ASC survey of stammering services

Action for Stammering Children has released the results of two surveys we carried out to find out what parents and therapists think of the services available for children and young people who stammer.  We were pleased with the number of responses we received to the surveys – 82 parents or carers responded, and 144 speech and language therapists.

We asked parents of children who stammer at what age they first identified a communication difficulty in their child.  Over half (56%) said this was between the ages of 1-3, and 32% said it was between the ages of 4-7.  Only 12% said they first identified a difficulty when the child was 8 or over.   The most common difficulty children experienced at this stage was social and out-of-school activities, and attending nursery of school was the second most common difficulty.

When we asked parents about the quality of the therapy their child had received for their stammer, a high proportion of parents told us they were unhappy with the service they had received.  Amongst parents who had used a therapist in their local area who specialised in stammering, only 35% said they were happy with the service.  A high number (29%) said there was no service available locally to help their child.  As many as 21% of parents said they had paid for private therapy for their child, and more than half of these parents said they were unhappy with the service their child had received.

In our survey of speech and language therapists, 98% said they worked with children and young people and 47% said they were specialists in stammering.  We asked therapists what changes would help them provide better support to children who stammer.  Therapists told us they would like more research and evidence regarding what works, and more specialist training in relation to children who stammer.  They also said they would like to see more practical support for parents.

Speech and language therapists also told us they faced a number of challenges in their work including a lack of appropriate skills, insufficient staffing levels, funding issues, high waiting list, and the difficulty of working in rural areas and with multi-lingual families.

The findings of the two surveys formed an important part of a strategic review by Action for Stammering Children of our aims and activities as a charity.  We want to make sure we are doing all we can to support children and young people who stammer and their families across the UK, particularly at a time when some NHS services are being cut back.  We also want to do more to support speech and language therapists around the country who are providing such an important service, often in the face of considerable professional challenges.  This will be the focus of our work in the months and years ahead.

If you would like to receive a copy of the full summary, please email ASC@stammeringcentre.org


A warm welcome to our new Youth Panel members

Written by Lucy Hayes, Communications and Youth Engagement Manager

ASC’s mission is to transform the lives of young people who stammer, and so we believe that they should be at the heart of everything we do. In October we set up our Youth Panel to give young people who stammer a voice on the issues that matter to them, and give them the opportunity to have their say on what ASC should do to help more young people. After the initial round of recruitment, the panel consisted of 10 great young men aged between 12-21.

Now after a second round of recruitment specially for young women, we now have 5 new members of our Youth Panel, who all talked passionately in their applications about why they wanted to join.

Alex, aged 13 said she joined “to make decisions to help people to understand what it is like to have a stammer and how to cope with a stammer.”

Maya, aged 19 said “I am committed to helping people who have a stammer, and can apply my drive and enthusiasm to the Panel.”

Emily, aged 18 said “I think that raising awareness of stammering through campaigns is equally important in reminding young people that they aren’t alone, and I think social media campaigns are great in this way as they can reach so many people”

Becka, aged 19 said “I really want to raise awareness of stammering because not many people know a lot about it. I want to tell who stammer that they can do it!”

Sami, aged 16 said ”Joining the youth panel would be an utterly amazing experience for me as I really want to help bring a voice to others that stammer and ensure that no one else ever feels that they are the only one that has to deal with this in their everyday lives”

We are so excited to announce our new members on International Women’s day and to have a panel who are a representative voice of young people who stammer.


An Interview with Ben Cleary

By Lucy Hayes, Communications and Youth Engagement Manager

Ben Cleary is a film writer and director from Dublin and his recent short film ‘Stutterer’ has been nominated for an Oscar. We spoke to Ben about making Stutterer and his Oscar nomination.

Tell us about your film-making journey- where did it all start?

 Well I’ve been scribbling ideas for films and characters since I was about eight, but I finally decided to get serious about it in 2010 when I applied for a screenwriting masters to the London Film School. It was a great year and I learnt a load about the craft. From there I began writing shorts for other people to direct and finally saved some money to write and direct my own one. 

