2014 in review Thanks for your support

The WordPress.com stats helper monkeys prepared a 2014 annual report for this blog.

Here’s an excerpt:

A San Francisco cable car holds 60 people. This blog was viewed about 1,500 times in 2014. If it were a cable car, it would take about 25 trips to carry that many people.

Click here to see the complete report.

Advertisements

“The Lost Children of Sodium Valproate” upto 40,000 Harmed, to the Media it’s Yesterdays News

PLEASE HELP THESE CHILDREN BY JUST GIVING, THANK YOU

What is going on in the UK when 20,000 – 40,000, Children have been harmed by just 1 Drug Sodium Valproate, this doesn’t even break the National News because it’s old news?

I do not understand you have Children dying and badly disabled by this drug and all our story is good for, is tomorrows Chip Wrap Paper?

What is wrong with the society that we live in, that is letting our media dictate what we are allowed to see and not report on what is happening,, when did this happen to us as a nation?  We have to fight back as a Country, there was a time when the media would have found out about this sort of story and run with it and made it into a big campaign!

The #CameronMustGo Social Media Campaign on Twitter and Facebook, is the only way we can reach people without chaining ourselves to the fences of Parliament or having a Famous person go on TV for us.

The #CameronMustGo campaign is the best mobilisation of people I have seen in a long time but what is clearly evident is how TV News Press and Media in the UK, is not reporting on information that is important to us as individuals.

We are not alone there are other groups of people out there also fighting to be heard, Sodium Valproate is going to cost an easy £30 – £60 Billion to the UK Taxpayers, to pay for the Lost Children’s Education, Social Services, Housing and Health Care for their lifetime.

Below Emma Friedmann of http://www.facsaware.net, has given a cost breakdown of her son Andy up till the age of 70.  You will see below 20,000 Plus Children Affected our estimates of £30-£60 Billion are on the very low side!

Cost to state

Costs to Social Services for Andy when he is an adult = £5,257,000. (approximate based on figures below)

Assuming he lives to the age of 70.

  • Accommodation, personal care, day care recreation and outside supervision = £2k per week.  £104k per year. £5,200,000 for 50 years.
  • Social worker, Salary of £30k, Cost to employer £40k including admin, transport etc.  £40k /52 weeks/40 hours x 60 hours = £1153 per year. £57,692 for 50 years.

Cost to Leicester Education Authority Special Educational Needs department = £317,000.  (approximate based on figures below)

This figure excludes social services preschool costs of playgroup keyworker and placement, nhs health care services, grants to community groups for their playscheme placements and support.

  • Initial Statement  = £6k
  • Subsequent 9 statements and 7 future statements slightly less per year – my estimate £3k x 16 years = £48k
  • Cost of 1-1 worker from foundation to yr 6 at avenue school = £86k
  • Learning autism support team so far 7 yrs = £3.5k
  • LAST Future support – my estimate £3.5k / 7 x further 7 years = £3.5k
  • Educational Psychologist so far 9 yrs = £3.5k
  • Ed Psych future support – my estimate £3.5k / 9 x further 7 years = £2.7k
  • Special school placement from 11-19 years old = £18k per year x 8years = £144k
  • Mini bus transport to and from special school from 11-19 years old = £20k
  • Plus administration costs, paper, photocopying, postage, telephone calls, printer cartridges etc = no figure available

Costs to Welfare Department for Andy when he is an adult = no figures currently available

  • Disability Living Allowance
  • Carers Allowance (for a carer)
  • Incapacity Benefit
  • Housing Benefit
  • Council tax Benefit
  • NHS prescriptions/ dental care/ glasses

Cost to University Hospitals Leicester = £3937

  • Consultant paediatrician = 1 initial appointment = £179.06 + subsequent appointments = £90.86 x 12 = £ = total = £1269
  • Physiotherapist = Appointment = £15.69 + report = £15.69 x 52 = £1632
  • Opthalmologist = initial appointment = £116 + subsequent appointments = £53 x 10 = £530 = total = £646
  • Clinical Geneticist = Initial appointment = £390 = total = £390

