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April 2015 Newsletter
What's been happening in the United Kingdom?
The Voices Today on Messed up Mesh (TVT Mum)
New website has arrived - Thank you for your patience whilst the work was carried out from September 2014. It was very hard work transferring all the content from the old website onto the new website and we think you'll agree it's a lot more user friendly.
NHS England Working Group
The next NHS England Working Group meeting is on the 27th April 2015. When the Patient and Public Voice (PPV’s) representatives travel to London we’re in the area and is an opportunity for those who are experiencing mesh problems to meet and greet plus it’s nice to have some moral support. If you’re interested please contact us for more information using the online form:
Please press here for the contact us form >>>
To view more information on the NHS England PPV work you can find the details on the message board and on the website:
Please press here to view more information >>>
The One Show BBC Wales Documentary
A researcher for the BBC One’s The One Show is currently looking into the possibility of filming a short item for the show which would explore the concerns regarding tape and mesh implants. If anyone is interested please visit the link below for more information:
Please press here to view more information >>>
24th February 2015
Petitions Committee - Scottish Parliament
The Committee will consider PE1517 by Elaine Holmes and Olive McIlroy, on behalf of the Scottish Mesh Survivors - "Hear Our Voice" campaign, on polypropylene mesh medical devices and take evidence from Dr Neil McGuire, Consultant in Intensive Care and Anaesthesia, Clinical Director Devices, and Sally Mounter, Senior Medical Device Specialist, Biosciences and Implants Devices Division, Medicines and Healthcare Products Regulatory Agency; and then, via videoconference, from Adam M Slater, Mazie Slater Katz & Freeman, LLC. To view video:
Article dated 24th February 2015
Mesh implants 'as dangerous as asbestos' US lawyer tells MSPs
A special thank you to Hayley, Maureen, Belinda, Terry, Lynn and Yvonne for their voluntary help and support to new members at group meetings and on the message board, we would also like to say thank you to the TVT Mum medical expert for valuable advice for the mesh injured and also to everyone within the mesh community thank you for caring for one another you're all absolutely amazing people.
All the best
Founder and Chair to Trustees
August 2014 Newsletter
Have a cuppa in hand before reading our lengthy newsletter this is an important one to read.
During the year 2014 we have worked hard providing emotional support via email, telephone and through the message board. May 2014 we had our first support group meet-up at Castle Combe, Wiltshire. We are currently organizing another meet-up on Saturday 25th October 2014 in Aldershot, Hampshire you can find the details posted on the message board. July 2014 we had our first NHS England working group meeting in London. We have also continued with our research on synthetic meshes for Stress Urinary Incontinence (SUI), Pelvic Organ Prolapse (POP) and Hernias.
NHS England confirmed Lorraine Evans and Hayley Martin are appointed to the working group as Patient and Public Voice (PPV) Members. We’re mesh injured, believe only a mesh sufferer understands a fellow mesh sufferer, and we will prepare and attend the meetings to represent YOU.
The working group has been established by NHS England to address concerns over surgical procedures using devices to treat stress urinary incontinence and pelvic organ prolapse. Membership will be multi-professional and include representatives from: NHS England; Department of Health; Scottish Government; Welsh Assembly Government; Medicines and Healthcare Products Regulatory Agency (MHRA); British Society of Urogynaecology (BSUG); British Association of Urological Surgeons (BAUS); and Royal College of Obstetricians and Gynaecologists (RCOG) and patient support groups. The Northern Ireland Government will be informed of progress.
ABOUT THE ROLE OF THE Patient and Public Voice (PPV) MEMBER NHS England is committed to ensuring that public and patient voices are at the centre of shaping our healthcare services. Every level of our commissioning system needs to be informed by insightful methods of listening to those who use and care about our services. Their views should inform service development. Public and patient voice will be embedded into our commissioning processes in a range of ways, including insight and feedback to shape services, voices in the governance frameworks of our programmes of work, as well as patient and public engagement in our assurance processes.
The first working group meeting took place on Wednesday 16 July at 2.30 in London. All discussions are confidential between the working group and TVT Mum will ensure our side of things is put across effectively.
August 2014 NHS England said they are committed to ensuring that public and patient voices (PPV) are at the centre of shaping our healthcare services. We are PPV representatives and here to represent YOU we would like everyone including support group members, general public, medical professionals, legal professionals, and any other organization interested to participate by submitting any concerns you have to help bring change in practise with synthetic mesh medical devices.
To all those who have had a synthetic mesh implant I think you will agree none of us want anyone to go through this devastating life changing surgery, by making the important decision to submit your concerns this will help pave the way forward to have a reliable medical device regulatory system plus most of us agree we don’t want to confuse medical marketing with Science, we require evidence based medicine.
Presently there’s an emotional support helpline via telephone, email and a message board managed by unpaid volunteers, Lorraine and Hayley go out to work and our time is very limited we often end up dealing with some of the enquiries on our day off and even during holidays. We have given our time voluntary for many years please support us and mention to the NHS England working group we want them to step in and provide the Medical Mesh Helpline.
