Nine in ten young people with FASD reach adulthood without a diagnosis.
The diagnosis is not a label; it is essential for getting the appropriate informed reasonable adjustments and support that is needed for people with FASD to thrive. If 90% don’t even know that FASD exists, let alone that they have been affected by it, then they will not be thriving.
From published documents -
It is assumed that 3% of all children and young people in the area have FASD in the Cambridgeshire & Peterborough Joint Strategic Needs Assessment?
That isn’t are diagnosed with it, but have it, most without a diagnosis.
How can each council claim to be meeting its main aim for children and young people if they ignore FASD?
Without proper understanding and support they are vulnerable, unsafe, have poorer self-esteem and will not reach their full potential.
In our own 18-year-old cohort that is around 404 of the 449 young people likely to have FASD. They will have been to school, sat exams, seen a GP, perhaps come to the attention of children's services — and nobody will have named what is going on.
This is not a soft cost. National FASD's modelling puts the lifetime cost of an undiagnosed case 20% higher than a diagnosed one: £431,802 against £359,835. The report is blunt about why. Money gets spent late, in crisis, and in the wrong places, because the need was never recognised early enough.
A diagnosis is not a label. It is a plan. It tells a school what to adapt, a carer what to expect, a benefits assessor what they are looking at and a young person that they are not lazy or difficult.
We call on the East Central Integrated Care Board to implement the statements from the NICE Quality Standard 204 (FASD) published in 2022 so that everyone who may have FASD has access to a pathway to be assessed for this lifelong condition. Unless the medical profession lead on identifying all of the 3% of children and young people who have FASD how can any other body respond?
(Cambridgeshire and Peterborough ICB was absorbed into the East Central ICB in April 2026).
Full local figures: https://www.fieldofenterprise.org/blog/the-cost-of-inaction-in-peterborough-cambridgeshire-2026-relating-to-fasd
Cambridgeshire and Peterborough can and must do better.
#FASDGrowsUp #EveryonePlaysAPart #FASD #CentraleastICB
These posts across September 2026 are only possible due the support of the National Organisation for FASD. In June 2026, the Charity published an in depth look at the cost of FASD in the UK. professional AI software was used to interrogate available national data so that a detailed report could be written about the impact of FASD to the UK. That report can be found here. https://nationalfasd.org.uk/the-cost-of-inaction-on-fasd/ After a discussion about whether the same software could be used to drill down into locally available data and interesting set of information appeared for Cambridgeshire & Peterborough as well as another set for Hertfordshire where the National Organisation has its office. The following posts reflect the information gathered for Cambridgeshire & Peterborough Please search my other posts / blogs throughout FASD Awareness month 2026 for a full picture of the current situation and needs in Peterborough & Cambridgeshire UK. Brian Roberts September 2026