 Why did you choose to write a film in which the main character has a stammer?

 Well I saw something online on day that stayed with me. It was a gentleman with a stutter who was speaking about his experiences. He had gotten to the point where the stutter was almost imperceptible when he was speaking to someone face to face, but once he got onto the phone, it came flooding back and he found phone calls immensely difficult. This really struck a chord with me and I began considering how someone faced with the difficulties presented by a speech impediment might navigate through life. And it is this image that opens the film. An extreme close up of a mouth struggling to get words out to an impatient phone operator. But also, growing up I had a friend who had a pretty severe stutter and I remember how difficult that was for him. So you could say I had a bit of a personal connection to the issue too. The more I explored the idea, the more excited and passionate I became about telling this story.  

 How did you do your research and what resources did you find most helpful?

 The vast majority of my research was done online. I would spend hours and hours looking at sites and going through videos on youtube watching these incredibly brave people speaking about their speech difficulties to try to help others. I was sitting in a shared desk studio at the time and there were so many instances where I’d be watching a video and start to tear up and desperately try to hide my tears from the people sitting around me. I still don’t know if they noticed or not! But yeah, it really moved me and it still does even thinking about it now. But also, a lot of my knowledge about it came from experiences of knowing someone with a stutterer and seeing what it can be like from day to day and in certain situations. 

 What have you learnt about stammering through producing ‘Stutterer’?

Well, I learnt that there are a lot more people suffering with a stutter than I had been aware of. And of course I learnt some other things like the fact that it’s not necessarily just an anxiety thing or that some people find they can sing perfectly or other interesting things like that. But I think I also learnt something that I already suspected. And that’s the fact that I think a lot of people don’t really understand the issue and sometimes don’t have the sensitivity about it that they should have. Although our lead character, Greenwood, finds it impossible to communicate with people face to face, he has this wonderful inner voice that we get to hear through voice over, and he’s very eloquent and charming and witty. I was very interested in exploring this element of it, and I hope with Stutterer that we’ve represented the issue in a sensitive, insightful light and if it gets people to look at the issue in a new way, that would make me very happy.  

 What would it mean for you if you won the Oscar?

 Well we never thought our little film could ever get this far so even being nominated feels like we’ve won you know? Winning the Oscar would of course be an indescribable honour but we’re just going to go and enjoy ourselves and see what happens.

We’ll keep our fingers crossed! Good luck to Ben at the Oscars in a few weeks time!

 


An open letter to young women who stammer

By Lucy Hayes, Communications and Youth Engagement Manager

In October 2015, ASC launched it’s Youth Panel who’s purpose is to represent the voices of young people who stammer. The panel is currently made up of 10 young men aged between 13-21 and in their first meeting decided that the group needed to be more representative of the stammering community.

We have  decided to reopen applications for young women to join the panel, and current panel member Michael Scott wants to tell you why you should apply:

“As someone who has stammered for as long as I can remember, I know how draining it can be at times, particularly during a child’s time in the education system – and this is one of the key reasons that led to me applying to be a member of ASC’s youth panel. After seeing the promotion of the panel my mind was cast back to one of the worst times I have been through with my stammer; which was during high school and I realized that I couldn’t pass up on the chance to influence one of the most prestigious speech therapy organisations in the country, and hopefully work on a national campaign in order to increase the overall awareness of stammering not just for me; but for anyone else who had ever been in that place. One of my main issues during my time in high school was consistently coming across teachers who were unaware of how to help someone who stammers and hopefully a national campaign will help us reach the end goal – stammering people being able to thrive in whatever environment they are in. This panel has given every member the chance to make a huge difference for stammering people as a whole and to ensure that the thoughts of the people who receive the services of the ASC are deeply embedded within the organisation’s policy.

