This petition was submitted during the 2017–2019 Conservative government
Petition Add the blood test for 22q to the Guthrie test 'heel prick' newborn screening.
My daughter has 22q11.2, she's historically been failed by clinicians, educational practitioners/institutions, social care and society in the wider context. Despite my concerns, late diagnosis at 4y6m, has impacted on her self esteem, language, social, emotional, mental health and life chances.
Max Appeal is the UK charity that supports those affected. According to the All-Party Parliamentary Group, 22q11 could be the most common genetic disorder. 1 in 500 of the population has been reported, this would be 2x Down Syndrome, 6x Cystic Fibrosis. They found Mental health difficulties affect 93% of people with 22q11and it's the single most common cause of schizophrenia which affects 25% of people with 22q11. Delays in diagnosis has an adverse affect on the child, their family and it's also a hidden cost for the NHS, social services and welfare state.
This petition is closed This petition ran for 6 months