UCLU Giving Voice Swallowing Awareness Day 2017

To raise awareness of swallowing difficulties this year, the UCLU Giving Voice Committee decided to combine a twitter campaign with an interactive, informative swallowing awareness evening, encouraging guests to consider the client’s perspective.

Screen Shot 2017-05-01 at 21.06.53In the 11 days leading up to our main event, we posted articles, images and videos all about dysphagia across social media. Some of these were to share information about prevalence of dysphagia, and others were to pose questions, such as the role of Apps in the management of dysphagia. During this period, we received 6,400 twitter impressions, 314 twitter engagements, 138 likes on Instagram, and managed to get 52 people signed up to our event.

Our focus for the Swallowing Awareness Event was on patient experience. We wanted to help people better understand the psychosocial impact of dysphagia on patients, and to engage with quality of life issues for this group of people. Importantly, we wanted to celebrate all that speech and language therapists do to make a difference for people with swallowing difficulties.

Dr Jane Warren, neurologist, opened the evening by talking about what a normal swallow looks like, and gave an engaging insight into the complexity of the mechanism which so many people take for granted when it is working ok. Guests were intrigued and didn’t hold back with their questions, which ranged from the impact of cleft lip and palate on swallowing, to why people might drool more in their sleep!

We were lucky enough to have a patient generously share their story about their dysphagia following cancer; and to tell guests about how his swallowing had improved with the help of his speech and language therapist. It was poignant to think about the lasting impact of his difficulties, and how it has resulted in him having to think about not only how this affects him, but also his loved ones.

We used many of the materials provided by the RCSLT on their Swallowing Awareness page to frame each of the stalls during the second part of our evening in order to give guests a hands-on experience of how speech and language therapists assess, diagnose and treat patients with dysphagia.

SwallowAware-6.jpgThe first stall was the assessment stage of dysphagia management. Guests were able to experience having an oro-motor and swallow exam, and to understand the steps taken when assessing dysphagia, for example the need for Videofluoroscopy and FEES. Videos of these helped bring to life the mechanism with Dr Warren had explained and gave guests an opportunity to hear about how speech and language therapists work closely with other members of a multidisciplinary team as part of the assessment and treatment process.

There was some great feedback with pause for thought for all budding speech and language therapists: guests indicated that having their throat palpated could be intimidating, but that this was made better when the speech and language therapist explained what they were doing. The best part of the assessment process according to the guests was having an opportunity to express their concerns about their swallowing and have someone listen to their questions.

The second stall involved information about swallowing techniques and postural changes used to help patients with dysphagia. Guests were given the chance to practice modelling the exercises to Giving Voice committee members. We had a poll on the stall asking people to vote on a scale from “Comfortable” to “Not comfortable at all” about how they would feel using such strategies in a restaurant. Most people voted towards “not at all comfortable”, due to it feeling ‘awkward or embarrassing’. Many guests commented that it would depend if the exercises were time consuming or noticeable, and that it would likely affect where they would choose to sit in a restaurant. Overall, the poll provoked many interesting discussions about the psychosocial impact of swallowing and how much of an impact if would have on many of the activities most of us take for granted.

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At the third stall, guests had the opportunity to find out more about different thickened fluids by making and tasting their own, and comparing the impact of thickener on different drinks. Questions were raised about whether this would encourage an individual to maintain adequate hydration, and realistically how appealing this would be on a long-term basis. Guests commented that they would be more willing to drink thickened squash, as it was similar to jelly, but the water would be more difficult to bring themselves to drink, and that it would not psychologically satisfy the need to quench their thirst.

SwallowAware-13.jpgGuests also had the opportunity to see and try different levels of pureed foods. They were initially put off by the appearance of the foods in their unrecognizable states. They stated that they would find it difficult to follow a Speech and Language Therapist’s recommendation to follow such a diet modification. A brave few tried some of the thin puree brocolli, carrot and potato, and nobody recognised the vanilla sponge cake!

