication and removal services,’ Travelling expenses paid attending meetings or if unable to travel you can join the webinar. Stakeholder registration is open for all stakeholders, including patients, carers, service users, members of the public, clinical staff, provider organisations working in specialised services and voluntary sector partners. When filling out the stakeholder registration form, the CRG Selection - Item 6 will ask – ‘Please select at least one Clinical Reference Group, from the Programmes of Care, you wish to register as a stakeholder’ Select: ‘Specialised Women’s Services’.

Registration Closes on 20 December 2020

To register please view this link: https://www.engage.england.nhs.uk/application/crg-stakeholder-reg-april-2019/

Multi-Disciplinary Teams (MDT’s) UK Today surgeons recognise there’s a critical status to have more experienced synthetic mesh removal surgeons to help with mesh complications for SUI, POP, Hernia and Rectopexy. Campaigners and support groups fought hard throughout the years for Multi-Disciplinary Teams (MDT) centres, if we didn’t do this at the beginning where would we be now? To find an MDT centre please ask your GP to refer you, the centres are for patients with mesh complications. All centres state – ‘If surgery to treat mesh complications is advised by the MDT, and this surgery is felt to be beyond the remit of the unit, onward referral will be made to an appropriately experienced centre’

Please view this link with the map and press the red icon for centre information: https://www.baus.org.uk/patients/sui_mesh_complications.aspx

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National and International Latest News

United Kingdom

Westminster Hall today 5th September 2019 MP Jim Shannon debates on Hernia mesh for men, link is here to view the Parliament TV --> move to timeline at 15:00:25 to listen: https://www.parliamentlive.tv/Event/Index/2fd2e147-1619-45af-ba2f-0008a5335767 Parliament debate today 5th September 2019 on Hernia Mesh - Hansard Transcript ---> https://hansard.parliament.uk/Commons/2019-09-05/debates/7C37B186-E495-4E21-86E1-0745B5E4DBB2/HerniaMeshInMen

United Kingdom

House of Commons - Surgical mesh implants

Published Thursday, September 5, 2019 This briefing paper provides an overview on mesh implant use in surgery to treat pelvic organ prolapse and stress urinary incontinence, and recent action to halt these procedures. It also briefly discusses the use of mesh in hernia repair surgery. To read more: https://researchbriefings.parliament.uk/ResearchBriefing/Summary/CBP-8108

United Kingdom The Independent Medicines and Medical Devices Safety (IMMDSR) Date: 12th September 2019 Thank you so much for all you do to help the mesh injured to apply for Personal Independence Payment (PIP). Mesh patient groups - IMMDSR news 12/09/19 - The Review team recently met with senior officials from the Department for Work and Pensions, which is responsible for PIP. To read more: http://immdsreview.org.uk/news.html

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United Kingdom

To read more: https://topol.hee.nhs.uk/

United Kingdom

Interim Surgical Mesh Database Feasibility Report Reports | Published: 16 Jul 2019 | Author: HQIP HQIP was commissioned by the Department of Health and Social Care (DHCS) to undertake a feasibility study to investigate urogynaecological surgical mesh data requirements. To read more: https://www.hqip.org.uk/resource/interim-surgical-mesh-database-feasibility-report/ To Ann, thank you for sharing this important link, and for all you do to help the mesh-injured plus for your research, very much appreciated.

United Kingdom Comment on the nature of complications from polypropylene slings for female stress urine incontinence Date: July 2015 By: Lise Hanne Christensen, MD, dr. med., senior pathologist and Thomas Bjarnsholt, Professor, dr. med & Ph.D To read full article: https://ec.europa.eu/health/scientific_committees/emerging/docs/surgical_co_christensen.pdf To Ann, thank you for sharing this important link, and for all you do to help the mesh-injured and for your research on mesh medical devices, very much appreciated.

