Analysis

Why it is vital to diagnose fetal alcohol syndrome disorders

The exposure of children to alcohol in the womb is a growing problem in the UK and there are calls for specialist services to address the issue

The exposure of children to alcohol is a growing problem, yet there is only one specialist clinic for fetal alcohol syndrome disorders in the UK

  • Lack of dedicated services means many families in the UK are going without support
  • Department of Health and Social Care has asked NICE to develop a quality standard on fetal alcohol syndrome disorders (FASD)
  • Call for FASD to become a core part of professional training for nurses and health visitors
Child with fetal alcohol syndrome disorders
Picture: Getty

Fetal alcohol syndrome was first recognised in the early 1970s, but more than 40 years on remains on the margins of NHS care.

This is clear from the fact that there is only one specialist clinic for the syndrome and its associated disorders in the UK, a situation that is blighting the lives of those affected, according to campaigners.

Research by the charity National Organisation for Foetal Alcohol Syndrome-UK (NOFAS-UK) earlier this year warned that the lack of dedicated services meant many families were going without support.

3% 

of babies are born with fetal alcohol syndrome disorders

Source: National Organisation for Foetal Alcohol Syndrome-UK

It found only 29% of trusts and boards in England, Wales and Scotland have diagnostic services for children, although the skills, knowledge and experience of staff involved ‘vary greatly’, the charity says.

The other route is to refer cases to the national clinic, run by Surrey and Borders Partnership NHS Foundation Trust. But many of these depend on individual requests being made under the exceptional cases funding system. This has led to several families resorting to self-funding the cost of diagnosis, the charity says.

Dedicated care and support post-diagnosis is even rarer, with most areas relying on generic occupational therapy, speech and language support, physiotherapy, learning disability and children’s mental health services to provide help.

Complex needs of people with fetal alcohol syndrome disorders

The result, the charity points out in its report A Crisis of Commissioning, is an ‘ad-hoc’ and ‘uncoordinated’ approach to the complex needs of people with fetal alcohol syndrome disorders (FASD).

NOFAS-UK chief executive Sandra Butcher says this vulnerable population is being ‘failed’, but she believes there are some encouraging signs the issue is beginning to be taken more seriously, with some areas now looking at setting up specialist services.

The Department of Health and Social Care in England has also asked the National Institute for Health and Care Excellence to develop a quality standard on FASD.

It follows on from guidelines that have been published in Scotland this year to help health professionals diagnose FASD.

9 in 10 

cases of fetal alcohol syndrome disorders do not include facial features 

Source: National Organisation for Foetal Alcohol Syndrome-UK

The guidelines have been developed by the Scottish Intercollegiate Guidelines Network, part of Healthcare Improvement Scotland, and have been based on work done in Canada, which is recognised as a global leader in FASD.

The guidelines differentiate between FASD with facial features and those without. They recommend positive diagnoses where prenatal alcohol exposure is confirmed and there is evidence of severe impairment of three or more neurodevelopmental problems.

A diagnosis of ‘at risk’ should also be available in recognition that some signs do not develop until later in childhood.

Fetal alcohol advisory and support

The guidelines form part of a concerted effort in Scotland to focus resources more on FASD. More than 300 healthcare professionals have been trained in assessment and diagnosis of FASD, including mental health nurses and health visitors.

The Scottish Government has also funded a fetal alcohol advisory and support team, which is based at NHS Ayrshire and Arran and works with health boards to support the staff diagnosing FASD.

Principal clinical psychologist Jennifer Shields says the developments show progress is being made. 

‘Things are beginning to change, but we have to remember a huge number of people are not diagnosed. Just look on the streets of any city – you will see people who are probably living with the impact of undiagnosed FASD.

‘People have gone without support – and that is hampering their future.’

Role of nurses and health visitors in identifying cases

Dr Shields would like to see FASD become a core part of professional training, believing the likes of health visitors, school nurses, learning disability nurses and community children’s nurses have an important role in identifying cases.

‘We don’t like asking about alcohol consumption – and instead what you find is that people are simply referred on to therapy without the underlying cause being identified. 

‘By doing that we are missing an opportunity to protect future children by broaching the subject of drinking during pregnancy. 

29%

of NHS trusts and boards have diagnostic services for fetal alcohol syndrome disorders 

Source: National Organisation for Foetal Alcohol Syndrome-UK

‘A diagnosis can also be important in terms of getting the right care plan and access to benefits.’

Little training on spotting the signs and on how to intervene

Institute of Health Visiting executive director Cheryll Adams agrees health visitors need more help.

‘We get little training on this – and that makes it difficult to spot the signs and know how to intervene. But even if health visitors did get training, we would also need somewhere to refer patients on and that is simply not available in most places. 

‘There is a long way to go. FASD is a huge issue and is no doubt contributing to the problems we are seeing in terms of development and behaviour.’ 

Why getting a diagnosis is important

Dr Raja MukherjeeConsultant psychiatrist Raja Mukherjee started the first NHS specialist fetal alcohol syndrome disorders (FASD) clinic in 2009. Based in Surrey, it remains the only service of its type in the health service.

He says FASD diagnostic and support remains a ‘lottery’ across the country, but hopes that will change in the future. He adds that getting a diagnosis is essential for people affected by FASD and has ‘changed the lives’ of the patients and families he has worked with.

‘If a person wants to stay well, keep themselves healthy and away from harm, they need to understand why they do things differently.’

He also says it helps to establish what treatment and support they need and the consequences they have to live with.

‘There are differences in how people with FASD present compared to other conditions and how they react to medications.’

Effects of exposure to alcohol in the womb

  • Fetal alcohol syndrome disorders (FASD) is an umbrella term that covers a range of disorders that are caused by being exposed to alcohol in the womb. It includes full fetal alcohol syndrome and alcohol-related neurodevelopmental disorder
  • Latest figures suggest about 3% of babies born in the UK may have FASD – three times the numbers that have autism
  • FASD is most commonly associated with distinct facial features – thin lips, a small gap between the eyes and a flattening of the smooth philtrum, the groove between the upper lip and nose – but only about 10% of cases involve such physical characteristics
  • People with FASD also usually have some brain damage or developmental difficulties. They are more likely to be diagnosed with autism or attention deficit hyperactivity disorder, and may also have problems with motor skills, language, memory and social functioning
  • Diagnosis is usually made by observation alongside a review of existing medical records and questionnaires. Genetic testing is recommended to rule out genetic causes. Once a diagnosis is made, detailed care plans are developed to support the individual

 

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