Abstract
In Scotland, despite high levels of alcohol use by women, public awareness and professional knowledge of the risks of drinking while pregnant are low and there has been very little research into foetal alcohol spectrum disorders (FASD) and their effects. Recently, however, the Scottish Government has shown leadership with the commissioning of an FASD e-learning resource from NHS Education Scotland, the development of a toolkit for FASD Awareness Day and the planned institution of two two-day intensive training courses for health and social care professionals in the recognition, assessment, diagnosis and support of children affected by foetal alcohol harm. This article charts some of these developments.
Introduction
Worldwide it is estimated that FASD affects around one in every 100 births (May and Gossage, 2001). In Scotland, in part because the conditions forming the spectrum are poorly recognised, despite high levels of alcohol use in women and therefore a high potential for harm to occur, the incidence is unknown. Awareness of the condition among the general public across the UK is poor (Mukherjee, et al., 2015). Furthermore, professional knowledge and awareness are low (Carswell, 2007; Mukherjee, et al., 2013) with health and social care professionals having experienced working with a child with FASD on only a few occasions, not feeling comfortable in making the diagnosis and in understanding effective management. However, there is an appetite among professionals for learning, for which there was no readily available product to fill the gap (Carswell, 2007; Watts, 2005).
There is no known amount, type or timing of alcohol that is safe in pregnancy and therefore the Scottish Chief Medical Officer’s advice is to avoid alcohol when pregnant or trying to conceive (NHS Health Scotland, 2010). Alcohol use in Scotland is high with alcohol sales of 11.2 litres of absolute alcohol for every adult over the age of 16 (NHS Health Scotland, 2013). Self-reported accounts of women’s drinking indicate that more than 40% of those of reproductive age (16–44 years) exceed the recommended maximum daily and/or weekly consumption guidance (Scottish Government, 2014). This may place a large proportion of pregnancies at risk of alcohol exposure in utero, particularly in the early weeks when the foetus is developing rapidly and before the woman may know she is pregnant.
Although FASD is relatively more common in the offspring of women who are dependent on alcohol, the majority of cases occur in the children of women who have other drinking patterns including binge drinking. There are many other factors that help determine which children will be affected by maternal alcohol use, e.g. maternal nutritional status, genetic makeup, including how alcohol is metabolised, stress and deprivation.
Since FASD is not a condition that requires hospitalisation, it tends to be very difficult to identify the number of affected individuals. Other countries such as Canada, USA, France, South Africa and now Russia and Australia are considerably further ahead than the UK in recognition and it is considered that the worldwide incidence of FASD is around one per cent of live births. FASD is a lifelong and irreversible condition although early interventions are known to produce better outcomes (Streissguth, et al., 1996; Streissguth, et al., 2004).
Foetal Alcohol Syndrome (FAS) was recognised and named in the early 1970s and the first Scottish paper looking at a series of children born in the West of Scotland was published in 1981 (Beattie, et al., 1981; Beattie, Day and Cockburn, 1983).
The origins of action in Scotland
In Scotland there has been direct national action on addressing foetal alcohol harm since 2009. However, even before that time, a national target for alcohol screening and brief interventions in maternity services, although not formally connected to reducing the incidence of FASD, was beginning to have an impact in raising awareness of the frequency of alcohol use in pregnancy and the actions that could be taken to reduce consumption and harm.
In February 2009 the Scottish Framework on alcohol problems was published. This was built around challenging and changing the alcohol culture of Scotland and included actions to sustain alcohol brief interventions in maternity care (Scottish Government, 2009). Action 8 stated the commitment to arrange a survey of the incidence of FAS, the most readily recognised presentation of foetal alcohol harm. However, while the commitment had been made, there was no infrastructure through which this could be achieved. The first action that the Scottish Government took was to draw together a group of interested and knowledgeable professionals from across the health, education and social care sectors to discuss what a surveillance programme around FAS might look like. This group was supported by Professor Philip May, who has undertaken a number of prevalence studies on the occurrence of FASD in community and school populations. The conclusion drawn by that expert group was that the ideal scenario was a longitudinal cohort study of children born to mothers whose alcohol history was contemporaneously recorded and followed up. The group recognised that such a study would be at considerable expense with meticulous planning and take several years to provide any results. As such it was considered to be unfeasible to progress.