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United Kingdom The Independent Medicines and Medical Devices Safety (IMMDSR) Date: 28th June 2019 NICE clarifies guideline on use of mesh following Review’s intervention. We heard concerns from a number of mesh-affected patients and patient groups that the recent NICE guidelines for the management of stress urinary incontinence and prolapse published in April (NG123) had apparently lifted the ‘research only’ restriction in the use of transvaginal mesh for the treatment of vaginal prolapse. To read more: http://www.immdsreview.org.uk/news.html

United Kingdom Bristol surgeon who performed controversial bowel mesh operations is sacked Date: June 2019 A surgeon who carried out a controversial type of bowel mesh surgery, leaving dozens of women in severe pain, has been sacked by an NHS trust. To read more: https://www.bristolpost.co.uk/news/bristol-news/bristol-surgeon-who-performed-controversial-3020143

United Kingdom The 49th ICS Annual Meeting that took place on 3-6 September 2019, in Gothenburg,

Sweden.

To read more: https://www.ics.org/2019

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United Kingdom

United Kingdom Devon hospital probe demanded by suffering women who received vaginal mesh surgery Date: May 2019 “We demand that a full investigation regarding the informed consent and real health outcomes for all women who have received mesh surgery at Torbay Hospital, since its introduction, is carried out as a matter of urgency" To read more: https://www.devonlive.com/news/devon-news/devon-hospital-probe-demanded-suffering-2818013

United Kingdom Devon and Cornwall – South of England

Devon and Cornwall Mesh Awareness Facebook: https://www.facebook.com/susan.morgan.5876 To Susan, thank you for all you do in your support group and for your South of England campaign, sending best wishes.

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Ireland

IMMDSReview ORAL HEARINGS - Tuesday 19th March 2019 - SESSION 2 MESH Ireland By: Mary McLaughlin and Mrs Fiona Bicknell: Patient Representatives IMMDSR YouTube Channel: https://youtu.be/nVf9uKu2Xu4 To Mary and Fiona and to all your members, thank you for all you do in your support group and for the Irish campaign, wishing you all the best.

Ireland

Book published 2000 by Linda Cardozo, David Staskin and Michael Kirby Mary McLaughlin Mesh Ireland quoted ‘Women as collateral damage of the 'quick fix' surgeries.’ To Mary, thank you for sharing information, this is absolutely shocking to read in this book published in 2000, on page 81 as quoted ‘death has been reported due to inaccurate passage (I would like to add ‘Blind Passage’) of the trochers (for the TVT Medical Device) through the retro-pubic space, by surgeons inexperienced in surgery for incontinence.’ This was always our fear and now it’s in black and white. Very saddened to read this has happened, may all those patients rest in peace.

Date: February 2018 Article: You can't make an omelette without breaking a few eggs. Surgeon is criticised for dismissing the scale of women's suffering in the mesh implant scandal Ms Cardozo, who works for King’s, London, currently in special measures, said you could not make an omelette without breaking a few eggs and said a lot of the problems blamed on mesh were things women would get anyway as they aged. Idiom: Sometimes, you have to do unpleasant things in order to complete a task or meet a goal. To read more: https://www.cambstimes.co.uk/news/professor-carl-heneghan-sling-the-mesh-parliament-appg-1-5380772

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Scotland PE01517: Polypropylene Mesh Medical Devices Petitioner: Elaine Holmes and Olive McIlroy on behalf of Scottish Mesh Survivors - "Hear Our Voice" campaign - Calling on the Scottish Parliament to urge the Scottish Government To read more: http://www.scottishmeshsurvivors.com/our-petition.html To read all news: http://www.scottishmeshsurvivors.com/news-media.html To Elaine and Olive, thank you for all you do for your support group members, wishing you all the best in your Scottish Campaign.

Scotland Newton Mearns mesh survivor to meet Nicola Sturgeon over scandal Date: 18 October 2019 A MESH implant survivor and campaigner has been given new hope after Nicola Sturgeon agreed to meet with her following the latest turn of events in the NHS scandal. To read more: https://www.barrheadnews.com/news/17978570.newton-mearns-mesh-survivor-meet-nicola-sturgeon-scandal/

Wales A sad loss for the Worldwide Mesh Community Date: October 2019 Kevin C Petersen Dr. Robert Bendavid passed in a Toronto area hospital this morning. He was my good friend and this is a deep personal loss for me. It is also a great loss to our profession and other doctors who have and interest in taking care of mesh victims. He was also a champion for the preservation of the art and science of repairing hernias without mesh getting outstanding results and no chronic pain. He taught me a lot. My skills as a physician benefited greatly in my association with Him. I will miss him. Kevin C. Petersen M.D. To Jemima and Kevin C Peterson, A sad and great loss to the Worldwide Mesh Community, may Dr Robert Bendavid rest in peace.

