1

Winston Churchill Memorial Trust

Travelling Fellowship 2012

PREVENTING AND ASSESSING

FETAL1 ALCOHOL HARM IN SCOTLAND

Learning from the experts –

moving Scotland and the UK forward

in addressing fetal alcohol harm

Dr Maggie Watts

MB BS FFPH

1 Throughout this report, the internationally recognised spelling of ‘fetal’ is used in place of ‘foetal’.

2

CONTENTS

Page

1. Acknowledgements 3

2. Executive summary 4

3. Introduction 6

4. Background 7

5. Aims and objectives 9

6. Itinerary 11

7. Key findings 14

7.1 Finland 14

7.2 Eastern Canada 16

7.3 Western Canada 22

8. Learning points 27

9. Next steps 29

3

“Healthy citizens are the greatest asset any country can have.”2

It could be argued that we all have a responsibility to look after each other, and to

be particularly watchful towards those who are less equipped and able to look after

themselves. Although the wartime circumstances that led to that speech being

orated no longer exist, the philosophy of that quotation is perhaps particularly apt

when we are presented with a preventable condition that is impeding the

optimisation of health and attainment in our children.

1. Acknowledgements and thanks

I am truly grateful to the Winston Churchill Memorial Trust for awarding me a

Winston Churchill Travelling Fellowship. Without this assistance, I would not have

been able to travel to and learn from those areas of the world where the prevention,

identification and management of fetal alcohol harm is commonplace. I am also

grateful to those who have so ably and willingly assisted me with the Fellowship

work, especially Moira Plant in the UK and Nancy Poole in British Columbia who

generously provided me with contacts, advice and wisdom.

Special thanks are owed to:

Finland – Ilona Autti Rämö, a fantastic and wise guide, paediatric neurologist and

researcher

Canada – Holly Gammon, Healthy Child Manitoba FASD Programme, a truly

welcoming and knowledgeable programme leader

- Scott MacDonald, Centre for Alcohol Research-British Columbia (CAR-BC),

for his hospitality and strong awareness of alcohol related harms

- Jessica Moffatt, Institute of Health Economics, Alberta, a most open-

hearted and friendly host.

And to all the projects and people I visited who gave so generously of their time,

knowledge, advice and support (and paperwork!) – and who continue to do so now

that I am back in Scotland.

All the views expressed here are my own. 2 Sir Winston Churchill. A four year plan for England. 1943 Vital Speeches of the Day, Vol. IX, pp. 386-391

4

2. Executive summary

Fetal alcohol spectrum disorder is the name given to the range of permanent lifelong

disabilities, in which the brain effects often predominate, caused by maternal

consumption of alcohol in pregnancy. The UK has been slow in recognising FASD

whereas other countries, notably North America, have led the way in diagnosing and

managing the condition. However, the UK consumes more alcohol per capita than

the United States of America or Canada, and it is highly likely that the prevalence of

fetal alcohol harm is at least as high as that of North America.

My Winston Churchill Fellowship was designed to allow me to visit a country

(Finland) where alcohol use is high and similar to the UK, particularly in women, in

order to assess the strategies being used to address drinking in pregnancy, and a

country (Canada) where the potential for FASD forms the basis of preventative,

assessment and management programmes.

During my stays, I was able to visit services and discuss all aspects of FASD, from

prevention through to management with clinicians, service providers, policy makers

and strategists at local, state and national level. These experiences have led me to

conclude that:

FASD is much more common in the UK than is presently evidenced.

the Scottish Government policy of reducing whole population alcohol

consumption is valid but requires targeting so that there is a consistent

message for everyone to support women in avoiding alcohol when

contemplating and during pregnancy.

the midwifery services that provide antenatal care for the vast majority of UK

women are ideally placed to screen women early in pregnancy for their

alcohol use from conception, and to provide a brief intervention when any

alcohol has been used. They are also well placed to identify women at high

risk of an alcohol-exposed pregnancy (AEP), to co-ordinate the specialist

addiction support the woman may require, and to link to post-natal services

for follow up of the child.

5

we need to ensure that approaches and attitudes towards women with

alcohol or substance use problems are gender- and trauma-informed.

one of the most powerful mechanisms for FASD prevention in women who

have alcohol use/ substance use problems is the ready availability of long

acting reversible contraception, delivered in services that women access by

staff who are non-judgemental, supportive and approachable.

understanding the phenotype of the child with FASD is critical to successful

identification and management.

every child with FASD has strengths and challenges for which early

identification enhances the outcome.