However the panel isn’t currently representing the extremely diverse community of people who stammer as a whole; in order to encompass the perspectives of all stammering young people we need to recruit more young women who stammer as this will result in the voices contributing to the policies of the ASC being a full unification of a varied community of stammering young people. The panel so far has been very fun to be a part of, the meetings aren’t all serious! The topics are important to the panel as a whole but we have fun working together in order to produce something (for example in the last meeting we worked on putting a mission statement together) and each topic usually results in some jokes and stories being shared.

To conclude, I’d like to show you this quote from an amazing article about stammering awareness day – “I imagine that for the non-stammerer, language must be a little like air, a medium so compliant that most of the time you forget you’re moving within it. But for the stammerer, speaking is like moving through water – you are constantly aware of language because it constantly resists you.” I do partially agree with this, because physically a stammer will always feel like walking through water, however in this panel we can work to change the attitudes of people so it doesn’t mentally feel like walking through water, and our own thoughts don’t stay as thoughts because of fear of how the person we are speaking to will react to stammering. The first step towards achieving this is for more young women to join the panel. ”

For more information and the application pack go to http://www.ascyouthpanel.com/

 


Welcome to 2016!

By Balshen Izzet, Chief Executive

Happy New Year!  Action for Stammering Children had a fantastic 2015 and still have so much to do in 2016!  We want to share with you some of our highlights.

January

We hit the ground running at the beginning of the year with a visit to Parliament to meet the Speaker of House of Commons, John Bercow MP, and the former Shadow Chancellor, Ed Balls.  We joined Action for Stammering Children’s young ambassador, Thomas, who lobbied both politicians about services for children and young people who stammer.  Both meetings went superbly well and we are proud to have such a great champion – thank you Thomas!

February

In February ASC Vice President and Oscar winner, Colin Firth, was special guest speaker at our inaugural Gala Dinner. At the dinner we launched the ‘Unlock a Child’s Voice’ appeal, which aims to raise £1.5million over three years to support the delivery of specialist services across the UK, to help us reach more children and young people who stammer.

On the night, the Unlock a Child’s Voice appeal raised over £90,000 – an incredible figure that will make a huge difference to the lives of many children and young people.  Huge thanks to all our supporters who donated on the night and to those who have since donated on our JustGiving page here.

April

In April we had a visit from the Charity’s Vice-President, Michael Palin, the namesake of the Centre. Michael has continually supported the Centre and the Charity – the young people at the Centre always greatly appreciate his visits.

May

ASC were invited to be the chosen charity for an evening with Prof Paul Dolan, author of ‘Happiness by Design’, at the London School of Economics. Prof Dolan has a stammer and it was great to hear him speak about his experiences and how he hasn’t let his stammer get in the way of his ambitions.

June

Stammering went mainstream in June when the musician Ed Sheeran, announced at the American Institute of Stuttering’s Gala that he has a stammer, and that we should embrace our differences. Call us Ed, we’re here to help children and young people who stammer and we would love it if you could help us reach those children! Call us on 020 3316 8113!

August

ASC’s Co- Founder and Life President Travers Reid received an Honorary Fellowship to the notable Royal College of Speech and Language Therapists. Since 1945 the RCSLT has used its annual honours awards to acknowledge the achievements of its members and those who have contributed outstanding services to speech and language therapy. This year, the RCSLT chose Travers who prior to his retirement, was a prominent businessman and is co-founder of Action for Stammering Children. His experiences of childhood stammering convinced him of the need for a specialist centre to help children who stammer which has now become the world renowned Michael Palin Centre.  ASC has a superb partnership with the Centre and long may that continue – we thank all the staff at the Centre for their great work to help as many children and young people in the UK who stammer.

September

This month we launched the recruitment of ASC’s Youth Panel. As a charity whose purpose is to support services for young people who stammer, we thought it only made sense to get a group of young people together to be the voice of those we campaign for.  The only two requirements for being part of the Youth Panel was to be between 13-21 years of age and have a stammer. We hope that the panel will advise our Board of Trustees on important decisions, especially those that effect young people and the services provided for them.