Wales The Welsh Mesh Survivors Campaign work tirelessly with the Welsh Government To Jemima, and all your members in Wales, thank you for everything you do in your support group and for the Welsh campaign.

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Wales IMMDSReview ORAL HEARING - Monday 20th May 2019 - SESSION 1 By Jemima Williams and Dr Dennis Williams IMMDSR YouTube Channel: https://youtu.be/EnIq1z__K6Q To Jemima and Den, thank you for your very informative oral hearing, all the best.

New Zealand Responding to harm from surgical mesh. Date: April 2019 A report for the Ministry of Health https://static1.squarespace.com/static/5d16814d1c9a340001db83c2/t/5d1d5352ac21b90001b7b8f7/1562202967417/Responding+to+Harm+from+Mesh+Diana+Unwin+Chair+in+Restorative+Justice+%281%29.pdf

Support Group Mesh Down Under Website: http://meshdownunder.co.nz/ Facebook: https://www.facebook.com/MeshDownUnder/ To Charlotte, Patricia and Carmel, thank you for your very informative website, and for all your campaign work in New Zealand, all the best.

USA

Neurological Assessment of Sling Complications: Time for Early Diagnosis of Injuries Date: August 9th, 2019 - Neurological assessment, timely diagnosis and treatment for sling complications are important to prevent life-time physical disability or sexual dysfunction. https://tvm.lifecare123.com/neurological-assessment-of-sling-complications-time-for-early-diagnosis-of-injuries.html

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USA US Food and Drugs Administration - FDA On April 16, 2019, the FDA ordered all manufacturers of surgical mesh intended for transvaginal repair of anterior compartment prolapse (cystocele) to stop selling and distributing their products immediately. https://www.fda.gov/medicaldevices/productsandmedicalprocedures/implantsandprosthetics/urogynsurgicalmesh/

USA

Date: 1st May 2019 Subject: International Mesh Awareness Day By: Janis Kay Urban Twitter: https://twitter.com/JanUrban12 To Janis, thank you for your International awareness work, we love your International Mesh Awareness Day posters, all best wishes.

India Submit report on any adverse reaction to pelvic mesh, J&J told By: Bindu Shajan Perappadan Date: 27th April 2019 Emulate USFDA in banning use of the product, govt. requested Days after the U.S. Food and Drug Administration (FDA) banned surgical pelvic meshes — used to support the abnormal descent of the pelvis in women — following reports of adverse reactions, the Union Health Ministry has written to pharmaceutical giant Johnson & Johnson seeking information on the import, sale and stock of the product in the last three years. https://www.thehindu.com/news/national/submit-report-on-any-adverse-reaction-to-pelvic-mesh-jj-told/article26968041.ece

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The Worldwide Petition The ongoing Worldwide petition is for all countries it's about surgical synthetic mesh implant medical device complications affecting people who had this surgical procedure for Stress Urinary Incontinence (SUI), Pelvic Organ Prolapse (POP), Hernia (common types) Rectopexy (Bowel). Copying and pasting the petition is prohibited and not recognised as the TVT MUM official petition. Signatories have kindly shared their surgical experiences and given consent when they sign, Governments and relevant official organisations can request a download copy of the petition and is treated as strictly confidential. At the bottom of the petition you can view all signatories please click on ‘load more’, thank you for signing and to all signatories who have kindly shared their mesh experiences. To protect privacy - No email addresses are shared with us or any third parties.

Please share and sign the online world petition

https://www.thepetitionsite.com/1/an-urgent-review-is-required-on-the-medical-devices-tvt-tvto-tot-and-the-use-of-mesh-graft-for/

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Do you have any news? we would love to hear from you Email: contact@tvt-messed-up-mesh.org.uk

"Live by the sword, die by the sword" This is a proverb in the form of a parallel phrase, it doesn’t mean literally ‘by the sword’

The saying “live by the sword, die by the sword” is an idiom that basically means “what goes around comes around.” More to the point, “if you use violent, forceful, or underhanded methods against other people,

you can expect those same methods to be used against you.”

Courage doesn’t always roar. Sometimes courage is the quiet voice at the end of the day saying,

“I will try again tomorrow.”

Mary Anne Radmacher

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