Our March Newsletter is available now

March Newsletter 

Women, Alcohol, Pregnancy and FASD report

FASD Hub Scotland welcomes Professor Moira Plant’s newly published report entitled ‘Women, Alcohol, Pregnancy and FASD: What is known and what Scotland can do next’. The report has been published as part of the Healthier Pregnancies, Better Lives project at the Queens Nursing Institute Scotland.  

As the report reveals, FASD is a condition that is vastly underdiagnosed, leading to a lack of understanding of the condition and making it difficult for individuals and families affected by FASD to access the right support.  

This report highlights the issue of stigma and how this may lead to prenatal alcohol histories being omitted from a child’s medical files, which can become a barrier to later diagnosis. A lack of recorded prenatal alcohol history is an issue we hear about from many of the adoptive, fostering and kinship families we work with, and we would encourage those working on the frontline to consider how this could be routinely and accurately recorded in a non-stigmatising way for both pregnant women and baby.  

FASD Hub Scotland recognises that FASD is not 100% preventable due to unplanned pregnancies, however through greater education, nurturing relationships and sensitive conversations the prevalence of FASD can be significantly reduced.   We support the report and the recommendation that the Queens Nursing Institute Scotland facilitate continuing professional development to increase awareness and encourage implementation of effective strategies for preventing, identifying and supporting individuals/families affected by FASD. As members of the Healthier Pregnancies Better Lives Coalition, FASD Hub Scotland will offer support to achieve this.  

We agree with Prof Moira Plant’s recommendations for Scotland within the report, and particularly highlight: 

• Preconception and FASD training of mental health and addiction workers must become standard 
• Situating of services for people with FASD within general neurodevelopmental clinics alongside upskilling of staff in identifying more babies, older children, young people and adults with FASD 
• Develop mutually beneficial relationships with responsible mass and social media to encourage the accurate portrayal of people with FASD 
• Secure longer-term funding for FASD prevention, diagnostic and post-diagnostic services, supports and research 

FASD Hub Scotland commit to continue to work with our partner organisations in ensuring the lived experiences of people with FASD and their families are uppermost in the planning and delivery of FASD services.  

*NEW*

FASD Hub Scotland/Adoption UK Parents Carers Experience Survey

FASD is the most common neurodevelopmental condition in the western world (Clarke & Gibbard, 2003) yet time and time again we hear that accessing a diagnosis is problematic for people with a prenatal alcohol history and their families.  

During FASD Month in September 2021, FASD Hub Scotland and Adoption UK invited parents and carers from across the UK to share their experiences of seeking an FASD diagnosis. The survey was co-designed by the FASD Hub and an advisory group of professionals with experience of FASD diagnosis and support. Survey respondents included adoptive families, foster and kinship carers, biological parents and one individual with FASD who shared their experiences with us of their own diagnostic process.  

The survey asked about experiences such as information about prenatal alcohol exposure history shared, the process of assessment and diagnosis, barriers to this, and families’ access to support and showed us a clear picture of the difficulties families face to access the information and assessments necessary for a life changing diagnosis. 

Findings showed that over 80% experienced barriers to diagnosis – including 70% whose diagnosis depended on a report confirming prenatal alcohol exposure for their child, something that many families struggle to access within their children’s records depending on their early experiences. In addition, 84% felt they had not been given any information to help them as parents/carers through the assessment process, while two thirds felt more informed than professionals about FASD.  

The results highlight many unnecessary barriers to diagnosis still exist, particularly impacting the care experienced community where access to evidence of prenatal alcohol exposure relies on records held by professionals.  It was also clear from the results that geographical location and local resources varied the ability to access diagnosis, with 59% of parents/carers not seeking a diagnosis due to acknowledged difficulties in their area.  

At the time of the survey, Scotland was working towards implementing the SIGN 156 Guidelines, and England/Wales were still awaiting the publication of the NICE Quality Standards which provide guidance for medical practitioners around the diagnostic process – but these findings highlight the prevailing need to inform and educate professionals about FASD and address the practical issues faced by families who are seeking diagnosis for their child.  

In terms of support, 68% of respondents are part of an FASD online community, such as the FASD Hub Scotland supportive online group, but there is a distinct lack of support across the UK for families parenting children with FASD. As part of FASD month 2022 Adoption UK called for access to support hubs across all four nations in the UK, along with integrated support plans for families, recognising the need for support alongside the understanding and impact a diagnosis can offer families and individuals.  

These results evidence the challenges families face and demonstrate a need for improved diagnostic processes and post-diagnostic support – the least that families and individuals deserve to access in order to promote the best possible outcomes for our FASD communities.   

We would like to thank those involved in designing the survey, the Institute of Public Care at Oxford Brookes University who produced the report and above all, those parents, carers and individuals who took time to share their experiences with us. 

Read the Executive Summary

Read the Full Survey Analysis

On Tuesday 6th December we were delighted to be joined by Kevin Stewart MSP, Minister for Mental Wellbeing and Social Care and representatives of the Scottish Government for a FASD Ministerial Round table.

Mr Stewart had accepted an invitation to meet with parents and carers in response to an invitation issued to all UK governments as part of FASD Month 2022. 

Mr Stewart listened to parent and carers from our FASD Community and also to an adult who has an FASD diagnosis. 

“I am pleased to have FASD added to my portfolio of work as it’s so important. I look forward to hearing all your experiences. The government is determined to ensure people with FASD can follow their dreams and live life to fullest on their own terms” (Kevin Stewart, MSP)

The group shared with the minister their views on a range of issues including awareness of FASD, stigma, FASD as a lifelong condition and the need for lived experience to be at the centre of policy and decision making.

"As you know, FASD is lifelong and affects all areas of life. I want to ensure our FASD policy is joined up with policy areas across government – to ensure people can access support in all areas in life.” (Kevin Stewart, MSP)

Mr Stewart shared with the group his hope for trauma informed practice and person centred support. 

“We are trying to wrap the support around someone regardless of diagnosis” (Kevin Stewart, MSP)

Key messages included:

• FASD is a lifelong condition and ongoing support throughout the lifespan is essential so that individuals can achieve their hopes and dreams.
• More support is needed for families and individuals affected by FASD. There is so much more that needs to be done. The support from the FASD Hub has been very valuable for many families.
• Resourcing ongoing specialist support such as that which the Hub delivers is crucial, and the group emphasised how important Scottish Government's commitment to this provision is

“It’s a lifelong journey – that’s the most important bit – it doesn’t end at 18. We hear people every day expressing how grateful they are. We are so grateful from the Scottish Government support and thank you for coming. In an ideal world – all schools should be places for them to learn and thrive. But it's not the case just now.” (parent)

Further information on the discussion can be found in the document below. 

FASD Ministerial Round Table 06.12.22

We would like to thank Mr Stewart and all those who attended. 

The Time is Now Report

Read Aliy Brown's blog on the publication of the NICE guidelines and the launch of the major new report The Time is Now.

A full interactive copy of the report can be found at by visiting the National Organisation for FASD website. You can watch a recording of the Time is Now event here.

Peer Support Groups

Our FASD Hub Peer support groups take place on the 2nd and 4th Wednesday of the month at 8pm. Join Gemma, Lindsay and Rich for a chat - all are welcome. To join, look out for the link in the FASD Hub Peer Support Group or email us at [email protected] 

New webinar videos available

Did you miss our amazing webinar with Kenny LaJoy? Kenny wrote the book 'It's ok to be You: Living well with FASD or other disabilities'. He shared with us a little of his FASD journey which is full of hope and gave a great insight into how its ok to have FASD, people can still do great things! Catch up on our YouTube channel now.