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The Voices Today on Messed up Mesh (TVT Mum)
Help and support to both men and woman who have had the medical device TVT Retropubic, TVT-Secur, TVTO and TOT, synthetic polypropylene mesh for hernias, prolapse, stress incontinence and bladder and bowel disorders. You're not alone!

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Year: 2019 and 2020
Latest News for the Website and Updates

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Please Scroll down the whole webpage to read all the latest news and updates
Updated: 14 March 2020

Date: 14 March 2020
Latest News from the Medicines and Medical Devices Safety Review
IMMDSR - A statement about the planned publication of the Review’s report

Coronavirus continues to spread and pose a serious health threat. We have been monitoring developments closely and are guided by the latest scientific advice and predictions. The start of the peak of coronavirus infections is expected to be within the next ten to 14 days, coinciding with our planned publication date. By that point, if not earlier, there are likely to be movement restrictions and other measures, particularly to protect people with underlying health conditions and other vulnerabilities.

We also expect that the spread of the virus will have a significant impact on the ability of the healthcare system, the political world and the media to focus on healthcare matters beyond the virus itself. The moment of our report’s publication should be a moment of acknowledgement and recognition of the harm and suffering that has happened. In the current climate, we do not believe this would be achieved.

We have considered the options open to us and have reluctantly come to the view that we should postpone the planned publication of the report on 24th March. This is frustrating for us, but given the circumstances it would be irresponsible of us to do otherwise. We hope this postponement will be as short as possible. When we do launch our report, the focus will rightly be on the issues and matters of importance to those who have been harmed. By that stage too Government will be in a better position to act on our recommendations.

As soon as we are able to confirm a new publication date, we will make a further statement here. During the life of the Review there are various actions we have encouraged the health and care system to take in order to improve safety and bring help and support to those who have suffered. The system has started to implement those actions. We will use the period of postponement to continue to press the system to take them forward as best it can in the current environment.
Website Link to view the IMMDSR Latest News https://www.immdsreview.org.uk/news.html

Date: 20 October 2019
Latest News for the Mesh Community
Welcome to the October 2019 newsletter edition 2, 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.
To download the PDF newsletter please visit the link: TVT Mum Newsletter > > >

Date: 21 May 2019
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

Evidence documents submitted to the IMMDSR
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 video session 1 by Hayley Martin
3. 27th September 2019 submitted timeline of events Year 2008 to 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?'

Date: 16 May 2019
The Independent Medicines and Medical Devices Safety Review
News and Progress

With spring upon us, I wanted to take the time to update you on our progress, and set out our activity over the coming months.

Visit to Glasgow
Having made the journey to Scotland in November last year, we returned last month to once again meet women affected by pelvic mesh implants, whose stories and experiences were as moving as they were inspiring.

Despite meeting hundreds of women over the past year during visits across the length and breadth of the United Kingdom, my team and I are always struck not only by the scale of the suffering, but by the wider impact on the woman and her family too. Our visit to Glasgow was no exception. We met many people with harrowing stories and we were once again very moved. One cannot ignore how the physical and emotional pain that follows these terrible complications leads to the breakup of marriages and partnerships, and the loss of jobs, homes and social lives.

It is impossible to imagine the suffering, but my team and I have tried to listen to as many affected individuals as possible and we continue to have the utmost respect for the bravery and dignity of all those who have been affected by Primodos, sodium valproate and pelvic mesh.
To read full progress http://www.immdsreview.org.uk/news.html > > >

List of manufacturers and mesh products
Year 2012 - We compiled a list of manufacturers and different mesh products, there could be a lot more to add in the near future, for those interested in viewing please visit the link below:
https://www.tvt-messed-up-mesh.org.uk/tvt-mesh-products-manufacturers.html > > >

Date: 10 May 2019
Professor Hashim Hashim
Consultant Urological Surgeon, Honorary Professor of Urology & Director of the Urodynamics Unit at the world-renowned Bristol Urological Institute
Dated: 13 September 2018
Excellent faculty & interactive delegates, advanced. surgical, training, Special session on mesh removal with clear anatomy, demonstration and pelvic floor physiotherapy.
Please view Professor Hashim Twitter Feed:
twitter.com/urohash/status/1046287945626513408 > > >

Date: 10 May 2019
Mesh in urological surgery in the UK - background, reviews and current status
By Stephen Unterberg and Tamsin Greenwell

All UK urologists, unless they have been on a 10 year silent retreat, are by now aware of the controversy surrounding surgical use of mesh in general and urological / urogynaecological use of mesh for the surgical treatment of stress urinary incontinence (SUI) and pelvic organ prolapse (POP) in particular.

