#101 Sandra Butcher on NICE and The Time is Now

My guest today, Sandra Butcher, the Chief Executive of the National Organization for FASD (U.K.) said it best: Every victory for FASD in any part of the world is a victory for all of us. After a growing movement from many organizations and individuals in the U.K., decades in the making, FASD recognition has been pushed to the forefront.  

Before joining National FASD Sandy had nearly 30 years of experience working at the intersection of science and public policy, including as International Executive Director of the Pugwash Conferences on Science and World Affairs. Originally from New Jersey, USA, she’s married to a Brit and mum to two awesome young people. She has lived in the UK since 2006. Her youngest son was diagnosed with FASD when he was nearly 10. She’s a big believer that children grow toward the sunshine and is convinced that hope has to be at the root of how we approach FASD as a society and as families. 

I really believe as we are looking toward the future, all of us in this community, and all those people that support us, we have to believe that things can change for the better. Because otherwise what message are we sending to the people we are trying to support. 

I wanted to invite Sandy on to talk about the recent NICE Quality Standard, and the next thing I know they are hosting a live streaming report announcing "The Time is Now" report!  We are now fast-tracking this episode so you can find out all the great stuff that is going on over there and how they achieved it. We talk about: 

• The path to a diagnosis for her son, her grief and loss and how she got involved in the FASD movement in the U.K. 

• How the timing of the changes in the UK healthcare system helped the recent events, a synopsis of the NICE Quality Standard process and an overview of The Time is Now Report. 
• The importance of educating individuals with FASD about their diagnosis and the tools and website their organization has helped to create, such as My Brain, Me and FASD and the Break It Down Board. 
• Her advice to others that want to advocate or those that may feel overwhelmed, or feel they are not doing enough (hint: you are doing enough). 

People with FASD grow up thinking they are alone. They don’t understand there are other people like them out there. My son, who is almost 18, doesn’t go to sleep every night without hearing, I love you. And it’s going to be ok. And you are going to get through this. And there are adults with FASD out there who say it gets easier. 

Not sure about you, but I was exhausted hearing all that was going on. And that isn’t all, in between all that, we squeeze in discussions around the pub culture, media portrayal and stigma, cost of FASD, and educating professionals. 

As Sandy says, there are people of goodwill all over the place who realize how important it is that we haven’t yet as Society fully addressed what is going on. But they just need to know how to connect with each other.  

Big shout out to everyone in the UK (past and present) that has been a part of this process to get the UK to where it is today. For more information on the items we discussed, be sure to check out the Show Notes below.  

Show Notes: 

Report: The Time Is Now: The National Perspective on Ramping Up FASD Prevention, Diagnostic and Support Services 

NICE Quality Standard: National Institute for Health and Care Excellence Policy Matters 

Interactive website:  Me and My FASD 

Prevention website: Prevent FASD  

Sandra’s personal Blog: FASD: Learning with Hope 

Check out our Facebook Page:  FASD Caregiver Success 

Join our Facebook Group: FASD Caregiver Success Group 

Follow me on Twitter: @JeffjNoble 

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