In June 2014 Alex Neil health secretary in Scotland said ‘I chose to suspend mesh surgery ops because I did not trust official figures’ Do you want to see synthetic mesh surgeries suspended in the UK?
The NHS England working group need to hear what has happened to you and what you feel should be topics for discussion at future meetings. If you are interested in submitting your concerns please send via email: firstname.lastname@example.org. There’s no immediate rush to send and will allow you time for serious thought. If you are in litigation please seek legal advice before sending and also state if you wish to have your identity known or to keep it anonymous.
The TVT Mum organization need office equipment can you help us? A filing cabinet, office chair and stationary we don’t mind second-hand. Thank you.
A special big thank you goes to Hayley, Maureen and John, Denise, and to all our volunteers
To Hayley, thank you for giving your valuable time voluntary as a counsellor to TVT Mum. Whilst you are in poor health you have continued to give support, help and advice to all those needing information and guidance. You’re an amazing and beautiful woman.
To Denise, we rely on our members and volunteers so much, which is why your fantastic donation of £50.00 is very much appreciated. Your wonderful generosity will keep the charity going and the website active, thank you so much.
To Maureen and John, after worrying about not having a printer a much valuable piece of equipment in any office it was the most wonderful news when you rang to say you are purchasing a printer to donate to the charity. Thank you so much for helping TVT Mum this will truly help us to continue with the work.
To all our volunteers to the organization, thank you for keeping the message board running and caring for one another, the help and support you give to each other is absolutely amazing and shows how much the Mesh helpline is needed, we often struggle to find answers to those important questions and thankfully after years of researching we can provide this much needed service, this is why we are here to help each other and to know you’re not alone.
Never give up, we are mesh injured, we want change, we want more help and our voices heard.
Say it as it is straight from your heart!
Thank you for all your support to our cause.
All the best
Founder and Chair to Trustees
Edited on 27th January 2013
Message from Lorraine
Today I have promised myself my life and family come first. I have put in full time voluntary hours for years and years helping all those with TVT's and Mesh problems, I think you will agree I have contributed enough to last a lifetime! I need to get away from the 'mesh mess' it has become far too complicated in more ways than one. I will keep the website live and the private message board is open to all those who need help, advice and support. If you wish to join us please click on the link below:
Stay safe and strong in your mesh journey!
24th January 2012
Thank you for Signing the Petition!
A massive thank you to everyone who has signed our petition this will show the Medicines and Healthcare Regulary Agency (MHRA) we are NOT small in numbers!
Please consider signing our petition including mesh sufferers, their families, friends, colleagues, the general public even the medical world, everyone! We appreciate your support. If you haven't signed please can you sign it on the link below:
To view peoples mesh stories showing on the petition:
To view more information on our Petitions:
Well what a year this has been! To be honest I am still in shock at the ridiculous statements made by Professor Keith Willett and Dr Susanne Ludgate plus the shambolic York Health Economics Consortium Final Report (most of it has been said for years!) After reading the statements I asked myself – Do any of them have children? No-one has mentioned about our beautiful children the innocents in all of this mesh madness. On a personal note - Every single day it breaks my heart seeing my son since the age of 8 years old so traumatized from the loss of his childhood, mother, father, home, school, his confidence and self esteem is shattered he lost his pets and his friends too! Where does it say anything in this sham of a report about the damage done within our families especially those with young children, adults are big enough to look after themselves we must ENSURE whoever put this disgusting mesh on the market are fully aware we are fighting for our children too it’s not just about us as patients we are seeing our children suffer!
Many people actually I will re-phrase that I mean a LARGE number of people (NOT a small number of women as quoted by Dr Susanne Ludgate and incidentally where does it mention the men!) are very disappointed there hasn’t been any help from the Medical World, The Governing Bodies including the MHRA and from the Solicitors concerning the lack of understanding on the TRUE extent of the problem with synthetic meshes. The ridiculous short and quick pull together report which appears to be ghost written by York University is only showing a fraction of the problem, don’t they realise this is on a massive scale - I suspect they do!
To all those who are with us and support our cause in the New Year we are going to organize our own Conference. The venue will be held in Bristol possibly July or September 2013. Thankfully we have several people offering their help to ensure this is going to be a very beneficial and well organized meeting for everyone.
Anyone you know or who you think would like to be an expert speaker ie: Urologist, Gynaecologist, psychologist or anyone professional please can you ask them to contact us for further information. We do understand sometimes guest speakers require their expenses paid ie: travel and time, we are hoping considering we are a charitable organization speakers will give their time free of charge although we will consider paying their fees if reasonable and necessary.