The majority (but not all) of UK urologists are also no doubt aware of the current 'High Vigilance Pause' on the use of mesh surgery for POP and SUI in England [1]. This article attempts to demystify the background to this current pause and the likely future direction of SUI and POP and related surgery.

You can also download the full article (PDF) from this link:
www.urologynews.uk.com/features/features/post/mesh-in-urological-surgery-in-the-uk-background-reviews-and-current-status > > >

Date: 26 April 2019
Edition: 1

News for the Mesh Injured Community

The Independent Medicines and Medical Devices Safety review (IMMDSR)
TVT MUM submitted their evidence November 2018 for the review team, due to unforeseen circumstances our evidence submission was thankfully accepted. We declined to have the document published on the IMMDSR website as we only had a short timescale and also contains sensitive content, we're happy the evidence is in the right hands.

Lorraine Evans Founder, The Voices Today on Messed up Mesh (TVT MUM) and Hayley Martin MBACP FdA Counsellor/Psychotherapist and two accompanying people will attend IMMDS review with Baroness Cumberlege, CBE, DSG, DL and the review team Oral Hearing on 21st May 2019.

Information for the IMMDSR review team

1. If you would like to share a small statement on your mesh experience or to see changes within the health system or any other concern's you may have; we can give the information to Baroness Cumberlege and review team
2. The Petition, we're sending shortly before 21st May 2019 the up-to-date official download petition version with all signatories. Please see page 6 for more information.
3. Government Compensation? (bullet points in brief, not fully inclusive concerns)
• For many years people suffered in constant long'term pain, no one to help us
• Medical professionals were and some still are dismissive
• Experiments for implanting the mesh implant medical devices
• Experiments for complex surgical procedures for excision/removal of mesh implants, in some cases multiple meshes implanted by multiple manufacturers
• Through surgical experimenting patients are left with permanent injuries, crippled and quality of life destroyed
• Most surgeons had one day/weekend video training, attendance of sales rep's, plus concerns on synthetic mesh
implanted/fixed incorrectly
• Patients suffer with thoughts of suicide and sadly some have committed suicide
•Currently there's a medical health crisis, not enough experienced surgeons
4. Requested by IMMDSR - if you would like to be a case study about any difficulties you have claiming Personal Independent Payments (PIP) or any other benefits.

Can you help on any of the item's above? Please email: lorraine@tvt-messed-up-mesh.org.uk

Please visit the link to view written and oral evidence www.immdsreview.org.uk/Evidence.html > > >

NICE Guidelines Published April 2019
IMMDSR statement on the use of surgical mesh following publication of the NICE guideline
02/04/19 - Baroness Cumberlege CBE, Chair of the Independent Medicines and Medical Devices Safety Review said: Our position is very clear. Last July, we recommended, and NHS England and the Department of Health & Social Care agreed to, an immediate pause in the use of mesh for stress urinary incontinence.
To read the full statement please visit this link: http://immdsreview.org.uk/news.html > > >

Multi-Disciplinary Teams (MDT) 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?

1. 2005, Lorraine is at the beginning of her dreadful mesh journey, TVT surgery was performed by an obstetrician, next day nearly died, Pulmonary Embolism, suffered ongoing ill health plus other complications. It was not known publicly about mesh complications.
2. 2008, discovered something not right, appointment with GP, could see mesh poking through, didn't know who to contact, was asked to research, couldn't find anyone in the UK. Found in the USA Dr. Shlomo Raz, Professor of Urology and Philippe E. Zimmern, MD Professor of Urology https://www.tvt-messed-up-mesh.org.uk/pdfs/Dr-Zimmern.pdf > > >
3. During 2008, found a USA support group (Lana Keeton) shared difficult times with the members, extremely helpful, there was no support group in the UK at the time. The members increased in the UK and around the world.
4. During 2008, emailed Dr Raz and Prof Zimmern, asked who can help me in the UK, was given contact details for Professor Christopher Reginald Chapple BSc, MD, FRCS (Urol), FEBU, made a private consultation appointment, travelled in severe pain, was a 4 hour journey there and back. Confirmed mesh has gone through the vaginal wall.
5. 2008 - 2009, Professor Chapple could not help further, not in his NHS catchment area, gave two more surgeons (UK)to contact the first surgeon was very dismissive, then contacted Professor Marcus Drake BM, BCh, MA(Cantab.), DM (Oxon.), FRCS(Urol) an experienced and highly respected surgeon, he helped me over the years and saved my life.
6. 2009, the mesh journey begins for the UK, The Voices Today on Messed up Mesh (TVT MUM) website is published with a message board for all the members, it was during this time we all helped each other, shared experiences, shared valuable information, increased support groups, and found more surgeons, for years it was and still is difficult to find an experienced mesh removal surgeon.

