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“Every session was a real revelation”

One participant’s story about taking part in SPECIFIC: a course for those who care for someone with FASD

Between November and December 2020, we delivered the first ever SPECIFIC programme to a small number of volunteer participants. This was the first stage of testing to make sure that it was deliverable and well-received. The participants – nine sets of caregivers of children with FASD – reported that they found the programme to be useful and enjoyable. Our psychological questionnaires indicated that their stress levels had reduced, their knowledge of FASD and their feelings about the effectiveness of their own parenting had improved, and their children’s behavioural difficulties had also reduced.

Six months after the programme, we caught up with one of the participants to ask her about her experience of SPECIFIC and how things had been since she took part.  

Louisa is an adoptive mum of a boy with FASD who was nine years old during the programme.

What made you want to take part in SPECIFIC?

Louisa: I’d known since he was placed with us at 18 months that there was something wrong with our child, but no one would listen. It wasn’t until he was eight that we got the FASD diagnosis, quickly followed by several others and it felt like our world had ended. We’ve had to reimagine so many hopes and dreams and come to terms with a very different future.

I get really down sometimes about all the wasted years of not being heard and all the help our child has missed out on. There is so little understanding of FASD, and I don’t want any other parent to live through what we’ve lived through. So I really wanted to support this and any other project that furthers the understanding of FASD and gives parents the tools to support their children.

I am truly grateful to Alan and his team for their work in this area. You are all amazing.

Did you find out things that were helpful?

Louisa: Gosh yes! I am someone who researches, researches and researches to try and understand. I must own every available book on FASD but there is so much on the course as well as great personal insight from the facilitators.

Every session was a real revelation and helped put stuff into context with some real “ah ha” moments.

Did you enjoy the course?

Louisa: I loved the course! And looked forward to it every week. It made me feel far more in control of the situation and better prepared to support my child (whose behaviour can be challenging to say the least).

Did you make friends on the course?

Louisa: Yes! It makes a massive, massive difference to be around other parents who “get it” and who you can be open with. The relief of being able to share experiences we’d kept to ourselves and cried about, only for someone to say “my child too” was really healing.

One of the things about FASD is that often our children look and present like any other child. So when you talk about your experience or worries with people outside the FASD world, they think you’re neurotic or a liar and you end up retreating inwards with no one to talk to.

We have our WhatsApp group and share messages, catch up and support each other.

What about the experience of taking part in research? (e.g. was doing the interviews at the beginning and end interesting/time consuming/worthwhile?)

Louisa: That was absolutely fine as I see it as an exchange. The participants get the support they need, and the academics get the feedback they need for their research.

Plus it was helpful tool to use to map out and measure my own progress.

And finally, how have things been since the end of the programme? Do you still use any of the strategies we spoke about?

Louisa: Absolutely! The biggest one we use is time which was quite the revelation. We are a lot more conscious of making sure that after we give him an expectation we leave plenty of processing time and then a gap for him to transition.

We are also a lot more aware of change/routine and how that can affect him and are better able to plan and frame things for him. School have been amazing working with us on this and it’s helped them to “get him”. 

Most importantly it gave us a window into how his mind works and as a result we are better able to support him. He’s ten now and the hormones are raging so this has been invaluable in helping us work out what the triggers are.

Read more about SPECIFIC on the project page.

If you’d like to receive notifications about upcoming studies including the next stage of SPECIFIC and wish to join our mailing list, or if you have any questions about our research, send us an email at FASD21@salford.ac.uk  

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FASD awareness day

Every year around the world, in the month of September, people, organisations, and communities gather to celebrate the world awareness month for fetal alcohol spectrum disorder (FASD). FASD describes a condition that is associated with the drinking of alcohol during pregnancy. The alcohol can damage the unborn baby’s brain, and sometimes lead to behavioural problems in the affected child. The damage can also cause a range of physical health problems.

Although FASD is more common than Downs syndrome or Autism, it is widely under-recognised and under-diagnosed. See more about our research on the prevalence of FASD here.

FASD is usually described as an ‘invisible disability’. This means that for many people with FASD, their disability is not recognised in society because they appear normal and talk normally. However, people with FASD often experience difficulties in everyday functioning because of their FASD. This means that in schools and workplaces, people with FASD may go unnoticed, and their difficulties may be blamed on a ‘bad attitude’ or ‘bad behaviour’. Some of the outcomes of FASD in children include poor academic performance, poor social behaviours, and constant encounters with the police. See more about our research on FASD and the criminal justice system here.

FASD awareness day began in September 1999 and has been used as an opportunity to create awareness about FASD and inform people about the dangers of drinking alcohol in pregnancy. The choice of the ninth day of the ninth month signifies the nine months of pregnancy. Different organisations and communities in different parts of the world organise presentations, dances, walks, runs and different activities to create awareness about FASD.

