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.

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.