Cost to Leicester Primary Care Trust = £3026 +1 audiology + 1 autism appt

  • Audiologist = 1 appointment = unavailable at present
  • Speech and language therapist = 3 appointments per yr x 13yrs = £2716 + travel expenses = £310 = Total = £3026
  • Autism diagnosis team = 1 appointment = unavailable at present

More about OACS can be found at the following website:http://www.oacscharity.org/#!about1/ch9m

  • Jo Cozens has been blogging about FACS and her website can be found at the following website:https://jocuz1971.wordpress.com/
  • For anyone with concerns about FACS OACS, has a full advocacy support tailored to individual cases, this can be found at the following link: oacscharity.org

DO YOU REQUIRE ADDITIONAL SUPPORT?

Health, Education, Social Care, Community Groups or Just a Chat

PLEASE EMAIL US NOW WITH YOUR REQUIREMENTS TO

enquiries.oacs@gmail.com

 

For more information about Fetal Anti Convulsant Syndrome you can contact us between

12pm – 3pm Monday – Friday

Deborah Mann

Tel: 0208 3869271 Mob: 07833 563778

6pm – 8pm Monday-Friday

Call: – Jo Cozens

07940 002377

Outside of these times you, can email a call back request to enquiries.oacs@gmail.com

Also please visit our Facebook Support Page

Email: enquiries.oacs@gmail.com

By Post

Organisation for Anti Convulsant Syndromes
23, Morriston Close,

South Oxhey, Watford, WD19 6UB.

For O.A.C.S Republic of Ireland

Contact:-

O.A.C.S Liaison Officer for Ireland: – Karen Keely Walsh

Email: karen7411@live.ie

 

Contact us for caring and understanding support.

REMEMBER! We’ve experienced this too!

Europe at last Vindicates the families of “The Forgotten Children of Sodium Valproate”

NEWS RELEASE

FOR IMMEDIATE RELEASE                                                                                                   21 NOVEMBER 2014

TIGHTER CONTROLS FOR SODIUM VALPROATE MEDICATION USED IN EPILEPSY AND BIPOLAR DISORDER RECOMMENDED FOR PREGNANT WOMEN

A branch of a leading European medicines agency, the EMA (or European Medicines Agency) – whose main responsibility is the protection and promotion of public and animal health, through the evaluation and supervision of medicines for human and veterinary use.) – has recommended tighter controls on the use of Sodium Valproate for pregnant women and girls.

The EMA’s Pharmacovigilance and Risk Assessment Committee (PRAC) issued a statement on the 10th of October 2014 to suggest that restrictions of Sodium Valproate, (which is used to treat epilepsy and bipolar disorder, migraines, anxiety, depression, and neuropathic pain) should be strengthened.

It has been known for many years that malformations in children exposed to Valproate in the womb) the EMA gives this figure as 11% for Valproate babies as compared to 2-3% of the general population.

The move has come because of new concerns, as recent evidence proves that there is a risk of developmental delay (evidenced as between 30-40% of children). Data also shows that children exposed to Valproate in the womb are at increased risk of Autistic Spectrum Disorder (around three times higher than in the general population) and childhood Autism (five times higher than in the general population). There is some more limited data to suggest that children exposed to Valproate in the womb may also be more likely to develop symptoms of Attention Deficit Hyperactivity Disorder (ADHD).

Doctors in the EU are now advised not to prescribe valproate for epilepsy or bipolar disorder in pregnant women, and in women and girls of child bearing potential unless other treatments are ineffective or not tolerated. Those for whom valproate is the only option after trying other treatments should use effective contraception and treatment should be started and supervised by a doctor experienced in treating these conditions.  The UK has just licensed Valproate to be also prescribed for migraine, and where this is the case during pregnancy, alternative options to treatment should be quickly investigated. The guidance recommends that doctors should take measures to exclude pregnancy before endorsing a plan of treatment of using Valproate for migraine The EMA recommend the importance of doctors providing patients with up-to-date and effective information to help them make informed choices about the risks and their subsequent decisions for childbirth. The Committee concluded that women and healthcare professionals need to be better informed about the risks of Valproate exposure in the womb and of the need for effective contraception.

