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February 2023 Update: 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. Read more about the Adoption UK findings and pressure they are putting on the NHS HERE
FASD NICE QUALITY STANDARDS; 2022 brings the publication of the standards for FASD; a HUGE shift change for services to adapt to meeting the needs of families..... we look forward to the journey ahead!
Quality Statements:
Statement 1 Pregnant women are given advice throughout pregnancy not to drink alcohol.
Statement 2 Pregnant women are asked about their alcohol use throughout their pregnancy and this is recorded.
Statement 3 Children and young people with probable prenatal alcohol exposure and significant physical, developmental or behavioural difficulties are referred for assessment.
Statement 4 Children and young people with confirmed prenatal alcohol exposure or all 3 facial features associated with prenatal alcohol exposure have a neurodevelopmental assessment if there are clinical concerns.
Statement 5 Children and young people with a diagnosis of fetal alcohol spectrum disorder (FASD) have a management plan to address their needs.
For full details please find details:
https://www.nice.org.uk/guidance/qs204/chapter/Quality-statements
SEPTEMBER 2021 LOCAL SUCCESS CELEBRATED: One of our lovely members daughters drew a picture of herself to raise awareness during FASD awareness month.... it has been celebrated widely and is presented with other children's proud work.... make sure you have a tissue in your hand when watching this clip! https://www.youtube.com/watch?v=8flFrwtN0IE
FASD in Special Needs Jungle Article
OCTOBER 2021 BBC NEWS: BBC Somerset Amanda raised the huge challenges parents face on a day to day basis in the South West but highlighted the lack of diagnosis across the South West.
BBC News: https://www.bbc.co.uk/news/uk-england-somerset-58790874
BBC Somerset Radio: Amanda being interviewed for BBC Spotlight.
https://www.bbc.co.uk/.../play/live:bbc_radio_somerset_sound
OCTOBER 2021 National Radio Womans Hour:
National FASD’s Joanna Buckard, and Jan Griffin, birth mum to an amazing young adult with FASD, were interviewed on BBC’s Woman’s Hour, on BBC Radio 4!
Discussing the recent prevalence study from the University of Salford, Jo said: "National FASD has been calling for this kind of study for about 20 years ... The difference that this can make is that people can now recognise that FASD is real, that it exists, and can't be denied anymore."
When asked about her experiences with FASD understanding in the healthcare system, Jan said: "I hadn't even heard of FASD. Not once was I asked by a midwife 'do you drink?'. ... I was told not to smoke, I was told not to eat cheese! ... but never once was a I told not to drink."
This is a hugely important topic that needs more airtime! You can listen to their interview using the link below, from 49.37.
Listen here: https://bbc.in/2YnDzgD
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