ASC & NIHR working together to secure funding for childhood stammering research

Last month, as a direct result of the work we have been doing to champion stammering research, the National Institute for Health & Care Research (NIHR) announced new funding for research into childhood stammering. In this article, our CEO, shares what this means for the stammering community and the families we support.

Two years ago this month, we published the Top 10 Research Priorities in developmental childhood stammering at University College London (UCL). The outcome of a two and half year project with the James Lind Alliance (JLA) involving hundreds of young people who stammer, their families and the clinicians who work with them. These 10 research priorities represented the areas of research that young people who stammer want future research to address. It was a ground-breaking moment for the stammering community – and for our charity.

But why does it matter?

Around 8% of young children will experience stammering. For some they may stop stammering and for others, they will continue to stammer throughout their lives. Apart from the fact that more boys stammer than girls, stammering affects individuals from all backgrounds equally. Reference has been made to stammering since the time of Aristotle. Despite all of this, we still know comparatively little about it relative to other childhood conditions. We don’t even have a definitive answer to what causes some children to stammer (despite significant headway over the last couple of decades). To understand stammering doesn’t just mean that we can answer those burning questions that young people ask us all over the country, it will inform the development of therapy approaches, effective support, advocacy efforts and policy influencing – ensuring that families are getting the support they need for their children to thrive.

Much of the time, the researchers and institutions decide what questions to address in their research. There isn’t always an easy way to involve people with lived experience in the process of drafting a research question or putting together a research grant. At Action for Stammering Children, we work both to champion research and to build a bridge between the research community and young people who stammer and their families. Through this lens, we led the very first James Lind Alliance Priority Setting Partnership (PSP) into childhood developmental stammering. We brought together young people, parents/carers, clinicians, as well as our partners at the Royal College of Speech & Language Therapists and STAMMA to shape the future of stammering research in the UK.

Many in our community will hopefully remember the launch of the Top 10 – an achievement that serves as the foundation for our research activity. Completing the project was one thing, making sure that it served its purpose was quite another. Since that seminar at UCL, we have been working to influence the priorities of researchers across our networks, and funders in this space, to ensure that future research is helping to answer the questions that young people still have about stammering. In August 2026, we had our biggest breakthrough yet.

Securing funding for stammering research

If we want to improve our understanding of stammering, we need more rigorous research. To achieve this, we need to make sure that more funding is available to the research community. One of the primary goals following publication of the Top 10 was to increase the amount of research activity and research funding in childhood stammering. So, we started having conversations with funders.

The National Institute for Health and Care Research (NIHR) is a major funder of health and care research in the UK, funded by the Department of Health & Social Care. Late last year, we entered discussions with the team responsible for the NIHR’s Health Technology Assessment (HTA) Programme, which funds research that evaluates the impact of healthcare interventions. They were interested in our Top 10 Research Priorities and we therefore spent several months making the case to their team that they should make funding available to address Priority #1:

“What are the most effective forms of speech therapy for children and young people who stammer to give the best long-term outcomes?”

This is a big area of research and so we worked with the HTA team and our colleagues at the RCSLT to narrow this down to focus on effective speech and language therapy approaches for school-aged children. Evaluating the effectiveness of a therapy approach is important in terms of optimising outcomes for children accessing that therapy and for commissioners who are funding speech and language therapy services. If we want greater investment in speech and language therapy for stammering, we need to be able to make the case to those who hold the purse strings.

Finally, in August, we received confirmation that the HTA Programme would fund research addressing our #1 Research Priority. This was a breakthrough moment – one of the major health funders in the UK had allocated funding to developmental stammering. And what’s more, this opportunity would fund research that young people and their families would find the most meaningful.

This is a huge achievement for all those involved in this project, but more importantly, for young people who stammer and their families. Thanks to this funding, there is an opportunity to fund more research into therapy approaches for childhood stammering.

We hope that researchers across the UK have taken note and are busy writing their applications. If you haven’t heard about this yet, take a look at the NIHR website – you have until 18th November to apply for this funding round.

Interventions for school-aged children with a developmental stammer | NIHR

As far as Action for Stammering Children is concerned, this is just the beginning.