Tag: FASD

Children exposed to alcohol in womb need dedicated support

Thousands of children and young people living with a brain condition caused by exposure to alcohol while in the womb are in desperate need of dedicated and joined up support.

The charity Adoption UK is calling for each nation of the UK to provide a government funded Fetal Alcohol Spectrum Disorder (FASD) in every nation of the UK.

Caused by the consumption of alcohol during pregnancy, FASD is the most known cause of neurodevelopmental disability and birth defects in the UK – but it often goes unrecognised. 

FASD could affect up to 5% of the population but it is estimated a third* of adopted children have the condition. Alcohol misuse is one of the main reasons children are taken into care but many adopted children with FASD will have come from families where there was drinking during pregnancy, but not to access, and where alcohol was not the main reason for them entering care.

Adoption UK’s 2020 Adoption Barometer report revealed one-in-four adopted children are either diagnosed with, or suspected to have, FASD. More than half of families polled had waited two years or longer for a diagnosis, and more than three-quarters felt healthcare professionals lacked basic knowledge about the condition, even though FASD is more common than autism.

Scotland leads the way in the UK, in terms of diagnosis, support, and awareness of FASD. The creation of the FASD Hub Scotland in 2019, funded by the Scottish Government and managed by Adoption UK, quickly established itself as a go-to resource for parents and carers seeking to gain support, information, signposting, training, and to navigate their way through the diagnosis process.

The SIGN (Scottish Intercollegiate Guidelines Network) Guidelines (2019) means children and young people in Scotland now have a route to diagnosis. The guidelines have since been adopted in England where they are awaiting release as the NICE (National Institute for Health and Care Excellence) quality standards for FASD.

Ruth Cliff has been unable to get an FASD assessment for her son, who she adopted 16 years ago, despite knowing his birth mother used alcohol throughout her pregnancy.

Ruth, who lives in England, said: “We were referred to a paediatrician who told me they didn’t have the expertise to assess for FASD and there was no one in our area who could do it either. I asked my local authority to fund an assessment via the Adoption Support Fund, but this was turned down.

“Finding the right support for my son has completely taken over my life, so to have a specialist one-stop-shop like the hub in Scotland, where people truly understand FASD, would be life-changing.”

Adoption UK is marking International FASD Awareness Day, by calling on Stormont, the Welsh Government and Westminster to replicate the success of the FASD Hub Scotland in each nation. 

The charity is also calling on the Scottish Government to commit to the long-term funding of the FASD Hub Scotland.

Sue Armstrong Brown, Adoption UK’s CEO, said: “Great strides have been made in Scotland around FASD but we’ve still a long way to go to ensure individuals with FASD and their families receive the support they so urgently need. Every child entering the care system must be screened for FASD.”

Adoption UK will be launching an animated film today, made in collaboration with parents, carers and young people, some of whom have FASD. Conor, aged 13, who has FASD, provided the film’s voiceover. 

Earlier this month, FASD Hub Scotland launched the first Parent/Carer FASD diagnosis experience survey. 

Adoption UK is also hosting FASD webinars throughout September. 

Find out more here.

Vulnerable children face crisis through missed support opportunities

The lives of some of the UK’s most vulnerable children are being devastated by a string of missed opportunities to provide them with timely and adequate support, a new report reveals today.

The Adoption Barometer, published by charity Adoption UK, also describes the dramatic impact the right support can have. Now in its second year, the Barometer is based on the biggest ever survey of adopters. This year, 5,000 people responded to the survey.

One of the main themes to emerge is the failure in diagnosing and treating brain damage caused by children being exposed to alcohol in the womb. The report reveals more than one in three adopted children in Scotland (35%) are either diagnosed with or suspected to have Fetal Alcohol Spectrum Disorder (FASD).

Almost two thirds (63%) of families polled in Scotland had waited two years or longer for a diagnosis, and more than half (53%) felt healthcare professionals lacked even basic knowledge about the condition, even though FASD is more common in the general population than autism.

Adoptive mother Gemma (below) said: “When Isabelle came to us at eight months-old she was described as a perfect baby. At two and a half she started headbutting, kicking and biting. Then she became obsessed with sharp knives.

“She told me she wanted to ‘cut me open and see me bleed’. We went to countless GPs, health visitors and social workers but we got nowhere. We finally got a diagnosis of FASD when she was four years old. It has made a huge difference to the support we’ve been able to access.”

Scotland is leading the field in the UK, as the first nation to establish an FASD diagnostic pathway. In 2019 the Scottish Government backed Adoption UK in Scotland to launch FASD Hub Scotland, supporting all parents and carers of people who were, or may have been, exposed to alcohol during pregnancy, including Gemma and her family.

The service includes a helpline, online support communities, one to one support, access to enhanced therapeutic support, training and information, as well as training and resources for professionals.

FASD Hub Scotland Project Manager, Aliy Brown, says: “During the month of September (FASD Month) we have been working closely with professionals within Scotland, other parts of the UK and further afield to drive the campaign around the need for awareness of FASD, both for prevention as well as support for families, which is so badly needed, as evidenced in the report.

“We are committed to doing everything we can to see the condition recognised in the same way the other neuro-diverse conditions are, and enable both individuals and their families to access early diagnosis, support and intervention to promote positive outcomes for life.”

Around three-quarters of adopted children experienced violence, abuse or neglect while living with their birth families, often with life-long impacts on their relationships, their health and their ability to learn. Despite the considerable challenges, the report shows that adopters remain positive and resilient – 73% of respondents in Scotland would encourage others to consider adoption.

But failures in policy and practice and missed opportunities to intervene mean that problems often build into a crisis. Almost half (48%) of families with older children report severe challenges, such as being drawn into criminally exploitative behaviour, including child sexual exploitation and county lines activities.

Almost two thirds (62%) of respondents from Scotland with secondary aged children anticipate they will leave school with few or no qualifications because they lacked the right support.

Director of Adoption UK Scotland, Fiona Aitken, said: “It is crucial that adoptive families are given the right support from day one, from both a moral and economic perspective.

“The survey shows 68% of adoptive families had no support plan in place, which we know can lead to crisis situations. The cost of a family breakdown is too high for all involved, particularly the children who have already experienced so much.”

The Adoption Barometer also assesses the government policies that regulate adoption. Welsh policies scored best, with three areas of policy scoring ‘good’. However, all nations score poorly in at least one area of policy. Policy relating to finding families for children scores best across the board.

Policy relating to FASD scores worst, with all nations assessed as ‘poor’, and adopter experiences also ‘poor’ in all nations, however Scotland does come across better than the other three nations in respect of their nationwide strategy.

There has been some progress since last year’s Barometer, including the extension of the English Adoption Support Fund (ASF) and the first experimental data collection on school exclusions in England, both of which were recommendations from last year’s report. In Wales there has been a £2.3m investment in adoption services.

Although respondents in Scotland were most likely to consider their social worker to be knowledgeable and understanding they were least likely to be satisfied with the range of support services on offer, perhaps reflecting the comparatively low proportion who were able to access enhanced support services.

Currently all support services are expected to be provided by agencies, with the exception of the Big Lottery Funded Therapeutic and Education Support Services in Adoption (TESSA), hosted and provided by Adoption UK Scotland.

The Adoption Barometer calls on the governments in all four nations of the UK to provide detailed therapeutic assessments for every child before they arrive in their new family, with up to date support plans to be maintained into early adulthood.