The History of TVT Messed up Mesh (TVT MUM) Year 2008 to 2015
I have been working on computers since the 1980’s and thought to use my office skills and research on TVT/Mesh medical devices. We have a huge database of research with only a fraction showing on our website.
I had the Transvaginal Tension Free Tape (known as TVT) surgery in October 2005. If you would like to read my story it’s showing on the website and on the message board.
I discovered I had a TVT Mesh problem in July 2008, when I seen my GP she could clearly see the blue plastic coming through the vaginal wall she was horrified at seeing it. There is a problem with GP’s not listening or understanding mesh complications, and it does appear this is an ongoing problem today.
I decided to set up a website and support group for the UK in May 2009.
It was fierce work in the early years to read so much information, consoling one another, networking and trying to get the word out on mesh implants.
During the following years whilst in very ill health I was determined to have something available for all the mesh injured women. It was and still is extremely difficult work to keep going.
Year 2009 Since the year 2009 I had to evaluate running a charity, and did an enormous amount of reading to ensure things run as smoothly as possible. We have two trustees Hayley and Maureen.
I started to design the website and everything you see is my own work. I uploaded as much information as I could onto the website at the time, in the beginning of our venture there were only 10 members and today we have a hundreds.
The website was launched in May 2009 it has grown considerably over the years.
A message board was designed and provides forums for everyone to post and reply to each other. No postings are showing in any search engine, we try and keep the message board as private as possible. The message board is really good for members to share their stories and experiences plus to view updates on any news.
This was the year the Campaign work commenced.
I found the Medicines and Healthcare Regulatory Agency (MHRA) website and realized this is where we need to contact and complete our adverse event report. They are the ones who have allowed the mesh medical devices onto the market.
I was in constant contact with the MHRA and they gave me something to put on the website: This was the MHRA’s advice - I would like to clarify that the MHRA only regulates medical devices and has no control over the actions of healthcare professionals. Your allegations appear to be primarily directed towards the surgeons implanting these devices. I would like to suggest that you should pursue your complaint directly with the Medical Director of the individual hospitals concerned. The number of reports received by the MHRA where complications could be attributed to the device itself have been very low.
This is when I thought I can’t be the only one! I was determined more than ever to get the word out to see if there are more of us harmed.
During this year I also produced Support Group Newsletters, constantly updating the website and message board, with regular contact with the MHRA.
More and more women are coming forward for help, advice and support.
Also during this year 2010 TVT Mum became a member of the National Council for Voluntary Organisations.
I started to produce my own Video’s for YouTube, and there were more new web-pages including feedback from the mesh injured, with regular latest news items.
Also during this year 2010 I was still involved in trying to help Lana in the USA with various items.
My first mesh removal surgery - I had partial mesh removal surgery. Before I went into hospital I was expecting the mesh to be removed in its entirety but the surgeon decided to only take out the eroded infected part of the mesh.
I started to work on my document for the Prime Minister it took months and months to prepare where I added every concern I could think of at the time regarding TVT, TVT-Secur,TVTO & TOT Medical Devices and Flat Graft Surgical Mesh used for Prolapse and Hernias. The document was the start of all the current investigations and is in the hands of hundreds of experts within the medical world, regulatory bodies and the legal system around the United Kingdom.
I continued during this year 2011 to write more articles and also created the online petition on 23rd January 2011 and it’s still open today. The Government and Parliament is responsible if the petition gets at least 100,000 signatures, the petition will be considered for debate in the House of Commons. To achieve this target will take many years but it’s also a good place for everyone to see the signatory comments with their stories and experiences.
During this year 2011 the MHRA have launched an investigation. Full details are on the website.
Also Our Medical Condition is recognized as a 'Hidden Disability' 'Chronic TVT/Mesh Implant Inflammation'. Details are on the website.
We had a very successful Fundraising Events, details on the website.
We have Online and Hardcopy Petition signatures, I haven’t had time to tally up all the signatures but it looks like the full total with the online and hardcopies has reached the 2,000 mark at this time.
This was an extremely busy year!
