Thursday 9th May

Sufferers of Foetal Alcohol Spectrum Disorder (FASD) are being failed by clinicians according to a new report published today.

A Freedom of Information request, sent to all Clinical Commissioning Groups (CCG) and NHS Trusts by NOFAS-UK, found that not one CCG has a policy on commissioning services for FASD. It also found that almost 80 percent of CCGs do not provide diagnosis for children with FASD and 92 percent do not provide diagnosis for adults.

Only 19 percent of trusts and health boards provide post-diagnostic services for those with FASD. Similarly, these bodies indicate they are not planning to expand their services and the vast majority are not conducting training or engaging in public on FASD.

This contradicts government policy as repeatedly reinforced by ministers, which unequivocally and clearly states that responsibility for commissioning FASD services lies with CCGs.

Without commissioning, most NHS Trusts do not provide FASD services.

Sue Armstrong Brown, Adoption UK’s chief executive, said: “FASD is a hidden epidemic that affects at least two out of every 100 people in the UK. It’s more common than autism. Around three quarters of looked-after children are at risk.

“FASD can have a massive impact on the social and mental health, intellectual ability and attainment of those affected.”

People with FASD are often misdiagnosed with similar or co-morbid problems, or not diagnosed at all.

In a survey, which Adoption UK carried out with Radio 4’s File on 4 in 2017, more than a third of respondents said they had considered that their child may have FASD.

FASD is the most common non-genetic cause of learning disability in the UK. It is lifelong and untreatable, and it is also entirely preventable. The costs to the economy are unquantified but breath-taking – an American study put the average cost of one baby born with FAS at $2m over his or her lifetime.

Mrs Armstrong Brown added: “Alcohol misuse is one of the main reasons children are taken into care, and it’s clear that foster, adoptive and kinship care families are at the epicentre. FASD should be ruled out for every child taken into care. Only by catching it early can we provide the extra support and understanding these children and their families need.

“We need to see a concerted effort in each nation of the UK to improve prevention, diagnosis, and support for FASD, with particular attention to disproportionately impacted groups.”

Government and leading medical experts, including the British Medical Association (BMA), repeatedly emphasise the importance of early intervention and diagnosis for those with Foetal Alcohol Spectrum Disorders.

Adoption UK backs both NOFAS-UK's recommendation of a Parliamentary inquiry to explore the situation outlined in this report; and their call on Government to issue a Green Paper, using the consultative process to initiate a debate both inside and outside Parliament about the change needed to improve FASD prevention and services across government.

The issue will today be addressed at a meeting of the All-Party Parliamentary Group on FASD.

You can read the full NOFAS-UK report here.