Author: airedalestammeringtherapy

Award Success!

 

This time a week ago, Jody and I were on a train heading to London on our way to the Guardian Public Service Awards evening, happy to be attending a swanky awards ceremony (not something we NHS employees routinely do!) but never dreaming that the following day we’d be heading back again clutching the winning award for the digital and technology category!

    

Although the award is in the name of Airedale NHS Foundation Trust, the project is a joint venture between us and the British Stammering Association, and we were delighted that their Chair, Tim Fell, was able to join us at the ceremony. In fact, this project would never have seen the light of day if it weren’t for Tim, because the whole thing was his idea in the first place. He and Norbert, BSA’s Chief Executive, have been a tireless source of support and advice from day one.

    

The evening was fantastic fun and felt truly celebratory. There was such a lovely atmosphere, and it felt wonderful to be celebrating different successes from across the public sector, with people doing incredible work despite the difficult financial circumstances most public sector organisations find themselves in today. We felt privileged to be among them. The actor Sally Phillips was an excellent host and gave an entertainingly irreverent introduction.

      

Since our category was announced quite early on, we then had the rest of the evening to relax and enjoy the free food and wine – I think it’s fair to say some of us were somewhat giddy by the end of the evening; not mentioning any names…  It’s probably a good job that we weren’t required to make an Oscars-style acceptance speech!

       

This award is testament to the hard work from everyone in the project team. While it’s great that the award has helped to raise the profile of the project, what’s even more important is that it’s provided an opportunity to raise awareness and increase understanding of stammering among a wider audience.

I am so grateful to all of our participants, and continue to be astounded by their bravery and resourcefulness in managing their stammer, sometimes within an environment where stammering is little understood at best, and seen as something to poke fun at at worst. Hopefully this award will help to get the word out that there is help out there, and that stammering does not need to limit people’s lives.

Official photographs by Alicia Canter for the Guardian

 

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What I have learnt

Whilst at university I had a part time role working behind a bar. I spent a lot of time stood at a bar making chit-chat with the regular customers. I can remember one of our regulars did stammer. I was aware of the difficulty they had in getting their words out but that’s where my awareness ended. I could see the frustration in their eyes, I could even sometime sense there was more that they wanted to say but couldn’t.

When I started this role in April, it became instantly apparent how far-reaching the effects of the stammer can be. We have people who have gone into different careers to that which they had initially wanted because they had thought of the stammer as a barrier to their chosen career.

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The stammer has stopped some of our participants doing things such as taking their children out by themselves in case they can’t get help if it is needed.

We have heard of people pretending to forget the name of their favourite restaurant as it’s a word that they stammer on. Our clients find themselves keeping quiet in conversations where actually, they have great input to give, but they worry about the words, the timing and what people will think of them.

It has literally affected every part of their lives.

Some of our clients have had negative reactions from family or colleagues when they have opened up to them about their stammer. Some people have found that when they have taken the very brave step to discuss their stammer, they have been dismissed and told ‘don’t be silly, you don’t stammer’. There has been no awareness of the fact that these people have spent their lives hiding their stammer, switching their words, changing the meaning of what they were saying in order to sound more fluent.

This in turn has made them reluctant to open up to others, which has only compounded the stress in their lives. To then be dismissed when you do find the courage to open up and are met with ‘don’t be silly, you don’t stammer’ can be really harmful as people are at risk of feeling like they aren’t be taking seriously and not being supported.

I have learnt there is no ‘magic cure’ for a person who stammers. The therapy won’t stop the stammer, but it will help the participant realise that to stammer is nothing to be ashamed of.  It is down to others to be patient and listen well.

I also think that actually stammering is as big or as small a part of a person’s life as they determine. It is not for any of us to judge how it should affect people. The best thing that can be done is be patient, be supportive and don’t dismiss anybody’s feelings, whatever they may be.

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Analysis of the project

One of our colleagues has pulled together some really interesting data (see below) showing where our participants live in the UK. There seems to be a good spread right across the country but there is a definite concentration in the south.

One of the requirements for people wanting to access the therapy is that they cannot access any therapy locally. There are many reasons why they may not be able to access the therapy. One of the reasons may be that there is no local NHS service in their area. This could explain why we have so many participants from the London area. Despite the higher population, there seems be a great need for more trained specialists in Adult Stammering in the NHS and this is hopefully something that our project is helping to address.

Having no access to local provision is not the only way to access therapy on our project though. Some of our participants cannot feasibly access the service in their local area for reasons such as their working life restricting them, the journey being too far or expensive to make regularly or the waiting list being far too long.

We have some fantastic personal stories of why people have felt now is the right time to undertake therapy for their stammer. From starting a new profession, to upcoming public speaking right through to wanting to feel comfortable being able to take their kids to the park by themselves and not feel worried that they won’t be able to get assistance if the need arose. The range of reasons is vast, and all are equally as valid as the next.

42 patients have now referred themselves to the project. This was our original target for the full year so it is fantastic to get to this milestone at half way through the project.

Approximately 62% of our participants are male. The current estimation of males to females who stammer worldwide is approximately 80% men to 20% women. So although we do have more men than women on the trial, we have a stronger representation from women than statistics would have predicted.