6

3. Introduction

Scotland has an alcohol problem. Across our society, alcohol plays a major role in

ritual and celebration – a shared bottle of wine over the evening meal;

congratulations for the new job/ house/ car; ‘wetting the baby’s head’ – alcohol is

ubiquitous. The annual consumption of 11.2 litres (21.9 units/week) of absolute

alcohol for each adult aged 16 years and over in Scotland is 20% higher than that for

adults in England and Wales.3

Recommended maximum consumption agreed by the UK Chief Medical Officers are

2-3 units a day (14 units a week) each for women and 3-4 units a day (21 units a

week for men), with two days a week alcohol-free. More recently, Scotland’s Chief

Medical Officer has stated that women should avoid alcohol when pregnant or

contemplating pregnancy4; in England and Wales the advice has remained that,

should a woman choose to drink, she should not drink more than one or two units of

alcohol once or twice a week and should not get drunk5.

Alcohol’s harm to Scottish society is well recognised and reflected in alcohol related

hospital admissions, alcohol related deaths, drink driving convictions and road

collisions, alcohol-fuelled violence and disorder, congesting our health system, courts

and prisons. Three quarters of prisoners have an alcohol use disorder6; 17% of

domestic fires are alcohol related7 and 37% of severe injuries admitted to accident

and emergency were alcohol associated8.

But one statistic that is much less well known, almost unheard of in Scotland and the

UK, is that as many as 1% of the population may have fetal alcohol harm9,10.

3 NHS Health Scotland. An update of alcohol sales and price band analyses. Measuring and Evaluating Scotland’s Alcohol Strategy 2012. (Accessed at http://www.healthscotland.com/uploads/documents/20287-MESAS%20update%202012%20-%20briefing%20paper.pdf June 2013) 4 Health Scotland 2010 http://www.maternal-and-early-years.org.uk/alcohol-use-recommendations-for-pregnant-women 5 NHS Choices online 2013 http://www.nhs.uk/conditions/pregnancy-and-baby/pages/alcohol-medicines-drugs-pregnant.aspx 6 Parkes T, MacAskill S, Brooks O, Jepson R, Atherton I, Doi L, McGhee S, Eadie D. Prison health needs assessment for alcohol problems. University of Stirling 2010 7 Statistical Bulletin Crime and Justice Series: Fire Statistics Scotland, 2011-12. National Statistics Scotland 2012. (Accessed at http://www.scotland.gov.uk/Publications/2012/10/3628/0 June 2013) 8 Scottish Trauma Audit Group. STAG Audit Annual Report 2012. 9 Abel EL, Sokol RJ. A revised conservative estimate of the incidence of FAS and its economic impact. Alcohol Clinical and Experimental Research 1991;15:514-24. 10 Sampson PD, Streissguth AP, Bookstein FL, Little RE, Clarren SK, Dehaene P, Hanson JW, Graham JM Jr. Incidence of fetal alcohol syndrome and prevalence of alcohol-related neurodevelopmental disorder. Teratology. 1997 Nov;56(5):317-26

7

4. Background

Fetal alcohol spectrum disorder is a term used to describe the continuum of

permanent, lifelong disabilities resulting from maternal consumption of alcohol during

pregnancy. People with FASD can struggle with everyday living, such as with forming

and maintaining relationships, with managing money and looking after themselves,

with keeping time and therefore holding down a job, and with accidents, injuries and

crime through not understanding risk.

Fetal alcohol syndrome is the most recognised diagnosis in the disorder as it has

characteristic facial features and growth delays, but is thought to account for only

around ten to twenty percent of the spectrum. Worldwide, it is estimated that the

prevalence of FASD is around one in a hundred births11, making it the commonest

non-genetic preventable cause of learning disability and presenting a massive

challenge to governments, policymakers and planners.

Whilst fetal alcohol harm occurs more commonly in women who are alcohol

dependent, not all women with alcohol dependence give birth to children who have

FASD, and the majority of cases are born to mothers who are not dependent. Heavy

drinking and binge drinking patterns of alcohol use are considered to be the most

harmful.12 The timing of alcohol exposure influences the nature of the condition, with

alcohol exposure early in pregnancy (before the woman may realise she is pregnant)

leading to the characteristic physical features of FAS, whilst the brain develops

throughout pregnancy and alcohol use at any time may cause damage.

