We are delighted to update you on the launch of the [email protected] website – a unique online cleft therapy and parent training resource for children with cleft articulation difficulties.

Visit [email protected] Website

Children born with a cleft palate often have complex speech disorders. Indeed, about two thirds need speech therapy intervention and 20% have persistent speech disorders into their school age years and sometimes even into adolescence and adulthood. The consequences of that are far reaching. These children often need therapy and unlike other speech disorders, they don’t change spontaneously just with maturation.

Alannah has 22q11 deletion syndrome - which has led to a number of medical, educational and social challenges for her. Children with 22q11 deletion quite often have issues with their palates and Alannah was diagnosed with an occult submucous palate. She has low muscle tone (common with 22q11 deletion) so her muscles are weaker - including it turns out - the muscles of her soft palate. The muscles were also wrongly aligned, being at an angle to the centre line of the palate rather than perpendicular. None of this was helping her make the ‘normal’ speech sounds and we were starting to get clearer on why she sounded so nasal, why she couldn’t consistently make any of the ‘plosive’ sounds like b, d, t and why others sounded ‘glottal’ (very throaty)….. Alannah had a number of operations at Great Ormond Street combined with speech therapy, not just with the SLT at GOS but at school and topped up at the weekends from home. Slowly but surely, Alannah’s sounds became more consistent and it was clear that the palate was more successfully closing off fully at the back of the throat.  The glottal and the nasal sounds gradually disappeared and Alannah’s speech became much, much more intelligible. At a clinic in April 2014, I heard the words I thought we would never hear, that Alannah’s speech was now ‘within normal range’.   

- Alannah’s mum 

Read Alannah’s full story here.

We know that there is a really high demand for speech therapy nationwide and accessing therapy is a challenge so we believe the [email protected] website will be of real interest to cleft services across the country. Evidence from the Bercow - Ten Years On Report and a survey by the lead therapists in the English and Welsh regional cleft services found that speech and language therapy services are frequently inadequate, inequitable and a bit of a postcode lottery.

In 2012, Debbie Sell and Triona Sweeney undertook focus groups with a group of parents with pre-school children in Dublin to get their views on access to speech and language therapy. These worried and frustrated parents wanted to know what they could do to help their children as they sat on the waiting lists for their therapy. And from this the clinical question emerged. Can trained parents be effective in helping cleft articulation difficulties in their children? This idea of needing to empower parents started to emerge and CLEFT helped fund the research study called ‘Parent Led Articulation Therapy (PLAT) Randomised Controlled Trial’.

Read further about the PLAT Research Project

The [email protected] website has come out of the PLAT research project. It consists of parent training courses for therapists to deliver and a unique Therapy Programme Builder with linked resources which therapists can use and send to parents.   

Therapists can now register on the website to use the Therapy Programme Builder and the Resources. The [email protected] team has started delivering monthly webinars to train therapists in using them. They have attracted interest from far and wide including Japan, Hong Kong, Singapore, Australia, New Zealand and Ireland.

The [email protected] therapists have just completed the adaptation of the original face to face parent training package to an online webinar series. Their current work is focusing on testing the virtual parent training when delivered by other therapists. They plan to launch this aspect of speech at home in the summer of 2021. Therapists will then able to offer parent training, empowering parents to work with SLTs on child specific programmes developed using the Therapy Programme Builder and Resources.

You can listen to Triona and Debbie describing the study in a podcast by the Royal College of Speech and Language Therapists. In fact, the study was selected by the College for the first ever podcast on a research paper published in their Journal!

Listen to the Royal College of Speech and Language Therapists podcast

HOT OFF THE PRESS!! 

A new grant has just been awarded from the Temple Street Foundation, Ireland, to fund a part-time specialist speech and language therapist at Children’s Health Ireland (CHI) at Temple Street, Dublin to set up and deliver the Speech at Home intervention in partnership with parents and to fund some consultancy time of the Speech at Home team. We are delighted at this development and the recognition of the value of [email protected]