When it comes to your own health — or your children’s health — most people do everything they can to follow medical advice and NHS guidance. But what happens when you or your family don’t fit the “standard” picture?
What if you find yourself at the GP every week, not for minor illnesses but because something genuinely keeps happening? Before long, you’re at the surgery more often than you’re down the pub.
And what happens when you repeatedly feel unwell but are told that everything is “fine” and that it’s “just anxiety”? Over time, it can leave people questioning themselves, wondering whether they’re confused, exaggerating, or even beginning to believe they’re ill when they’re not.
This is one of the reasons why conversations around Fabricated or Induced Illness (FII) and “perplexing presentations” can be so difficult and frightening for families with complex health needs.
FII is considered an extremely rare mental health condition. Research suggests it is seen more commonly in women aged 20–40, particularly following pregnancy or significant stress, and may be more common among those with healthcare experience.
Most referrals relating to FII involve concerns about a child’s health, with healthcare professionals — especially within paediatrics — making a significant proportion of referrals each year.
However, SEND families and families where a parent or child is disabled are reported to be significantly more likely to face referrals connected to FII or perplexing presentations.
For the FVSD community, this issue can feel particularly concerning. There is still very limited NHS data regarding recurrent infections, asthma, hypoglycaemia, allergies, and other co-morbidities associated with Fetal Valproate Spectrum Disorder (FVSD). As a result, many valproate-exposed individuals may require frequent medical support, investigations, or hospital visits.
Unfortunately, this can sometimes lead to fears about not being believed or worries that genuine symptoms could be misunderstood.
One of the biggest issues raised by families is that many clinicians may have little awareness of FVSD or may not fully understand the long-term impact that prenatal sodium valproate exposure can have on physical health, neurological development, speech and language, genetics, and susceptibility to illness.
To help improve understanding and build a clearer picture of the condition and its co-morbidities, specialist NHS research clinics have now been established in Manchester and Newcastle under the name “Fetal Exposure to Medicines Clinic”.
These clinics are not simply about diagnosis. They offer comprehensive assessments looking at:
• Genetics
• Physiological changes
• Neurological symptoms
• Speech and language
• Broader health concerns
The aim is to create an individualised health passport that helps professionals better understand and support each person’s needs throughout their life.
If you or your child were exposed to sodium valproate during pregnancy and you would like an assessment, you can ask your GP for a referral to the Fetal Exposure to Medicines Clinic. Waiting times are often relatively short depending on demand.
Because understanding your health history isn’t about “proving” illness — it’s about making sure important signs aren’t missed later on.