Oglesby Charitable Trust funding for new parenting course to help families living with condition ‘more common than autism’

The Oglesby Charitable Trust (OCT) is an independent family trust which supports charitable
work primarily in the North of England. The Trust shares its roots and purpose with
Bruntwood, having been set up by the late Michael Oglesby and his wife Jean, to
support the cities and communities where Bruntwood operates. The primary focus areas for
the OCT are to champion arts and culture, education, the environment, medical research
and activity relating to social and health inequality, and to encourage others to do the same.

OCT activity is funded by the Oglesby family through profit generated by Bruntwood’s
success. Both organisations are, to this day, led by Oglesby family members, and share the
same values relating to community responsibility and philanthropy. 

Working with the OCT allows Bruntwood a deeper understanding of its cities and the people
in them. This, in turn, supports both the Trust and Bruntwood in addressing the root causes
of issues facing communities, deepening engagement and creating a greater overall social
impact.

The latest major piece of funding delivered by the OCT is for research around Fetal Alcohol Spectrum Disorder (FASD). The 9th September is International FASD Awareness Day; find out more about the disorder, and the details of the OCT's involvement with this project, in the press release below.

The University of Salford and the National FASD Clinic (Surrey and Borders Partnership NHS
Foundation Trust) has received £400,000 for research to help support families of children
with Fetal Alcohol Spectrum Disorder (FASD).

The money will be used to test a new parenting course designed to help parents of children
with FASD, called SPECIFIC (Salford Parents and carers Education Course for Improvements
in FASD outcomes In Children).

Funding has been provided by the Oglesby Charitable Trust (£150,000), and the NIHR
Research for Patient Programme (£250,000), meaning the research team can now test the
programme on 120 families.

FASD is caused by drinking alcohol in pregnancy, and can make it difficult for children to
communicate, keep friendships, and stay calm and still, among other difficulties. Today, 9
September, is International FASD Awareness Day. This day was chosen so that on the ninth
day of the ninth month of the year, the world will remember that the nine months of
pregnancy should be alcohol free.

Children with FASD have damage to the brain which will last for the rest of their life. They
are more likely to be excluded from school and later, as adults, they might suffer from
mental ill-health or get into trouble with the law.

Joint lead investigator Professor Penny Cook from the University of Salford said: “New
research shows FASD is very common, affecting 2-4% of children. This makes it more
common than autism, but it is underdiagnosed.

“When a child gets diagnosed with FASD, their parents need help and support. A parenting
course might help, but there is currently no course especially for FASD. This makes it difficult
for doctors to know what to recommend.”

SPECIFIC is a seven-week course where families meet online each week. There are two
facilitators: one is a trainer, and the other is an FASD-experienced parent. The course will
help carers to understand the nature of the damage caused by alcohol to their child’s brain,
and give them strategies to help manage their child’s behaviour.

The research team plans to test SPECIFIC on ten groups of six families and compare findings
with families that have not had the course (known as a ‘control group’). Parents’ stress levels and their parenting confidence will be monitored. Once results have been recorded,
the control group will also get the training course.

Joint lead investigator Professor Raja Mukherjee from the National FASD Clinic explains:
“We hope that eventually the NHS and charities will be able to deliver the course to
thousands of families. First, we need to show whether it is easy to get parents to join and
complete the programme, and if it appears to improve the lives of families.

“The course has been developed with the expertise from parents of people with FASD,
charities, researchers and clinicians. We also trained nine families using SPECIFIC, and their
feedback has helped us to make it even better. We hope that families will continue to be
involved by helping us to run the project and analyse the data.”

Jane Oglesby, Trustee of the Oglesby Charitable Trust, said: “We are delighted that our
support for this programme has enabled the team to attract funding from other sources, to
meet the remaining costs for a high-quality evaluation and enable the programme to run at
the scale we have envisaged. It is clear that there is no shortage of need – and, as a Trust, it
is our role to make visible, and to respond to, such pressing needs as efficiently as
effectively as possible.

“We are pleased to support the significant energy and expertise that Professor Cook, Dr
Mukherjee and their team bring to bear on this subject.”

If you're interested in knowing more about FASD and the University's work to research the disorder, head to their website here.