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 for an MDT centre and press the red icon for full information: https://www.baus.org.uk/patients/sui_mesh_complications.aspx > > >

Do you want to see an effective care pathway for all the mesh injured?
NHS England - Clinical Reference Group Stakeholder Registration -April 2019 to 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'.
NHS Stakeholder Specialised Womens Services
To register please view this link: https://www.engage.england.nhs.uk/application/crg-stakeholder-reg-april-2019/ > > >

Informed Consent in the UK
The Montgomery case in 2015 was a landmark for informed consent in the UK
Published May 2017 - The Montgomery v Lanarkshire case of March 2015 drew fresh attention to informed consent. Nadine Montgomery,...

To read the full article please visit this link:
https://www.bmj.com/content/357/bmj.j2224 > > >

Worldwide Campaigners and Support Groups
Mesh injured patients and people seeking advice should know there are numerous campaigners, support groups and individual support available, the press/media appears to only show one or maybe a couple of groups available.

Some mesh injured want different kinds of support, some don't have access to the internet, not internet savvy, also some would like to join/attend/meet up in a local group, and others want complete privacy and confidentiality support by telephone.

Would you like to see a consolidated list of available campaigners, support groups plus also some individuals prefer to work alone to give support ?

We can publish a webpage, ie: Name of Group, Country, About and Purpose, Contact details ( can include telephone, email, website, social media link, or what you feel is relevant) If this interests you please contact Lorraine for more information, feedback is very much appreciated. Contact email: lorraine@tvt-messed-up-mesh.org.uk

Sean is the husband of a mesh injured woman. He provides a different perspective into a mesh injured person's life and the effect on the family.
Please view the video on YouTube- https://youtu.be/jSgQXgKVr48 > > >

Worldwide Consultant Surgeon's Genuine Quotes
UK, Urogynaecology, research, public understanding of evidence, surgical training, pelvic mesh, native tissue alternatives.
'Shocking story - many hallmarks of the current suffering by many. Chronic pain, not believed, use of dustbin terms (in this case - Somatisation Disorder);, impact on job / relationship / social life, desperation and depression. Any one feeling the same must seek help. and persist.'

UK, Year 2011 - Consultant Gynaecologist
'There needs to be pressure form the medical profession about the dangers of these synthetic implants. There is considerable under-reporting of side effects because surgeons may be reluctant to admit such problems occur in their practice, especially with private patients.'

USA, Reconstructive Urology Fellow. Specializing in urethroplasty, prosthetic surgery, urinary diversion, and robotic recon.
'I think we need to be honest as a community in determining if surgeon case volume is adequate to maintain credentials for mesh sling placement.'

USA, Urologist specializing in male, female and transgender surgery. Associate Prof. & Director of Reconstructive Urology.
'Great point. Too often mesh slings are used by inexperienced surgeons who took a weekend course and would otherwise feel uncomfortable doing an autologous sling.'

We're seeing loads more surgeon quotes too!

Worldwide News
USA flag
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.
The FDA has determined that the manufacturers, Boston Scientific and Coloplast, have not demonstrated reasonable assurance of safety and effectiveness for these devices,
To read more www.fda.gov/medicaldevices/productsandmedicalprocedures/implantsandprosthetics/urogynsurgicalmesh/ > > >

USA flag
Johnson & Johnson pays $9.9M to settle Washington state pelvic mesh lawsuit April 22, 2019 at 10:58 am
Updated April 22, 2019
www.seattletimes.com/seattle-news/johnson-johnson-settles-washington-pelvic-mesh-lawsuit-for-nearly-10-million/ > > >

