Children waiting years for diagnosis of UK’s most common neurodevelopmental condition, charity warns

Adoption UK says the current NHS crisis could lead to even longer delays for hundreds of families awaiting an FASD diagnosis across the UK

Children and young people with a neurodevelopmental condition caused by an alcohol-exposed pregnancy often have to wait years for a diagnosis, according to a new survey by Adoption UK.

The study of 512 parents and carers found that almost two-thirds (64%) of families in the UK and Ireland where concerns were raised that a child may have Fetal Alcohol Spectrum Disorder (FASD) can face waiting times of up to two years for a diagnosis – and in some cases significantly longer.

Without a diagnosis, families are often unable to access the specialist support they need, and Adoption UK is warning that the current NHS crisis could mean hundreds of families might have to wait even longer for help.

Around 3%-5% of babies born in the UK each year have FASD, making it the most common neurodevelopmental condition in the country. The impacts of FASD on an individual can include impulsivity, impeded social skills, developmental dysmaturity and memory difficulties. However, with the right interventions and support individuals can experience positive outcomes – which is why it’s crucial that diagnosis happens as early as possible.

In addition to lengthy waiting times, our survey revealed that many parents felt medical staff were often unequipped or undertrained with regards to FASD. Two-thirds of those who responded to the survey told us they were more informed about the condition than health professionals, while just half received a follow-up report highlighting available support after their child was diagnosed.

The findings also showed that over 80% of parents and carers experienced barriers to diagnosis – including 70% whose diagnosis depended on a report confirming prenatal alcohol exposure for their child, something that many families struggle to access. More than eight in 10 (84%) felt they had not been given any information to help them as parents/carers through the assessment process.

Adoption UK is now calling for national FASD services to be established in every UK nation to ensure families seeking a diagnosis have access to expert support at every stage of their journey. The charity also wants to see improved training for health professionals and better recording of pre-natal alcohol exposure in order to speed up the diagnosis process.

Barbara Ogston leads Adoption UK’s ground-breaking FASD Hub in Scotland, and has seen first-hand how important a diagnosis is to the families they support.

She said: “FASD is the most common neurodevelopmental condition in the UK, affecting up to 5% of the population, yet there remains a lack of service provision and unnecessary challenges in accessing a diagnosis.

“Our survey reveals that not only are barriers to a timely diagnosis commonplace, but that throughout the UK there is still a need for greater support for individuals with FASD and their families throughout their lives. The current crisis within the NHS comes at a time when families are still experiencing lengthy waiting lists post-Covid, and children, young people and adults are being left without the access to assessment and diagnosis that allow them to access the support they desperately need.”

CASE STUDY

Karen lives in West Lothian with her adopted son ‘Dylan’ (not his real name), aged ten. 

We adopted Dylan when he was two. The adoption service told us that his mother had been drinking and taking drugs during the pregnancy, but at no time was FASD mentioned. It was a year later when we noticed he was behaving differently to other children and struggling to understand or remember things, and we realised we needed to get some support.

We contacted our GP and spoke to a paediatrician, but it felt like we were pushed aside and FASD was never brought up in our conversations. Instead, we felt like our parenting was being questioned, and we were sent on courses which were not relevant to us.

After Dylan started school, we could see that he was struggling with some things, but his teachers didn’t seem to share our concerns. Dylan tends to bottle things up inside, so he’d tell them he felt fine – even when we knew he wasn’t. Even our friends and family had a hard time understanding what we were telling them about FASD, so we often just told them that Dylan had autism as people know what that is.

Finally, after years of going back and forth to a paediatrician, I found out about FASD. When we bought it up, we were informed that there were no specialists in our area who could help us. We were also told that there was no local route to a diagnosis, even after facial characteristics consistent with FASD had been identified and social work reports had been obtained confirming his mother drank throughout pregnancy. It was only with the help of the FASD Hub that we managed to get an FASD diagnosis for Dylan when he was nine – after six years of waiting.

I think there needs to be more awareness of FASD among GPs, social workers, health visitors, teachers and everyone else who works with children. It needs to be investigated quicker, with shorter waiting times and faster diagnosis. I’d also like to see a specialist in every area so families can access local support. We don’t blame anyone for what’s happened to us, but it’s so important that changes are made urgently so others in our situation can get the help they need.

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