Author Archives: Sandy

Diary of a deaf mom and 10-year old with neurodevelopmental delay and sensory needs

Day 9 of #TheGreatBigLockdown #Coronavirus #FASD

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.

But it is now day NINE……..

I shouted this morning.  

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What You Can Do About Coronavirus – a guide for those with FASD

People with FASD and their families can take some steps to help prepare for coronavirus. NOFAS-UK has prepared a summary of Public Health England’s “Coronavirus (COVID-19) – 5 things you can do to protect yourself and your community”. We have made it more accessible and included some bits specifically for those with FASD (or other neurodevelopmental conditions)

A PDF of this 6-page summary is available here. Pages 1 and 4 might be useful to print, especially for younger people.

There is a great video about hand washing by the Purple All Stars from Hertfordshire that you might want to share with your kids.

Draft NICE Quality Standard on FASD

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.

Here is a summary of the draft NICE Quality Standard – a PDF of this summary is available here.


The FASD UK Alliance is seeking input on the draft NICE Quality Standard from stakeholders in England. This will be open until 25 March. Thanks for sharing your views via this link!

This item can be found on page:   Policy

2019 Brain Base: FASD Wellbeing Summer Fun Days

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.

Final logistics, bios and schedule

Young Person’s Pack

A generous and exciting offer from OurBoards – OurBoards are donating a free gift for all attending the 2019 Brain Base and a 20% discount for all families connected with NOFAS-UK who order from their website with the code NOFAS2019. See www.ourboards.co.uk for their full range of visual planners.

Informal Roundtable on Forthcoming NICE Quality Standard on FASD

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.

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CCGs and FASD

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.

PDF available by clicking on image. This report is 40 pages long.
If you would like a hard copy of the report, please contact us.

Policy Matters CCGs and FASD – Easy Read Version

This 4 page Easy Read version is available if you click on the image.
If you would like a white background for printing, click here.

What You Can Do

  1. 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.
  2. Ask your MP to join the APPG on FASD chaired by Bill Esterson MP. They can do so by emailing info@nofas-uk.org. (NOFAS-UK now serves as the APPG secretariat.)
  3. 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.
  4. 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.