The officers of the APPG include the Chair, Vice-Chair, Officers, Treasurer & Secretary. Each of them has taken their position in the APPG to be a champion within Parliament, and beyond, for people harmed by Anti Epilepsy medicines . The officers were elected at the APPG Annual General Meeting on 22 February 2022
Today the All Party Parliamentary Group (APPG) held its Annual Election of Officers and duly elected the following persons :
Chair – Cat Smith MP
Vice Chair – Caroline Nokes MP
Vice Chair – Christian Wakeford MP
Officer – Liz Twist MP
Officer – Ben Lake MP
Treasurer – Lord Philip Hunt
Secretariat is provided by INFACT
What is an APPG ?
All-Party Parliamentary Groups (APPGs) are informal, cross-party, interest groups of MPs and Peers interested in a particular issue. APPGs do not have any power to make laws and are not funded by Parliament. There is a great number of APPGs, covering many and diverse fields such as health, education, transport, defence, finance, the media, and sports. Some APPGs have existed for many decades whereas others come and go in response to issues of the day.
We encourage all MPs to join this APPG on behalf of their constituents
Objectives and Aims of APPG for Anti Epileptic Drugs in Pregnancy
Listed below are what the APPG plan to achieve with Objectives to provide a forum for MP’s and Peers to discuss Fetal Anti-Convulsant Syndrome related issues:
• To raise areas of concern with Government or other policy makers.
• To seek Statement of Regret, Care Plan for those affected and compensation for the parents of families affected from Government and pharmaceutical companies, and to establish on going funding for the large number of new born and newly diagnosed children
• To raise the profile of Fetal Valproate Spectrum Disorder & Fetal Anti-Convulsant Syndrome within Parliament
• To seek opportunities to help improve the life and services of the sufferer/victim
• To discuss and implement changes required to the law to ensure that consumers are afforded greater protection. Current law appears to provide no effective protection for the consumer.
• To investigate and examine the effectiveness of the principles, departments and systems that exist or need to be implemented to minimise the risk of similar problems recurring in the future.
For more information on this APPG please contact Public Enquiry Point
Janet Williams via email : janet.infact@btinternet.com
Victims of mesh and drugs alleged to harm babies in the womb say they feel ‘ignored’ by the government, which has failed to act on some recommendations made by an independent safety review nearly two years ago.
Campaigners found to have been harmed by medical products have written to the health secretary warning that government inaction is “causing pain and destroying lives” by ignoring review recommendations.
Over 18 months ago, an independent review recommended financial help for people damaged by some products and drugs that had been prescribed by UK doctors.
The government – which set up the Independent Medicines and Medical Devices Safety Review in the first place – has chosen to ignore several of its recommendations
Alleged victims of vaginal mesh, and the drugs valproate and Primodos, have written to Health Secretary Sajid Javid and Maria Caulfield to say they feel ignored.
The letter states: “Our members gave evidence to the two-year-long review, sometimes travelling long distances, often with disabilities.
“Families shared intimate details of their medical problems, their daily struggles, their difficulties parenting, sometimes even their sex lives. The panel, led by Baroness Cumberlege, was set up by the government to listen, assess and direct policy towards the best course of action.
“What was the point of this exercise and the hard work of the panel, if their key recommendations are then ignored by the government?”
The Cumberlege review found those affected by pregnancy test drug Primodos and epilepsy drug valproate, both alleged to damage babies in the womb, suffered “avoidable harm” and that the same was true of many women who had vaginal mesh implants.
The review team said that “the healthcare system is disjointed, siloed, unresponsive and defensive”.
It called for a system of redress to help affected families deal with their problems.
Lisa Hurton’s 10 year-old son, Kieran, was found to be autistic after she took sodium valproate while pregnant.
She told Sky News: “If someone has done wrong, there is blame there and they should be putting this right.
“Its the Government that have hid this. Its nothing to do with drug companies. Its nothing to do with the NHS. At the end of the day its the Government. They’ve known, its written in black and white, its in the Archives and we’ve got proof of this. We’ve had a so called apology from Matt Hancock. At the end of the day thats nothing.
It’s not about full blown compensation and things, this is about our children and how they’re going to be when we’re not here. That’s our greatest worry as a family.”
Criticism from former prime minister
Theresa May, who commissioned the review as prime minister, said in a recent parliamentary debate that “lives have not just been changed, but significantly damaged”.
She said: “People have suffered physically, mentally, socially and often economically.”
Mrs May added that people “suffered constant rejection from the state – by the NHS and government, the very bodies that should have been there to support them.
“The longer it takes the government to fully implement the recommendations of the Cumberlege report, the more rejection these people suffer. Every week that goes by is a further rejection, because the report was very clear: action needs to be taken.”
At the same Westminster Hall debate, earlier this month, Conservative MP Sir Mike Penning said: “What is the department waiting for, like they were with thalidomide, for these people to die?”
The government response
The Department of Health has implemented some of the Cumberlege recommendations, and said: “We cannot ignore the fact that this report is one of several independent reports and inquiries to have concluded that our healthcare system disproportionately fails to listen to women and keep them safe.
“This government is determined to change this, not least through our work to develop the first ever Women’s Health Strategy for England. This report is a powerful call to action, and we are determined to deliver meaningful change through the government’s response.”