With research on the prevalence of FASD, there has come increasing recognition of

the extent and severity of the condition across all sectors of the population and of the

impacts on health, social welfare, youth and adult justice, housing and independent

11

May P, Gossage JP. Estimating the Prevalence of Fetal Alcohol Syndrome. A Summary. Alcohol Research and Health 2001; 25:3 : pp159-166 12

Chudley AE, Conry J, Cook JL, Loock C, Rosales T, LeBlanc N. Fetal alcohol spectrum disorder: Canadian

guidelines for diagnosis. Canadian Medical Association Journal 2005 vol. 172 no. 5 suppl S1-S21

8

living services. FASD is not constrained by social constructs; it can affect all sectors

of the population, although it is more commonly recognised in more deprived

communities (which includes much of the Native American population) and in women

with substance dependency. There is a clear need to focus efforts on maximising

care before, during and after pregnancy for this group of women. However, the

majority of babies with FASD are born to mothers who are not alcohol dependent

(around 98% of the female population), who may not be living in areas of deprivation

but who may have drinking patterns of bingeing or regular alcohol use which places

any pregnancy they have at an increased risk of being alcohol-exposed.

9

5. Aim and objectives

The aim of this Fellowship was to allow me to visit centres of excellence in countries

with significant expertise in addressing fetal alcohol harm in order to:

explore the role of the national centres of excellence and regional networks in

the development and implementation of strategy and policy for reducing fetal

alcohol harm

review and discuss national and regional strategies for preventing alcohol

exposed pregnancies

examine and review national and regional strategies for the surveillance,

screening, and identification of potentially affected children

review the organisation of diagnostic and treatment services

explore multiagency contributions to effective practice in managing fetal

alcohol spectrum disorders

identify how the experiences from these findings can contribute to the

development of evidence-based policies and practice in Scotland to reduce

the number of alcohol-exposed pregnancies and improve the outcomes for

affected children.

For my trips, I selected Finland where alcohol consumption is similar in volume and

patterns to that of the UK, and where there is a focus of robust FASD research. I also

chose Canada where FASD has been recognised for the past forty years and there

are strong practice and research communities. I had originally included the United

States but came to realise that the differences in how services are provided,

especially the universal nature of the UK’s provision for health and social care, were

sufficiently great that applicability would be limited. I therefore was able to undertake

travel to four provinces in Canada and widen my experiences of how they addressed

fetal alcohol harm across the provincial governments.

As I travelled and saw, heard and experienced how others managed fetal alcohol

harm, I refined my aims to focus on the aspects I felt most important for Scotland and

the UK – prevention as applied to women with alcohol problems (either sole or in

10

combination with drug problems) and recognition and assessment of children

affected by fetal alcohol harm.

The learning from this Fellowship is equally applicable to the other UK countries as to

Scotland. I have confined my comments on application to the Scottish context since

that is where my current role is focussed. However, I would hope that the other UK

countries are able to draw on my findings and suggested ways forward in order to

enhance all aspects of their approaches.

11

6. Itinerary

Scotland population 2012 5.3 million

Visit 1 – Week 1

August 2012 Helsinki, Finland (Finnish pop 2013 circa 5.4 million)

Date Visiting:

20th August 2012 Ministry of Health and Social Affairs

21st August 2012 1. Finnish Association on Intellectual and

Developmental Disabilities

2. Maternity service, Women’s Hospital

22nd August 2012 Social Insurance Institution of Finland

23rd August 2012 Mother and child family shelters and homes

24th August 2012 Social paediatrics and paediatric neurology,

Children’s Hospital

Visit 2 – Week 2

September 2012 Toronto & Ottawa, Ontario, Canada

(Ontario pop 2013 13.5 million)

- Week 3

September 2012 Winnipeg, Manitoba, Canada

(Manitoba pop 2013 1.2 million)

Finland

Canada

Scotland

12

Date Visiting:

17th September 2012 Justice fellow and FASD advocate, Toronto

18th September 2012 1. Public Health Agency of Canada, Ottawa

2. FASD Research Network, Ottawa

19th September 2012 1. Hospital for Sick Children, Toronto

2. Motherisk project, Toronto

20th September 2012 Breaking the Cycle project, Toronto

25th September 2012 1. Healthy Child Manitoba, Winnipeg

2. FASD Centre

3. Youth Justice Centre

26th September 2012 1. FASD Classrooms, David Livingstone School

2. Mothering project, Mount Carmel Clinic

3. Insight Mentoring, Aboriginal Health Services

4. Building Circles of Support programme, FASD

Centre

27th September 2012 FASD Community Coalitions annual meeting

28th September 2012 1. Families First Screening programme

2. Project Choices

Visit 3 – Week 4

February 2013 Vancouver & Victoria, British Columbia

(BC pop 2013 4.5 million)

Edmonton, Alberta, Canada

(Alberta pop 2013 4.0 million)

- Week 5

Feb/March 2013 Vancouver, British Columbia, Canada

During this week, I attended the 5th international conference for fetal alcohol spectrum

disorder. This allowed me to meet up with other leaders in the field who had gathered

in Vancouver for the conference and whose acquaintance I would not have made

otherwise.