12th January 2012
The document to the Prime Minister and Health Secretary was sent in the post.
Urgent Review on TVT, TVT-Secur,TVTO & TOT Medical Devices and Flat Surgical Mesh used for Prolapse and Hernias
Sent to: The Rt Hon David Cameron MP, Prime Minister - 10 Downing Street, London
Andrew Lansley CBE MP Member of Parliament for South Cambridgeshire Secretary of State for Health
The Department of Health replied
We received a four page letter from the Department of Health answering all the concerns within the document sent to the Prime Minister. TVT Mum is mentioned in the DH letter - 'Websites such as TVT-MUM can also help to increase awareness. The recent increased awareness of this problem is resulting in an increase in the number of reports, helping the MHRA with their assessment'
Email received from the MHRA
In February 2012, the MHRA commissioned an independent review of all current and up-to-date evidence on the use and potential problems associated with both vaginal tapes and mesh for stress urinary incontinence and pelvic organ prolapse. This is expected shortly. We will publish the findings of this research as quickly as possible so that surgeons and doctors can give the best information possible to patients about the benefits and risks of this type of surgery.
21st February 2012
Trustee profiles and TVT Messed up Mesh known as TVT Mum non-profit voluntary organization and support group is registered as a small charity with the HM Revenue & Customs registration number XT32413
20th March 2012
TVT Mum is offered a Meeting with the MHRA The Prime Minister document was passed to Dr Susanne Ludgate BSc (Hons) MB ChB DMRT FRCR FRACR Clinical Director, Devices at the Medicines and Healthcare products Regulatory Agency (MHRA)
5th April 2012
Email sent to the MHRA from TVT Mum I asked - Can they MHRA issue a medical device alert on Vaginal Tape/Mesh? They responded:
On 18th April 2012 - We are not considering issuing a Medical Device Alert on vaginal tapes and mesh as we do not have enough evidence to indicate the problem is with the mesh devices being unsafe, as opposed to a failure of the surgical procedural involved in implanting them. Although as you are aware we continue to review this situation and to investigate all incidents and clinical evidence with the tape and mesh manufacturers.
12th April 2012
All day Group Meet for a possible Documentary, we tried to do a documentary for three students to go towards their journalist degree. Unfortunately after spending a whole day they lost the film!
24th May 2012
I was contacted again by the students and they decided they only wanted to do another with myself for their documentary, I have a copy on CD, and they achieved a high pass for their journalist degree.
30th May 2012
My second mesh removal surgery - I went into hospital on the 30th May 2012 for my TVT mesh to be fully removed with a modified colposuspension with dissolvable stitches.
21st June 2012
Email from the MHRA – Dr Suzanne Ludgate
I thought you would also like to be kept up to date with what is happening at this end. As you know one of our frustrations as Regulator is that we often cannot help many patients such as yourself with clinical symptoms and problems because we are not clinicians and essentially these queries and issues need to be fed back to the doctors responsible.
One of our experts is bringing this up with his Professional Body to ensure for the future there is some mechanism in place where patients can phone in/contact to have their queries answered or indeed be directed to the appropriate person.
I think this is the first time that I have ever known such an initiative to happen so congratulations to you for pushing this forward.
Email from the MHRA – Dr Suzanne Ludgate
I attach some leaflets that have just been prepared at our instigation by the British Society of Urogynaecology with reference to the various operations involving meshes. It is intended that these are given to patients prior to their operation so that they have the facts and figures for an informed discussion with their surgeon.
24 September 2012
Abstract from the email.. Dr Suzanne Ludgate
It seems as though I am sure from your end that moving forward is not happening quickly enough. I thought I should write and tell you however that what we have started is now becoming a very much bigger project and one with which I am sure you would approve.
We are bringing the Professional Bodies and the Department of Health and Commissioning Board are all anxious now to work together on this issue which they see as a major initiative and we will be having a meeting in the near future with all parties to discuss how to take this forward. I really feel that this is an excellent outcome although it has taken a long time because it means that it has been recognised by all parties that this is a topic that they need to address. Congratulations on your persistence.