The NEW YEAR 2013 is going to be the year of CHANGE! Let’s pull together because we have had enough of all the complete and utter cover ups and untruths the only way to stop this mesh madness is to keep going and pull together all of us everywhere we must do this in order to see CHANGE. Please do this for our children because since my own full mesh removal I can see clearly now what has been happening in certain areas and circles and above all how my ill health affected my own son’s life too. Absolutely no one does this to my family and I know there are other mums and dads out there who feel exactly the same as me. These are hard hitting words but all so true - All that matters in our lives is family, happiness and love we can’t fully have contentment without our health too! It’s about time the Medical World faced the true facts on synthetic meshes because some children have no mother and father to play with them on Christmas Day because of all the pain and suffering from synthetic meshes it’s hard to believe also some people have lost their lives through synthetic meshes too! So please STOP the mesh madness and let’s pull together and sort this mess out once and for all.
Thank you for reading my letter I hope this gives a little insight for new things to happen in the New Year.
Wishing you all a lovely Christmas
Message to all our new members
I have worked voluntary near on full time every day for years developing the charity organisation. During this time I have helped hundreds of women in our support group and also done and still doing a lot of research, chasing up the experts, the regulatory bodies and the legal side of things. It entails writing numerous letters, telephone calls, meetings and emails and has helped move things forward in the UK today! Through sheer hard work, persistence and dedication to the cause most people understand things don’t happen over-night it takes years of striving to ensure progression.
I couldn’t have coped with all the enquiries through email, telephone and the message board without the help from our dear friend Hayley a mesh sufferer. We receive daily telephone calls and emails averaging 20 a day and to reply to each email can sometimes take up to an hour of our time also if both of us are unavailable on that day it takes more time to catch up to speed. Thank you for understanding.
The three areas within our organisation:
- Awareness campaign
- Global news
Our organisation is very active providing information and a support helpline, we bring Global news including what is happening in the legal world, medical device regulations, patients stories and lot's more, we are also involved in trying to bring changes to practise plus trying to get the synthetic TVT Meshes removed from the market.
The awareness campaign work is totally separate from the support group no information on any of our members is ever disclosed to third parties including the MHRA, the Solicitors, Medical Professionals and any other entity. We fully respect data and always keep it private and confidential.
Can you help us?
To be part of the TVT/Mesh support helpline we only allow experienced and qualified counsellors to give private one to one help, advice and support to the members.
- Support by caring and sharing on the Message board
- Designers - Leaflets, Flyers
- Designers - Get well, thank you, cards
- Designers - TVT Mesh information leaflet/small booklet
- Social media networking
- Person to run the eBay charity shop
- Advertising and Promotion
- Press and Media
- Power-point presentations
We have a very kind lady making hand-made awareness products these items are available next year. We need funding for stationary, advertising, awareness products, telephone and for keeping the online chat and website live and active. Everyone who joins us as a volunteer give their time free and unpaid, even an hour of your time will help us. You may have suggestions to improve the charity please can you let us know your thoughts because we really want everyone involved in our work.
If you would like to be involved please let us know a little about yourself, your experience and skills. This area will be discussed at our first AGM meeting in February 2013 and everyone in our support group is invited, the details will be sent out mid December 2012.
All fundraisers can have their profile and event on the main website
Fundraisers a good link to view:
We are registered with BTmydonate
You can fundraise, sponsor a fundraiser and donate through BT
TVT Mum Profile:
BT fundraising link:
TVT Mum is registered as an eBay charity shop
TVT Mum Profile:
We already have some items for sale and always need more. Can you help? You can buy, sell and donate through eBay. Support our charity whilst doing what you do every-day on your own eBay. Simply select a charity when listing an item and choose to donate between 10-100% of your final selling price.
Full apologies to those who have sent personal emails there is quite a delay to answer you all. If you need a quick response the best way is to telephone. Priority is always given to our support group members. Lorraine and Hayley try to answer emails as quickly as possible, thank you so much for understanding.
New information on days and hours available and more:
Contact us >>>
Timeline of Events for the Year 2012:
Surgical Mesh Listings, The Manufacturers and updates on Worldwide Mesh Litigation:
The Telegraph and the BMJ
Faulty medical implants investigation
Latest News and Updates
Date: 28th October 2012
TWO new videos on the TVT Mum YouTube Channel:
1. TVT Mum - Awareness and Campaign Jan-Oct 2012
2. NEW Edited Version - TVT Mum Support Group - Film and TVT/Mesh Stories
To view videos:
25th October 2012
To view all the latest news from Worldwide Campaigners and Support Groups:
Press and Media
United Kingdom: www.tvt-messed-up-mesh.org.uk/press-uk.html >>>
Global: www.tvt-messed-up-mesh.org.uk/press-worldwide.html >>>
Phew there has been a lot going on this year! Thank you for all your support to our cause.
All the best
Founder and Chair to Trustees
TVT Messed up Mesh (TVT Mum)
Support Group Message Board: tvt-messed-up-mesh.org.uk/phpbb/
To request previous newsletters please contact us:
Contact us >>>
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".