Latest News for TVT Mum
10th July 2010
Unfortunately the NCVO organization is not what we are looking for. Apparantly they do not support voluntary organizations that help individuals. We will continue to carry on with our charity run by volunteers.
Good news today, we have launched the new message board, please visit here to register. All members will have to submit a full registration form supplied through the TVT Mum information pack.
21st June 2010
Please refer to the latest news dated 10th July 2010. TVT Mum is a member of the National Council for Voluntary Organisations. Giving voice and support to civil society.
18 June 2010 - News from the Mhra
From the MHRA Publication of new enforcement strategy 2010
Abstract: The document sets out the MHRA strategy for the enforcement of medicines and medical devices legislation. It reflects Government Better Regulation initiatives, as well as the recommendations contained in the Hampton Review (external link), and the Regulators' Compliance Code (external link), which set out the principles and characteristics to be applied in the enforcement of regulations. View here the Enforcement Strategy 2010 details and download the full pdf document to read all information.
14th June 2010
Agenda: The Committee on the Public Health Effectiveness of the FDA 510(k) Clearance Process will hold a public workshop on June 14-15, 2010 in Washington, DC. The purpose of the workshop is for the committee to gather information related to the statement of task. YOU CAN HEAR STORIES FROM SUFFERERS AT TRUTH IN MEDICINE - USA Showing on our website. Institute of Medicine >>>
9 June 2010 - New Webpage added
New webpage TO ALL SUFFERERS FROM MEDICAL DEVICES HERE IS THE ADVICE FROM THE MHRA - Medicines and Healthcare products Regulatory Agency showing on our website >>>
9 June 2010 - Time is a great factor, the truth will be revealed, we will wait, watch and see things unfold before our very eyes.....
Hospitals To Be Hit Over Readmissions. Hospitals will not be given funding to treat patients who are readmitted within a month of being discharged, Health Secretary Andrew Lansley has said. Report by Rob Cole, Sky News Online
9 June 2010 - Time is a great factor, the truth will be revealed, we will wait, watch and see things unfold before our very eyes....
Health Secretary Andrew Lansley mentions Hospitals to face financial penalties for readmissions By Michelle Roberts Health reporter, BBC News
16 May 2010 - MAY NEWSLETTER
You can view the May Newsletter here >>>
12 May 2010 - URGENT NOTICE
TVT Mum heard about this editorial showing in the Bristol Evening Post, Help Offered Column today which had NO Authorization from us, thankfully we were told and had to put this immediate notice out >>>
8 MAY 2010 - BREAKTHROUGH NEWS
Latest News from the MHRA investigation....Reply received..
TVT Mum has received a reply today from the MHRA. To all Members and anyone affected with complications including mesh erosion associated with polypropylene synthetic mesh used in Medical Devices please adhere to the MHRA advice with TVT Mum response as outlined below..
MHRA response and 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. MHRA will investigate adverse reports that are reported to us and I would encourage women who have had device related adverse incidents to report these
via our website at
www.mhra.gov.uk/Safetyinformation/Reportingsafetyproblems/Devices/index.htm
The MHRA intends to seek further advice from experts on this issue as part of our investigation.
Whilst investigating this issue, I have come across a document published by NICE (National Institute for Clinical Excellence) which provides patients with guidance on various treatment options. It also highlights some important questions that could be asked of the clinician, in order to obtain a clear picture of the procedure recommended by that particular clinician. This document can be found at
www.nice.org.uk/nicemedia/live/10996/30284/30284.pdf
TVT Mum will respond with..
Paragraph 1 - This is good advice from the MHRA to all our members and anyone who is experiencing complications. The issue is not solely on the surgery itself it is also the issue on the use of Polypropylene Synthetic Mesh used in the actual Medical Device that is causing the most suffering. Once this mesh is in us it is known it is in for life. When the mesh erodes which can happen from day 1 up to seven years later it will involve multiple surgeries to get it out of the body. It is an extremely difficult and complicated surgery and as mentioned there are inexperienced surgeons trying to take it out. This is causing great concern and is a growing health problem.
Our message to the NHS please understand we are aware of - There are inexperienced surgeons putting the medical devices into people and also inexperienced surgeons taking the eroding mesh out. There are very few surgeons in the UK who can perform mesh extraction surgery, women are desperately seeking experienced surgeons. If you know of or you are an experienced surgeon please contact TVT Mum immediately as we are hearing from ladies in our group some surgeons have not performed this type of surgery before and making matters worse for the patient. We are sure you will agree this is of great concern. The MHRA has the authority to recall these medical devices for further investigations and we feel they have a duty besides the surgeons to protect the patient.