13

Date Visiting:

18th February 2013 Sheway project, Vancouver

19th February 2013 Centre for alcohol research, (CAR- BC), Victoria

20th February 2013 Government of British Columbia, Victoria

21st February 2013 CAR-BC - presentation on alcohol perspectives of

FASD policy in Scotland

22nd February 2013 Travel to Edmonton, Alberta

25th February 2013 1. Psychology services, Edmonton

2. Human Services and Alberta Health, Alberta

Government

3. Presentation at IHE on developing FASD policy in

Scotland

26th February 2013 Institute of Health Economics

27th February 2013 FASD conference; catch up with FASD centre,

Winnipeg on training

28th February 2013 FASD conference; Executive Director, Northwest

Central Alberta FASD Service Network

1st March 2013 FASD conference; Executive Director, Lakeland FASD

Centre; Director, BC Centre of Excellence for

Women’s Health

2nd March 2013 FASD conference

Further details of the travels, the people I met and the services I visited are available

at the blog I wrote during these times – www.maggiewatts.wordpress.com

14

7. Key findings

7.1 Finland

Alcohol consumption in Finland is comparable with the UK. However prices are

considerably higher, with a can of cider retailing for more than €3, and the Finnish

government recognising that alcohol sales are price sensitive.

As with the UK, Finland does not know how many children have FASD but services

are aware that alcohol in pregnancy is to be avoided.

In the case of substance use, alongside the substance use midwife, the paediatrician

can be introduced to the mother antenatally as the doctor who will be following up

her child, in order to develop an ongoing and positive relationship.

Programmes such as the Mother and Child Family Shelters and Homes (Ensikoti)

focus on the woman as parent as well as substance user, targeting three aspects: -

child welfare and development, maternal rehabilitation, and the parent-child

relationship. These programmes may last up to two years and research indicates that

around a third of families who have used the service are functioning well with little

support, a second third manage with much more support and the final third are not

able to sustain family life, leading to the child being taken into care. Unlike addiction

services in the UK, the focus on recovery does not extend in to education, training

Maternity care is freely available

and midwifery-led; 99% of

pregnant women are engaged in

it with minimal private practice.

Within maternity services, women

with additional needs (including

significant medical conditions and

substance use problems) can be

routed through a single door

access clinic service to meet their

needs.

Alcohol is more expensive in Finland –

a can of cider retails for more than €3

15

and employability aspects since the Finnish welfare system provides for three years

of maternity leave.

In Helsinki, considerable leadership had been shown by the Finnish Association on

Intellectual and Developmental Disabilities around recognition of FASD as presenting

emotional and behavioural disabilities along with an intellectual disorder quite

different to other intellectual disabilities. The concept of children who are affected as

being doubly disabled – with attachment disorders due to parental substance use

and neurological damage from maternal use of alcohol causing difficulties in

behaviour and emotional regulation – was a striking one. Alongside this was the

power of stories – using foster carers to develop their testaments into life stories and

to use these in helping to train nurses, social workers and teachers about FASD.

Women’s Hospital, Helsinki

However, there was a consistent

concern expressed by all those I

met around the high risk of

women with substance use

problems and their children

dropping out of view as the

welfare system failed to identify

and catch them.

Similar concerns are expressed in

Scotland and in Canada around

the stigmatisation of addiction with

the negative public and

professional perceptions and

stereotypes.

16

7.2 Eastern Canada

Overall, there was a strong commitment to the diagnosis and management of fetal

alcohol spectrum disorders and a significant investment in this work. However there

appeared to be a complex landscape with multiple agencies involved at the various

steps in the assessment, diagnostic and management processes. From the patient’s

perspective, there was considerable potential for confusion and perhaps a need for

route maps!

Provincial infrastructure

Despite the lack of a strategy for preventing and managing fetal alcohol harm for

Ontario, there is still significant research investment across both national and federal

programmes, which seems to be a basic philosophical difference between North

America and the UK. The investment into services in Ontario appeared relatively

constrained whereas much greater investment was apparent in Manitoba where the

provincial government triggers for action included the evidence on loss of potential

and of the impact (and therefore increased costs) that a person with FASD has on

government services such as education, health and social care.

Healthy Child Manitoba is a Government programme with considerable commitment

from across Government ministries, with representation from Ministers on the

committee. FASD is recognised as the leading cognitive disability in Manitoba and

the province was the first to bring in mentoring programmes for FASD.

Working with communities to raise awareness and prevent FASD

One of the particular resonances between Scotland and Canada was that of

community assets. In Scotland we have been developing an orientation towards

empowering communities through asset based approaches and, in some of the

native American communities, asset mapping had been undertaken with the people

around fetal alcohol harm. This work has engaged across the generations and is

proving highly effective for networking.

