500 signatures reached
To: Jeremy Hunt MP, Chair of the Health Select Committee.
Public Inquiry into Disabilities caused by AntiEpileptic Medication in Pregnancy
Dear Minister,
We are appealing to you on behalf of the Fetal Anti Convulsant Trust and all people affected by Fetal AntiConvulsant Syndromes.
Please could you request a public Inquiry as to why Sodium Valproate (Epilim) has been given out for over 30yrs and is still being given out to women with Epilepsy and other conditions like Bi-Polar, manic Depression, Persistant Headaches, and many more, when there is a chance that they may want to start a family. There needs to be more awareness of the fact that research shows conclusively that there is a 12% risk of the child having Neuro Developmental Problems, with the highest incidence being of an Autistic Spectrum Disorder, and that the risk increases to 15% if on a second medication.The risk factor then rises to 40% if you take into account all physical and cognitive impairments also. Some physical impairments are so severe the child doesn't survive into adulthood.
We are appealing to you on behalf of the Fetal Anti Convulsant Trust and all people affected by Fetal AntiConvulsant Syndromes.
Please could you request a public Inquiry as to why Sodium Valproate (Epilim) has been given out for over 30yrs and is still being given out to women with Epilepsy and other conditions like Bi-Polar, manic Depression, Persistant Headaches, and many more, when there is a chance that they may want to start a family. There needs to be more awareness of the fact that research shows conclusively that there is a 12% risk of the child having Neuro Developmental Problems, with the highest incidence being of an Autistic Spectrum Disorder, and that the risk increases to 15% if on a second medication.The risk factor then rises to 40% if you take into account all physical and cognitive impairments also. Some physical impairments are so severe the child doesn't survive into adulthood.
Why is this important?
This is so important as you are looking at a mother who already has a disability who is then at risk of having a child / children with disabilities themselves. THIS IS CAUSING IMMENSE PREVENTABLE SUFFERING. Estimates suggest in excess of 20,000 people have been affected to date. CLINICIANS ARE NOT BEING PROVIDED WITH THE NECESSARY SAFETY INFORMATION by the Medicines and Healthcare Products Regulatory Agency and the European Medicines Agency.
Without widespread awareness the number of people affected continues to grow.
The impact on the family can be devastating with many ending up as full time carers. Because of this many Mother’s cannot pursue their careers and are reliant on benefits. The tax payer is providing the support services that are required throughout the child's lifetime.
FREEDOM OF INFORMATION REQUESTS HAVE CONFIRMED that ONE child’s costs for Health, Education & Welfare will be in excess of £6 MILLION in their lifetime. IN EXCESS OF 20,000 PEOPLE ARE AFFECTED BY FACS!
I have 4 children affected with the 2 youngest having Autism. I have become a full time carer and both boys are in specialist schools, as a parent you fear for their future as they will always need a level of support . Their cognitive functioning means they have low self esteem and depression and frequently self harm as they know no other way of expressing them selves. They live in pain on a daily basis with their joints and have few / no friends.
Many families will end up with more than one child affected because although there may be facial features at birth they are often not recognised by the doctors and midwives and it is only as they get older and more problems present themselves that they realise there is something wrong. Many symptoms are diagnosed individually due to poor knowledge of Fetal Anti Convulsant Syndromes.
WE WOULD LIKE A PUBLIC INQUIRY BY A HIGH COURT JUDGE TO INCLUDE:
Independent Systematic Reviews
• How medicines and medical products are regulated in the UK.
• Why the Consumer has not been protected by British or EU Law.
• Why successive governments have failed to improve flawed systems.
As a mother I always put my children first and I would not choose to put them through a lifetime of pain, suffering, loneliness and dependence on others.
I WOULD WANT THEM TO HAVE A CHANCE OF A FULFILLING LIFE OF THEIR OWN............THAT CHOICE WAS TAKEN AWAY!
IF YOU ARE WORRIED DO NOT COME OFF OF YOUR MEDICATION BUT CONTACT YOUR GP / AND OR NEUROLOGIST!
More information on the condition can be found at:
https://www.oacscharity.org/about-fetal-anti-convulsant-syndromes
YOU CAN HELP REDUCE SUFFERING AND SAVE BILLIONS OF POUNDS BY REQUESTING A PUBLIC INQUIRY
AFTER THALIDOMIDE WE WERE TOLD IT WOULD NOT HAPPEN AGAIN........IT HAS HAS HAPPENED AGAIN BUT THE NUMBERS ARE FAR GREATER AND STILL RISING. WITHOUT CHANGE IT WILL CONTINUE TO HAPPEN!
Without widespread awareness the number of people affected continues to grow.
The impact on the family can be devastating with many ending up as full time carers. Because of this many Mother’s cannot pursue their careers and are reliant on benefits. The tax payer is providing the support services that are required throughout the child's lifetime.
FREEDOM OF INFORMATION REQUESTS HAVE CONFIRMED that ONE child’s costs for Health, Education & Welfare will be in excess of £6 MILLION in their lifetime. IN EXCESS OF 20,000 PEOPLE ARE AFFECTED BY FACS!
I have 4 children affected with the 2 youngest having Autism. I have become a full time carer and both boys are in specialist schools, as a parent you fear for their future as they will always need a level of support . Their cognitive functioning means they have low self esteem and depression and frequently self harm as they know no other way of expressing them selves. They live in pain on a daily basis with their joints and have few / no friends.
Many families will end up with more than one child affected because although there may be facial features at birth they are often not recognised by the doctors and midwives and it is only as they get older and more problems present themselves that they realise there is something wrong. Many symptoms are diagnosed individually due to poor knowledge of Fetal Anti Convulsant Syndromes.
WE WOULD LIKE A PUBLIC INQUIRY BY A HIGH COURT JUDGE TO INCLUDE:
Independent Systematic Reviews
• How medicines and medical products are regulated in the UK.
• Why the Consumer has not been protected by British or EU Law.
• Why successive governments have failed to improve flawed systems.
As a mother I always put my children first and I would not choose to put them through a lifetime of pain, suffering, loneliness and dependence on others.
I WOULD WANT THEM TO HAVE A CHANCE OF A FULFILLING LIFE OF THEIR OWN............THAT CHOICE WAS TAKEN AWAY!
IF YOU ARE WORRIED DO NOT COME OFF OF YOUR MEDICATION BUT CONTACT YOUR GP / AND OR NEUROLOGIST!
More information on the condition can be found at:
https://www.oacscharity.org/about-fetal-anti-convulsant-syndromes
YOU CAN HELP REDUCE SUFFERING AND SAVE BILLIONS OF POUNDS BY REQUESTING A PUBLIC INQUIRY
AFTER THALIDOMIDE WE WERE TOLD IT WOULD NOT HAPPEN AGAIN........IT HAS HAS HAPPENED AGAIN BUT THE NUMBERS ARE FAR GREATER AND STILL RISING. WITHOUT CHANGE IT WILL CONTINUE TO HAPPEN!
How it will be delivered
Deliver them in person and press conference.
