The Voices Today on Messed up Mesh (TVT Mum)
Concern - Misrepresented on the word "Tape" used for the product TVT
TVT stands for Trans-vaginal Tension Free Tape or Tension Free Vaginal Tape. My argument is I feel the product is misrepresented by using the word "tape" I feel it should have the correct labelling saying it is Polypropylene Synthetic Mesh Tape. Yes I agree it does look like a piece of tape but to many people I have spoken to they were under the assumption tape means a piece of woven tape, not one of us was told it was a piece of plastic made of Polypropylene mesh. It appears the manufacturer is deceiving us on misrepresention on this product TVT as just a tape when in fact it is polypropylene synthetic mesh. I would like to hear other people's comments on this as I feel it needs addressing as soon as possible
Question - Can I see my Medical Records?
Accessing Your Medical Records
Under the Data Protection Act 1998, you have a legal right to access your health records. If you want to see your health records you don't have to give a reason for wanting to see your records. For full details on how to access your medical records please visit the NHS webpage:-
Question - Is there a Helpline as I need help?
No there is not anything from the NHS! I tried to ask for an urgent telephone support helpline through my urologist. I was told he cannot help and would not even direct me to someone who I can approach to help on setting one up. The only support and help at this time is through TVT Mum website. We have volunteer counsellors who are sufferers themselves ready to take your calls they will give you their listening ear, support and advice. We are all suffering together and this is adding huge pressure on us to cope with demand for this service. The NHS should be providing this service and we want to hear asap if they can help us. For a list of counsellors please contact us.
Question - Are you a registered charity?
TVT Mum has a Small Charity Status
The charity commission has a policy for small charities who have an income under £5000 and states small charities do not need a registration number. This doesn't mean it can't be a charity though. A small charitable organisation with an income that does not exceed £5,000 can enjoy the benefits of charitable status without having to meet the regulatory requirements of registered charities.
As quoted on the Charity Commission website:- A small charity can apply directly to Her Majesty's Revenue and Customs (HMRC) for tax relief. Like a registered charity number, an HMRC charity number should be accepted by banks and grant funders as evidence of your charitable status.
For more information showing on the Charity Commission website please visit this link:- www.charity-commission.gov.uk/ >>>
TVT Mum is a member of the NCVO - the National Council for Voluntary Organisations - there aims are to give a shared voice to voluntary organisations and to help them achieve the highest standards of practice and effectiveness in all areas of their work. Website: http://www.ncvo-vol.org.uk/
Question - Do you have a newsletter?
Keeping you in the Loop - TVT Mum will try to do a monthly newsletter to keep you up to date on any news related to our campaign to get the mesh off the market or at least get the TVT Medical Device off the market and any other latest news ie: help from experts, etc. If you do not want a monthly newsletter you can unsubscribed at any time. Newsletters are only supplied to members who register with us. Please let us know how you wish the newsletter to be sent either by postal service or email.
Question - Strange isn't it that no one has heard of this before and nothing in the Media?
Wondering why you have never heard of this before? You may be wondering "how come this is not in the Media?" or "Why has no one heard about this mesh?" basically my thoughts are - when you consider the facts involved with mesh and the many people harmed is it any wonder it is not in the media. Imagine the embarrassment and uproar it would cause especially to the Governing bodies who are supposed to be protecting us and allowed this product on the market. My feelings are the media will not touch it as they are told not too for fear of being sued or told to be quiet. This is still an ongoing debate and one day it will get out.
It is up to the Governing Bodies MHRA, NICE and the NHS to get this investigated and pull these medical devices harming thousands off the market. We cannot sit here and allow this to happen. All the people suffering are desperately searching to get help to remove the mesh from their bodies causing significant damage and affecting our quality of life. To get this stuff out of us involves multiple surgeries and causing genital mutilation. We need to STOP this happening to others. Please read more in our latest news
An article on stress incontinence has been published in the womans weekly magazine dated 18th January 2011. It has been submitted to us by a lovely TVT Mum supporter, many thanks kind friend for keeping a watch out and like you say it makes it sound very non complicated and risk free! To everyone this is a must read article.
Here is the article showing in the magazine >>> Womans Weekly Magazine Article Stress Incontinence - Click on image to view larger image
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".
For more information on our petition please visit here www.tvt-messed-up-mesh.org.uk/petitions.html >>>
Navigation links within the TVT Mum website
Advice and Help Guide on TVT, TVT-Secur,TVT-O and TOT Tape/Mesh Medical Devices | Alernative Treatments for Stress Urinary Incontinence (SUI) and Prolapse (POP) | Men's Health | Mesh Related Complications | Mesh Unexplained Symptoms | Mesh Surgery Experiences | Mesh Removal Stories | Synthetic Mesh Other Nasty Products | TVT, TVT-Secur, TVT-O and TOT, Medical Devices | TransObturator Tape (TvT-O and TOT) Medical Devices | TVT Medical Terminology