October

The 8th October was #MAKESOMENOISEDAY and ASC was invited onto LBC Radio along with Michael Palin, Ed Balls and 3 young people from the MPC to talk about stammering, the Michael Palin Centre and how ASC works hard to continuously support young people who stammer. It was especially exciting to hear Ed talk so passionately about the work ASC does.

We had our first stammering network summit, bringing together voluntary organisations and service providers for specialist therapy in stammering to campaign for the stammering community. Will Earthy, who recently became a member of our youth panel gave a speech about ASC and how therapy from the MPC has helped him control his stammer and boost his confidence. Will, along with Ed Balls also sat on the Good Morning Britain sofa to spread the word about International Stammering Awareness day. We are so proud of Will for pushing his comfort zone and speaking so fluently on live TV, he is an inspiration to so many young people who stammer.

We also visited the Yorkshire and Humber residential therapy programme funded by ASC.  The course was a huge success and we know that the 13 young people on that course faced their fears and will now go on to achieve the best they can be – we thank the team managing this programme and helping to change the lives of those young people!

This month we also had an addition to our staff team with Lucy Hayes our new Communications and Youth Engagement Manager.

November

There was no let-up in November and we continued with another month of exciting events. We kicked off the month with the Harrow School Long Ducker, an annual event which sees pupils and teachers of the school run 10 or 20 miles for a chosen charity- this year that was us! ASC staff and trustees volunteered to marshal the event and cheer on the boys as they ran from Hyde Park all the way to Harrow.

Finally and most excitingly, we had our first Youth Panel meeting. The panel will come together four times a year to discuss campaigning ideas and present them to the Board of Trustees.  Our corporate sponsor, Tonic Insight, lent us their amazing office space and their Creative Director, Seyi Matthews, offered to run a workshop for the group. Having a stammer himself, Seyi was an inspiration to the panel and gave them some great ideas about how to run creative campaigns and create digital content. The meeting was a huge success and we look forward to the next one in the New Year.

December

The stammering network had its first official meeting and the members are working ideas for a joint public awareness campaign in 2016 – watch this space!

So, 2015 was full of great new projects and 2016 will be full of many more including a volunteer’s programme at ASC, relaunching the Youth Panel application for girls only because the group is only young men – we want a more diverse group to represent all children and young people in the UK who stammer and, of course, we are launching the findings of our independent review into specialist speech and language services across the UK.  This review will help determine the future development of ASC.

However, I write this blog with a heavy heart.  Having been in post for 13 months I am moving on to pastures new working for another Charity that I am equally fond of.  I leave next week and my post has already been filled with an interim Chief Executive who has years of experience running charities.  It is a huge comfort to pass on last year’s projects to Delyth Evans who will help build on our achievements so far.

Thank you to everyone who has helped me make all our achievements in 2015 possible!


Calling all parents!

As part of ASC’s continuing review of speech and language services across the UK, we have commissioned a survey for parents of children who stammer, to give them the opportunity to talk about the quality of service provided in their area. We believe that the input of parents is incredibly important to the charity’s review, as they have first-hand experience of the effect the quality of language therapy can have on a child who stammers.

One of our youth panel members, Thomas Broom, talks about how having his parents support in dealing with his stammer and their assistance in getting the right therapy, helped him tackle key milestones with confidence.

“My name is Thomas, and I have had a stammer from the age of 3. I had speech therapy from the age of 4, but I never found my stammer to be that much of an issue at primary school until Year 4. At this point, with the help of my speech therapist, my parents spoke to my teachers and made me feel comfortable and confident at school. My parents continued taking me to speech therapy quite frequently, working around work and other things, and were there whenever I needed them.

