Two of our clients tackling the trapeze

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1 The Emily Hughes-Hallett Fund and Action for Stammering Children Ali Berquez, Clinical Lead and Elaine Kelman, Head of Specialty, Specialist Speech & Language Therapists, The Michael Palin Centre. Introduction In 2010 the Emily Hughes-Hallett fund (EHH) made a generous donation to the Michael Palin Centre in recognition of the outstanding contribution to work with children who stammer (CWS) by our colleagues Frances Cook MBE (former Head of Specialty) and Diana de Grunwald (former Business Administrator). We would like to give an update about the three activities that were undertaken and encourage more teams to benefit from these opportunities. Circus Skills Specialists in stammering around the UK have explored ways of challenging fears and expanding comfort zones during residential courses for children who stammer over many years. We decided that we wanted to explore the added value of this during our 10 to 14s intensive course programme. We opted to try out Circus Skills for one day of the 10 day programme: activities included tightrope walking, swinging from a trapeze, team balancing skills and juggling. Our team described how the experience allowed clients to experiment with feeling the fear and doing it anyway, they learned skills on the ground first and built towards doing activities at a height, they had conversations about learning and expecting to fall and the advantages of feeling the fear once, then being able to do a task again and again. Two of our clients tackling the trapeze

2 What did clients learn about themselves? I am brave, I am good at stuff, I kept on doing it, if you do it again and again it s less scary, I m fearless, I m good at concentrating, I can take on challenges because I did the trapeze, I was alright as the platform buddy it was easy (though) I thought it would be hard, I learned about myself that I m courageous. What message can they give themselves next time when they face a challenge? When you believe, you can do anything ; I can do it if I practise and try hard ; The more times you do it the more confident you get ; The message I would give myself in a tough situation is not to panic, stay confident and believe you can do it ; and The more you do the more you succeed the more you can do and the braver you are to do more. Palin Parent Child Interaction therapy training courses As a team we are committed to building knowledge and confidence in working with clients who stammer (Berquez et al, 2011). However, in the current climate we recognise that there are increasing restrictions on training budgets and that our colleagues tell us they have difficulty in getting funding for training. We chose to offer three charitably-supported 2-day Palin PCI training courses to SLTs across the UK each year. Over the past two years we have run six courses in Palin PCI and we have trained a total of 180 SLTs on those courses. Each course offered 30 charitably supported places and included a free copy of the Palin PCI manual Practical Intervention for Early Childhood Stammering. Palin PCI Approach by Kelman & Nicholas (2008) for up to 30 participants. Training costs were covered for one trainer (travel, accommodation and subsistence). Host teams agreed to provide a venue and to coordinate bookings for local participants. Host teams were allocated 10 places for their own team in the first instance then they offered places to neighbouring teams and Clinical Excellence Networks (CENs). In training courses were run in Salford, (29 participants), Plymouth (24 participants) and Cardiff (26 participants). In training courses were run in Inverness, Scotland (25 participants), Solent (42 participants) and Birmingham (34 participants). 2-day Palin PCI course in Inverness, Scotland (December 2013) Ratings for the presentation style and the usefulness of the training for all six courses were consistently high. The number of participants who rated the presentation of the course at 4 to 5 (where 1 = poor and 5 = excellent) was 99.5%, the number of participants who rated the usefulness of the course at 4 to 5 (where 1 = poor and 5 = excellent) was 99.6%. Written plaudits included the following:

3 I feel the principles of Palin PCI particularly the interaction/ family strategies will be valuable across all client groups ; The content was extremely useful & covered all the basics. The manual is essential ; I liked the way you were able to describe it in simple language whilst obviously having lots of knowledge on research and clinical experience ; Very relevant. Good evidence base to support strategies. Also useful for children with language delay of which I have a large caseload. Very generous to have included copies of manual ; I now feel much more confident about working with CWS ; and I wish the course could be available to all therapists. It should be essential. What difference did it make? We asked local teams for feedback to the following questions. What difference has the Palin PCI training made to your local service/ care pathway? Our specialist amended the care pathway as a result of the training so fewer CWS are put on review and more are listed for direct therapy ; and I feel that the PCI training has given me an effective tool to guide my clinical judgements, provide support/guidance to parents in a more effective way and filled a gap within my care pathway for those children who I felt were too young for Lidcombe but still required intervention. What difference has the Palin PCI training made for you personally as a clinician? I have an increased confidence in supporting these children and families ; I feel that I have better understanding of dysfluent speech and a broader understanding of the intervention approaches ; I feel that my clinical decision making skills, (which cases to review and which require direct management) has improved ; I personally feel that I am able to offer a better quality service to families due to my training and in my area I can provide input to families should they require Palin PCI or Lidcombe ; and As lead SLT in fluency, I attended the training as I had not done it officially before. This has improved my confidence in using the approach greatly and I now feel properly equipped to support the other SLTs in the department in doing PCI. What impact has the Palin PCI training had on services for clients who stammer? I am now trained in Lidcombe and Palin PCI and I can now assess a child and offer the intervention that is most appropriate for them and make a decision jointly with parents ; Reports from parents in feedback forms that I have given out have reported that the parents felt included in the decision making process and that their views were taken into consideration ; Children are receiving a more active service rather than just review ; At the moment we have 10 newly qualified SLTs seeing most of the children from our therapy waiting lists so it is mainly these SLTs who are using the Palin PCI. I ve had conversations with 2 of them recently who told me the children they did Palin PCI with have improved to the point where no further therapy is needed ; and In terms of our local service, the training has helped us enormously as all our NQTs are now equipped to carry out Palin PCI and several of the SLTs supporting them have also been trained so can offer them appropriate supervision in Palin PCI. What impact has the Palin PCI training had on services for clients with other speech/language disorders? We have used the approach to look at how we support language delayed children ; I have used the PCI principles with some of my other families with great success. The use of video to improve interaction styles is very effective. I particularly like to use video with those children on my caseload with early language delays. I feel that the video allows greater parent involvement and as it is more parent led, I have found that parents are more motivated to engage/improve ; and

