On Monday 21st of March, at the National Liberal Club in Westminster, we unveiled The Time is Now: The National Perspective on Ramping up FASD Prevention, Diagnosis and Support Services. This report represents the culmination of a series of roundtables called by our Experts Committee, with input from more than 60 experts from various fields, as well as those with lived experience.
The 141-page report sets out practical next steps and recommendations for progress for FASD in the UK, in the wake of this month’s NICE Quality Standard on FASD, and last year’s DHSC FASD Health Needs Assessment.
The release event in London drew attendees from across the country, as well as more than 500 viewers who watched our livestream over the course of the day. 13 guest speakers including experts and those with lived experience gave their views on the report and other recent developments for FASD in the UK.
We have passed the tipping point for FASD in this country, and the condition is now recognised by government and public health bodies, but there’s still much to be done to ensure that not only is FASD prevented where possible, but that those with FASD and their loved ones receive all the support they need and deserve to flourish.
Voices of the Co-Chairs
The roundtables on which the report is based were co-chaired by Sandra Butcher, Chief Executive of National FASD, and Raja Mukherjee, Consultant Psychiatrist at the FASD National Specialist Clinic.
Raja reflected on his decades of work in FASD, as we reach a crucial stage: “Twenty years can be a long time, yet it can also feel like the blink of an eye. Twenty years is the length of time that FASD has been a central part of my professional life. In that time there have been many changes in the UK’s understanding and engagement with FASD, but for the most part, there has been very little to drive this change through. This now seems to be changing.”
“More recently there has been a ground swell of interest that simply did not exist before. Instead, for those of us in the field, whether that is professionals or Third Sector, having to fight to open doors and raise interest seems to be changing. People in wider fields have been seeking input on this important and unrecognised area, wanting to independently see change happen.”
“This report brings together the ideas and the information from people linked to FASD. It is a real resource for the next stage of supporting change. Taken alongside the NICE Quality Standard, we hope it will act to support people developing their own ideas and implementing change. Twenty years is a blink of an eye in some ways, but I hope that it does not take so long going forward to make the real difference that people with FASD deserve.”
In her forward for the report, Sandy says “Little did I dream when we sat in Raja’s office at the National FASD clinic some 8 years ago and heard that our beautiful, loving son has lifelong brain damage and that there was ‘no post-diagnostic protocol’ in the UK for how to support him that we’d be here, on the verge of a whole new landscape for those people with FASD, their families and those at risk of alcohol-exposed pregnancies.”
“At the time I was just an overwhelmed mum who had been struggling since we adopted our son at 16 months to figure out how to best help him. The FASD diagnosis was the missing link for us. Understanding that his brain was processing things differently led us to understand the need to change the environment around him and empowered us to learn how to help him better understand his own needs.”
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“Now, through my work with National FASD, I am in touch with people all across the UK who have had this same journey. What a welcome moment it is to finally have all the major public health bodies onside, recognising the risks of alcohol in pregnancy, emphasising the need for recognition, diagnosis and lifelong support for those with FASD.”
“This report, based on input from some 60 leading professionals, clinicians, policy makers, researchers and people with lived experience who generously shared their time, insights and expertise over a series of nine roundtable meetings, shows that the time is now for action. These official documents matter greatly, but what happens next will show just what sort of society we live in. Will decision makers step up and make the needed changes? This report is packed full of ideas to help policy makers ramp up FASD services. We all stand ready to assist.”