Tag: FVSD

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Significant Update: Government Commits to Valproate Compensation Scheme

This week marks an important development for families affected by sodium valproate exposure in pregnancy.

As reported by ITV News Granada, the Health Secretary has publicly committed to introducing a compensation scheme for those harmed by sodium valproate before the next General Election.

For families affected by Fetal Valproate Spectrum Disorder (FVSD), this marks a significant moment and brings cautious hope.

“Given how long families have campaigned for justice, I can well understand why and they are critical, having waited so long and I have got to take that criticism on the chin.

“I am sorry to families that they have waiting so long. I am asking them to bare with me but we will get there.” Wes Streeting – Secretary of State for Health and Social Care

However, it is important to be clear about the timeline. Families have not been waiting two years for justice. It has been eight years since the Cumberlege Review was first commissioned and 6 years since its publication which confirmed that the healthcare system failed to properly warn women of the serious risks associated with sodium valproate in pregnancy. If we look back further to the collapsed Product Liability and Clinical Negligence legal actions, families have in reality been fighting for accountability and redress for well over 3 decades.

This context matters.

Last week’s Westminster Hall Debate led by Sarah Green MP , the response left many families disappointed. There was a sense that urgency was still missing. Against that devastating response, this latest commitment represents a notable shift. It signals recognition that financial redress must now move from discussion to delivery.

At INFACT, we welcome this commitment. We recognise the strength, resilience and persistence of families whose voices have driven this change. Without their determination, we would not be at this point.

We will continue to engage constructively to ensure that:

  • The compensation scheme is fair and transparent
  • Payments reflect the lifelong and complex needs of affected individuals
  • The process is timely and does not place further burden on families
  • Clear timelines and implementation details are published without delay

Families have carried the emotional, physical and financial impact of this harm for far too long. Many children are now adults living with significant disabilities. Parents are ageing. The need for certainty and practical support is urgent.

This announcement is progress. It must now lead to action.

We remain committed to standing beside and supporting every family until justice is fully achieved.

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 This Christmas, Skip the Cards – Give Hope Instead 

More and more people are choosing  not  to send Christmas cards, and instead donate what they would have spent to causes close to their hearts.

This year, if you’re thinking about doing the same, We’d love for you to consider supporting INFACT. 

INFACT exists to support families whose lives have been changed forever by exposure to Sodium Valproate and other anti-epileptic drugs during pregnancy. We are the UK’s leading national charity for Fetal Valproate Spectrum Disorder (FVSD) and Fetal Anti-Convulsant Syndrome (FACS) – a lifelong disability that affects thousands of children and their families. 

We do this because no family should face this alone – yet with no government and pharmaceutical funding and a non profit organisation, every penny we receive matters. 

💛 

Your donation helps us to:
• Provide free educational resources, practical support, and guidance for parents, carers, and professionals. 
• Run vital awareness and national campaigns to keep FVSD and FACS on the political agenda. 
• Lobby government, regulators, and MPs to push for justice, recognition, and better protections for affected families. 
• Cover essential costs that keep our helpline, website, resources, and community going strong. 

If each member and supporter donated just £5, together we could raise a remarkable amount – and make sure our voice stays loud and strong in 2026 and beyond.

This Christmas, let’s turn the love we share into real support and real change for families who need it most. 

💛✨

👉  Donate here: https://infactuk.com/donate/ INFACT

Thank you for believing in what we do, every gift, no matter the size, makes a difference. 

💛

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Supporting Families with PIP: How INFACT Helps Those Affected by Fetal Valproate Spectrum Disorder (FVSD)

At INFACT, our mission is simple but powerful: to stand alongside and support children, young people, adults, and families living with Fetal Valproate Spectrum Disorder (FVSD). As the UK’s leading national charity for FVSD, we understand the daily challenges families face and the barriers they often encounter when accessing Personal Independence Payment (PIP) and other support.

Many parents and carers tell us that securing PIP for their child or adult family member with FVSD can be stressful and overwhelming. PIP is designed to help disabled people manage the extra challenges and costs of daily living. Yet families often struggle to communicate the full impact of FVSD, despite it being a government-recognised lifelong disability and recognised by the NHS England , MHRA and World Health Organization.

Why We Created PIP Support Resources

FVSD affects nearly every aspect of daily life. From learning, memory, and communication, to mobility, mental health, and independence. Individuals with FVSD often require ongoing supervision, prompting, and support to safely manage everyday tasks. Without financial assistance, families face additional costs for care, therapies, transport, and essential daily living needs.

To address this, INFACT has developed official supporting letters and factsheets for families to attach to their PIP applications. These resources clearly explain how FVSD meets PIP criteria and provide families with the authority and credibility of a national charity supporting FVSD.

How INFACT Supports Families

As the UK’s leading charity for FVSD, INFACT has been at the forefront of raising awareness, campaigning for recognition, and working with government, healthcare professionals, and organisations such as the World Health Organization. Our support is practical as well as advocacy-driven:

  • We provide PIP guidance and supporting letters for families affected by FVSD.
  • We offer information on daily living support, therapies, and care options.
  • We connect families with a community of parents, carers, and individuals who truly understand the challenges of living with FVSD.

Ensuring Families Get the Support They Deserve

Our goal is to make sure families are not left navigating the benefits system alone. The INFACT PIP Support Pack helps families demonstrate the full impact of FVSD on mobility and daily living, giving them the best chance of securing the support they need.

We are here to ensure that every person affected by FVSD can access the care, resources, and financial assistance they require to live as safely and independently as possible.

2 PIP Support Pack for FVSDDownload

Can I Use INFACT’s PIP Support Resources if My Child Hasn’t Been Diagnosed with FVSD?

Yes – and we strongly encourage you to do so.

At INFACT, we believe that any child exposed to sodium valproate during pregnancy should be considered at risk of Fetal Valproate Spectrum Disorder (FVSD), even if a formal diagnosis has not yet been made. This view is supported by the UK Medicines and Healthcare products Regulatory Agency (MHRA) and by leading clinical guidance.

Many children affected by valproate exposure may show subtle or evolving symptoms, such as learning difficulties, developmental delays, or sensory sensitivities, which can make diagnosis challenging. A lack of formal diagnosis does not mean that a child does not experience the day-to-day difficulties that FVSD causes.

For the purposes of Personal Independence Payment (PIP):

  • The focus is on how your child’s condition affects their daily living and mobility, not solely on the presence of a formal label.
  • Families can use our support letters and factsheets to clearly explain the impact of valproate exposure, highlighting practical examples of assistance, supervision, or adaptations that your child requires.
  • Including information from a recognised charity like INFACT adds credibility and supports your evidence, regardless of formal diagnosis.

In short: If your child was exposed to valproate in utero and experiences challenges in learning, mobility, personal care, or daily functioning, you should use our PIP support resources. They are designed to help you explain the real-life impact of FVSD and secure the support your child needs.

At INFACT, we continue to fight for recognition, justice, and support for families living with FVSD : because no family should have to face these challenges alone.