The Scottish FAS paediatric surveillance programme
Evidence has indicated that diagnosis before six years of age is of greatest benefit to the child (Streissguth, et al., 1996). Therefore, a small group of paediatricians involved in the stakeholder event developed and proposed to the Chief Scientist and Scottish Government that they undertake a passive surveillance study. The basis of this study was to use the database of the Royal College of Paediatrics and Child Health and the Scottish Paediatric Surveillance Unit to enquire of paediatricians in Scotland on a monthly basis whether they had seen a case of FAS in a child up to six years of age. Prior to the study’s commencement, the investigators visited all major maternity and paediatric units in Scotland to talk to the paediatricians about the condition and the study. When a case was reported using the surveillance reporting form, the study’s research nurse would follow up with the clinician to ensure that the case met with the case definition and to ascertain further details regarding maternal history and child presentation. The study began in January 2010 and was funded for four years.
Alongside this surveillance study, an annual awareness-raising conference was held, initially targeting paediatricians, health visitors and midwives but latterly extending to social work and education professionals.
Three-and-a-half years into the programme, by the time of the fourth conference the study had identified a steady but small number of cases of FAS totalling 37. This remains at a low level (approximately one-tenth of the prevalence anticipated based on worldwide research), but is in keeping with other international passive surveillance studies. The low level of reporting is considered to be due to a number of factors – a lack of familiarity with clinical presentation, a lack of reliable information about maternal drinking behaviours during pregnancy and a continuing low level of awareness of FAS among clinicians – in addition to the need for referral to paediatric services, where some children may not yet present a severe enough picture to warrant referral.
Scottish Government resources
Also starting in 2010, the Scottish Government took concerted action with the establishment of a small core team, based within maternal and child health rather than alcohol policy. The team’s priorities focused on awareness-raising with professionals and wider aspects of prevention as providing the most effective approaches, and sought to work with the maternity services in engaging women with alcohol assessments in pregnancy and alcohol brief interventions.
E-learning module
As part of increasing the knowledge and awareness of professionals, NHS Education Scotland worked with the Scottish Government to commission an FASD interactive e-learning package. This was developed by Children in Scotland, a national voluntary sector agency with a special interest in FASD, together with SOFFED, a software company, resulting in an interactive, user-friendly resource. Using short presentations, video clips and quizzes to increase knowledge and understanding of the condition, this module provides a sound introduction and robust basis for learning about foetal alcohol harm. 2
FASD Awareness Day toolkit
At the ninth hour on the ninth day of the ninth month, people around the world celebrate and remember International FASD Awareness Day. The day was selected to remind participants of the need to remain alcohol free for the nine-month duration of pregnancy. Drawing on an existing small pack developed by NHS Forth Valley and Forth Valley Alcohol and Drug Partnership, the Scottish Government (2013) produced an FASD Awareness Day electronic toolkit. This provides templates for media releases, quizzes, suggested activities and key messages around the theme of avoiding alcohol during pregnancy or when contemplating becoming pregnant. It is particularly aimed at health promotion teams who are seeking a resource to use to support their local FASD awareness-raising activities.
FASD training sessions
Following the development of the e-learning module and the FASD awareness day toolkit, and alongside the annual conference from the FAS surveillance programme, it became apparent that awareness among professionals of foetal alcohol harm has been rising. The Scottish Government considered that the low level of reporting in the surveillance programme could reflect poor confidence in recognising and diagnosing FAS, and that clinicians needed support and training to be able to identify, assess and diagnose accurately. In 2012, thanks to the award of a Winston Churchill Travelling Fellowship, the co-ordinator was able to visit the Manitoba FASD Centre in Winnipeg, and through this link the Scottish Government invited the Canadian team to Scotland to help move FASD work forward across the country. The Manitoba Centre recognises that multidisciplinary teams are best placed to assess and diagnose FASD and support the management of affected children and their families. Their approach involves paediatrics, clinical genetics, clinical psychology, speech and language therapy, occupational therapy and social work as core diagnostic disciplines. Each discipline is able to conduct an assessment of the strengths and challenges of the referred child specific to the discipline, and then participate in a multidisciplinary meeting to share and discuss the potential diagnosis and future management. For a diagnosis of FASD to be made, the maternal history of alcohol use must be confirmed.
