Since 2018, a nation-leading programme of activities designed and delivered by affected families in our city-region has provided new forms of support, raised awareness of the risks, and placed alcohol use in pregnancy firmly on the agenda. Informed and inspired by our achievements, many other parts of the country are now embarking on their own journeys to tackle alcohol exposed pregnancies and FASD too.
FASD is a full-body diagnosis that can include more than 400 known conditions. It affects more people than autism and is often undiagnosed or misdiagnosed. Exposure to alcohol in pregnancy can harm brain cells and damage the nervous system of the developing baby throughout the entire nine months of pregnancy. This can cause lifelong disabilities which impact on the daily lives of the individuals directly affected and their families. But they can be prevented.
In 2018, we embarked on a system-wide programme that aimed to reduce the number of alcohol-exposed pregnancies (AEP) and prevent new cases of FASD. At the time we knew that nationally around 4 in 10 babies were affected and anticipated this would be higher still for Greater Manchester, with its high levels of alcohol consumption and alcohol related harm. But this was very much an estimate.
From the outset we were clear that we wanted to provide ‘academic scaffolding’ to give a basis for the work. Our ground-breaking prevalence study, a collaboration with the University of Salford, the University of Manchester, the University of Liverpool and the National FASD Clinic, has been pivotal to the whole programme. Prior to this, work done in the UK was based on international modelling, not UK data. Our study found that there are between 619 and 1,238 babies affected by FASD born in Greater Manchester each year. This is an important evidence base that will help to inform future service development and commissioning decisions. It provides a baseline that will allow us to monitor progress in reducing new cases of FASD.
A golden thread that ran throughout the programme from the beginning was the need to provide reliable and consistent information about alcohol use in pregnancy so that parents-to-be can make informed decisions. Our core message, in line with guidance from the Chief Medical Officer, is that there is no safe amount and no safe time to drink alcohol during pregnancy. This is promoted by our award winning Drymester digital campaign, with a website, downloadable resources for health professionals and social media posts. The first campaign of its kind, the target audience is broad including potential new parents plus partners, families, and friends. Although locally focused, Drymester has been adopted nationally by maternity providers and internationally by FASD campaigners. More recently, Drymester has been extended to workplaces, encouraging them to ‘spread the word’ about the impacts of drinking alcohol in pregnancy and the risk of FASD. Employers that have already signed up include a local authority, a housing association and a beauty salon.
Tailored training has been provided to over 900 health and social care staff – including health visitors, GPs, school nurses and many more – to equip them with the right knowledge and skills to discuss the harms of alcohol use in pregnancy. We’ve had really positive feedback. It’s clear that conversations about alcohol in pregnancy were happening before, but not to the same extent as they are now.
Parents with lived experience of AEP and FASD were involved right from the start. Through our ‘Parents as Partners’ group they shared personal insights that shaped and enhanced the programme – they were our driving force. Their feedback highlighted the lack of support for families affected by FASD. We aimed to address this by providing grants to voluntary sector organisations to run support groups.
The parents we worked with highlighted the need to reach young people who may one day be parents themselves. ‘Birthday’, an interactive performance and educational workshop by young people from the Oldham Theatre Workshop, has reached around 5,000 young people in schools and many more via a short film, which has been used national and internationally.
Last month, we published an evaluation report looking back on progress over the past few years. In the foreword, family support group, FASD Greater Manchester, terms our work “ground-breaking” and highlights it’s “very positive and rapid influence on change for the AEP and FASD agenda.” A comment from a family with lived experience of FASD, says “[Greater] Manchester had the insight and courage to invest in and raise awareness of a condition which has been ignored for far too many years.”
Our work, in particular the prevalence study and Drymester, has succeeded in raising the profile of AEP and FASD. When we first started out, there was little national policy or guidance to drive prevention of FASD. This has changed more recently with the publication of a Department of Health and Social Care health needs assessment and a maternity high impact area document on reducing the incidence of harms caused by alcohol in pregnancy, produced by Public Health England. The Greater Manchester programme was cited as an example of good practice in both. Many other parts of the country are now embarking on their own journeys to tackle AEP and FASD. We’re now looking forward to the implementation of the newly published NICE FASD quality standards and will be engaging with local partners to decide our next steps. We’re also working with clinical colleagues to discuss how we maintain and expand developments to maternity care.
I’m really proud of what we’ve achieved so far and I’m excited about what lies ahead. We’re raising awareness, we’re getting people thinking, and we’re placing AEP and FASD firmly on the agenda – in Greater Manchester and beyond. Training our workforce will have an impact for the rest of their career. This risk isn’t going to go away, and we need to empower colleagues to have those tricky conversations. One of the most important elements for me was the involvement of families affected by FASD. Their experiences provided a reminder, if ever we needed one, of why this is so important.