In Year 6, I went on a specialist speech and language therapy course, and my parents were again a big part of that. As well as taking me there every day, they were on the course with me, learning from it as well to help me even further. And all this time, my wonderful speech therapist was still supporting my parents, helping us to make the right decisions and to boost my confidence. 

Starting secondary school was always going to be stressful, but again my therapist and parents were helping. My parents spoke to my teachers and also helped me when I told my class about my stammer, which was the best thing I could have done, and made me feel comfortable at school, knowing that people understood.

I think it’s important that parents are involved in the shaping of the services for their children because, at the end of the day, they know their children best, and know what is needed for their child. There are also things that the parents themselves need to learn and understand about stammering.”

-Thomas Broom

If you are a parent, guardian or carer of a child who stammers, please take 10 minutes to complete our survey, we would love to hear about your experiences.

https://www.surveymonkey.co.uk/r/WM22KXR

The survey will close on the 31st December with results being published in mid-January.


A message from our Youth Panel

 

Action for Stammering Children (ASC) is the Charity that works hard to help children and young people who stammer.  We asked Joel Winston, a member of our Youth Panel, to write about what it’s like to have a stammer and how having speech and language therapy helped him regain his confidence.

“My name is Joel Winston I am 14 and I have a stammer.  The first way in which my stammer affects me is when I am at school I often find it quite difficult to speak or read out loud in class as I find this puts me under pressure and when I am under pressure to speak, my stammer becomes a lot worse. In school there are certain classes which I find it more difficult than others and this largely depends upon the number of people in the class and my teacher.

Outside of school the therapy I have had has been at the Michael Palin Centre and I have found this to be very helpful. My first form of therapy was with a speech and language therapist who I would meet with once a week and during our sessions we would discuss how my stammer had been during the past week and how we thought we could improve.  The sessions were helpful because they gave me the opportunity to relax a little bit and to not feel so stressed about my stammer.

Two years ago I attended a two-week intensive stammering course where I was introduced to other children who stammered. Working with other children of my age and with a stammer was incredibly helpful because I realised that I was not alone with my stammer and all of the experiences that I had gone through could be shared in the groups. I could also hear of other people’s experiences. For many of us, it was the first opportunity that we had had to meet other people of our age group with a stammer.

During the course we were constantly pushed to work outside our comfort zones. This included having to read for 30 seconds in front of the therapists, parents and our fellow group members. Another thing we had to do was go out on the street and ask simple questions such as the time and directions to somewhere. This was helpful as it gave me a confidence boost that my stammer was not as bad as I thought it was compared to the others attending the course.”

–          Joel Winston

ASC want every child and young person to have access to a brilliant speech and language therapist.

If you are a speech and language therapist, please can you spare 10 minutes of your time to fill out this questionnaire so we can hear from you personally.

https://www.surveymonkey.com/r/MV3P8HB

ASC’s Youth Panel would like to work with the Board of Trustees to help reach as many children and young people and we hope the results from this survey will help them do that.


A call to all SLTs!

By Jo Hunter, Chair of ASC

Action for Stammering Children (ASC) has commissioned an independent review to help us understand what speech and language therapists (SLTs) across the UK think about the support available for children and young people who stammer and help us inform our growth strategy.

This review goes alongside our Unlock a Child’s Voice appeal.  Our commitment to reach 10,000 children across the UK is a goal and we are very keen to achieve in the next three years.  We hope the independent review, conducted by Peach Consultancy, will help us look into the national support for children and young people who stammer and provide us with the strategy to give the support where it is most needed across the UK.

This is a request to all speech and language therapists (SLTs) to spare 15 minutes of your time to complete a survey about support and services for children and young people who stammer.  We know this is a big ask particularly at such a busy time of year, but your input is so important to us and will help us understand more about the challenges you face.

Please forward, Tweet and Facebook this blog with the link to the survey and help us reach as many SLTs as we possibly can.  Their say is vital to ASC.

Thank you


One London Virgin Money Marathon place available!