Our average age of participant is 35. This is quite a low figure and we do wonder whether it is due to the nature in which we communicate about the project, and the way in which it is accessed. We are offering therapy in an innovative way and this might not be reaching everybody.

However, we do think that the technology we use, and the way in which we run the project is really accessible for everyone and nobody should be put off by the fact that it’s done over the internet!Project Graphic - upto 42

Award nomination for the project

Well, it’s been a busy time recently here on the project. The big news is that we have been shortlisted for a Guardian Public Service Award in the Digital and Technology category. This is a massive accolade for the project team, and it’s wonderful that our work is receiving that kind of recognition. Hopefully this will help to highlight the many struggles faced on a daily basis by people who stammer and get the word out that there is specialist help available. It feels like we’ve come a very long way since last year, when the British Stammering Association chairman Tim Fell first rang me to discuss whether delivering  therapy by telemedicine to adults who stammer might be an option.

And talking of Tim, he has just finished an amazing walk from John O’Groats to Land’s End, raising awareness of stammering as he went  – an incredible achievement! I had the honour of walking a very short section of the route with him as he passed through Yorkshire. There’s still time to donate at https://www.justgiving.com/fundraising/stamwalkLast week I was at the Oxford Dysfluency Conference, an amazing opportunity to learn from researchers and specialists in stammering from all over the world. My brain is still hurting from all the information I took in! There was lots of interest in the project, and it was wonderful to be able to share our learning with others.

And meanwhile, the day to day work goes on. Referrals continue to come in, and therapy continues to be delivered. We received some lovely feedback this week from one of our participants, who said,

“Since our last appointment, I’ve been a lot more open with how I stammer and in doing so have become more comfortable in my speech and how I feel around stammering. I’ve been really impressed with telemedicine. It’s a fantastic service and personally I’ve found it far more beneficial than the face to face meetings I had with my previous speech therapist.”

 

 

Journey’s End

Summertime, but the work goes on here at the project.  Five months in, Project Manager Jody and I have definitely settled into the swing of things. All of our technical issues have been ironed out, our admin systems are working, and we’re focusing on the important task of helping people to live the lives they want to live. We’ve now got thirty-six people signed up,  with participants at all stages of therapy. A couple of people have dropped out, which we expected, but it’s frustrating that we don’t always find out why.  Was it not the right time for them? Was it not what they expected? Could we have done things differently?

Most of our first cohort are coming to the end of their therapy journey with us, although hopefully that doesn’t mean that their learning stops.  The main aim of therapy for stammering is to help people to equip themselves with the tools and strategies to manage their stammer on an ongoing basis and feel comfortable about it long-term; effectively, to become their own therapist. Supportive friends, family and colleagues can all help to play a part in this.

Magical mystery tour

I wish them all well with wherever life takes them next, and it’s great that they’ve got what they wanted out of therapy, but I’ll miss them. Therapists are given a privileged window into people’s lives for a while and travel with them on a magical mystery tour of discovery,  learning and change. There’s definitely a sense of loss for me once my part in their journey is at an end. Hopefully they’ll keep in touch!

Scale It Up

A few weeks ago I attended a workshop run by Haelo, in partnership with the Health Foundation, which focused on ‘Scale Up and Spread Improvement’ for some of the Health Foundation funded projects.

This was an excellent opportunity to meet with the other projects in our round of Health Foundation funding to see how they are getting on and share any learnings we have made in our projects so far.

The speaker for the day was a very knowledgeable and enthusiastic Brendon Bennett. Brendon is an Improvement Advisor who started his career as a volunteer with the US Peace Corps in Uganda. He has since worked with the Institute for Healthcare Improvement and as a consultant in Improvement Science across a wide range of countries and various sectors.

I was really impressed with the insight and experience Brendon brought to the day. His enthusiasm was almost tangible and quite infectious. The day itself was great, speaking to other groups about how their projects were going and any hurdles they had faced was useful and brought home just how successful the Airedale NHS Foundation Trust project really is. We seem to be on track and seeing results for our participants already and this is great.

The academy showed me a few things that I need to work on for the project though. Sometimes, it’s so easy to get immersed in the day-to-day running of a project that you forget about the analysis or the measurement required – WE may know that the project is great but we need to be able to show external audiences how great it is!

So on that note, I am now busy beavering away on our Change Package, Measurement Tree and Driver Diagrams…wish me luck!

 

Driver Diagram

Telemedicine Stammering Project Takes to the Airwaves

 

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“Stammering…It’s not bad; it’s not wrong; it’s just different.”

Our Speech and Language therapist, Steph Burgess, was on Radio Leeds on Friday 14th July talking about our Telemedicine Stammering Project.

 

You can Click Here to listen (1.46.50).

In the interview Steph discusses the Stammering Therapy project; Airedale NHS

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“Stammering is just a different way of talking.”

Foundation Trust’s Telemedicine reputation and a bit of background into why Steph wanted to carry out the Stammering Therapy Project.

She also discusses a little about the negative impact stammering can have on a person’s life and the science behind stammering.

It’s great that the subject can get the attention of the local media and hopefully reach a wide audience. For Steph to be invited onto the  radio shows how important the project really is!

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“What we try to do in therapy is to build people’s confidence. To make them realise that you can stammer and say what you want to say.”