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How can I get funding for a diagnosis?
While diagnostic capacity for FASD is expanding, if a pathway is not yet in place in your area your GP or paediatrician may need to approach the local Integrated Care Board or health board for funding for the diagnosis. If they decline, you can appeal the decision.
It may be helpful to remind them that NICE has a new Quality Standard on FASD and the DHSC has conducted an FASD Health Needs Assessment. The SIGN 156 Diagnostic Guideline is now in effect across Scotland, England and Wales. SIGN 156 says, “Prenatal alcohol exposure should be actively considered as a possible underlying cause for neurodevelopmental delay.” These bodies all recognise the importance of diagnosis and care management across the lifespan.
It’s no longer acceptable to ignore FASD. The DHSC FASD Needs Assessment says clearly that “The government recognises the importance of FASD.”
You are within your rights to push for access for an FASD diagnosis.
That said, some areas might not yet have a ‘pathway’ for diagnosis. It’s possible to request the assessments that are needed from local and regional neurodevelopmental services. More information about getting a diagnosis is here.
Some areas are as yet devoid of services. In those cases it’s possible to seek referral to the National Clinic for FASD in Surrey, founded and led by Dr Raja Mukherjee. The National Clinic for FASD is the only specialist clinic in the NHS for assessing and treating children and adults with FASD. The National Clinic can advise local teams who contact them for help in an assessment. Complicated cases can be referred to them for assessment. The clinic usually sees patients over six.
People often ask if the Adoption Support Fund can be used. This is what Government says about that:
“An ASF specialist assessment may assess FASD as part of a wider assessment of a child’s needs. The ASF does not fund standalone FASD assessments.” Gillian Keegan, Minister for State, DHSC, 31 January 2022 It’s important to note however that the ASF may not cover the full costs of an FASD assessment.
The Time is Now document is being used in different areas to help them think about how to ramp up FASD services and you could signpost people to that or ask them to contact National FASD if they have questions.
The National Organisation for FASD, The Priory, High Street
Ware, Hertfordshire. SG12 9AL
England
Helpline: 0208 458 5951