Paragraph 2 - Again very good advice from the MHRA on the issue concerning reporting adverse reports. Although the MHRA are saying the adverse reports are low we consider 655 people is high although you may not have received all their adverse reports. We are concerned it is not known to the patients around the UK to put in an adverse report to the MHRA, so how can they put in their adverse report when it is not known to do so? As far as we can see it is only through TVT Mum website the women know they have to report to the MHRA. We have people approaching us every week on complications associated with the Polypropylene Synthetic Mesh used in the medical devices plus complications with the actual surgery. Any other suggestions to make it known?
Paragraph 3 - Fantastic news the MHRA are doing an investigation, many thanks.
Paragraph 4 - Very good advice from the MHRA to suggest people to read the PDF link regarding the National Institute of Clinical Excellence (NICE) guidelines to all new patients who are offered the TVT medical device or other medical devices using the Polypropylene Synthetic Mesh will be helpful to new patients to make a decision.
For those who have already had this medical device it is too late as we were not told on the full complications, this is why we are actively seeking help to get experienced surgeons to deal with complications related to mesh erosion and other complications associated with the mesh used in the medical devices and from what we are hearing and being told so far the NHS is failing us. Please visit this link on our website to view complications we are all facing Recognised Complications Associated with the Surgery and from the Mesh
TVT Mum requested a helpline from the NHS but we were declined. As far as we can see and know of TVT Mum is the only helpline available for all sufferers. We need the NHS to help us please.
Our synopsis in brief surrounding the scenario regarding this matter we have concluded the Manufacturer's who are marketing these medical devices using Polypropylene Synthetic Mesh in them and selling them in the UK and Worldwide is at fault for not relaying the full complications associated with the Polypropylene Synthetic Mesh used in the Medical Devices. Our research indicates they are bringing out new specifications to confuse and are trying to say they have improved the medical devices when in fact... All the medical devices still have the MESH in them which is the source of the problem and is causing a growing serious health concern.
It is putting a huge strain on the NHS to deal with the people suffering and also we are sorry to say this but we can see they have blinded all the Governing Bodies to the word Cost instead of Patient Safety. Another issue we feel is important is the misrepresentation of the product. The Manufacturer's are saying the word TAPE on their products when in fact the correct description is Polypropylene Synthetic Mesh Tape, yes it does look like a piece of tape and most people assumed the word tape means a piece of kind and gentle woven tape and not a piece of Mesh with serrated edges which embeds into our tissues and continues to travel if the body rejects it. It is common sense MESH does not belong in the human body and we were not told by our consultants it is MESH with serrated edges and will adhere to our tissues like velcro. I can assure you most of us suffering would never of agreed to having this mesh inside our bodies if were told the truth.
13 May 2010 - UK NEWS
Two more webpages have been added today. TVT Mum in Focus >>> and Have your Say >>>
8 May 2010 - UK NEWS
To All Members
The Message Board has been Deleted
Unfortunately it has come to my attention there was possibly members who are not genuine, sad but true. Please be very cautious on anyone who has previously contacted you. The first contact should always be to Mrs Lorraine Evans who is the founder of TVT Mum website.
It has been very difficult for me to see who was genuine as everyone who has previously contacted me to become a member of TVT Mum I had to trust on words. This is now changing to protect us all by giving out a TVT Mum Information Pack which includes a Registration Form to be completed and returned. I do not want any disruption on our good work to bring awareness on the harms associated with Polypropylene Mesh used in all medical devices.
To protect all of us I took the decision to stop the message board and from this date 8 May 2010 all members who need to contact Lorraine at TVT Mum can do so by email, telephone or post. I will have to look at another way for us all to communicate safely as a group.
I am sorry I had to do this, but I am being very cautious and want your details to be kept private and safe at all times. I have prepared and released a Data Protection form where it states only with your permission your details are to be shared with others this includes if we have found you a reliable and experienced consultant and surgeon; and counsellors who at this present time are Lorraine and Hayley only.
Privacy is paramount to TVT Mum considering the seriousness and delicate situation we are all facing together.
Thank you for your understanding. If you have any concerns about this change please contact me directly, my email address is contact@tvt-messed-up-mesh.org.uk.
24 April 2010 - UK NEWS
In the UK there is one group lawsuit currently ongoing in Liverpool involving 600 patients who received treatment from a surgeon involving the TVT medical device although the case is not solely on the TVT and involves other issues which are not disclosed to protect confidentiality. If you live in the Liverpool area and received surgery from this surgeon George Rowland please contact Mr Ian Cohen of Goodman's Solicitors which is representing most of the women.
