Blog: Barriers to childhood stammering services report

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David Pinto-Duschinsky MP speaking at the Action for Stammering Children event

At a reception at the Houses of Parliament yesterday, Action for Stammering Children presented their report into specialist support for childhood stammering in England. Catherine Woolley, our Programme Lead for Children & Families, went along and tells us about their recommendations.

Yesterday, STAMMA were thrilled to join Action for Stammering Children (ASC) for their Parliamentary Reception hosted by David Pinto-Duschinsky MP. We got the chance to have a first look at ASC's latest policy publication and the ways in which this research both informs their recommendations for future policy and lays the groundwork for their advocacy work for 2025. As well as David, we also heard from ASC's chair of Trustees Dame Jane Roberts, the CEO of ASC Dr Ria Bernard, and one of our patrons (and ASC's vice president) Ed Balls. 

In their report, ASC explore the NHS speech & language therapy (SLT) support available for children and young people who stammer in England.

The great news is that 92% of the NHS Trusts reported that they have a stammering pathway in place and/or an SLT who specialises in childhood stammering. Most supported children and young people up to the age of 18 and accepted open referrals (meaning that families can refer directly to the service themselves). 

Postcode lottery

However, ASC found that across England children who stammer face a postcode lottery. Waiting times vary wildly across the country, ranging from less than a week in some Trusts to almost a year in others. The type and amount of support available also varies, with children receiving on average only 6.5 sessions of one-to-one therapy and/or 5.6 sessions of group support. As David said in his opening speech, for some children we know that this is not enough. 

Families and SLTs want even more accessible information about stammering and the referral process is needed to make sure that families know where and when to access support. It highlighted how at STAMMA we need to keep working with GPs, health visitors and other professionals to get the information on our website out to the people who need it. 

The report also showed that we need to keep raising awareness of stammering and its impact with health and education professionals so that they signpost families to the right services rather than telling people to 'watch and wait' for their child to 'grow out of it'. 

While the report found that most NHS Trusts have some kind of specialist support for children who stammer, SLTs highlighted their concerns about the future and their worries that over time these services might be eroded or diluted. 

We know that without new SLTs being supported to specialise in stammering, it gets increasingly harder to replace skilled therapists when they leave or retire. At STAMMA we know the need for services to continue developing their pathways for stammering and SLTs to support those pathways. Through our SLT Peer Support Group, we explore challenges facing services across the UK and help therapists learn from each other about how to provide best practice despite service pressures.

The power of community

Finally, families talked about the power of community. The need to access support groups and have space to talk about their success, fears and worries. We have amazing support groups for parents at STAMMA led by volunteers who really know what it's like to be a parent of a child who stammers. ASC's report highlights how we need to get that support out there to more families, and continue to develop local groups for people to connect in person too. 

Action for Stammering Children's report showed us that while lots has changed since the Suffering in Silence report in 2019, there is still so much to be done to support children and their families to access speech & language services. 

Find out more about the report and ASC's 7 recommendations for change in their report 'Specialist support for childhood stammering in England'.