Another approach focusing on engaging communities is that of community coalitions

that operates in Manitoba. Most of the health districts have been funded to appoint a

17

community coalition coordinator, whose role is to bring people together in the local

neighbourhood to raise awareness around FASD. I was able to attend the annual

conference of community coalitions in Winnipeg, which enabled me to meet with

most of the coordinators and several of the diagnostic coordinators, some of whom

are dual role. The latter’s role is to provide practical advice and support for

individuals who are coming forward for assessment at the specialist FASD clinic.

These coordinators also undertake the preliminary screening work and, through their

relationship with the family, are able to provide valuable input to the diagnostic team.

Prevention

Prevention forms one of the basic considerations when contemplating fetal alcohol

harm. Clearly, no exposure to alcohol in pregnancy means that the baby cannot be

affected by it. If only it were that simple – in practice, alcohol use in pregnancy is a

highly complex subject. In my Fellowship, I focused on those preventative activities

that looked to reduce fetal alcohol exposure through management of addiction,

effective contraception and lowering the risk of a second exposed pregnancy.

The role of long acting reversible contraception (LARC) in prevention of fetal alcohol

harm was not prominent in Eastern Canada. So overall there is a gap in prevention

approaches through maternity services with this lack of engagement with LARC.

In the UK there appears to be

much greater use of LARC – in

Scotland we have a NHS

target for the uptake of long

acting contraception,

predominantly for reducing

unplanned pregnancies, which

are also more prone to alcohol

exposure.

Bar notice in Toronto

18

Services for pregnant women

An area of notable strength in Canada was the approach taken to women with

alcohol and drug dependence. There is a strong recognition that women don’t

choose to develop addiction to alcohol or drugs, rather that there are underlying

triggers that precipitate coping strategies including substance use.

.

Breaking the Cycle, Toronto

These triggers include

domestic violence, parental

neglect and trauma in early

life, with workers using

trauma-informed and gender

lenses to gain the perspective

to these women’s lives. So

initial casework may well not

focus on the substance use

but rather on the factors that

lead to such use.

The potential for enhancing working between

addiction services and sexual health services is

perhaps where Scotland has a special strength,

which should be built on in order to:

support women of reproductive age with

addiction issues to take control over one

aspect of their reproductive health

provide advice to women of reproductive age

who are sexually active about their alcohol

use and its risks

ensure that women with alcohol dependence

who are pregnant are offered and receive

supportive, empathic and effective care

during and after their pregnancy, with follow

up for the child as appropriate.

19

In Winnipeg, there are programmes to address the needs of women who are

particularly vulnerable to poor outcomes from pregnancy, notably those who are

streetworkers and those who are homeless. Using a similar model to that of British

Columbia for street outreach, the Mothering project – which was just commencing

when I visited – works by building relationships with vulnerable women, offering

support, and also by direct outreach with nursing to address unmet and perhaps

unrecognised health needs. The project team will work with a culturally sensitive

model for practice and provision of services and will include health care, counselling

(including that for historical trauma associated with the programme of compulsory

residential childcare), parenting and a harm reduction model for substance use and

sexually transmitted infections.

A further programme that is specific to Aboriginal Health Services is Insight

Mentoring where caseworkers are also mentors and work alongside clients for up to

three years. More than half of the clients of this programme also have FASD

themselves and the understanding that the mentors have of the condition means that

retention in the programme is higher than with other addiction focused ones. In

Scotland, it is highly possible that families with FASD have been overlooked for

generations as high levels of alcohol (and other substance) use have been treated as

symptoms of coping with deprivation, neglect and poor mental health.

Also run for pregnant women,

including those at risk of alcohol or

drug problems, is the Motherisk

programme. Operating from the

Hospital for Sick Children in

Toronto, it aims to provide

guidance and support for pregnant

women and their healthcare

providers. It also runs a clinic for

women who are referred because

of exposure to known or suspected

teratogens (including alcohol and

other drugs of misuse). Hospital for Sick Children, Toronto

20

Manitoba has also built mentoring into the programme and has an outreach

programme for families with provisional, deferred or proposed diagnoses in order to

review and assess as appropriate.

Alongside the diagnostic service, Manitoba has also developed services into youth

justice with a programme operating in the youth corrections facility. This builds on the

recognition that young people with FASD may offend but may also not understand

that they have done so, and what the consequences may be of this offending. The

programme is able to assess youth and recommend appropriate disposal and has

led on training of justice staff to better understand the consequences of the brain

damage that FASD means.