9th October 2012
News from the MHRA – Dr Suzanne Ludgate
This is just to let you know that there was a very successful meeting the other day between one of the new Commissioners, representatives of the Professional Bodies and Royal College of Obstetricians and Gynaecologists, the Department of Health and MHRA concerning the above. This took into account the concerns of patients about these devices which were openly discussed.
I hope that you will recognise that you and your organisation have done a tremendous job in bringing about raising the profile of this important issue and bringing about changes in practice.
25th October 2012
The Telegraph and the BMJ started their Faulty medical implants investigation:
All articles are in one place on the TVT Mum website.
There are FIFTEEN articles and videos to watch, The MHRA Statement and the European Commission Revision of the medical device directives.
During this year 2012 there was a lot of campaign work in the USA and Worldwide support groups are starting to form and today you will find many to join and visit.
Also in 2012 - Johnson & Johnson (JNJ:US)’s Ethicon unit told a federal judge in West Virginia it intends to stop selling four vaginal mesh implants after being sued by more than 600 women who say the products caused internal injuries.
And also in 2012 there was a Press release from the Department of Health Better guidance and support for NHS surgeons on vaginal tape and mesh implants.
The MHRA press release on their investigations on Vaginal Meshes
YORK Health Economics CONSORTIUM
Providing Consultancy & Research in Health Economics
MEDICINES AND HEALTHCARE PRODUCTS REGULATORY AGENCY
Summaries of the Safety/Adverse Effects of Vaginal Tapes/Slings/Meshes for Stress Urinary Incontinence and Prolapse.
To read more on the timeline of events during the year 2012 with additional links please visit this link Timeline of events 2012
December 2012 – I decided to have a nice long rest!
After an exhausting year 2012 I decided during this year to have more time with my family, rest, recover and heal from surgery and also I moved home.
Scotland start their own campaign as the laws are different to the UK. After discussion with Elaine I mentioned they should do their own campaign and was able to help them with some preparation for their visit to the Scottish Parliament to meet with Alex Neil. The Scottish campaign continues today.
Scotland Sunday Mail Transvaginal Mesh Campaign Articles And Scottish Mesh Survivors ‘Hear our Voice’ Campaign
4th October 2013
New Clinical Guidelines from NICE National Institute for Health and Care Excellence
This guideline updates and replaces the previous NICE guidance on urinary incontinence in women: NICE clinical guideline 40 (published October 2006).
The management of urinary incontinence in women
Issued: September 2013
NICE clinical guideline 171
Direct link as below to NICE Website to view Clinical Guidelines CG71:
After nearly two years to recover and heal from my full mesh removal surgery I found myself a job and determined to bring back my emotional and physical health. I have accepted my health will never be the same as I was before the surgery.
We had a TVT/Mesh Support Group Meet and Greet
Location: The Manor House Golf Club, Castle Combe.
In July 2014 NHS England confirmed Lorraine Evans and Hayley Martin are appointed to the working group as Patient and Public Voice (PPV) Members, full details are on the website. Plus we had our first NHS England working group meeting in London.
22 August 2014
Lana Keeton contacted me to say she is visiting the FDA in the USA, and she needed a supporting article from TVT Mum
Subject: Synthetic Mesh Medical Devices used for the Surgical Treatment of Stress Urinary Incontinence, Prolapse and Hernias
25th October 2014
Support Group Meet up
Location: St. Joseph’s Church Hall, Aldershot, Hants, GU11 3JB
3rd November 2014
We have another NHS England working group meeting in London.
Year 2015 more history arriving soon, thank you for your patience.
Most days we continue with the helpline via telephone and email, preparing reports, updating the latest news, maintaining the website and message board, organizing support group meet-ups and attending the NHS England Meetings.
We have waited years to get this far in our campaign work and it will take many more years to bring everything to the forefront on the true devastation caused by synthetic mesh implant medical devices.
We trust this gives everyone a small insight into the enormous amount of work carried out throughout the past years.
Thank you everyone for all your support over the years.
Founder and Chair to Trustees
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