More information on the Lawsuit
Blunder surgeon in £10m lawsuit; 100 women patients take him to court. (this figure has substantially increased since the article was published 22 March 2010)
www.dailymail.co.uk/news/article-1259229/Dozens-women-claim-10m-surgeon-George-Rowland-botched-bladder-operations.html
Response from Lorraine - I mentioned this article to my consultant and he said to me "there are inexperienced surgeons putting these medical devices in and also inexperienced surgeons removing the eroding mesh causing more problems to the patient"
There are currently other Lawsuits going on in Canada and the USA.
To this date TVT Mum has received 55 enquiries from patients, this figure is increasing every week who are desperately seeking help and support to find a consultant who can deal with their complications associated with their surgeries. The most common question is "where can I go to get help?"
This article dated for the year 2006 is in the public domain there has been 10 deaths After this year date it is unknown to the public how many more have died. Please read this PDF from the BMJ page 16 BMJ (British Medical Journal) - harms-with-medical-devices-2007
The above is what we have found from doing our own research. What is the true number of people suffering and deaths. Is this hidden?
The MHRA, NICE and the NHS owe us a full investigation on this growing health problem around the UK and Worldwide.
To get this eroding mesh stuff out of our bodies involves multiple surgeries and causing genital mutilation. PLEASE HELP US!
20 July 2009 - USA NEWS
12 July 2009
More articles with valuable information have been posted on the message board. We have also added another article to the website...
Urinary incontinence (UI) and Stress Urinary incontinence (SUI) is any involuntary leakage of urine. It is a common and distressing problem, which may have a profound impact on quality of life. Please read this article showing the Different types of incontinence and possible treatments. This is a microsoft word document, click on this link and a window will open, you can save or open the document to read, then scroll to the bottom of the document to return back to TVT Mum >>>>
29 June 2009
Message Board is now up and running,
Please register on the TVT Message Board - NO LONGER AVAILABLE
PLEASE READ THIS IMPORTANT ARTICLE from the British Medical Journal (BMJ)
Title
Take note those advocating the use of mesh in hernia repairs
Dated 26th June 2009
Abstract - Five years ago I wrote, in addressing the use of mesh in herna repairs, "Inserting an open mesh in a patient is akin to inserting a limpet mine. It may never be hit by a ship but if it is it could sink it. The risk is of infection developing in the mesh latter years during the course of another illness, such as an AP resection which requires the formation of an adjacent colostomy or admission to an ICU for organ dysfunction. In the latter instance the mesh could become an occult nidus of infection that kills the patient"
http://www.bmj.com/cgi/eletters/338/jun23_1/b2321#215740
20 June 2009
We have taken off the message board for the time being. We are asking all members the best way for each other to communicate and share stories etc privately. A suggestion is a live chat facility which can be set up and secure. Let us know your thoughts please or anyone that wishes to join our TVT Mum campaign please contact us
You can contact us by sending a direct email to contact@tvt-messed-up-mesh.org.uk or you can complete our secure contact form, all information gathered is on a secure server to protect your identity.
Please click here >>>>>Contact TVT Mum..
As soon as we receive your email we will respond within 8 hours.
27th May 2009
At last the colour scheme for the website looks good! I am now ready to do the logo, I will add more content once the website colours and logo is finished. I am also doing a slideshow to show all quotes we have heard from sufferers and the medical experts, ie: expert "I've done 600 and no problems" patient "my marriage is ruined" if you have heard of a good one let me know and I will add it. I hope this website will proof valuable to all who are thinking of having the TVT Sling or polypropylene mesh in surgery and for all suffering from any complications post operative.
23rd May 2009
Website tvt-messed-up-meshed.org.uk (TVT Mum) was started on 23rd May 2009 requested by ladies here in the UK suffering complications after having surgery involving the medical device TVT Sling (transvaginal tension free tape) and others including men who have experienced complications with having surgical mesh (prolene) polypropylene mesh for hernia's, prolapse and other bladder and bowel surgeries.
At this present time we do our own extensive research on this area as I was told from a Medical Professional and on good authority "the medical profession is actually very alert to surgical complications and sadly, investment in research into the area is not regarded as a priority by medical research funding bodies, which seriously hampers our ability to get a true handle on the situation".
We use Twitter to help get the word out and will show updates
We use Facebook to help get the word out and will show updates