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.
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.
The All-Party Parliamentary Group on Foetal Alcohol Spectrum Disorders exists to raise awareness of Foetal Alcohol Spectrum Disorders (FASD) and the potential dangers of drinking alcohol in pregnancy, in order to increase knowledge of this condition, to improve support for those living with FASD and reduce its prevalence in the UK. [Note: The APPG was suspended during the 2019 election, it will be reconstituted soon…]
“What am I asking for? I am asking for action on prevention and diagnosis, and action to cut the numbers, and for a sea change in our approach and our building of awareness among the population, including and especially among health professionals….
I am asking that the chief medical officer’s advice and guidance, which has now been accepted by the National Institute for Health and Care Excellence as well, be given much greater prominence and that we build awareness so that everyone understands it, especially, but not exclusively, health professionals. I am asking that we have a proper study of incidence so that we need not rely on the limited evidence of the Bristol University study. It was only able to make rough estimates, given the nature of its research, but if it is between 6% and 17%, it really does need that intervention and prevalence study….
We have to build greater understanding among health professionals and professionals right across the public sector. I have mentioned support as well. There needs to be greater support for those living with FASD—both those suffering from it and those caring for them— and those in education and elsewhere who are looking after them.”
In the meantime, the submission from Richard Clements is available here. Richard is father to a child with FASD and also a commissioner.
A video excerpt of Nyrene Cox’s statement is here. Nyrene has been trying for five years to get access to a diagnosis for FASD.
Report from APPG Meeting, 13 December 2018 (PDF)
From the Archives, December 2015
Please note: NOFAS-UK was asked to take over secretarial duties in late 2018. We were not provided with any records from the prior secretariat when it ceased operations.
This is not an official website of the House of Commons or the House of Lords. It has not been approved by either House or its committees. All-Party Parliamentary Groups are informal groups of Members of both Houses with a common interest in particular issues. The views expressed in these webpages are those of the group
Martin Butcher, East Hertfordshire and Area FASD Support Network, introducing a statement on behalf of the FASD UK Alliance;
Pip Williams, on behalf of the UK-EU Birth Mothers Network-FASD;
Brian Roberts, a former virtual school head who discussed Looked After Children, FASD and education;
Andy Jackson, adult with FASD
Main points raised by stakeholders included:
There is an urgent need for Increased awareness, training, information and tracking across all NHS platforms on the full range of the FASD spectrum diagnoses and not just the 10% of those with FASD who have the facial features of Foetal Alcohol Syndrome.
Prevention is key. Support for pregnant women should be framed in ways that help not only decrease the incidence of FASD but also support women in the post-natal by providing access to early diagnosis and support for a child who might have been affected.
To avoid tragic consequences, it is critical to ensure those affected (including adults) have access to FASD diagnosis and related assessments. Looked after children and those who are adopted should all be assessed for FASD and particular attention should be paid to training all professionals in these fields.
Appropriate support is required across the lifespan of those with FASD – it is a lifelong hidden disability arising from organic brain damage due to alcohol exposure in utero. Failure to provide this support can have – and is having – devastating impact. This point was poignantly underscored by contributions from adults with FASD. A strengths-based approach is needed.
FASD should be recognised as the neurodevelopmental disability it is, so all people with FASD no matter what their IQ-level can access services and benefits that are open to others with autism and other neurodevelopmental disabilities.
Continuing engagement with stakeholders and service users must be a part of finding the way forward.
22 UK adults with FASD shared additional insights for the 22 October 2018 meeting with Deputy Chief Medical Officer Gina Radford
On 28 October 2017, the first NOFAS-UK FASD Wellbeing Workshop, ‘Living in the Here and Now,’ featured Dr Cassie Jackson, Highly Specialist Clinical Psychologist, and Andy Jackson, member National FASD Advisory Committee. The workshop featured presentations followed by Q&A (not filmed) and scenarios for small group problem solving. NOFAS-UK seeks to maximise the impact of these workshops by freely sharing the insights and content. You are not alone!