On the Sunday 24th April 2016, over 50,000 runners will take part in the Virgin Money London and you could be one of them! This year Action for Stammering Children has one marathon place for someone who is dedicated to raising a minimum of £1200. We are a small charity that supports the Michael Palin Centre, a NHS centre who provide specialist speech and language therapy for children and young people who stammer. The money you raise will help us to continue in supporting the excellent service provided by the Michael Palin Centre, and ensures that Action for Stammering Children can help give a voice to children and young people who stammer.

Interested in donning our yellow jersey? We will give the place to the highest bidder, how much will you pledge to raise?

Yellow is so your colour
Yellow is so your colour

 

 

 

 

 

 

 

 

Closing date for bids is 12pm Wednesday 11th November.

Please email lucyhayes@stammeringcentre.org for more information.


ASC’s newly appointed Youth Panel

Balshen Izzet, Chief Executive of Action for Stammering Children

Action for Stammering Children (ASC) is delighted to announce the new members of its first Youth Panel.

The Board of Trustees of ASC recognise that children and young people have a right to participate in decisions that affect them.  We therefore want to ensure that the views and voices of young people are at the heart of ASC’s development.

We advertised the opportunity for young people between 13-21 years old to apply to become a member of the Youth Panel and received a fantastic response, with applications from a mixed age group from across the UK, including from Wales and the Isle of Wight.  The applications were however mainly from boys, which highlights the statistics that more boys than girls have a stammer.   We hope the Panel will now focus on getting more young girls who stammer engaged so we can have a Panel that represents everyone, of all genders, races and backgrounds across the UK.

The candidates gave passionate accounts of their personal experiences of stammering.  They see the Youth Panel as a platform for them to change perceptions.  They submitted ideas such as campaigning for teachers to be better informed about stammering as well as ideas on how to inform their peers about the difficulties that come with having a stammer.  There were many innovative and exciting suggestions, all of which the Board of Trustees will closely consider.

ASC will harness the passion and dedication these young people have to reach out and raise awareness about stammering and inform our growth strategy.

This is an exciting moment for ASC. Children and young people’s welfare has always been at the heart of our work – our focus and our purpose.  Now children and young people themselves will start to shape and improve our work, making sure our work is as effective and successful as it possibly can be.

And here we are, our Youth Panel members (in alphabetical order):

Deanietrea, age 13 from London, said: “It will be a great opportunity to meet others.”

James , age 15 from Isle of Wight, said: “The charity Action for Stammering Children has had such a positive impact on my life as a stammerer and I am hugely looking forward to playing a part in helping ASC enable other young stammerers to benefit in the same way that I have.”

Joe, age 15 from Essex, said: “I look forward to working with the rest of the panel and ASC!”

Joel, age 14 from London, said: “I am excited to be part of the Youth Panel because I want to raise awareness for the greater good of people who stammer all around the country.”

Michael, age 16 from North West: Being on the youth panel is important to me because it means I have a chance to make a difference for stammering people on a national level.”

Sion, age 15 from Wales, said: “I’m really pleased to be on the Youth Panel because I think people who stammer need more attention and other people should be more aware of what having a stammer is like.”

Thomas B, age 14 from London, said: ‘I am excited to be part of the Youth Panel – it’s important to help raise awareness and reach more young people.’

Thomas P, age 16 from West Midlands, said: “I’m delighted to be a panel member for the ASC Youth Panel. It means a lot knowing I can help other children who stammer like me, and make a difference.”

Will, age 16 from Essex, said: “I am delighted to be part of the Youth Panel and look forward to sharing my views and experiences which I hope will be of benefit to those whom are in situations that I have previously found myself in.” 

Zain, age 21 from Yorkshire and Humberside, said: “I am delighted to have the opportunity to be a member of the Youth Panel for ASC! This can allow me to express my ideas on improving the lives of children and campaigning to raise public awareness to ensure people realise that we do have a voice.”