FASD Hub0300 666 0006 (option 2) To speak to one of our advisors call our helpline - open Tuesday to Friday, 10am – 2.30pm or email us at [email protected] Our services FASD hub FASD hub Scotland FASD Research Take part in research! ‘Understanding the determinants of resilience in families affected by Fetal Alcohol Spectrum Disorder’ Hello, my name is Samantha Francis. I am a PhD student at the University of Strathclyde due to my own background of caring for children with disabilities this research project is of great importance to me and close to my heart. This research aims to provide a deeper understanding of your day-to-day life, the challenges you face, how you overcome them, who if anyone supports you to do this, and what support you wish you had received. Your personal story when shared and combined with other families can help to build a picture of how resilience can be encouraged in other families affected by FASD. This picture can then be used to help inform decisions made by both policy makers and service providers to improve the support that is currently available. Samantha Francis is supported by the FASD Hub in her PhD programme. Could you take part? Are you a parent or carer of a young person with a FASD diagnosis or a history of Prenatal Alcohol Exposure? Are they between the ages of 5 years and 18 years old? If over 16 years old is your child still in the education system? Do you live in the UK? If so, Samantha would love to hear from you. You can download further information below. Download Participant Information If you would like to take part or for more information, email [email protected] You can also contact Samantha's supervisors Dr Edward Sosu [email protected] and Prof Marion Henderson [email protected] with any questions Experiences of young people with FASD: photos, thoughts and words from young people FASD Hub Scotland is delighted to share the photos and views of young people from this research study by Miranda Eodanable into the lived experiences of young people with FASD. We think our young people are amazing - many thanks to all those who took part. Welcome to this photo-based study that displays the photos, thoughts and words of young people with FASD. My name is Miranda and I am studying at the University of Edinburgh. From May 2021 to May 2022, I have been privileged to carry out research with 8 young people across the UK as they share their views and experiences of FASD with me and as part of a group. In this SWAY presentation, we have worked together to identify photos and the key messages that the young people want to share about FASD with everyone! Thank you to my co-researchers and FASD Hub Scotland for supporting this research. Any questions please contact me at [email protected] Fetal Alcohol Spectrum Disorder (FASD):young people's experiences and views of FASD View the presentation here If you are a student/researcher working in the field of FASD, we may be able to support your work. At times, members of our community may be available to participate in your research providing the lived experience that enriches research and ensuring that its outcomes meet the needs those with FASD and their families. If you would like FASD Hub Scotland to consider supporting you in your research, approval must be gained from the Adoption UK Senior Leadership Team. You are required to provide a written confirmation of ethics approval from your university, and also a research outline document. These will then be reviewed by Adoption UK and you will be informed of the outcome. Research requests should be emailed to [email protected] Recent Research: Over 600 Greater Manchester families affected each year: UK’s first study reveals local extent of Fetal Alcohol Spectrum Disorder. Research conducted by University of Salford Read the study here FASD Hub Scotland and Adoption UK welcome this first FASD prevalence study from within the UK. The study revealed that the prevalence of FASD among the cohort of primary aged children (8-9yrs) could be between 2-4% (1.8-3.6%), which is in keeping with the current estimated prevalence in Scotland estimated to be approximately 3.2% (SIGN 156, 2019). The study acknowledges that within some specific groups there is likely to be an over-representation of those with FASD being educated either outside of mainstream education or those for whom other risk factors are known. We know that children who are care experienced, and either remain accommodated within the social care or progress to permanency within an adoptive family or a kinship arrangement, are more likely to have been prenatally exposed to alcohol and therefore within this group and at higher risk of being affected by FASD. The studies recommendations to increase access to diagnosis for FASD, and interventions to support families and individuals affected by FASD, have been central to the development of FASD Hub Scotland tiered support service available to all parents and carers within Scotland, and Adoption UK’s six key recommendations from the 2020 Adoption Barometer which found 78% of parents whose children had an FASD diagnosis did not feel that healthcare professionals were knowledgeable about the condition; 82% had not received effective follow up support following their child’s FASD diagnosis; 70% of parents whose children were diagnosed with FASD felt that their child’s school did not understand the condition; and a worryingly, given the life-long nature of FASD, 90% did not feel that their child would receive the support they needed as they transitioned to adulthood. During FASD Month, Adoption UK’s and FASD Hub Scotland’s month long campaign has focused on encouraging everyone to ‘think differently’ about FASD, and called on all governments to building on the work established in Scotland by FASD Hub Scotland (supported by the Scottish Government) Westminster, the Welsh Government and Stormont provide a single government-funded support Hub to support families affected by PAE/FASD, with the ask that the Scottish Government commit to continued funding for FASD Hub Scotland. This ask is alongside the five others set out in the Barometer report: all UK nations have a fully costed FASD strategy covering awareness raising, diagnosis and support, alongside the reduction of PAE; improve recording of prenatal alcohol exposure; recognise the higher risk of FASD for care experienced children and young people; provide FASD awareness and training to all professionals; train health professionals to diagnose and support individuals with FASD; and the inclusion of integrated support plans for families affected by FASD. It is therefore critical that every opportunity to taken for awareness raising and the prevention of PAE, and where this has not been possible individuals affected by PAE are identified at the earliest possible stage, and they and their families, are supported to ensure the best long-term outcomes.