Agenda item

Chris Clark, Doncaster Council, to give a presentation to ascertain the impact and progress of the project

Chris Clark, Project Manager at One Adoption South Yorkshire, presented an update on the Foetal Alcohol Spectrum Disorder (FASD) project.

 

One Adoption South Yorkshire’s Project Manager explained that FASD occurred when pre-natal alcohol exposure affected the developing brain and body. FASD was a spectrum where each person with FASD was affected differently. While more than 400 conditions could co-occur, FASD was at its core a lifelong neurodevelopmental condition.

 

The project was established to:

 

-         Develop an accessible FASD (Foetal Alcohol Spectrum Disorder) diagnosis pathway.

-         Raise awareness across South Yorkshire within Health, Education and associated sectors.

-         Work with those affected by and supporting those affect by FASD to improve experiences.

 

FASD was thought to affect 3-5% of the general population and was believed to be more prevalent than ASD (Autism Spectrum Disorder) and ADHD (Attention Deficit Hyperactivity Disorder) in England.  However, there was the belief that up to 60% of children in adoptive services may be affected by FASD.

 

The effects of FASD included:

 

-         Executive Functioning; planning, problem solving, transitions, time management.

-         Memory; following instructions, long and short term memory, daily routines.

-         Adaptive Behaviour; understanding social cues and personal boundaries, emotional age, empathy.

-         Regulation; managing and expressing emotions, adaptability.

-         Cognition; attention, planning learning, organisation.

-         Motor and Sensory Skills; co-ordination, writing, reactions to sensory input.

-         Language; reaching developmental milestones, expressive and receptive language.

-         Attention; sitting still focussing on a task, impulse control.

-         Brain Structure and Functioning; brain and head circumference may be small (microcephaly).

-         Academic Achievement; maths, reading, time, money, comprehension.

 

Those different effects became apparent at different ages broadly between the range of 6 and 20 years.

 

The key project deliverables were:

 

-         FASD Pathway development and implementation.

-         Education Psychologists contributing to support for adopted children with FASD in schools.

-         Work with the Integrated Care Board (ICB) to develop an understanding of the effects of FASD and develop initial support services.

-         Reduction of temporary and permanent exclusions for adopted children with FASD.

-         Development of SEND support plans for children with FASD.

-         Work with virtual schools to design a single integrated offer across South Yorkshire.

-         Education Psychologists to link with universities, national and international research to develop approaches for supporting children with FASD.

-         Education Psychologists to work directly with adopted children with FASD.

 

There was a steering group in place to drive and deliver oversight of the project and a Prevention and Awareness Working Group led by Maternity and Midwifery Services. Contact was established with local MPs in order to encourage this being brought to the attention of Parliament in order to generate further support and with a view to implementing a national policy.

 

There was an Intervention and Support Group that considered what support was available for different age groups across South Yorkshire identified what service gaps existed and considered ways to bridge them.

 

Assessment and diagnosis remained a developmental area as a result of issues identifying appropriate partners and clinical leads the project could work with. However, an independent Education Psychology Service was established for adopted children.

 

One Adoption South Yorkshire’s Project Manager summarised the work undertaken in the last 12 months, which included the delivery training for 215 school staff, work with 16 Educational Psychologists and 9 Social Workers in Rotherham, with 33 referrals and active involvement with children in school settings to date.

 

The project was due to start in May 2023, but was delayed until September 2023 with Education Psychology Teams joining the project in October 2023.

 

There were difficulties with identifying the number of children with FASD across South Yorkshire as there was no data, which was further compounded by difficulties in securing FASD diagnoses nationwide.  However, in the context of the levels of deprivation across South Yorkshire, it was anticipated that there was likely an increased incidence of FASD in the region. Whilst there was now a well developed working group, it was felt that this was still missing some key individuals who could assist in that area.

 

There was also adverse impact on the measurability of the impact of the project as a result of the difficulties around diagnoses and data limitations, and similarly barriers to ensuring the scalability of the FASD Pathway beyond the One Adoption Service.

 

There had been successful engagement with a Sheffield paediatrician, with referrals from across South Yorkshire being accepted, however, the take-up rates were not known at the time.

 

All four South Yorkshire Local Authorities had agreed the requirement for midwives to ask about alcohol use at all pre-natal appointments and work in other areas continued around increasing access to Education Psychologists, delivering training and attending events to raise the profile of FASD and the project.

 

The project was due to conclude in September 2025, prior to which the FASD summit would be held in May 2025 which Local Authorities were encouraged to participate in, particularly given the barriers in addressing FASD through commissioned services where it appeared not to be well represented.

 

The Chair thanked One Adoption South Yorkshire’s Project Manager for the presentation and invited questions and comments from Health and Wellbeing Board members.

 

The following points were made and issues raised/responded to during the discussion that followed:-

 

-         Based on the incidence of FASD that was seen in GPs surgeries, either the 1 in 20 estimate was significantly erroneous, or there was significant underdiagnosis of the condition. Data that would clarify which was the case would likely be sourced from maternity records notwithstanding the potential for expectant mothers to be less than entirely forthcoming with midwives regarding alcohol consumption as data suggested was also the case with society more widely. Further barriers to accessing maternal records, particularly in the cases of adopted children existed to the generation of a new NHS number for a child as part of the adoption process, with consent of the birth mother being required to access records connected with the NHS number assigned at birth, which was often refused.

 

-         Drug use was often more well documented in maternity records than alcohol consumption despite the effects of alcohol consumption during pregnancy on foetal development being significantly more damaging than the majority of drugs.

 

-         Rotherham was one of the four authorities which had a working group, but this had only met on one occasion to date.

 

-         Rotherham’s Childrens and Young Peoples Services (CYPS) acknowledged that adopted children in particular may be predisposed to FASD, and that this was not always effectively diagnosed.  As a Service, they were committed to understanding the levels of need for all children and families in Rotherham and commissioning services to meet those needs.

 

-         Diagnosis aside, it was noted that the treatment prescribed for children with FASD bore similarities to those with diagnosed ASD or ADHD, and reassurance was taken from the availability of those support services.

 

-         Despite earlier thinking that had indicated that there was a significant incidence of particular facial features characterising the existence of FASD, data available now indicated that only 1 in 10 children affected by FASD displayed those recognised features, which may have contributed to misdiagnosis.

 

-         Existing pathways for conditions such as ASD and ADHD may have further contributed to misdiagnosis as this would have provided a more direct route to the same access and support that would be needed for someone affected by FASD, but there were notable differences in support needs for FASD sufferers, particularly with respect to Educational Psychology.

 

-         There was a lack of awareness regarding the severity of the adverse impact of alcohol consumption during pregnancy so further work to ensure appropriate advice and support was provided may be worth considering.

 

-         Health and Wellbeing Board members were invited to participate in the FASD working group with a view to securing the future commissioning of FASD services beyond the scope of the project.

 

The Chair expressed interest in attending the FASD Summit in May 2025, and encouraged Council Officers and partners to also attend. The One Adoption South Yorkshire Project Manager was asked to provide details regarding the event to the Chair in order that they could be shared more widely amongst Health and Wellbeing Board members.

 

Resolved:-  (1)  That the FASD project timeline be noted.

 

(2)  That the Board members consider what support they could provide in helping to overcome the challenges faced by the project.