Several support groups in the UK, including OACS (Organisation for Anti-Convulsant Syndrome), a patient-led registered charity, for families with children with Fetal Anti-Convulsant Syndrome have helped to bring about this change. By calling upon parliamentarians in the UK, the groups have managed to raise concerns about the use of Sodium Valproate during pregnancy to provide information to future mums-to-be taking the drug so that they can make informed choices.

Jo Cozens, the interim chairperson of OACS commented: “At last the group feels as if we are really getting somewhere; I know I speak for all effected families the country over. We would like to give other women, taking sodium valproate, a future with the best possible outcomes.  The OACS charity has been working since 1999 to support these families.

The recommendations on the use of valproate in women and girls will be implemented by EU Member States according to an agreed timetable.

With a special thanks to the Antiepileptic Drugs in Pregnancy (AED-iP): Maternal and Child Health Advisory Group for their help and support, we cannot thank the team enough for their efforts.

Let’s hope that judge led public enquiry will now take place, with these results vindicating what our families have known for years. We need to find all of the Forgotten Children of Sodium Valproate, estimated 20,000 – 50,000 affected, since the launch of the drug. These forgotten children are costing taxpayers in excess of £30 – £60 Billion in Health Care, Social Care, Education and Housing”

The review of valproate was conducted by the EMA’s Pharmacovigilance and Risks Assessment Committee (PRAC), following which the CMDh endorsed the PRAC’s recommendations.

Patients are advised to consult their doctor if they are planning to become, or think they may be pregnant and are taking Valproate.

ENDS

Media Enquiries: Please contact email: oacsmedia@gmail.com Tel: 0208 3869271

NOTES FOR EDITORS:

DO YOU REQUIRE ADDITIONAL SUPPORT?

Health, Education, Social Care, Community Groups or Just a Chat

PLEASE EMAIL US NOW WITH YOUR REQUIREMENTS TO

enquiries.oacs@gmail.com

 

For more information about Fetal Anti Convulsant Syndrome you can contact us between

12pm – 3pm Monday – Friday

Deborah Mann

Tel: 0208 3869271 Mob: 07833 563778

6pm – 8pm Monday-Friday

Call: – Jo Cozens

07940 002377

Outside of these times you, can email a call back request to enquiries.oacs@gmail.com

Also please visit our Facebook Support Page

Email: enquiries.oacs@gmail.com

By Post

Organisation for Anti Convulsant Syndromes
23, Morriston Close,

South Oxhey, Watford, WD19 6UB.

For O.A.C.S Republic of Ireland

Contact:-

O.A.C.S Liaison Officer for Ireland: – Karen Keely Walsh

Email: karen7411@live.ie

 

Contact us for caring and understanding support.

REMEMBER! We’ve experienced this too!

Valproate Licensed in the UK 1975, How Many Children has it Harmed?

Sodium Valproate a Drug given to women for Epilepsy Licensed in 1975

It is estimated that well over 20,000 Plus Children have been Affected by this Drug

Taken innocently by their mothers, who in most cases were not informed of the risks to the unborn Foetus.

Informed Choice is little to ask when you are about to make the biggest decision of a life time to bring a new life to the world.

This week the European Medicines Agency, have ruled the following:-EMA Valproate Report from PRAC

“PRAC recommends strengthening the restrictions on the use of valproate in women and girls

Women to be better informed of the risks of valproate use during pregnancy

The EMA’s Pharmacovigilance and Risk Assessment Committee (PRAC) has recommended strengthening the restrictions on the use of valproate medicines due to the risk of malformations and developmental problems in children exposed to valproate in the womb.

Valproate should not be used to treat epilepsy or bipolar disorder in girls and in women who are pregnant or who can become pregnant unless other treatments are ineffective or not tolerated. Women for whom valproate is the only option after trying other treatments, should use effective contraception and treatment should be started and supervised by a doctor experienced in treating these conditions.”

What will the UK Government do about The Lost Children of Sodium Valproate?

