The 2022 Update on the HSE Community Operation

Families that have received a diagnosis of Foetal Valproate Spectrum Disorder/Syndrome (FVS/D) before 2021.

The Office of Dr. Colm Henry stated that all families who have previously received a diagnosis of Foetal Valproate Spectrum Disorder/Syndrome (FVS/D), WILL NOT be required to provide their Chief Officer, within their CHO Area with any documented evidence of diagnoses or an assessment of needs. These patients will not have had an assessment of needs done. The families who previously, attended genetics and who also received a diagnosis of Foetal Valproate Spectrum Disorder/Syndrome (FVS/D) only received a community operations email address. These are all families who acquired their diagnosis from previous years including any family that went to Genetics in 2019 and 2020.

For families that that are awaiting a diagnosis and / or report of Foetal Valproate Spectrum Disorder/Syndrome (FVSD) / (FVS) via London.

Dr Saggar has access to an expert multidisciplinary team (MDT) in London. He will discuss the results of each patient including genetic investigations and the results will then be sent to CHI in Crumlin. Patients will also receive a copy of assessment of their needs and FULL report from Dr. Saggar at this time. Shortly after that the Chief Officer Community Operation (CHO) in the patients area will receive a copy of the assessment of their needs/report and diagnosis and will be following up all needs requirements when they receive the report from CHI Crumlin. The patients GP will also receive a copy of Dr Saggars Report.

The CHO’S Contact Details and information you will require.

Please be advised that the contact detail below will bring you to a receptionist who may not know about Foetal Valproate Syndrome Spectrum Disorder (FVS/D). However, the receptionist will pass on your details to the correct person/s, and they will ring you back. If you do not receive contact swiftly, please contact OACS Ireland.

Families were not made aware of the risks of the medication Epilim (Sodium Valproate) if taken in pregnancy as a result, women are caring for children with lifelong and severe disabilities. It is the children and families that have gone on to suffer the consequences of poor communication by others.

OACS Ireland would suggest to each Chief Officer in all CHO Areas that when families contact you please ensure that the necessary Liaison Officers has been appointed so the arrangements/appointments can be put in place for the families impacted with FVSD through your office. We would appreciate your help and support in ensuring that families do not have to make individual appointments. The families impacted in Ireland have been through enough. We would ask all Chief Officer’s in all CHOs to treat our families with the respect and dignity they deserve. The point of contact in each CHO is subject to change overtime however, we have now uploaded the counties of your CHO and the catchment area they cover. OACS Ireland would like families to inform us if there is a change within your CHO/Liaison Officer. We can then ensure that the document is updated. OACS Ireland once again asks for our families to be to be patient as there is a process that your diagnosis / reports must go through before it reaches your CHO area.

OACS Ireland receives communication from the office of Dr Colm Henry.

A process has been put in place and the community care and supports come under the remit of the Chief Officers Community Operations (CHO) and if a business case is required this is for the CHO/HSE to complete and send to the Head of Operations; Primary Care/Asst National Director at Health Service Executive for sign off. This is not for the client or the family to complete. OACS Ireland very much welcomes this news. OACS Ireland are delighted to publicise that all families with diagnoses of Foetal Valproate Syndrome/Spectrum Disorder are now prioritised for provision of services. See attached letter from the office of Dr. Colm Henry, CCO-HSE. Link: Media File(opens in a new tab)

The Rapid Assessment Report Figures on how many potential children that were exposed to Epilim (Sodium Valproate in utero 1975 to 2015.

The Rapid Assessment Report aims to provide an estimate of the likely prevalence of specific major congenital abnormalities and neuro-developmental disorders associated with the drug (known as FVS/D – Foetal Valproate Syndrome/Spectrum Disorder). Until now, there has been no Irish data on this, but estimates are vital in planning the services and supports that affected families require. The HSE estimate that 3,162 children in Ireland were potentially exposed to Epilim (Sodium Valproate) in utero from 1975 to 2015.

• Between 1975 and 2015, approximately 3,083 maternities were in women who were taking valproate when becoming pregnant.
• Between 1975 and 2015, approximately 3,126 babies were potentially exposed to valproate in utero.
• Of these, it is estimated that 873 were born between 2000 and 2015 (i.e., currently 18 years old or younger).
• From 1975 and 2015, between 153 and 341 children will have experienced a major congenital malformation and up to 1,250 children will have experienced some form of neurodevelopmental delay following exposure to valproate in the womb.
• An estimated 43 – 95 children under the age of 16 today will have experienced a major congenital malformation as a result of valproate exposure and 349 will have experienced some form of neurodevelopmental delay.

2018 The Final report  SV Rapid Assessment

2018 Breakdown of final report  HSE Report on prenatal exposure