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  • Writer's pictureSusan Valproate Victims

Not exhaustive, just exhausting

In a recent meeting with DHSC, PSC and NHSE I realised that I’d finally lost patience. To be honest I’d lost it many years before. Looking at the facts, it’s no wonder why. This is just the work I've done.

If there are any inaccuracies, please contact me and I will update

2001 - diagnosis, paediatricians said he’d seen hundreds of cases in India

2001 - contacted neurologist about it, they shrugged and referred me on to

2001 - AVMA Assoiation for medical accidents. My situation wasn’t deemed as an accident, they referred me on to

2001 - Contact-a-Family, a charity signposting disabled children to a group that can help. Then referred on to

2001 - NFACSA, National Fetal Anticonvulsant Association. Somebody suggested I try a wrongful birth claim

2003 - Hospital failed to send records in time and limitation period ran out

2003 - Through NFACSA I met Carol and we set up a London support group at St Ann’s Hospital, and supported by paediatrician there.

2003 - Paediatrician sent out a switch programme designed to help GPs switch women of childbearing age to lamotrigine

2003 - Paediatrician organised a seminar and invited all local GPs. It was very well attended, I was a case study and shared my baby for all to see

2003 - NFACSA changed leadership to OACS and I set up meetings at Great Ormond Street which would bring in more families. Attendance was rare.

2003 - Took over managing and summarising research papers for OACS, which had been copied at the library and sent over to me

2004 - New research showed overwhelming data with very much increased risks

2005 - Epilepsy Action had a ‘mothers in mind’ campaign.

2005 - Wrote an article for Disability Pregnancy and Parenting International, an organisation supporting women with disabilities to get into work

2006 - Got involved in Parents for Inclusion, a disability rights organisation supporting families in making education settings more inclusive. An eye opener and my view of disability changed

2005 - 2010 - FAC Litigation started, which restricted media coverage

2010 - Legal Aid was withdrawn at 11th Hour and the GLO didn’t reach court. On the day of the court case, Sanofi decided to include autism on the Patient Information Leaflet. The FAC Litigation ended, we lobbied for a Public Inquiry

2010 - I requested a Select Committee Inquiry

2010 - Both inquiries refused on the grounds that women were getting support from existing statutory services and evidence was weak

2010 - Many families contacted their MPs and lobbying began with party line responses

2010 - Discovered links between NHNN DHSC became apparent

2010 - Research now on internet more freely available and I found many studies showing effects of valproate in animals and case studies

2011 - FACT set up, run by Emma Friedman

2011 - Conflicts with the support groups

2011 - Set up Facebook group

2011 - Petition to Downing Street - one by OACS and one by other campaigners

2011 - A range of lobbying activity run by Janet Williams and Janet Stockley Pollard, which established an APPG

2011 - OACS Board collapsed and Janet Williams set up INFACT and ran APPG Secretariat, excluding all groups apart from one AGM following complaints

2012 - Lost many close family members an took time out

2013 - Contacted by Jo Cozens “we’ve just got to do something, all this infighting is ridiculous”. A joint protest was held outside MHRA with FACT Emma Friedman Jo Cozens. This was attended by a wide group of parents and young people affected. Evidence about 40% neurological effects came out, Cochrane Review

2014 - Attended Alltrials seminar at Oxford CEBM, met Carl Heneghan et al

2015 - MHRA consultations began, attended by only 4 groups initially, with quarterly meetings, eventually attended by around 20 of the biggest organisations in a round table format. This began the process of the Pregnancy Prevention Plan, resulting in a Risk Acknowledgement Form which women were urged to sign. This addressed the new law initiated by Nadine Montgomery who was failed to be given informed consent to treatment

2016 - A Public Hearing was set up by EMA, attended by a range of stakeholders across Europe

2017 - Jeremy Hunt called for the IMMDS Review

2017 - Carried out lay review on sharing risk information with psychiatric patients

2018 - Represented valproate at a Panel discussion at Oxford University, Centre for Evidence Based Medicine, made more contact with Academics such as Trisha Greenhalgh

2018 - Submitted 250 page submission within 3 weeks, collaborating with Facsaware, OACS Ireland with the help of Leigh Day Law

2018 - 2020 - IMMDS Review continued, finding out ‘more than we expected’

2020 - IMMDS Report First Do No Harm published with recommendations

2020 - Scotland accepted all recommendations immediately, UK immediately acted on some, refusing to set up a redress scheme or a redress agency or specialist centres

2020 - Established an independent group, Valproate Scotland to deal with their systems

2020 - 2023 - Lots of media articles and studies, patient engagement initiatives by regulatory bodies, associations and royal colleges, continuing on, with no action from government to help women whose children were born before they started their new projects to change their systems

2023 - Contaminated Blood Inquiry concludes - having started in 2018 - families have been losing their loved ones while their 50 year battle for justice has been ignored. The have been granted a £100,000 interim payment, while a more detailed compensation can be established.

I will amend this list as far more has been done

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