£30,000,000,000 Billion is a very low estimate of Taxpayers money, for the cost of looking after 20,000 Plus Children that the UK Government does not want to find?

Why doesn’t the UK Government want to find 20,000 Children that have been Affected by a Drug Authorised Safe to Take???

Since 1983 the Government has known about this drug, Committee on Safety of Medicines

This report shows that back in 1983, the Government health departments were fully aware of Sodium Valproate and Congenital Abnormalities.

All these have been Prime Minister Since the Launch of the Sodium Valproate in 1975

Prime Minister                                                                       In Office                                     Out Office

Harold Wilson Number 10 official.jpg Harold Wilson 4 March 1974 5 April 1976
James Callaghan.JPG James Callaghan 5 April 1976 4 May 1979
Margaret Thatcher cropped2.png Margaret Thatcher 4 May 1979 28 November 1990
John Major 1996.jpg John Major 28 November 1990 2 May 1997
TonyBlairBasra.JPG Tony Blair 2 May 1997 27 June 2007
Gordon Brown official.jpg Gordon Brown 27 June 2007 11 May 2010
David Cameron official.jpg David Cameron 11 May 2010

Contact Details

OACS Charity Website

DO YOU REQUIRE ADDITIONAL SUPPORT?

Health, Education, Social Care, Community Groups or Just a Chat

PLEASE EMAIL US NOW WITH YOUR REQUIREMENTS TO

enquiries.oacs@gmail.com

 

For more information about Fetal Anti Convulsant Syndrome you can contact us between

12pm – 3pm Monday – Friday

Deborah Mann

Tel: 0208 3869271 Mob: 07833 563778

6pm – 8pm Monday-Friday

Call: – Jo Cozens

07940 002377

Outside of these times you, can email a call back request to enquiries.oacs@gmail.com

Also please visit our Facebook Support Page

Email: enquiries.oacs@gmail.com

By Post

Organisation for Anti Convulsant Syndromes
23, Morriston Close,

South Oxhey, Watford, WD19 6UB.

For O.A.C.S Republic of Ireland

Contact:-

O.A.C.S Liaison Officer for Ireland: – Karen Keely Walsh

Email: karen7411@live.ie

 

Contact us for caring and understanding support.

REMEMBER! We’ve experienced this too!

20,000 Plus UK Kids Affected by Sodium Valproate, Ignored By Government but this can not go on after EMA Release

Sodium Valproate, this is just another everyday story, of one of the ignored Children that

David Cameron’s Government choose to ignore!

I have Epilepsy it’s not my fault!

I sort medical advised after having only a few fits in my lifetime, it was recommend to continue to take Sodium Valproate in 3 slow release doses, 1200 mg per day, as my Neurologist advised me, there was only a 1% chance of having a baby with Spina Bifida, according to the notes that I have recently seen in my medical records!

Just take a higher dose folic acid and you’ll have lesser risk.

Back in late December 1998 when I had this advise from a Neurologist, the Welsh Government confirmed that the directive on prescribing Sodium Valproate, to women who were think of have children were as follows:-

“I note your concerns around the prescribing of Sodium Valproate and its effect on the unborn child.  Officials have obtained a copy of the Summary of Product Characteristics (SPC) for Sodium Valproate published in 1997, the period around which you have a particular interest.  The entry from Comapny XXXX(For Legal purposes I will not name the company or the brand name), the manufacturers of Sodium Valproate at the time, gives the following advice for prescribers:

“In women of child bearing age, Sodium Valproate should be used only in severe cases or in those resistant to other treatment.”

 The SPC goes on to advise:

 “Women of child bearing age should be informed of the risks and benefits of continuing anti-epileptic treatment throughout pregnancy.”

This demonstrates there was an awareness of safety concerns at the time but, as you identify, there was also a need to make sure this information was conveyed to the women receiving Sodium Valproate.

