Report of Gateshead Hospitals NHS Foundation Trust
Minutes:
The Committee received a report and case study on the harmful effects of alcohol in pregnancy, with a focus on the situation in Gateshead.
A detailed case study was provided to the Committee which identified the circumstances around a child in Gateshead who has been diagnosed with Foetal Alcohol Spectrum Disorder.
It was reported that 1-2% of children and young people in Gateshead are affected by alcohol consumption during pregnancy, but it was acknowledged that this could actually be as high as 2-5%. It was also noted that within the looked after children population there is a high concentration of children and young people diagnosed with foetal alcohol spectrum disorder.
It was noted that this can often be misdiagnosed as autism or attention deficit disorder. It was also suggested that often there will not be a diagnosis of foetal alcohol spectrum disorder because of the stigma attached. A study undertaken by SCOPE found that 75% of women in the UK reported drinking alcohol at some point in pregnancy.
Clinical features of children with foetal alcohol spectrum disorder can include neurodevelopmental difficulties in areas of; attention, adaptive behaviour, language, memory, motor skills, social communication and sensory integration.
It was questioned as to what evidence has been published to prove foetal alcohol spectrum disorder is a recognised disorder. It was clarified that this is recognised by the Royal College of Paediatricians and is known both nationally and internationally and is a validated condition. The British Medical Association published information in 2007 and updated in 2016 around the disorder. It was confirmed that this exists within neurodevelopmental disorder DSM5 and can be evidenced. It was noted that there is no test for it but there are diagnostic tools which are also used in other countries. It was reported that the Royal Holloway in London recently held a conference around this issue. It was acknowledged that there is an overlap between foetal alcohol spectrum disorder and other disorders, for example it is probable that 50% of children with ADHD will be due to exposure to alcohol.
The point was made that many women would not admit to drinking during pregnancy therefore how can there be a proven link if there is no certainty as to whether the mother has consumed alcohol. It was acknowledged that the disorder cannot be diagnosed with a test, however children affected all display the same characteristics. It was also noted that within foetal alcohol spectrum disorder there is widespread damage and all children can vary within that, for example ADHD is one of the features. However, by just recognising a child having ADHD ignores a wider range of issues in children with foetal alcohol spectrum disorder, such as learning difficulties and expressive language disorder. Foetal alcohol spectrum disorder was likened to autism spectrum disorder which had a huge surge in the 1990’s when the diagnosis widened.
It was queried as to how many of the clinical features identified would a child need to have in order to be diagnosed with foetal alcohol spectrum disorder as some could be attributed to environmental factors. It was clarified that there is a four digit classification and strict guidance as to how many clinical features a child would need before it could be diagnosed.
It was clarified that not all mothers who drink during pregnancy would go on to have a child with foetal alcohol spectrum disorder. It was also noted that looked after children are not being labelled but due to their backgrounds there is a higher concentration of this disorder within that population. The point was made that within the looked after children population there is 83% placement stability, which is extraordinarily high, therefore regardless of the circumstances of some of these children and young people the situation is being managed well.
It was questioned as to what is being offered to these young people which is different to other young people. It was confirmed that a lot of work is being done with foster carers to help them support children in their care through different strategies, schools are also being supported and a lot of resources are being offered to teachers. It was also pointed out that there is a comprehensive directory of foster carers receiving training around behaviour management.
It was questioned what more could be done to promote no alcohol in pregnancy. It was confirmed that there is a champion group looking at preventative measures. It was also noted that Public Health continue to raise the ‘0 for 9 months’ message across the population. The point was made that in other countries, such as Canada, a lot more education work is done in schools around this.
It was acknowledged that this is a growing problem and that the Health and Wellbeing Board looked at the issue two years ago, at which time the Chief Medical Officer was written to for better guidance.
It was questioned what proportion of the general population might be affected by foetal alcohol spectrum disorder. It was confirmed approximately 1% aged between 0-19 years, this equates to 500 children and young people in Gateshead, however this is more likely to be around 2-3% from the information identified in the Public Health Survey.
The point was made that if there is 1% of the population affected yet 75% of women drink during pregnancy is the data skewed to heavy drinkers or those with a genetic disposition. It was confirmed that there has been a case where the mother drank two bottles of wine per day during pregnancy and her child is fine, therefore there is variation on gender and parent and there is lot not yet understood around children’s genetics. It was therefore suggested that by and large this disorder is due to genetic disposition and is skewed towards people who are heavy drinkers yet stigmatising all women who drink even a small amount during pregnancy. The point was made that there is a stigma in society, similarly if a pregnant woman smokes.
It was clarified that no amount of alcohol is safe during pregnancy and it is important that men support women to abstain from drinking for nine months.
It was suggested that the diagnostic rate is high for looked after children and higher than UK estimates. It was clarified that there is a high rate of the disorder in looked after children and that paediatricians will not just label children. It was noted that more Social Workers are asking for children to be looked at as it becomes more recognised.
It was queried as to the international picture and if other countries became aware of this earlier. It was confirmed that in 1966 a diagnostic tool was established, in Canada, Australia and South Africa, due to its indigenous population. It was acknowledged that Britain is very slow in comparison, although there is the biggest database in Gateshead this is not comprehensive. It was noted that Britain has not moved yet other countries have done massively more. Although Britain has recommended zero alcohol in pregnancy from January 2016, this is the only country not to have done so earlier.
It was questioned what facial characteristics a child with foetal alcohol spectrum disorder would display. It was confirmed that the child may be petite, have a flattened philtrum, widely set small eyes and lower set ears, birth defects can include hole in the heart and kidney damage.
It was acknowledged that the alcohol industry must take some blame. It was confirmed that Public Health commission Balance who lobby for minimum unit pricing.
RESOLVED - That the Committee agreed to allow more time for Public
Health and other professionals to understand the study further before accepting the recommendations set out in the report.