Despite this evidence of good practice, there were still some areas where gaps

remained. In Ontario, state funded child healthcare does not include psychology,

occupational therapy and speech & language therapy, presenting systems barriers to

prevent diagnosis. Both provinces appeared to have a web of services with

complexity in funding sources and access routes. Professionals across the spectrum

Diagnostic and treatment services

The FASD clinic in Winnipeg was set

up in 1998 as a centre for substance-

using mothers and their children, and

recognises that diagnosis has to be

combined with follow up services.

The clinic uses locality-based

diagnostic coordinators to act as the

initial contact, collecting relevant

information and briefing the diagnostic

team. Once a diagnosis is made, the

coordinator will continue to have

contact with the child and family.

FASD Clinic, Winnipeg

21

of health, education and social care need to develop skills in assessment and

diagnosis, and voluntary agencies and advocacy groups are leading the way in

training.

Education initiatives

In Winnipeg, the education sector has recognised the additional needs of pupils with

FASD and a number of schools now have classrooms tailored to the needs of

affected children. I was able to visit the David Livingstone School and observe the

classroom in action. The key differences from mainstream classes were the small

number of pupils (6-8 over three grades in composite classes), the incorporation of

classroom assistants and health professional aid into the class, the focus on

education in life skills, supported learning and recognition of the specific challenges –

sensory overload, cognitive impairment, emotional and social skills delay – from

which children with FASD may suffer. One readily transferable element was the book

‘My kind of brain’, which looks at the different brain domains for each child and allows

them to better understand themselves, their likes and dislikes, strengths and

challenges, and more importantly, enables those who are working with the child to

tailor their interventions better.

c. Western Canada FASD Classroom – ‘bunny hole’ quiet

space

FASD Classroom – teaching space

22

7.3 Western Canada

The focus of my visit to British Columbia and Alberta was more on the policy

development and implementation aspects alongside the alcohol agenda.

Services for women with addiction

In British Columbia (BC), FASD has been recognised for a long time. The first health

strategic plan was set out in 1993, focussing on prevention and in 1994 the British

Columbia Children’s Foundation established Sheway. This is a multi-agency funded

partnership that works with pregnant women who are substance users, many of

whom are likely to be homeless and involved in the sex industry.

Over the twenty years of the project, it has seen a shift from all children being

apprehended at birth as a result of the substance misuse history, to around 70% of

mothers having their child with them at the end of the first year. The retention rate in

the project is high – when I was there, they were working with around 160 women

and 145 children although their funding is for 100 women and no children!

Like the UK, stay in hospital post-delivery is short but Vancouver has a 12 bedded

harm reduction unit within the Women’s Hospital, where Sheway mothers can be

admitted from 15 weeks pregnant until two weeks post-delivery; this can include

Sheway provides drop-in and

outreach care over a period of

eighteen months with low access

to residential care. Women may

be pregnant, have their child with

them or the child may be in state

care – and many of these

mothers came from state care

themselves.

East Vancouver, site of Sheway

23

stabilisation of substance use. All the Sheway nurses are sexual health trained and

can provide a full range of birth control options including LARC.

FASD policy

BC supports cross-sectoral collaboration from health, social care and the voluntary

sector, and is very much focused on grassroots cooperation. The cross-Ministerial

committee produced its first collaborative FASD strategic plan in 2003, which was

updated in 2008 and contains a resource commitment. Local areas have FASD

Action Plans which are implemented to a variable degree.

At a wider policy level, a provincial women’s health strategy is being developed and

contains a theme around violence, alcohol and mental health, which will help to

address some of the known factors associated with poorer pregnancy outcomes and

risk of FASD. In the UK, we tend to focus our women’s health issues on reproductive

health and screening detectable cancers, although gender based violence is

becoming increasingly recognised in partnership strategic plans. Rarely are

women’s alcohol and drug use issues considered separately from men’s.

Whilst at the Centre for Alcohol Research (CAR-BC) in Victoria, I gave a presentation

on the emergence of fetal alcohol policy in Scotland – or, more correctly, on how we

are seeking to weave a thread of FASD prevention and recognition into the existing

strategies for reproductive health including maternity services, children and

addictions. It was noted that Scotland’s alcohol consumption is around 50% greater

than that of British Columbia and yet there is very limited awareness of the need to

avoid alcohol in pregnancy. CAR-BC has conducted research into the effect of

minimum pricing on alcohol availability and demonstrated that those most likely to be

adversely affected by alcohol are the ones who are most likely to reduce their alcohol

purchasing as a result of minimum pricing. Scotland is currently legislating for

minimum alcohol pricing, which will have implications for alcohol use in pregnancy

too.