 Medicines licensing for the UK is a non-devolved matter, and is the responsibility of the Medicines and Healthcare Products Regulatory Agency (MHRA).  Further information on the work of the MHRA can be obtained from the following link: http://www.mhra.gov.uk/#page=DynamicListMedicines “

So I have Epilepsy, my husband is disabled with a chronic disease, that isn’t life threatening but means that some days he struggles to walk, our son Tom is currently 14 and really not coping well, as a teen socially in mainstream school, being pushed around and bullied on a daily basis because people don’t understand Autism Spectrum Disorder.  He’s diagnosed as Aspergers as well as all the Global affects, from his diagnosis of Fetal Valproate Neurodevelopmental Effects, form the Sodium Valproate I took when I was pregnant with Tom.

David Cameron, says we all have to go out to work, I have done this all my working life, with Epilepsy my, Disabled Husband and our Son Tom, he is currently waiting on an operation for his ears because one of the effects of the drug is that our Children’s ears have Narrow Eustachian tubes and Impaired Eustachian tube function, Tom now needs a Cholesteatoma removed.  The charity that I am a Chairperson of attended Parliament on the 18th of June, Alec Shelbrooke MP, Chair of the APPG Thalidomide and other harmful drugs prescribed during pregnancy, has added Sodium Valproate birth defects to the APPG. The purpose of this meeting was to formulate a workable strategy to raise awareness of Fetal Anti-Convulsant Syndrome (FACS), I ask the question “What are you going to do about the finding the 20,000 Children that have been affected by FACS”  the reply was on the line of nothing because we are just here to discuss how to make people aware of it for the future to prevent it.

Now one of the outcomes of the present governments way of thinking is the 20,000 plus children effected by Sodium Valproate, will be picked up by all the current services (DSS, Health Authorities, SEN, Housing and DLA) in place for our Children.

  • Schools do not ensure that the social welfare and educational needs of our Children are fulfilled to the maximum
  • NHS ignores our symptoms of Fetal Valproate Syndrome, by putting our Children onto the bottom of waiting lists when urgent operations are required, example my own son
  • It is very difficult for our Children to get an official Diagnosis of Fetal Valproate Syndrome because of Doctors fear of reprisalI am also the Interim Chairperson of the charity called Organisation for Anti-Convulsant Syndrome (OACS) http://www.oacscharity.org there are over 500 members just like me who have taken Sodium Valproate, or one of the other 26 Epilepsy Drugs, that there’s available to women, 20,000 plus is just the 1 drug Sodium Valproate, we are just scratching the surface with all of this and this drug has been on the market for 43 years.In the 43 years that Sodium Valproate has been on the Market there have been 8 Prime Ministers, David Cameron withdrew the legal aid stopping the families battle against the drug company responsible for this drug, he is also part of the current government choosing to ignore the huge bill of £30,000,000,000 (30 Billion) plus costing the UK today just to look after the 20,000 plus forgotten Children of just 1 Drug Sodium Valproate!  

    The EMA now says:-

“PRAC recommends strengthening the restrictions on the use of valproate in women and girls

Women to be better informed of the risks of valproate use during pregnancy”

http://www.ema.europa.eu/ema/index.jsp?curl=pages%2Fnews_and_events%2Fnews%2F2014%2F10%2Fnews_detail_002186.jsp&mid=WC0b01ac058004d5c1

Contact Details

http://www.oacscharity.org 

DO YOU REQUIRE ADDITIONAL SUPPORT?

Health, Education, Social Care, Community Groups or Just a Chat

PLEASE EMAIL US NOW WITH YOUR REQUIREMENTS TO

enquiries.oacs@gmail.com

 

For more information about Fetal Anti Convulsant Syndrome you can contact us between

12pm – 3pm Monday – Friday

Deborah Mann

Tel:0208 3869271 Mob:07833 563778

6pm – 8pm Monday-Friday

Call:- Jo Cozens

07940 002377

Outside of these times you, can email a call back request to enquiries.oacs@gmail.com

Also please visit our Facebook Support Page

Email: enquiries.oacs@gmail.com

by Post

Organisation for Anti Convulsant Syndromes
23, Morriston Close,

South Oxhey, Watford, WD19 6UB.

For O.A.C.S Republic of Ireland

Contact:-

O.A.C.S Liaison Officer for Ireland:-  Karen Keely Walsh

Email: karen7411@live.ie

 

Contact us for caring and understanding support.

