“As stakeholders we are here to start a dialogue – a direct and honest dialogue on issues related to the health and wellbeing of those with FASD and those who support them. And on these matters, it is imperative that you hear our voices.” FASD UK Alliance Statement, 22 October 2018
The FASD UK Alliance makes occasional statements and at times releases information collected in a cooperative way from across the groups. Some examples are below.
Management Plans
The NICE Quality Standard (204) on FASD calls for management plans for people with FASD. The FASD UK Alliance surveyed families. We received 161 responses in February and March 2023. We presented the findings at the 30 March 2023 “FASD in the UK” conference at the University of Salford (videos to follow).
Not one family could give a good example of a management plan and many shared their distress over this issue and the impact it has on people with FASD. We organised roundtable discussions with practitioners, policy makers, and people with lived experience to begin to identify best practice for management plans.
Feedback from Stakeholders in England for NICE Quality Standard – “5 key areas for quality improvement
Responses from more than 320 stakeholders across England as gathered by the FASD UK Alliance to help inform the NICE Quality Standard on FASD consultation, October 2019.
Stakeholders “want the medical community and others interacting with their families to take FASD seriously. They want appropriate diagnosis, support and resources to help them stabilise and enrich their lives. They want to know that people with FASD will have security and support when they are adults.”
5 Key Areas for Quality Improvement (PDF)
Hear Our Voices: FASD Stakeholders Share Their Experiences With Policy Makers
This document includes input from more than 50 individuals and families affected by FASD. It is not scientific, it is anecdotal precisely because stakeholders are rarely brought into the discussions that impact their lives and futures.
Statement of the FASD UK Alliance Meeting with Deputy Chief Medical Officer Prof. Gina Radford, 22 October 2018
“As a community too long left in the shadows, we bring goodwill, urgency and a determination to ensure that yet another generation of those whose lives have been affected by FASD does not fall through the cracks.”
Statement of the FASD UK Alliance Meeting with Baroness Sheila Hollins and Bill Esterson MP, 23 May 2018
“As stakeholders we are here to start a dialogue – a direct and honest dialogue on issues related to the health and wellbeing of those with FASD and those who support them. And on these matters, it is imperative that you hear our voices.”Statement of the FASD UK Alliance 23 May 2018 (PDF)
FASD UK Alliance 