Like BC, Alberta has a robust FASD strategy led by a cross-Ministerial committee

from eight ministries across the legislature. Established in 2003, this cross-Ministry

24

committee has overseen the development and implementation of a strategic plan to

address FASD across the lifespan. Health and Human Services co-chair the

committee and membership includes education, enterprise, justice, aboriginal

services and gaming and liquor commission representation.

The strategy includes the aspects we have been addressing in the Scottish FASD

workplan covering prevention and awareness, assessment and diagnosis, and

supports for individuals and carers. The Albertan strategy is supported by a budget of

$CN16.5 million, although the original intention was for considerably more

investment. It targets clients across their lifespan – families including women at risk

of having a child with FASD, individuals suspected of having FASD and their

caregivers and individuals diagnosed with FASD and their caregivers.

One of the FASD network centres has a major role in training professionals. Each

centre operates differently, with models including voluntary sector and social

enterprise.

Alongside this, increasing effort is being placed in prevention work, modelling on the

Parent Child Assistance Programme (PCAP), wrap-around service delivery with

home visitations for women with a history of problematic substance use.

Sir Winston Churchill Square, Edmonton, Alberta

There are eleven health

districts across Alberta, each

of which has a FASD network,

with a provincial program

coordinator. The majority of

these networks’ activity is

directed towards supporting

children with FASD and their

families.

25

Training and education figure prominently in Alberta’s strategy. A FASD learning

series of webcasts and videoconferences has been set up; an average of more than

1500 participants attended the educational webcasts over the seven winter months

of 2011/12. The 2012/13 season includes sessions on health, education, youth

justice including restorative justice, and developments in research. It was heartening

to hear that the strategy uses a learning organisation model with evidence and

research driving everyday activity.

Economic aspects of FASD

My visit to the Institute of Health Economics allowed me to gain a better

understanding of the economic costs of fetal alcohol harm. The lifetime cost of FASD

is estimated at $CN 1.8 million and the opportunity costs for each prevented case in

Canada has been estimated at $CN 800,000, making a strong economic argument

for both prevention and early recognition with effective management. The Institute

has also estimated that 30-50% of the population with learning disabilities in Canada

may have FASD. Alberta is considering a record linkage study to prospectively

follow the progress of people with the specific ISD-10 codes that the Institute has

identified where FAS (the only code for fetal alcohol harm in ICD-10 is Fetal Alcohol

Syndrome). In Scotland, it would be helpful to try to replicate this work.

University of Alberta

. As with planning for health in

Scotland, the Albertans use

outcome-focussed planning

with clear, measurable

outcomes which have been

assessed at baseline and

again at year 5. The results of

the year 5 evaluation are

being used to adjust and

redirect the strategy for its

remaining term.

26

Whilst at the Institute, I gave a presentation that developed further the ‘golden thread’

theme of FASD activities in Scotland, recognising that awareness of the condition

was low and that we could not expect to develop a discrete or stand-alone FASD

service but rather seek to focus on FASD as one of several conditions of which

clinicians and other professionals should be aware.

FASD International conference

As I happened to be in Vancouver at the time of this conference, I was able to take

advantage of this connection and meet other people with specific expertise. One of

the first ‘take home’ messages was delivered by a young man with FASD on the

topic of normality and how what is normal for them is not the same as what would be

normal for us (think of ‘what’s normal for the spider is chaos for the fly’). The role of

genetics in FASD was also explored and how genetic studies have led us to

conclude that FASD is influenced by genes, epigenetics (how genes are expressed)

and environmental factors.

Meeting with the executive director of one of the Albertan FASD networks, I was

impressed by how the network links with service providers for FASD prevention for

women at risk, together with mentoring support, and helps people access

assessments and diagnostic facilities. Another network leader outlined how her

service for the community she serves has developed over the past decade to being a

prevention, diagnostic and support service through the commitment of volunteers

and core professionals. This provided me with some thoughts around potential

models of service that could be used in Scotland, and across the UK, to prevent,

assess and manage fetal alcohol harm.

The closing ceremony of the International conference has become traditionally

delivered by children and young people with FASD, and this year was no exception.

Each of the young people on the stage had a story to tell and behind that story was

the life struggle they have faced, and the challenges and testing times faced by their

caregivers. Each of these – the people with FASD and the vital supports and

caregivers – should be recognised and lauded for their skills, dedication and

persistence in addressing the damage that alcohol has done in their lives.

27

10. Learning points

I was already well aware of the literature around FASD but less informed about the

policy and strategic contexts, so structuring my time in Canada to focus on much of

the practice for my first visit and more on the policy for the second was helpful.