REMEMBER! We’ve experienced this too!

EMA Recommends Strengthening Restrictions on Valproate Use in Woman

Global Success for all the Patient led Groups across Europe

OACS Charity is overwhelmed with the success that their members that took part had a significant part to play in the decision making processes of the Committee back in June.

PRAC recommends strengthening the restrictions on the use of valproate in women and girls

Women to be better informed of the risks of valproate use during pregnancy

The EMA’s Pharmacovigilance and Risk Assessment Committee (PRAC) has recommended strengthening the restrictions on the use of valproate medicines due to the risk of malformations and developmental problems in children exposed to valproate in the womb.

Valproate should not be used to treat epilepsy or bipolar disorder in girls and in women who are pregnant or who can become pregnant unless other treatments are ineffective or not tolerated. Women for whom valproate is the only option after trying other treatments, should use effective contraception and treatment should be started and supervised by a doctor experienced in treating these conditions.

Women who have been prescribed valproate should not stop taking their medicine without first consulting their doctor.

In countries where valproate medicines are authorised for the prevention of migraine, women must not use valproate for preventing migraine when they are pregnant. Pregnancy should be excluded before starting treatment for migraine, and women should use effective contraception.

The PRAC also recommended that doctors who prescribe valproate provide women with full information to ensure understanding of the risks and to support their decisions.

These recommendations follow a review of available data on the effects of valproate exposure during pregnancy. During the review the PRAC also consulted representatives of patients and families who have been affected as well as a group of experts and specialists. While valproate remains an option for patients where other treatments have failed or are not tolerated, the Committee concluded that women and healthcare professionals need to be better informed about the risks of valproate exposure in the womb and of the need for effective contraception.

Recent studies have shown a risk of developmental problems of up to 30 to 40% in pre-school children exposed to valproate in the womb, including delayed walking and talking, memory problems, difficulty with speech and language and lower intellectual ability.

In addition, data show that children exposed to valproate in the womb are at an approximately 11% risk of malformations at birth (such as neural tube defects and cleft palate) compared to a 2 to 3% risk for children in the general population. Available data also show that children exposed to valproate in the womb are at increased risk of autistic spectrum disorder (around 3 times higher than in the general population) and childhood autism (5 times higher than in the general population). There are also limited data suggesting that children exposed to valproate in the womb may be more likely to develop symptoms of attention deficit hyperactivity disorder (ADHD).

The PRAC recommended that educational materials should be provided to all healthcare professionals in the EU and to women prescribed valproate to inform them of these risks. Doctors will be required to review the treatment of girls and women on a regular basis, including at puberty and when a woman plans to become pregnant. The PRACemphasised that women should not stop taking valproate without first consulting their doctor.

See this link for full details

http://www.ema.europa.eu/ema/index.jsp?curl=pages%2Fnews_and_events%2Fnews%2F2014%2F10%2Fnews_detail_002186.jsp&mid=WC0b01ac058004d5c1

Contact Details

 

DO YOU REQUIRE ADDITIONAL SUPPORT?

Health, Education, Social Care, Community Groups or Just a Chat

PLEASE EMAIL US NOW WITH YOUR REQUIREMENTS TO

enquiries.oacs@gmail.com

 

For more information about Fetal Anti Convulsant Syndrome you can contact us between

12pm – 3pm Monday – Friday

Deborah Mann

Tel:0208 3869271 Mob:07833 563778

6pm – 8pm Monday-Friday

Call:- Jo Cozens

07940 002377

Outside of these times you, can email a call back request to enquiries.oacs@gmail.com

Also please visit our Facebook Support Page

Email: enquiries.oacs@gmail.com

by Post

Organisation for Anti Convulsant Syndromes
23, Morriston Close,

South Oxhey, Watford, WD19 6UB.

For O.A.C.S Republic of Ireland

Contact:-

O.A.C.S Liaison Officer for Ireland:-  Karen Keely Walsh

Email: karen7411@live.ie

 

Contact us for caring and understanding support.

REMEMBER! We’ve experienced this too!