Despite high levels of prenatal alcohol exposure in the UK, evidence on the prevalence of Fetal Alcohol Spectrum disorders (FASD) is lacking, although it is thought that somewhere between 3% and 6% of children may be affected. FASD causes significant neurological problems with lifelong implications for the effected individual, their families, including increased interaction with health services, social care and the criminal justice system. This project, the first of its kind in the UK, aims to estimate how common FASD is, by identifying children (aged 8-9 years) with developmental disorders in mainstream schools.
Using a gold-standard case ascertainment method, all children in the selected age group are invited to initial screening, high risk individuals are identified then invited to further assessment, which includes validated tools for the measurement of neurodevelopmental, cognitive and socio-adaptive skills (including WISC V—UK Edition—and NEPSY II), maternal risk history, facial photography and DNA micro analysis to detect (and rule out) genetic conditions as a possible cause of any difficulties.
At the moment in the UK, support for families and individuals with FASD is lacking, in part because there is no direct evidence that FASD affects such a large proportion of the population. It is hoped the study will provide accurate prevalence data for FASD and other developmental disorders in Greater Manchester to inform policy and provision for the support of children with additional needs.
The work is part of a wider programme of activity in Greater Manchester, aimed at reducing alcohol exposed pregnancies.
“With your specialist knowledge and subject matter expertise we were able to build a compelling narrative, investment proposition and suite of proposals which position GM as a potential world leader in tackling this issue. Your support provided the ‘academic scaffolding’ that underpinned this work and gave it the necessary rigour and credibility, which was critical given the dearth of evidence around this important issue. As a consequence, we have successfully drawn down over £1.6million of investment from the GM Health and Social Care Partnership transformation fund to test our proposed model and we are now embarking on the journey to implementation”David Boulger, Head of Population Health Transformation
“At the start of the research project we were two parents fighting our way through a daily battle with a mixture of emotions and fears. We had a beautiful daughter who was very different not only to her peers but to her siblings also. Life was hard and we were not always confident we were doing the right things… Having received your report today I’m now confident that we’re doing the right thing and we can encourage [our child] to live her best life with our support… So I would like to say a huge thank you to you and your team for taking the time to listen to our concerns and providing us with some informative advice. Although we know we have a long way to go life is looking much different already.”
“So much specific information on (my child) I kind of thought it was just a general study … I didn’t expect it to be so detailed… it was better than I expected”
“My child was happy with it (taking part in the study) cos obviously I asked her, and she was comfortable with everything you asked her to do. So yeah … it was a positive thing”Parents of children with neurodevelopmental conditions identified by the study
Funder: Greater Manchester Health and Social Care Partnership
Team: Penny A. Cook, Clare Allely, Alan Price, Robyn McCarthy