Today was the third day in a row the 10-year old followed me constantly around the house. He wanted to know what I was doing even though he could see what I was doing. He wanted to know instantly if I shuffled my seating position on the sofa, where I was going.
If I left the room he followed asking me if I was going to the toilet, every single time.
I understand a decent amount why he’s acting super clingy and unsure, I understand in these strange unstructured times that his brain is losing sense of where he is in the present, that he’s regressing to repetitive actions hoping he’ll get an answer that makes sense to him, a lot of his questions don’t have an answer. He’s in a Catch 22 situation.
Because I understand this, I have adjusted my responses, my actions and my patience accordingly. I am his rock, his anchor, his trust that he will be ok.
Young people with FASD can help plan for days when they may need to be at home. This guide offers some suggestions – but it’s only a start to help get everyone thinking of some fun and calming home activities.
The National Institute for Health and Care Excellence (NICE) has released the draft Quality Standard on FASD for public consultation. NICE Quality Standards identify areas for health care improvement. This a potentially transformative change in England, signalling a new seriousness of purpose to address FASD.
A new NICE Quality Standard on FASD is coming in England in July 2020. The NICE Quality Standard will be based on the Scottish SIGN 156 Guideline. This pamphlet summarises the diagnostic process in the SIGN guidance.
For details about last year’s programme, click here. Great fun was had by all!
We had an amazing Brain Base 2019. A huge thanks to all the young people, parents/carers and speakers who joined us! And especially to the talented team that made this possible. More details will be available soon from our event.
Participants shared their ‘stay cool’ strategies. This was made into a poem and acted out in the final showcase.
This “Stay Cool Toolkit” is designed to help them remember things we covered.
17 May 2019 Informal Roundtable on Forthcoming NICE Quality Standard on FASD Manchester
NOFAS-UK hosted an informal roundtable on the forthcoming NICE Quality Standard on FASD in the week following the announcement. The discussion was co-chaired by Dr Raja Mukherjee and Sandra Butcher. This took place in the margins of the launch of the Greater Manchester Alcohol Exposed Pregnancies Programme.
A Crisis of Commissioning: CCGs Are Failing Government Policy on FASD
Based on Freedom of Information requests to all Clinical Commissioning Groups and NHS Trusts and Health Boards, this report highlights the mismatch between government policy and actual practice. The vast majority of CCGs are not commissioning services for FASD prevention, diagnosis or post-diagnostic care for those with FASD.
Please click here for the media release that accompanied the launch of the report.
Policy Matters CCGs and FASD – Easy Read Version
What You Can Do
CCGs exist in England. If you live in England, write to your MP and ask them to contact the local CCG and ask about FASD services in your area. To find the response (if any) from your local CCG, go to www.whatdotheyknow.com and search for the name of your CCG and ‘FASD’ then it should pop up. The same search will work for NHS Trusts. If you have any trouble doing this, please let us know and we will try to help.
Ask your MP to join the APPG on FASD chaired by Bill Esterson MP. They can do so by emailing email@example.com. (NOFAS-UK now serves as the APPG secretariat.)
Contact your CCG and ask them to meet with you and other stakeholders about FASD. Ask the CCG to encourage the Department of Health and Public Health England to provide more guidance about FASD diagnosis, support and training for professionals. Click here for more information about CCGs and to find your CCG.
Contact your local media and explain the ‘local angle’ on this report from a national charity. “Local families unable to access services for brain-based conditions’. You can refer them to this media release which has quotes they can use from leading experts and other stakeholders.