In part 1 of this series for FASD Awareness Month, I examined the impact that FASD had on family life as the children grew to adults. This section considers outside the family unit, the world of work and how my professional role became more and more involved in the FASD world.
From the onset, I’m going to state that parents and carers shouldn’t be expected to become FASD experts and educate everyone that they come in to contact with about the condition that has affected their child(ren). There should be professionals in the fields of education, health and social care who get it, work at understanding and do some of the lifting leaving us to be parents. Parenting is a hard enough role. At the time of writing, we know that that professional knowledge base is woefully thin and if you find them hold on to them, but all too often parents have to do the heavy lifting alongside being a parent and earning a living.
If you find yourself in a situation where you are explaining to teams around your loved one what FASD is and how it affects them, you might find the Ally booklet[ii] from the National Organisation for FASD helpful.
The question is can you maintain a normal pattern of work when you live with someone with FASD?
Well like everything surrounding FASD there is not a yes or no answer ……it’s a maybe.
I know plenty of parents and carers and partners where there they live with one (or more) people with FASD and they manage. There are single parents and carers who I hope are reading this that manage to juggle full-time work and the responsibilities associated with living with someone who has FASD. I salute you all.
For us, living with three young people with FASD from when they were toddlers up until the are now 18, 24 & 27, the answer was no, I couldn’t manage a full-time work commitment as well as meeting their differing, but complex needs. That is with my wife who was designated as their full-time foster carer, at least for some of the time. I probably could do so now, but I am out of practice.
If you are reading this blog on my professional website, then please rest assured I am still working and you will get the highest quality of service from me and my team.
To summarise my professional career, as John Lennon sang, ‘life is what happens to you while you are busy making other plans!’.
It was never supposed to be like this.
The plan was to become a head teacher and be retired by now…… so much for planning.
For 30 years my wife, Maureen, and I were foster carers and special guardians. That is how the young people who live with us came into our lives along with others who also have FASD and have moved onto new homes. As a foster carer, I became the Chair of the England Advisory Committee for the Fostering Network and met with politicians and key figures to make a better case for everything surrounding foster care.
My career pathway took me from being a trained and practicing secondary teacher, into school improvement and influencing national policy and practice. I became a Virtual School Head for Children in Care then an independent trainer and consultant specialising in all of the vulnerabilities that impact care experienced young people. The covid pandemic saw the emphasis switch to FASD, and I joined the National Organisation for FASD for nearly 4 years. Since January as funding for charities has become harder and harder I am back to being an independent trainer again.
Sounds like plan B has been a success, but the truth is that there was never, ever a plan B.
Even in typing that paragraph, it hides the truth of how things just happened and I needed to go with the flow.
If we go back to 2003, a time when my wife and I had never heard of FASD or how it impacted young people. It’s not that FASD didn’t exist, it just that as a senior secondary teacher and in Maureen’s case previously an officer in charge of a children’s homes, we had never been told about it. We should have known.
23 years ago this month, Georgia came to live with us, closely followed by Jody and then Callum, and we started to understand what FASD was and what it meant.
At the time when my professional understanding of FASD slowly started to grow with FASD, I was invited to join Bedfordshire’s school. improvement team to lead on Enterprise Education and Student Voice and Leadership.
Both were new national educational initiatives, empowering children and young people and getting them to think outside the academic curriculum. It emphasised enabling children to speak and after listening to what they said, helping them to understand about their experiences and how their brain worked. I now realise these were the essential skills for living with people with FASD.
I’d left what was my cosy school environment and was privileged enough to see many other schools in Bedfordshire and a few across the country. I started to understand that although schools were different there were some common things about where pupils and students struggled in all schools.
As a side line, because the assistant director knew that I also fostered, I was asked to try and join up social care and education and weave in trauma informed and attachment aware training. Yes, you read that right: as a side line.
After a year, I realised that before kids could learn, you needed to ensure that they were comfortable in their school environment and in their own skin. They needed to understand how their brain worked and what their strengths were. Only then could they even start to learn let alone thrive.
I successfully applied to become the new Virtual School Head in Dudley as part of four government educational pilots, including therapeutic fostering. Professionally, a good move into my developing area of expertise; however, for the family, it was a rubbish decision. We couldn’t sell the house in Bedford. My wife had two children with FASD on her own for at least 4 nights of the week. Not sustainable. I switched jobs and returned to Peterborough as their Virtual School Head.