A few guests reported they had seen recently in the news about work in care homes to present pureed food in a way that means each individual food is recognisable. 100% of the guests asked reported they would find mealtimes more appetising with pureed food presented in this way, showing that enjoying food and maintaining adequate nutrition is heavily dependent on not only the taste of food, but also the appearance.SwallowAware-18.jpg

Finally, guests were able to bravely experience what it was like to feed someone else and be fed. Guests commented that it was an intimate experience, and reflected how important it is that people with swallowing difficulties who need assistance are not left out of experiencing eating as a social activity.

SwallowAware-14.jpgWe challenged people to sort different foods into ‘high risk’ and ‘low risk’ for people with mild swallowing difficulties. Some guests said that they’d never thought about food as being something risky, and were surprised by how many of their favourite foods were on the ‘high risk’ list.

 

We were impressed by the insightful questions raised and the engagement with all our activities. Overall, this event was a success in challenging people to think about the psychosocial impact of a swallowing difficulty by enabling them to consider this management process from a client’s perspective.

 

Express BSL 2017

Express British Sign Language (BSL) returned for another year in collaboration with the UCLU Sign Language Society, with great success.

The UCLU Sign Language Society opened the session with a discussion on Deaf awareness and the need for non-verbal forms of communication. They then covered basic BSL such as the alphabet, greetings and conversational BSL. By the end of the session, people were able to hold a conversation with each other in BSL – most of whom had no previous knowledge of sign language!

UCLU Sign Language Society run casual classes all year which can give you a firm grounding in BSL, or official classes in level 1 or 2 and frequent socials for practising your signing. We had a great turnout of students from Medical and Speech and Language Sciences degrees, and together we raised £76, which will offer subsidised BSL lessons for members of the UCLU Sign Language Society who may otherwise not be able to afford it.  You can access their presentation here: Express-BSL.

On Wednesday March 15th, UCLU Sign Language Society are holding an event with The Deafness, Cognition and Language Research Centre (DCAL), where they will deliver an all important Deaf awareness talk , to let the world know what UCL is doing to make students more Deaf aware. DCAL, based at UCL, brings together leading Deaf and hearing researchers in the fields of sign linguistics, psychology, and neuroscience. You can find out more here: Event Information.

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UCLU Giving Voice Committee

Facebook: UCLU Giving Voice Society

Twitter: @GivingVoice_UCL

Instagram: uclugivingvoice

Email: ucl.givingvoice@gmail.com

“Lost and Found” – UCLU Giving Voice at the Bloomsbury Festival 2016

On Saturday 22nd October Giving Voice society members supported the UCL Communication Clinic to raise awareness about the challenges of living with aphasia through the “Lost and Found” exhibit at the Bloomsbury Festival.

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The Bloomsbury Festival is a creative celebration of art, culture and science which takes place each October with over 130 events held over five days. This year’s events were inspired by the theme LANGUAGE, and attracted up to 3000 people on the Saturday alone! At least 150 of them visited the “Lost and Found” exhibit. People came curious and open to conversations – perfect for Giving Voice volunteers to really engage with!

Our key points to communicate to people about aphasia were:

  • It is a difficulty with language; which may affect ability to talk, understand, read, write, or calculate
  • It affects each person differently to different degrees, and can affect any age group
  • It does not affect intelligence
  • It can be caused by stroke, brain injury, infection, progressive neurological conditions, or tumours
  • The challenges of living with aphasia can lead to a rage of emotional reactions; including anxiety, depression, frustration, embarrassment, and isolation
  • It affects more than 376,000 people (more than MS and Parkinsons combined), and is one of the most common communication difficulties
  • Speech and language therapists are uniquely placed to provide assessment, diagnosis, treatment and support for people who have aphasia

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Many people we spoke to had never heard about aphasia before, and often confused it with amnesia or Alzheimers. The “Lost and Found” exhibit gave visitors an interactive opportunity to explore the challenges of living with aphasia. People contributed a word they couldn’t live without to the “Lost Words” artwork, and thought about what it might be like not to be able to use those words. We were struck by how most words were positive in nature, and also how often the names of loved ones were at the front of people’s minds. People recorded themselves using Dragon Naturally Speaking software, and the output was projected as part of the “Writing allowed” activity. People reflected how frustrating it could be when what was projected was not what they thought they had said, and we were able to talk to them about how important it is to train people in using different thumb_img_2953_1024communication strategies.  Clients from the clinic with aphasia showed their artwork in
the “Finding a Voice” display, many pieces with complex themes and social commentary. Visitors reflected how poignant and intelligent the pieces were, and learnt how aphasia affects language but not intelligence. People were able to listen to recordings of people with different types of aphasia at the “Missing details” activity, and compare how this might affect their ability to describe the same picture – a kind of “spot the difference” visual representation of lost language.

