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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!

NHS England NHS England Patient and Public Voice (PPV) Representatives

Updated: 25 July 2017

NHS England confirmed Lorraine Evans and Hayley Martin are appointed to the working group as Patient and Public Voice (PPV) Representatives

Lorraine in London February 2015The 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 2014 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.


Date: 25 July 2017
Please scroll down the page to read the latest important news
The NHS England Report by the Mesh Oversight Group
Published 25 July 2017

Advisable to read this link first www.england.nhs.uk/ourwork/qual-clin-lead/mesh/ > > >
Please scroll down the page to read the lastest important news from the NHS and some pointers within the The NHS England Report by the Mesh Oversight Group. NHS England mesh oversight group

NHS England Report published 25 July 2017 Foreward by Professor Keith Willett - It is right and proper for those who deliver, lead and regulate health care to listen to patients' concerns and work with all parties to resolve them. A programme of work was initiated in response to concerns from women who developed complications following surgery using vaginal mesh devices to treat stress urinary incontinence (SUI) and treat pelvic organ prolapse (POP These women felt their concerns had been ignored. I recognised there were issues to be addressed.

I previously chaired the Mesh Working Group which explored the issues with patients and made recommendations to the system in its interim report. I also chaired the Mesh Oversight Group to oversee implementation of those recommendations by the responsible bodies, as described in this final report. To read more from Professor Willet and the the full report please visit the link below:
www.england.nhs.uk/publication/mesh-oversight-group-report/ > > >

The British Association of Urological Surgeons (BAUS)
Available Centres and Contacts for Review of Mesh Complications - A number of Trusts have agreed to see women with significant mesh problems after Stress Urinary Incontinence (SUI) and Pelvic Organ Prolapse (POP) surgery.
NHS England multidisciplinary teams in the UK
To read more and to view the list of Multidisciplinary teams in and around the UK please visit the link below:
www.baus.org.uk/patients/sui_mesh_complications.aspx > > >

British Society of Urogynaecology (BSUG)
Information for Patients including NHS Leaflets plus the Named Units being able to see and treat women with mesh related problems - The following units (the website mentions you can downlod the PDF here) have agreed that they are happy to see women who have significant mesh problems following incontinence or prolapse surgery where mesh was inserted.
Support for women with post-operative problems
The PDF document from BSUG includes Hospital unit address, clinical lead and members of the Mutidisciplinary (MDT) team in and around the UK.
To read more please visit the link below:
http://bsug.org.uk/pages/information-for-patients/111 > > >

Mesh resource for General Practitioners (GPs) Page 47 within the report
mesh resource for general practitionors
To view the full report including resource for GPs please visit the link below:
Information for Health Professionals on Mesh Implants
Document first published:25 July 2017
www.england.nhs.uk/publication/information-for-health-professionals-on-mesh-implants/ > > >

MHRA Reporting Adverse Incidents
Patients mesh related complications - Raising patient's awareness of self-reporting adverse incidents to MHRA
MHRA reporting adverse incidents by the Yellow card system
Please report mesh complications adverse incidents on the MHRA website: https://yellowcard.mhra.gov.uk/ > > >

More News to reach us at a later date
The NHS England Mesh Oversight Group work is not finished - There's more News arriving at a later date:
1. National Institute of Clinical Excellence (NICE) as mentioned in the report - The future - The combined SUI and POP guideline is planned for publication in 2019. NICE guidelines are reviewed on a regular basis, at intervals that are influenced by the publication of new evidence and the capacity of the guidelines programme.

2. Developing a Registry - The future - The registries subgroup will continue to meet to consider the best way to capture accurate data on the use of mesh and mesh complications. The sub group will report on its findings and make recommendations by November 2017, the original date for publication of this Oversight Groups final report.

3. Medicines Health and Regulatory Agency (MHRA) Improving rates of reporting - future - The effects of this drive on reporting should be seen as MHRA data is released on reporting rates. MHRA will continue to evaluate ways to raise awareness of the yellow card system. Reporting will become common practice as an essential component of self-declared mesh complication treatment centres and eventually specialist commissioning arrangements.

4. Multidisciplinary Teams in and around the UK - The NHS England work continues in other areas of concern as discussed on 25 July 2017 and is under consideration.

Date: 3 December 2016
Update from the NHS England Mesh Working Group
Sharing with all, as soon as I have more information I'll update soonest. Lorraine
Email received from the NHS England Mesh Working Group dated 25 November 2016, the email was signed: High quality care for all, now and for future generations
Content of the email:
The last Mesh Oversight Meeting took place in October and I anticipate that the minutes will be sent to you in the next week. Thank you very much to those of you who took the time to send your feedback for standing members. MHRA (Medicines, Healthcare and Regulatory Agency) have asked if we could share the contact details of associate members with them because they would like to send information regarding mesh that you may wish to disseminate to members of your organisations.

Date: 11 August 2016
NHS England Mesh Oversight Meeting held on 19 July 2016
The oversight group was formed to review the NHS England Mesh Working Group Interim Report published on the NHS England website.
To access the Report, click on the link below:
https://www.england.nhs.uk/ourwork/qual-clin-lead/mesh/

Confirming the minutes of the meeting received from the Oversight Group.
The meeting objective
The chair stated that our purpose is to close the knowledge gap and improve patient outcomes. Another main objective is to ensure that lead organisations hold each other to account in delivering actions and making progress on the recommendations listed in the MESH interim report. The Chair suggested the group meet more frequently initially to ensure that we maintain focus on implementing recommendations. Next meeting to be held on 19th October 2016

Thank you to all patient groups and NHS England for your continued work, care and support to the cause.