USA flag
Washington Attorney General Bob Ferguson settles Johnson & Johnson surgical mesh lawsuit 22 April 2019
YouTube Video' https://youtu.be/FmJt2xsU_4s > > >

India flag
Sales of pelvic surgical mesh for women could be stopped in India after US ban
The US FDA stopped the sale of the surgical mesh, used to treat the abnormal descent of the pelvis in women, due to a rise in adverse complaints.
HIMANI CHANDNA Updated: 20 April, 2019 3:13 pm IST - To read full article please view the link below:
theprint.in/india/governance/sales-of-pelvic-surgical-mesh-for-women-could-be-stopped-in-india-after-us-ban/223548/ > > >

India flag
After J&J implant row, govt plans to hire 750 officers to regulate medical devices Plan is to hire these officers, who will exclusively regulate sale of medical devices such as coronary stents &hip implants, through a written exam conducted by UPSC.
HIMANI CHANDNA Updated:17 April, 2019 - To read full article please view the link below:
theprint.in/india/governance/after-jj-implant-row-govt-plans-to-hire-750-officers-to-regulate-medical-devices/222442/ > > >

The World Petition
The World 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 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.

TVT MUM Petition
If the full petition does not show/load correctly on your screen, please click on 'Read Petition' located as per red circle on above image.
Please share and sign the online world petition, thank you.
www.thepetitionsite.com/1/an-urgent-review-is-required-on-the-medical-devices-tvt-tvto-tot-and-the-use-of-mesh-graft-for/ > > >

Social Media Twitter
To view more updates please visit our Twitter feed https://twitter.com/TVTMum > > >

UK News
Do you have any news, or something you would like to share for the May 2019 Edition?
Full credit given to all contributors
We would love to hear from you!
Email: contact@tvt-messed-up-mesh.org.uk

Date: 26 April 2019
News for the Mesh Injured Community, you'll find all the latest news on the link below, if you can't access the PDF we're uploading the text format onto the website soon, thank you for your patience.

TVT MUM newsletter April 2019

Format PDF: www.tvt-messed-up-mesh.org.uk/APRIL-2019-TVT-MUM-NEWS.pdf

Date: 15 March 2019

The Independent Medicines & Medical Devices Safety Review
Written evidence and video oral hearings submitted to the Independent Medicines & Medical Devices Safety Review (IMMDSreview) Hormone Pregnancy Tests, Sodium Volporate, Synthetic Mesh Implant Medical Devices (SUI, POP and Hernia) plus from Clinical and Medical Device Regulator Organisations, and also Manufacturers.
Please visit this link to view on the IMMDSreview website: www.immdsreview.org.uk/Evidence.html > > >

House of Lords - EXTRACT - Baroness Cumberlege Speech
Thursday 28 February 2019 Meeting started at 11.05am, ended 4.19pm
The Lords said that 'Women couldn't have given informed consent' and 'Women should be given adequate compensation'
Please visit this link to view the House of Lords parliamentlive.tv video: https://parliamentlive.tv/event/index/5b638ee7-6cd6-41d4-8273-24c8f9525311?in=13:50:29&out=13:59:41 > > >

UK Parliament House of Lords Hansard
Safety of Medicines and Medical Devices
28 February 2019
Lord O’Shaughnessy
That this House takes note of the steps being taken to improve the safety of medicines and medical devices.
My Lords, I am delighted to be able to lead this debate today. I thank all noble Lords who will speak in it and wish the noble Lord, Lord Carrington, the best of luck in delivering his maiden speech—an auspicious occasion that we are all looking forward to.
Please read the full motion hansard.parliament.uk/Lords/2019-02-28/debates/5C15EA5D-06A3-4F43-90BE-A3FBE6225E54/SafetyOfMedicinesAndMedicalDevices > > >

Eastern Daily Press
Date: 28 February 2019
Health secretary Matt Hancock visits Norwich
The health secretary Matt Hancock visited Norwich on Thursday to speak to women affected by the surgical mesh scandal.
Mr Hancock said: "Hearing firsthand the stories of women who had been badly affected by surgical mesh implants is harrowing and lengths they have gone to try and identify the problem and try to have it fixed are extraordinary, this is a very significant problem we need to get to the bottom of."
To read the full press article: www.edp24.co.uk/news/health/health-secretary-matt-hancock-visits-norwich-1-5911957 > > >

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