 

When anonymously surveyed, most people said they would not feel comfortable interacting with someone with aphasia at a social event. We were really grateful for people’s honesty, but it underpinned for us just how socially isolating and challenging living with aphasia could be, and the need to keep working to help people become more confident and comfortable interacting with people who have speech, language and communication difficulties.

20161021_132744.jpgBefore the event we held an optional drop-in training session for anyone who was keen but a bit nervous about the opportunity to communicate with people living with aphasia, or talk to people about the condition. This is because the Giving Voice society is made up of people from all different backgrounds and disciplines, and not just those training to be speech and language therapists. The Committee was so impressed by the number of people who had never done anything like this before who were willing to bravely give it a go! In the end we had seven willing volunteers in addition to six committee members – a massive thank you to all the volunteers; and to Caroline Newton and Carolyn Bruce from UCL who organised and ran the exhibit.

The “Lost Words” artwork that was created will be on display on Wednesday 2nd November from 5pm at Chandler House, where there will also be a reading and discussion from Lauren Marks, an author with aphasia. All are welcome!!!!

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UCL Giving Voice Committee

Facebook: UCLU Giving Voice Society

Twitter: @GivingVoice_UCL

Instagram: uclugivingvoice

Email: ucl.givingvoice@gmail.com

 

Giving Voice – Beginnings

What on Earth is it?

The RCSLT’s Giving Voice campaign is demonstrating how speech and language therapy makes a difference to people with speech, language and communication needs, their families, and the wider society. We are showing what speech and language therapy is and the positive impact it has. Giving Voice is also demonstrating that this vital service is cost-effective and value for money.

Why get involved?

1. It’ll help you make and keep contacts in the world of Speech and Language Therapy and boost your job prospects
2. YOU have so much to give! You can speak out on behalf of colleagues, those with SLCN and their families. So many of you have skills and experiences from previous careers and experiences.
3. Boost your professional skills – particularly with developing your interaction with service users outside of a clinical setting

How to Give Voice?

• We’re at university with the next generation of nurses, doctors, lawyers and teachers. Campaigning on campus is important to ensure everyone knows just how important Speech and Language Therapy is!
• On placement, talk to your Practice Educator about Giving Voice and ask them for advice. See if anyone on your placement would like to get involved in our events. It’s a great way to get to meet other SLTs and get involved in the MDT. If you know any service users you work with who you think would love to get involved, ask them!
• Giving Voice is about raising awareness about the essential work SLTs do. The more funding we receive, the better – get local MPs and commissioners involved. Invite them to events and talk them through what SLTs do and why it’s so important.

What are these events I keep hearing about?

• Giving Voice thickened shots/ drinks night
• Giving Voice karaoke night – show us what YOUR voice is made of
• Giving Voice balloon launch
• Giving Voice celebrate Chinese New Year – flying lantern launch
• Giving Voice Ball – Reading University had one, why can’t we?
• Giving Voice pureed food picnic…and some normal stuff
• Film nights – Temple Grandin, The Diving Bell and the Butterfly etc. Popcorn provided (working on booking rooms till late)
• No Voice Week / Sponsored silence – use of AAC and other means of communicating
• FLASH MOB – original idea needed so we’re not copying B’ham City (we have the London sights, less put them to good use)
• Fancy dress raising money at Euston – Great Ormond Street Hospital
• Bake sale – we need to raise money to carry out our events!
• More ideas would be very much appreciated. If a charity is particularly close to your heart, let one of the committee know!

Thank you for your interest and hope to see you soon and one of our events!

Your UCLU Giving Voice Society

“My diving bell becomes less oppressive, and my mind takes flight like a butterfly.” – Jean-Dominique Bauby

“A candle loses nothing by lighting another candle”- James Keller

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