Therefore, this year we, the University of Salford FASD research team will join forces with individuals, communities and organisations around the world to create awareness about FASD.

Please get in touch if you wish to know more about FASD: FASD21@salford.ac.uk

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Talking about FASD

We like to talk about FASD and our research. We give talks for groups including academics, local professionals and families. Recently, we have done presentations on our research to community paediatric staff, CAMHS teams and primary school teaching staff.  Depending on the audience, sometimes we do an introduction to FASD as a condition.  For other audiences, we do a more detailed look at a particular research project, including the design of the study, sample size strengths and limitations of our results and implications of the findings.

We are always happy to host a Q&A session after. We have found the Q&A sessions are invaluable as open discussion about FASD can be an effective way to tackle misinformation and stigma associated with the condition. This also offers us the opportunity for two-way discussions, helping us with feedback on the potential impact of our work and help us to make more informed recommendations for policy and further research.

Titles of talks we have given recently include:

Prenatal Alcohol exposure and FASD: an introduction

Unravelling FASD and early trauma

How many children in Greater Manchester have FASD?

“I’m always up against a Brick Wall with them” Parents’ experiences of accessing support for their child with a newly recognised developmental disorder​

Neuro-developmental findings from the ADD GM study: Extent of previously undetected Developmental Disorders in children assessed at three primary Schools in England 

FASD and the criminal justice system

Below is some of the feedback from our recent presentation to Manchester Community Paediatricians for their Continuing Professional Development (CPD) event:

The study team have done a huge amount of work in setting this up and highlighted that FASD is probably more common than we think”

Very pertinent topic related to cases we do see. Clear slides, thorough explanation at the right level for our audience

Please contact FASD21@salford.ac.uk if you would like us to talk to your group.

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Developments in Fetal Alcohol Spectrum Disorders – a UK perspective

Read full Blog by Dr Lisa Schölin, public health researcher, in which our input is acknowledged.

Visit SHAAP Blog page

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NICE extends consultation period for new quality standard on FASD

In line with recommendations by the UK’s Chief Medical Officer and the Royal College of Obstetrics and Gynaecology, the quality standard looks at the assessment and diagnosis of FASD, as well as prevention. 

Healthcare professionals are encouraged to discuss the risks of alcohol consumption with expectant mothers and to share information on supportive care if needed, such as counselling or help to stop drinking.

The quality standard also highlights the role of recording alcohol consumption in the diagnosis of FASD, and steps that should be taken to assess, diagnose, and manage the condition.

The draft statements were originally published for consultation during March and April 2020. However, because this period overlapped with the start of lockdown, many organisations didn’t have an opportunity to comment on the quality standard. We are therefore holding a second period of consultation to allow a further opportunity for comment.

Judith Richardson, acting director of health and social care at NICE, said: “The feedback we receive from external organisations and members of the public is instrumental in understanding what works, and what doesn’t, for practice in England.

“Our hope is that this second consultation will provide stakeholders with the opportunity to help NICE produce statements that will reduce the prevalence of, and improve the diagnosis of FASD.”

Professor Tim Draycott, Vice President for Clinical Quality, Royal College of Obstetricians and Gynaecologists, said: “Alcohol consumption during pregnancy can lead to long-term harm to infants, including Fetal Alcohol Spectrum Disorder (FASD).

“Although diagnosis of FASD can be difficult, diagnosis at the earliest possible stage is vital for early intervention and care programmes that lead to better outcomes for infants at risk of FASD.

“It is important that a wide variety of stakeholders participate in this consultation on FASD to ensure that the quality standard is robust, achievable and has a multidisciplinary approach to the care of woman and their infants at risk of, and affected by, FASD.”

The quality standard is the latest in a series of guidelines and quality standards produced by NICE to address public health issues such as air pollutionsmoking cessation, and alcohol-use disorders

The draft quality standard is open for public consultation until 18 September 2020 and can be viewed here. All comments submitted during this period, as well as those submitted during the initial consultation period will be reviewed by the committee.

Source: NICE

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FASD Conference 2019

A specialist FASD conference, approved by the Royal College of Paediatrics and Child Health, was held at the University of Salford Media City campus in Salford Quays on Thursday 12th December, 2019. Delegates heard from internationally renowned speakers on the history of FASD, diagnosis, issues around drinking in pregnancy, the presentation of FASD, the life experience of FASD, the experience of caring for a young person with FASD, prevalence, complexities with trauma and attachment issues, comorbidity with other disorders, issues around social care, national healthcare guidelines, and behaviour management of children with FASD. Click here read more…