4 The Summary Chart has been worth its weight in gold, for me. I have applied the structure and information included in the Summary Chart with a number of complex cases with a variety of diagnoses/undiagnosed, including one CWS. We asked attendees on the three recent courses to tell us how many children who stammer on their caseloads they would expect to use the Palin PCI training with in the coming year. Out of 73 respondents: 47 said they would use it with up to 5 CWS (i.e. 64.3% of participants); 20 said they would use it with between 6 to 10 CWS (i.e. 27.3% of participants); and 6 SLTs said they would use it with more than 10 CWS (i.e. 8.2% of participants). We can estimate that, on average, following the training each SLT will be able to use these skills with 5 to 6 CWS. In addition, many respondents said that they would expect to use the skills learned with children on their general caseload e.g. children with a language disorder. Developing specialists in Palin PCI therapy Our third choice of activity was to offer individual bursaries to therapists around the UK who were interested in developing their skills in the use of Palin Parent Child Interaction therapy. We hoped that this would have a positive impact on the lives of many children who stammer under 7 and would be a way of increasing the confidence and skills of local SLTs and their teams. Individual Emily Hughes-Hallett bursaries provide a charitably-supported place on a Palin PCI training course to each recipient, a free copy of the Palin PCI manual, 6 hours of individual clinical supervision in working with CWS under 7 (with a specific focus on Palin PCI), attendance at a one-day Palin PCI research day and further individual research support on request. Over the first two years we received 33 expressions of interest. Given the level of interest our team agreed a few guidelines to help us to allocate bursaries as fairly as possible. Recipients needed to demonstrate: an interest in stammering; be at least 2 years post qualification; have designated time allocated to working with CWS; have support from their line manager; and have access to parents. Individual (or joint) bursaries were awarded in Lincolnshire, Dorset, Northern Ireland, Brent, Warwickshire, the Solent, Cumbria and Surrey. In total 11 SLTs are current EHH bursary recipients. How much is the bursary changing: Your clinical practice with children who stammer? The supervision sessions have been really helpful in terms of really fine-tuning what I learned at the training and how to put it into practice and also in terms of working with CWS who have additional needs ; and I find that I m listening much more to what parents tell me in the initial appointments. I try and learn as much as I can about their lives and how they feel emotionally, so together with my stammering knowledge I can then apply the evidence from the PCI therapy and deliver good working practice. Your clinical practice in working with other client groups? I have been recommending the specific praise model for some children with low self esteem ; and The PCI training has helped staff not only with working with families who have a child who stammers, but also with their general interaction and practice with parents. Your clinical decision making for stammering clients? The training has really helped me to understand the factors that increase the risk of persistent stammering. This has definitely helped my clinical decision making and also enabled me to help parents to understand the risks ;

5 Having more knowledge about the research and theory behind PCI, I now have the confidence and enthusiasm to deliver the PCI therapy. This is giving families the chance to also fully appreciate it which hopefully results in better outcomes ; and I have taken over the lead for children who have disorders of fluency. Our care pathway is now more flexible between therapy options depending on what would suit the child/family best. Are you implementing anything new as a result of the bursary? The main thing from the research day has been using the Palin Parent Rating Scales ; Our team was delivering PCI therapy to families, 3 4 maximum therapy sessions with an 8 week review. Having attended the course and research day and presented back to my team, we have now agreed to change our care pathway. We now offer the 6 therapy sessions in the block, including interaction and family strategies and review them after 6 weeks ; and We are thinking more about outcome measures and doing mini projects in order to assess the effectiveness of our therapy for children who stammer locally. 1-day Research Skills Day (11 th February 2014) Summary The charitable support made available by the Emily Hughes-Hallett fund has opened up some valuable possibilities for our clients and for our colleagues around the UK. We are really grateful to the fund and wish to thank the Hughes-Hallett family. We continue to offer Circus skills to each group of children on the 10-14s intensive programme. For the third year running Action for Stammering Children and the Emily Hughes-Hallett fund (EHH) are supporting Palin PCI training courses around the UK and individual bursaries around the UK. One course has been hosted in Cumbria and two further courses are booked to be hosted by SLT teams in Powys, Wales (4 th & 5 th February 2015) and in Aberdeen (23 rd & 24 th March 2015). In addition, four more SLTs have been awarded the EHH bursary. References Berquez, A. Botterill. & Cook, F. (August 2011) Building knowledge and confidence in working with children who stammer. Bulletin. Kelman, E., & Nicholas, A. (2008). Practical intervention for early childhood stammering: Palin PCI approach. Milton Keynes, UK: Speechmark Publishing Ltd.