IMMDS Review into #Valproate

#First Do No Harm

"We welcome the review report and thank them for the commitment to finding the truth and putting together comprehensive changes to the health and social care.

“What we should remember is this is just the beginning and for any justice for our children we require a task force to comprise of, at least one representative from each patient groups, to set up a redress scheme that covers the social care, health, education and to secure a financial future for all victims past and present.

“Until this is achieved, we will carry on fighting and expect that all state bodies will find the lost children of Sodium Valproate from time of licensing.” 

OACS Charity Statement 

On July 8th 2020 the long-awaited report from the IMMDS Review has been released

Leigh Day Solicitors and David Body have been supporting OACS, FACSAWARE and Valproate Victims through this whole procedure.


There are so many unknowns in this world and we want to be sure our children are safe and secure when we are no longer here. Bearing this in mind we need to address the following.

1. Support


We want the appropriate support to be available without having to fight for it from the state both physically, emotionally and financially from birth to death

2. Care package


We want care packages set up for our children based on their individual needs and to be re-assessed annually. This is to include a full medical check-up (mentally and physical) scans, MRI’s, blood etc. One thing we have noted with all of our children is how much their needs change as they grow and develop emotionally and physical

3. Compensation


We would like compensation for each child for the damage Sodium Valproate has caused that will support them throughout their lives and ensure they are safe and secure when we are no longer able to ensure this for them. This includes a trust fund to be set up to continue to support them should they need it

4. Evidence


All the information that was redacted and brought to light to show the full extent of what we believe to be a cover-up

5. Research


We want further research into how the drug has damaged both men and women who have taken Sodium Valproate. We need further research into how it has affected men and whether it is passed onto their children. We want further research into whether the syndrome has been passed onto our children’s children.

6. Lost Children


We would like to find the lost children so they can seek justice alongside our children.  

It's important that the families and children, receive the support they need and deserve
Also to enable us to learn from them and prepare for the future needs of the younger children.


We have received a significant amount of data which has been passed to the IMMDS from Karen Walsh OACS Ireland without whose support we would have been lost. There have been many others who have worked tirelessly with OACS over the years or on the board while researching and working with other professionals finding evidence we have been able to submit for the report. The campaign leading up to this has been ongoing for decades and we will be forever grateful to their dedication in finding the truth. The drive and dedication behind each of these parents in finding evidence and fighting for our children while raising their own families who are living with the devastation that Sodium Valproate has caused is exceptional It just highlights the strength and commitment of these parents.

There are those that may wonder why our children are different to any other child or adult with a disability and why they should receive special treatment. After all the state provides for these children, or does it? Anyone who has tried to access educational or financial support from the state will know how difficult and sometimes impossible it is to ensure appropriate support is given. The answer is there are no differences expect one that is excruciatingly unjust. Our children have Fetal Valproate Spectrum Disorder simply because someone decided that it was okay to give a pregnant woman a medication that they knew would poison their unborn child thus causing our children to have a manmade disability that drastically changed who our children would have been. We feel those responsible should be held to account and our children should be compensated.

We would like to thank all those families who contributed to our submission by telling their stories. To open up and speak about their lives and the damage Sodium Valproate has caused their families was a difficult and emotional struggle for all.

There are still babies being born with the syndrome and although we do not have an exact figure the fact that children are still born with FVSD is devastating news.

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Support

 

We are here to support all families touched by Fetal Anti-Convulsant Syndromes. OACS is the only patient led registered charity for Fetal Anti-Convulsant Syndrome in the UK and Ireland. 

 

Fetal Anti-Convulsant Syndrome is caused when the anti-convulsant medicine a woman takes during pregnancy affects the foetus.  It is not yet understood why this affects some children and not others, but it is believed may be due to a genetic disposition.

Have you had a Valproate Review from your GP or Neurologist?

If you haven't please click on the link below and contact you Health Care Professional for a medication review.

Do not stop taking your medication without talking to a Epilepsy Health Care Specialists!

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Excellent news

OACS Solicitors Leigh Day


From OACS Solicitors Leigh Day are teaming up with David Body who ran the FAC Litigation which ended in 2010. David Body ought to be retired however he has come back to help us through this. The team are being joined by a selective group of legal experts in product liabiity and regulatory law.

The submission by INFACT via Mansfield does not have any bearing on what we are doing here. Both parties will lead to a submission to the Review. You may fill in their forms if you wish to - however the submission by OACS will encompass a wide range of arguments and has been seen to be such an important piece of work that lawyers are working round the clock pro bono. It will incorporate our views and experiences and the views of a wide range of stakeholders. This is not a closed and finite process.

Leigh Day have extensive expertise in Product Liabiility, Human Rights and Inquiries. We will be sharing some survey forms to fill in on specific issues.

Please share these as widely as possible. It will help if you first register on oacscharity.org 

 

Here is the link:

Thank you for your patience and apologies for the confusion and worry caused by it.

European Medicines Agency

Latest Review

Learn More About Epilepsy Here!

If you had medicine during pregnancy and wish to take part in research.......

Rare Connect is a Global Support Community, set up for everyone with rare syndromes for sharing their stories with other families across the world in the same situation as you are in and making new friends along the way.

 

OACS has a growing community page you can join for free today: Fetal Anti-Convulsant Syndrome' Community  www.oacscharity.org

The information provided by OACS is to empower so that those taking anti-convulsant medicines can make informed choices about the medication that is used during pregnancy.   It is important to speak to your doctor before choosing to stop or changing any medication

National Conference on the Consequences of Sodium Valproate (Epilim): 50 years on

 For patients & families, healthcare professionals and policy makers

Organised by the Health Service Executive, Epilepsy Ireland, OACS Ireland, Trinity College Dublin and the FACS Forum

Friday March 22nd 2019
9.30am – 5pm

Stanley Quek Theatre
Biomedical Sciences Institute | Trinity College Dublin
152-160 Pearse Street | Dublin 2

 

Sodium Valproate (Epilim) is a medication used to treat epilepsy and bipolar disorder. The European Medicines Agency has restricted its use in women due to the increased risk of disabilities in children exposed to Valproate in the womb (Foetal Valproate Syndrome).

This conference will address the key issues today facing families, healthcare professionals and policy makers in:

  • The pharmacology of sodium valproate

  • Sodium valproate: Who knew what and when?

  • Reducing the risks associated with sodium valproate

  • Diagnosing and managing foetal valproate syndrome

  • Living with foetal valproate syndrome and the consequences of sodium valproate

  • The Irish Health Service’s response to the valproate problem

Speakers include:

  • Dr Colm Henry, HSE Chief Clinical Officer

  • Karen Keely, Chairperson, OACS Ireland

  • Dr Jeff Aronson, Clinical Pharmacologist, Centre for Evidence-Based Medicine, Oxford

  • Prof. Carl Heneghan, Director of the Centre for Evidence-Based Medicine, Oxford

  • Prof. Amanda Wood, Professor of Developmental Neuropsychology, Aston University, Birmingham

  • Dr Peter Turnpenny, Clinical Geneticist, Royal Devon & Exeter Hospital, UK

  • Prof. Andrew Green, Consultant Clinical Geneticist, Our Lady's Children's Hospital, Crumlin

  • Families affected by Foetal Valproate Syndrome

  • Members of the HSE’s Valproate Response project team

For further information, please contact:

Sabrina Doyle, HSE: 01 6352508 | sabrina.doyle@hse.ie

© Copyright of Organisation of Anti-Convulsant Syndrome (O.A.C.S) 2/2014 Registered Charity no. 1116497 

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