At this time, I was also learning more about FASD and what was really striking was that the less desirable outcomes associated with care experience mirrored what was also reported for people living with FASD when they grew up into adults. At the time, in my naivety, I thought that about 10% of the looked after children that I was responsible for had FASD. This was the standout learning for me in the 12 months that I was communing to the West Midlands.
Being on a number of national pilots allowed me to start to talk to officials and government ministers in the Department of Education and the Houses of Parliament. Again, that changed my perspective on what was happening.
A chance lucky discussion over breakfast at one of the residentials for the Virtual School Heads on the pilot saw me chatting with the civil servant who was drawing up the new guidelines for looked after children’s medicals. In 2010, medical statuary guidelines emphasised that the possibility of FASD should be considered at every medical appointment. This was 16 years ago now, so in theory any child in the care system should have had the possibility of FASD considered at least once a year through out their care experience.
In the first part of this awareness week writing, I talked about the luck that was moving from Bedford to the Cambridgeshire Fens and having both a GP and a Primary Head who lived with people with FASD. This, in turn, led to Georgia and I explaining to trainee Doctors from Cambridge University what it was like to live with FASD. Georgia was only 7 or 8 and I didn’t really know the full facts, but we did it anyway.
Changing jobs to work in Peterborough, again as a Virtual School Head and taking that national pilot along with me, was another unplanned lucky move. Well at least as far as understanding FASD was concerned.
At that time, I was working alongside Dr Ges Gregory, the designated safeguarding and looked after children’s doctor and her team, at the city care clinic. Her team spent a year researching the prevalence of FASD in children in care and the incidence of prenatal alcohol exposure in adopted children. This is still the only work of its kind in the UK. In 2015, the report on that research was published in a journal alongside another article that I had written on the understanding about FASD in education.
In short, my conclusion was that in 2015 not many people in education understood FASD or what it meant. Sadly, not much has changed. Ges’ findings were more significant. My rough estimate that 10% of children in care had FASD was completely wrong: her findings were that 27% of the children that I was responsible for actually had FASD. Her team also reported that 75% of the over 50 children adopted from Peterborough in a year were exposed to alcohol in the womb. We didn’t look at those children in kinship arrangements. These are the figures that are still used by the Department of Health when speaking about prevalence data in England.
I’ll be clear here that in terms of raw numbers, the 2% to 4% of all children said to have FASD is a much bigger figure than for those in care, almost 10 times. It was, however, easier to get information about the cohort for which the state had a role in their lives. FASD is a really significant factor in the nation’s children as they grow up, and it needs to be far better understood by everyone.
With over a quarter of the children in the care system having been identified as having FASD, it became everyone’s business. Social workers have gone on to adopt in the knowledge that the children they chose to live with had FASD. They remain active members in the FASD community.
At the same time, we as a family appeared in a BBC East short documentary about FASD alongside another family where there were also three children with FASD. We didn’t know Ali McCormick and her family (FASD Dogs) then, but they lived in the next town to us. Two families in similar situations living 7 miles apart who had never met….
The Peterborough & Cambridgeshire Family FASD Support Group[iii] was formed. At first, it consisted of families who we knew in Peterborough who lived with children with FASD meeting once a term in an old church hall in the City with space for the kids to play and for adults to sit and chat. We didn’t know it, but we were making two significant changes. Parents got to meet each other and swap tips and strategies and children who thought that they were the only person with FASD suddenly met other with FASD.
The support group has changed now with over 130 members many of whom have a deep understanding of FASD. Face to face meetings occur in three locations every month in Peterborough and Cambridgeshire, a private Facebook groups allows everyone to keep in contact. We work with the local parent carer forum, both Virtual Schools and SEND advocacy group to raise awareness and we lobby everyone.
Steve Barclay MP was the Health Secretary who brought in both the DHSC FASD Needs Assessment for England and the NICE FASD Quality Standard 204 for England and Wales. Ali’s family and my family are his constituents, and he knows all of us. Yet still we don’t have a local diagnostic pathway in the area or any funded support mechanisms for families. (more about that in future posts / blogs).
But the family had grown up, we were living with three young people with FASD and I tried to work on four day weeks and condensed working hours to create more space to support the growing FASD needs to the children that lived with us. It wasn’t possible and after 3 years I was able to get voluntary redundancy to strike out on my own.
Voluntary redundancy gave me more time to parent (well in theory at least), but I could pick and choose what I wanted to do. I’d signed up with a couple of training providers and went into schools and social care teams to talk about trauma, un-met attachment and the impact of the care system. I always managed to work in the fact that there was everything that I was meant to be speaking about but there was also something called FASD that changed up the issues.