Date: 3 December 2015

Mesh working group

For many women suffering the distressing effects of stress urinary incontinence (SUI) and Pelvic Organ Prolapse (POP), surgical procedures using mesh devices have provided an effective form of treatment which can be far less invasive than alternative surgical procedures. However, the safety and efficacy of surgery for SUI and POP using mesh devices is being questioned by a community of patients and clinicians.

NHS England set up the Mesh Working Group to address these concerns. The Working Group has now produced its Interim Report.

The Report will explain the context in which this work has been undertaken, present the debate surrounding ongoing use of mesh and set out recommendations for the activity necessary to optimise care for women undergoing treatment for SUI and POP.

To view the full Report in PDF please click on the direct link below:
https://www.england.nhs.uk/ourwork/qual-clin-lead/mesh/

Please see below meeting dates with more arriving throughout the year 2015 and 2016.

NHS England Full Working Group Face to Face Meetings in London:
All the meetings are chaired by Professor Keith Willett
16th July 2014 - Attended meeting - Minutes of the meeting received
3rd November 2014 (unfortunately Lorraine and Hayley couldn't make this date in London due to ill health) - Minutes of the meeting received
2nd February 2015 - Attended meeting - Minutes of the meeting received
27th April 2015 - Attended meeting - Minutes of the meeting received
23rd June 2015 - Attended meeting - sub working groups recommendations submitted and also the Minutes of the meeting received
19th August 2015 - Attended meeting - sub working group recommendations to be submitted
24 August - September 2015 - Awaiting minutes of the meeting from 19 August and also we send regular correspondence via email and telephone
October and November 2015 - Final Draft received on NHS England Mesh Working Group Interim Report October 2015 - Currently reading with more email correspondence throughout October and November until the next NHS England full working group meeting in London TBA
3 December 2015 - NHS England Mesh Working Group Report - https://www.england.nhs.uk/ourwork/qual-clin-lead/mesh/
PLUS
NHS England Sub Working Group Teleconference's:
2nd December 2014 - Teleconference and corresponding via email
10th December 2014 - Teleconference and corresponding via email
8th January 2015 - Teleconference and corresponding via email plus TVT Mum proposal has been submitted
28th January 2015 - Teleconference and corresponding via email
5th February 2015 - Teleconference and corresponding via email
24th February 2015 - Teleconference and corresponding via email
March 2015 - Corresponding via email
15th April - Teleconference and corresponding via email
May 2015 - Corresponding via email
18th June 2015 - Teleconference and corresponding via email
16th July 2015 - Teleconference cancelled not needed this month only corresponding via email
August 2015 - Corresponding via email - Recommendations finalized for submission on 19th August for the NHS England full working group meeting (see dates as above)

Date: 3 December 2015

Message from NHS England Mesh Working Group
'Thank you all once again for your hard work and support of this process that has allowed us to reach the point of making these interim recommendations.'

Next Stage for NHS England Mesh Working Group
There's still much work to be done - TVT Mum have put forward more questions. This is a response snippet from NHS England - 'Many of these points will be addressed in the implementation work that will follow these initial recommendations and it's up to us all to shape how that happens. We're near the beginning of that process really, so there will be questions that are not answered by the report itself.'

NHS England Mesh Working Group
Since July 2014 it has been extremely hard work for us as Patient and Public Voice representatives (PPV's) submitting all the recommendations to NHS England and we can honestly say the NHS didn't realize at the begining of the meetings back in 2014 there's a serious growing health problem with synthetic meshes until they listened throughout all the forthcoming meetings held during the year 2014 and 2015 it was through sheer perseverance and determination by submitting the relevant evidence which is still ongoing to this present day they can see the system did let us down and a full investigation is needed.

A small insight on things to arrive:
1. The NHS England Full Report to be published soon
2. A full list of surgeons to help all the mesh-injured in the UK to be published soon
3. TVT/Mesh Helpline for the UK
As Patient and Public Voice representatives for NHS England we asked them about the NHS Mesh helpline for the UK. We received confirmation email dated 10th September 2015 from NHS England working group saying - The present NHS Mesh Helpline for Scotland is for Scotland only - but the clinical subgroup has made a recommendation to set one up for England. It's good to read Scotland have the NHS Mesh Helpline but what about the rest of the UK? At the moment support, advice and help for England, Wales and Ireland is coming from unpaid volunteers at TVT Mum and other support groups in England for many years.

From TVT Mum archives concerning the NHS Mesh Helpline
After our talks with the MHRA back in March 2012 we received an email from Dr Susanne Ludgate (she has retired now) about the NHS Mesh helpline, please see below:

Email From: Susanne.Ludgate@mhra.gsi.gov.uk (This email address no longer exists)
To: lorraine@tvt-messed-up-mesh.org.uk
Subject: Vaginal Tapes and Meshes
Date: Thu, 21 Jun 2012 12:41:45 +0000
Dear Lorraine,
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.
This is a point I have made very firmly with our experts in this area and they have taken this on board such that 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 know such an initiative to happen so congratulations to you for pushing this forward.
With kind regards.
Susanne Ludgate
Dr Susanne Ludgate
BSc (Hons) MB ChB DMRT FRCR FRACR
Clinical Director, Devices
Medicines and Healthcare products Regulatory Agency

We hope this gives everyone some insight into the work we do every single day and also trying very hard to ensure NHS England see the true devastation concerning Synthetic TVT/Mesh Medical Devices.

Best wishes to all the mesh injured and to everyone supporting the cause.

Lorraine Evans and Hayley Martin
NHS England Patient and Public Voice Representatives

Date: 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.

Date: 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?

A big thank you to everyone for helping to get the word out and for your continued support!




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