Overall it was clear that, whilst Finland was as a similar level of development as

Scotland (ie beginning to recognise FASD as a potentially huge issue), Canada was

a considerable distance further on. However there was variability in progress across

the Canadian provinces I visited – for example, although FASD is recognised,

diagnosed and managed, Ontario does not yet have a clear FASD strategic

statement; Alberta, British Columbia and Manitoba all have their own provincial

strategies.

There are difficulties in developing relationships between professionals and women

with substance use; however, the midwifery services that the UK and Finland operate

means that women have frequent interactions with their maternity care-giver with

considerable opportunity to discuss concerns and collaborate on managing health

issues including addiction. One aspect of learning that I gained was around the use

of trauma- and gender-informed lenses with which to consider the woman’s life.

Great strides had been made in relation to diagnosis and management in areas

where investment had followed the strategy. In a similar way to the treatment of

addiction, perhaps unsurprisingly, the availability of diagnostic centres and places

outstripped the potential number of people with FASD around twentyfold. The

similarities between Finland and Scotland meant that we are recognising FASD as

coming from within all sectors of the population, whereas the emphasis in Canada

appeared to start out with the Native American communities and then reach into the

more deprived communities. However, all countries would agree that there is still a

long way to go before fetal alcohol harm is adequately recognised and managed, and

that the long term goal of eradication of fetal exposure to alcohol may be a very long

way off.

28

Throughout my Fellowship travels, the ethical and moral aspects of fetal alcohol

harm were ever present. With prevention in mind, these issues may present around

the use of long acting reversible contraception (LARC) for women with substance

use problems. Such a measure is highly effective at preventing FASD for all

pregnancies by ensuring that pregnancy is a deliberate decision and planned choice.

Some professionals I met with see this as assisting the woman to gain control of one

aspect of her life when the rest may be in chaos, whereas others perceived

encouragement of LARC as society controlling the reproductive capacity of another

being who may have difficulty in making choices and giving consent.

Another ethical and moral dilemma relates to diagnosis. The perceived stigmatising

effect of the diagnosis may mean that it is postponed or avoided, with the potential

for interventions aimed at assisting the child and family working less well than

intended when the child’s strengths and challenges have not been fully identified. In

addition, delay in diagnosis – perhaps until the child reaches adulthood – can invoke

changes in the relationship that the adult has with both the birth family and the foster

or adoptive family.

Similarly, identifying individuals with FASD through the development of diagnostic

capacity presents a further ethical challenge if there is insufficient knowledge,

understanding and capability to manage the disorder appropriately. There is a note of

caution here for the UK to be certain that enhancing diagnostic capability runs

alongside awareness and improved practice in effective management strategies

across health, education, social care and justice sectors.

29

11. Next steps

Since returning from my Fellowship travels, I have continued to work with the

Scottish Government in developing a strategic context for FASD in Scotland. Where

possible I, and the small team I work with, are seeking to interweave the FASD

thread through existing strategies as we recognise it cannot stand alone in the

current financial climate, and this work is beginning to show success in some areas.

For example, some health boards are developing and enhancing the linkage

between addiction and sexual health services to promote awareness of alcohol

avoidance in pregnancy, ensure women with dependency are appropriately managed

and encourage uptake of LARC.

The Scottish Government’s approach of reducing whole population consumption of

alcohol goes some way to reducing the potential for fetal alcohol harm but there

remains a need to increase the wider public awareness of FASD. Celebrating

International FASD Awareness Day on 9th September each year will help us in this,

drawing on the experiences of the Canadians and others to develop a Scottish toolkit

for professionals to use in awareness raising.

I am hopeful that my contact with the FASD Centre in Winnipeg will result in the

Scottish Government funding the Canadian team to visit Scotland to train our

paediatric teams in recognition and management of FASD, and also provide

structured support to caregivers.

One further development I would like to institute would be to establish a network akin

to the community coalitions, consisting of locality-based professionals and caregivers

with a common interest in improving awareness, knowledge and, ultimately, services

for people with FASD. I recognise that this may not be possible during the course of

my secondment to the Scottish Government, I would intend to make progress with

this aspect during 2014.

Whilst some of this work would have been progressed as part of the Scottish

Government’s work strand on FASD, the Fellowship has enabled me to truly

understand and grasp the realities of this preventable condition, as seen through the

30

eyes of many different health, social care and education professionals as well as

those of affected individuals themselves. That realisation has made me more able to

drive forward with renewed vigour the discussions, presentations, meetings and

connections I need in helping to make a difference to the lives of others affected by

fetal alcohol harm. I am most grateful to them all for their forbearance of the gaps in

my knowledge and their support in this work.