I was also working alongside an FASD charity that has long since disappeared but that put me in touch with what became the FASD UK Alliance[iv] and also found me co-training with Dr Raja Mukherjee, Dr Mary Mather, Dr Cassie Jackson and other figures in the UK FASD world. The training was face to face across Great Britain, so the realisation grew about just how big of an issue FASD was.
We were lobbying in Parliament and speaking to Parliamentary committees. In the lobbies, the NSPCC and Save the Children commented about how successful we were at getting MPs to come and see us. The truth was that many were sponsored by parts of the alcohol industry or represented brewing towns and wanted to find out what the message was. There was also an All-Party Parliamentary Committee on FASD investigating the impact of FASD in England. Sadly, that dwindled and disappeared, not for the want of people trying to encourage MP’s to take an interest.
The highlight of Parliamentary involvement probably came in 2018. In December, Jody asked me whether I was going to Parliament again, not the normal question you’d expect a child to ask, but totting up the times that I had been to Westminster with the National Organisation for FASD[v] came to 8 times that year. Over those years together with other members of the FASD Community we had met with Children’s Ministers in England from a Labour government from the Alliance Government and the first Conservative Government. This set out the groundwork for what was the FASD Needs Assessment and the NICE Quality standard.
Then came COVID….
The National Organisation for FASD had just received one of the first (and only) grants from the DHSC for FASD, at that time I was one of the advisers who was called on so they could test ideas. The plan was to have face to face groups so that people with FASD could meet others with FASD. Still, something that is needed. Also to develop in person training courses for professionals.
After about 3 weeks of funding, the country went into lockdown and plans changed.
Lockdown saw a small group of us (Sandra Butcher, Jo Buckard and myself) sitting on separate sofas and beds learn to use virtual meeting technology. We scribbled new formats for the National Organisation website and created the Me & My FASD[vi] concept and Prevent FASD[vii]. Other creative people also suddenly found that they had time on their hands and to put the design and IT capabilities behind those creations.
With the Me & My FASD site, we wanted to create something for teenagers and young adults to learn about FASD. We created the first accessible website in the world for anyone with FASD to find out more about the condition. That also led to the Living FASD Magazine[viii] .
The funds also meant that I was able to work part time for the National Organisation developing the education and wellbeing work.
Sadly, post COVID funding for charities has become incredibly hard. Alcohol isn’t seen as an attractive investment even against tax and the National Organisation was forced to shrink again.
As of January 2026, I’m independent again, although I maintain the training that we developed for the National Organisation for the charity Kinship[ix]. Together, with Georgia and Callum, we offer training and consultation based on our lived understanding and expertise. For two young people with almost no formal educational qualifications, I have watched them more than hold their own on webinars, with student social workers from universities, in national health meetings and with staff in children’s secure units. I’m meant to be back to offering training on all the vulnerabilities that I was offering 10 years ago, but the demand is for FASD training.
In 2007 there were only a handful of FASD training opportunities in the year. I attended one. Things have changed for the better, but we still have a long way to go and the pool of experts needs to grow,
For me, FASD grew up while I was busy making other plans and down to luck, with huge loads of help for the people that I live with.
Blog 3 later in the month will look at the local scale of FASD in Cambridgeshire & Peterborough Following that, I will drill down into what should be happening in our communities and what is actually happening, using Peterborough and Cambridgeshire as an example. Brian Roberts September 2026
[i] FASD stands for Fetal Alcohol Spectrum Disorder, a lifelong severe neurodevelopmental condition caused by exposure to alcohol while in the womb. If misunderstood and unsupported those with the condition face huge barriers in life that impacts achievement and wellbeing. FASD also impacts the people that they live with and should impact every person in teams around them.
[ii]https://nationalfasd.org.uk/learn-more/wellbeing/supporting-a-loved-one/hearourvoices/ I wrote this alongside the National Organisation a couple of Awareness months ago to simplify the advocacy process for your child. This fillable PDF booklet can be personalised and saved – it serves as a valuable tool for parents and carers to individually tailor with information about their young person and place that specific needs against the current national thinking about FASD. Have a look.
[iii] Peterborough & Cambridgeshire family FASD Support Group https://www.facebook.com/groups/1320037864718272/
[iv] FASD UK Alliance https://fasd-uk.net/
[v] National Organisation for FASD https://nationalfasd.org.uk/
[vi] Me & My FASD https://fasd.me/
[vii] Prevent FASD https://preventfasd.info/