The vision for bringing the Manitoba team to Scotland was to develop local teams of health and social care professionals who were capable and confident in assessing and diagnosing FASD, understood the strengths and challenges that the diagnosis may present for the affected child and their care givers, and could incorporate this work into their everyday practice. It was intended that local teams would be developed across Scotland, thereby increasing the availability of assessment and diagnostic capabilities.
A week-long training programme was set up for November 2013 with two days of health and social care professional training in Inverness repeated in Edinburgh, and one day set aside for caregivers of children and young people with FASD in Dunblane. Considerable effort was applied to gaining a good spread of health board team attendance and teams from nine of the 14 territorial NHS health boards took part. The training focused on providing the local teams – mainly comprising paediatrics, child and adolescent psychiatry, psychology (clinical and educational), speech and language therapy, occupational therapy and social work – with the tools to assess and identify children, conduct conversations with birth families and look at the next steps for their practice.
Initial evaluation immediately after the events showed that participants felt that their knowledge of FASD had increased and that the training had really ‘hit the button’ in terms of what they needed. The responses were highly positive and very encouraging. At the end of the second day for both sets of training was a session on ‘Where next?’ This allowed teams, together with their colleagues from different localities, to consider ways in which the training could be applied to practice in their areas and produced a number of positive suggestions to better identify and serve the needs of children with FASD. Follow-up of participants at three months demonstrated that some areas had begun to change how they were assessing and addressing children and families with suspected foetal alcohol harm.
The team from Manitoba reported being so impressed with the eagerness to learn and the enthusiasm and inquisitiveness of the delegates that they wished to come back in 18 months’ time to see the progress that had been made.
Event for caregivers
Alongside the training for professionals, the Scottish Government wanted to be able to apply some of the knowledge developed by the Manitoba FASD Centre in supporting families and caregivers of children and young people with FASD. For too long, the needs of caregivers have been overlooked and their views been left unheard. The day in Dunblane allowed birth, foster and adoptive carers of children with FASD to come together, share their experiences and learn some strategies from the FASD Centre team, including the educationalist, about helping their children to maximise their strengths and overcome their challenges. The dedication of these caregivers and their willingness to enhance the care they provide was overwhelming.
Additional actions at local level
Some health board areas are taking further steps to address FASD through enhancing the contraception services for women of reproductive age. There is good evidence that effective contraception (including long-acting reversible methods such as hormonal implants or intrauterine contraceptive devices) can be of considerable value in reducing alcohol-exposed pregnancies (Floyd, et al., 2007; Peipert, et al., 2012). It is possible to provide training for addiction service nurses so that they can offer hormone implants as part of the holistic care of the woman with substance use problems, helping to increase her control over her life and moving her forwards on her recovery journey. Similarly, women attending sexual health and family planning services in some areas are beginning to be advised that when they wish to become pregnant they should cease their use of alcohol for the duration of the pregnancy.
Next steps
There is increasing evidence at health board level of a change in awareness around foetal alcohol harm and of more joined-up working and information exchange. To support this, a FASD Care Pathway is being developed which will cover babies and children up to secondary school age. The multi-agency multi-disciplinary group that is developing the care pathway is applying GIRFEC 3 principles to the work and engaging with health, education and social care professionals as well as the voluntary sector. The final product is intended to act as a decision support tool in determining appropriate courses of action to enhance the potential of the child, regardless of domestic circumstances.
Resourcing FASD work has been and remains a big issue. In the absence of a dedicated funding stream, making progress is a slow and rocky path and FASD remains the poor relation of similar sized neuro-behavioural congenital problems such as autistic spectrum disorder. I am hopeful that the work begun by Scottish Government will now be adopted by the health boards and local authorities who can work collaboratively to make a difference to the lives of the children and young people living daily with foetal alcohol harm.