Campaign Update – APPG – Annual General Meeting


 

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On 18th June 2014 our APPG AGM (All Party Parliamentry Group- Annual General Meeting)  for Thalidomide and Other Harmful Drugs in Pregnancy.  As we are working very closely with Thalidomide Campaign Team INFACT were invited to be members of this Party due to our on – going campaign.  Normally with an APPG it is only the members and MPs  who attend the meeting but as this was the AGM  any persons could attend the meetings (with an invite)  Those in attendance were Drug Manufacturer Sanofi, NHS England,  AEDiP, MHRA, MPs, OACs , parents of affected children , Janet our Educational Officer Catherine and myself

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The agenda of yesterday’s meeting was basically to discuss the issues surrounding Epilim (Sodium Valproate) and what next steps were needed.  Janet and I have been in contact with Dr June Raines from MHRA since last year, and when we met last we expressed our concerns that currently in NHS there are no information booklets with regards to how taking Epilepsy medications can affect the baby during pregnancy.  It is now official that INFACT are producing booklets to go in every clinic in NHS where Anti Epileptic Drugs are prescribed.  We have been working on this for a very long time, and is still in draft mode with a lot more work to do, but the fact we are doing this is just fabulous.  The fact that we are helping educate ladies about this topic is the reason I decided to speak out about my families experience with Epilim, it feels right.

It was a very positive meeting and I personally enjoyed meeting other parents.  Meeting mums who had been fed a lot of lies having never met me gave me the chance to put all the jealous and bitter accusations to bed. It amazes me the  lengths people will go to involving innocent people on their merry go round.  What have they actually achieved out of it ???? Yep nothing,    Very sad !

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Hearing their experiences of how Epilim had affected them  was heartbreaking.   These mums like myself have been dealt a huge injustice.  Hearing also about the lack of support we as parents get with our kiddies and the continuous fight we have with local authorities and education.  We are also hopeful that a database will be worked upon with Thalidomide Campaign team by which, mothers on medication and their children will be registered on a database, so that for the future, all information about medicines and the ladies on them will be collated.

In Parliament that day we also met TV Presenter Kate Garraway.  I get so celebrity struck when I see famous people.  I ran over to her for a quick picture, and she was so lovely.  She must have thought I was a deluded woman !!! I was just excited.  My kids were made up when they saw the picture.

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We are now preparing for the European Review into Epilim as we are giving evidence.  We have an awful lot of evidence to put forward and I will update you all after the event

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Last piece of good news is that INFACT are now a registered Company/Trust.  We were advised to do this by our solicitors, with regards to the nature of our campaign and the fact that we are seeking compensation on behalf of the thousands of affected peoples by AEDs.  We are now official and little old me is named as the Managing Director :J) With Janet being CEO

 

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