We are planning an event for August 2022 in which Managing Director Emma Murphy, her family, friends , families affected by FVSD/ FACS and also some supporting MPs (to be announced soon) will be taking on the challenge to climb Ben Nevis to help raise funds for INFACT. INFACT are a registered Charity in the UK representing children and their families that have been born with cognitive and physical disabilities caused by anti convulsant medicines whilst taken in Pregnancy such as Sodium Valproate. These disabilities come under umbrella terms of Fetal Valproate Spectrum Disorder and Fetal Anti Convulsant Syndrome. Currently there is very limited help or recognition for these syndromes, and one of the main aims of our charity INFACT is to directly address this problem by Campaigning for full redress and support for affected people. Our work consists of :
Raising awareness of FVSD & FACS within Parliament and keeping it on the Political Agenda Working with Governing Bodies such as Medicines Healthcare Regulatory Agency, Department of Health, World Health Organisation , NICE and other organisations ensuring prescribing information of Epilepsy medicines is as up to date as can be Advocating and helping parents apply for EHCP so children have the correct support in schools & colleges
With the aim of raising as many funds as possible we are opening this event to anybody who wishes to join us. The response to this event since it has been announced has been absolutely fantastic and are very grateful and appreciate everyone that have already committed to taking on this challenge
Emma Murphy –
“My husband and three of my children who are diagnosed with Fetal Valproate Spectrum Disorder will also be taking on this challenge. We would love to see any other families get involved with us. However this is not an easy challenge and careful consideration to your personal safety and fitness needs should be given as this will be taken at your own risk.
We ask anybody who accepts this challenge to open a personal Justgiving Page and we will provide all information relevant to INFACT for your page and a consent form. Everybody who raises money for INFACT and completes the Climb will receive a thankyou medal from us
We are looking to climb Ben Nevis on Saturday 13th August 2022However if the weather is bad that day and is markedly better on Sunday 14th, we will do it then. So please be aware to give yourself this option when planning your stay. There is a very good Campsite at the foot of Ben Nevis. They have electric tent pitches, caravans and pods available however early booking is strongly advised. Campsite — Glen Nevis Holidays (glen-nevis.co.uk). There are also hotels around the area of Ben Nevis that are easily accessible if camping is not for you.
I personally am travelling up on Thursday 11th August and am staying for 6 nights. We would love to see anybody make it a longer stay too. …The more the merrier :)In advance we know our families will support us with this, like you always have done, and we want to thank you already”
Fundraising Pages
As a National Charity INFACT are now registered on fundraising platforms Justgiving and GoFundMe. You can set your own personal fundraising page up for this challenge and link it to our pages on these sites.
If you have any queries with regards to this event or any fundraising event / donations please contact us : Infactfundraising@gmail.com
First Do No Harm Ltd – response to the report of the Independent Medicines and Medical Devices Safety Review
Authors : Yvette Greenway Mansfield & Mary McLaughlin – Directors At First Do No Harm Ltd
The Government’s long awaited substantive response to the Cumberlege Review strode silently and without announcement into the public domain on Wednesday 21st 2021. The contents reveal why a low-key delivery was perhaps deemed necessary, because disappointment at best, and sheer outrage, at worst, are the reactions by the women affected. It can only be described as a cruel and bitter blow to all affected and to the children of those women who took Valproate during pregnancy. Just what did the Cumberlege Review achieve in light of the Government’s response?
The Review itself missed crucial opportunities, and, through omissions in its report, appears to have ignored submitted and damning evidence. It advocated for a no blame approach, (contrary to the feelings of many women), and, for the thousands of women and families harmed by vaginal mesh, Sodium Valproate and Primodos, the lack of noise surrounding such an important response was yet a further reminder that there is far to go before women’s issues are treated with the prominence, equality & respect they deserve.
Let us be clear, when harm and danger was already established, yet continued, as in the case of Valproate, then a criminal investigationshould have been conducted. This was never explored or suggested by the Review, a gross failure on their part to do right by the women they were meant to represent.
Some women affected feel betrayed by many – the Cumberlege Review, MHRA, GMC, Royal Colleges, Ministers, and also the media, who prefer to run with narratives of ‘hope and positivity’, whilst not examining, or reporting upon, the key players catastrophic failures which contributed to avoidable harm in women and for which they received a written ‘tap on the knuckles’. What requirement to change for the better, when behaving irresponsibly and dangerously does not penalise or encourage a patient first/patient safety approach?
There is a patronising and pitying approach in the foreword by Javid and Dorries, which could, and should, have been replaced with positive action to ensure change for the benefit of all women. Normal women, whose lives have been changed forever because of medicines and devices whose dangers were known, yet not conveyed. Women who went unheard. Women’s voices dismissed. Women who re-lived their trauma assisting the review. Women betrayed, gaslighted and coerced. Women who see their damage passed down to their children and have to live with almost unbearable guilt. Women whose identities and self-worth have been demolished. Women with damaged emotional health which gets little recognition or discussion.
Many victims are campaigners, devoting every day at the expense of themselves to helping others and driving for change and equality for women. But even within this arena, victims find their stories hijacked by the privileged and favoured, who are part of groups set up which should be open and transparent but are in fact secret clubs who do not believe in sharing information unless it benefits and escalates their own profiles.
We say NO to no redress, we say NO to dragging victims through the court system, we say NO to financing our own litigation or paying costly sums to solicitors, or trying to engage lawyers on a no win no fee basis, we say NO to further humiliation by a PIP system which is unfit for purpose, we say NO to going anywhere near surgeons who have harmed us again, we say NO to pretending no crimes have been committed, we say NO to letting big pharmaceuticals off the hook and NO to carrying the brunt of procurement gone wrong.
Contact :
Yvette Greenway-Mansfield (Director) Mary McLaughlin (Director)
)In advance we know our families will support us with this, like you always have done, and we want to thank you already”
INFACT 