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.

 

“Filming My Father: In Life and Death”

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On February 1st 2017, UCLU Giving Voice held a documentary screening of20170201_172127Filming My Father: In Life and Death“, an award-winning documentary providing an insight into one family’s battle with Motor Neurone Disease (MND).

MND is a progressive neurodegenerative disorder that prevents the motor neurones in the body from working properly. The MND Association reveal that up to 5,000 people in the UK are living with MND at any one time, and it kills more than half within 2 years of diagnosis.

Your motor neurones send messages to your muscles and are therefore involved in day-to-day activities without us even thinking about it, such as eating and breathing. Whilst the effects vary from person to person, MND leads to weakness and wasting of muscles, causing loss of mobility in arms and legs, and difficulties with speech, swallowing and breathing.

The evening opened with a talk from Steven Bloch, a senior lecturer at UCL, who discussed the role of a Speech and Language Therapist working with people with MND. 

Speech and Language Therapists are key in providing support and intervention surrounding progressive swallowing and speech difficulties with MND. They work on maximising existing speech abilities as well as preparing for the future by encouraging legacy work and the potential for recording a client’s voice for use of alternative electronic means of communication. They also assist the client’s support network with their communication and interaction with their loved one.

As seen in this documentary, people with MND will likely require an Alternative Augmentative Communication system, such as an iPad or an eye-tracking device, to communicate when they are no longer able to produce verbal output. The Speech and Language Therapist would be required to advise around this topic, as well as train clients and families how to communicate with this new equipment.

As the muscles in the mouth and throat weaken, the Speech and Language Therapist will also be required for swallowing assessment and review. They will monitor the client’s ability to swallow and will make recommendations on their diet. This may mean having softer, pureed food, or could eventually mean advising that a tube is inserted directly to the stomach so that the client can be fed via a percutaneous endoscopic gastrostomy (PEG) tube, eliminating the risk of any food or fluid entering the lungs due to a weak swallow.

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Fraser sporting a Giving Voice t-shirt with our Vice President, Sophie, and Social Secretary, Mahie.

We were lucky enough to have Fraser present on the evening to answer some questions after people had watched the documentary. Fraser created the majority of the content for the documentary by filming his father’s journey with MND over the years, and was able to provide us with amazingly honest and insightful answers to the many questions asked.

Overall, the event was a great success. The Motor Neurone Disease Association were kind enough to provide us with lots of resources for the event, and we provided every audience member with information sheets about MND, as well as popcorn and a bag of sweets.

From ticket sales and donations, UCLU Giving Voice raised £200 for the Motor Neurone Disease Association (MNDA). 44 people attended, 28 of which were UCLU Giving Voice Society members, but also staff, speech and language therapy students, students from other courses and friends showed up to support this event. 
20170201_191159The event was successful at not only providing people with the opportunity to see this amazing documentary, but also providing them with the unique opportunity to discuss their immediate thoughts, feelings and questions about the battle with MND with Fraser, and we received some great feedback.

“It made me feel appreciative of my family and how lucky we are. I learned about the impact that degenerative diseases can have on other family relationships and how it can push people apart at the same time as bringing them together”

“I was very moved by the film, it made me really think about life and death and what really matters. It was quite painful to watch but I’m definitely glad I did. I didn’t really know much about MND before so it taught me about the disease and its progression. It gave me an insight into what it’s like to have MND but also how difficult it must be to see a family member suffering.”

“It highlighted the impact of the role of the family in the care of a loved one. A patient shouldn’t just be seen as a patient, supporting the family in the how to communicate with the patient is equally as important”

– Feedback from the event

Many thanks to Fraser for being part of the event, and to everyone who attended and donated. Based on information provided by MNDA, here is what your £200 could be going towards:

  • 20 information packs for newly diagnosed people with MND
  • 6 adapted cutlery sets to help someone with MND continue to feed themselves
  • Funding an MND researcher for just over a day
  • Running the MND Connect support information line for 2 hours
  • Funding laboratory equipment for 4 day’s vital research into finding out the causes of MND
  • Producing 40 copies of ‘So what is MND anyway?’, a guide for young people affected by MND

Click here to see some of the highlights from Fraser’s Q&A session, after showing the documentary.

For the most recent updates following the filming of ‘Filming My Father: In Life and Death’, like the Facebook page.

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UCLU Giving Voice Committee

Facebook: UCLU Giving Voice Society

Twitter: @GivingVoice_UCL

Instagram: uclugivingvoice

Email: ucl.givingvoice@gmail.com

Documentary trailer:

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Winner of the UCLU Giving Voice Raising Awareness Challenge!

Back in September, armed with our  ‘Challenge Bag’, the UCLU Giving Voice committee encouraged the society’s potential new members to take on various challenges to spread awareness of speech, language, communication and swallowing needs.

Some of the challenges included hosting a dinner party with a communication friendly menu, tweeting 3 messages raising awareness of speech, language and communication needs (SLCN), and holding a film night with a movie relating to speech and language therapy, for example The Diving Bell and The Butterfly.

Here is a video of Hollie Wright taking the challenge of videoing herself explaining how to make a sweet milky tea backwards to highlight the additional processing demands for those with SLCN.

I didn’t expect my challenge to be straightforward, but I certainly didn’t anticipate it would be this difficult. The thought of finding it that tough to communicate ALL the time is not a nice one – Hollie Wright

The prize for the winner of the challenges was a beautiful piece of art by Sue from Headway Cambridgeshire, who is living with a brain injury. Sue created her artwork using a Batik style of painting, which uses wax to prevent dye from penetrating the cloth, leaving “blank” areas in the dyed fabric.

And the winner was…. Fionn MacLauchlan! Fi took the challenge of raising awareness of dysphagia by eating a pureed diet for a day and documenting it on social media.

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It was actually really hard trying to plan the sorts of food I could eat and it affected my social plans for the day too. I had porridge, scrambled eggs and soup. It was really bland and I can’t imagine doing this everyday. Being on a puréed food diet would be a lot more difficult than you think, and would take a lot of creativity and effort to keep it interesting. – Fi MacLauchlan

Congratulations to Fi! And well done to everyone who took part. Speech, language, communication and swallowing needs are viewed as ‘hidden disabilities’, as they are often not visible or obvious to other people. For this reason, it is important that we raise awareness of these difficulties in any way we can. Social media is a powerful tool to enable us to share our experiences: together we can hopefully shed light on these ‘hidden disabilities’. If you see an interesting tweet, or an informative Facebook video about SLCN or dysphagia – SHARE SHARE SHARE! Let’s get the word out!

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UCL Giving Voice Committee

Facebook: UCLU Giving Voice Society

Twitter: @GivingVoice_UCL

Instagram: uclugivingvoice

Email: ucl.givingvoice@gmail.com

UCLU Giving Voice Taster Evening

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For the very first time, we – the UCLU Giving Voice Society – ran a Taster Evening on Wednesday 5th October 2016 to spread awareness about speech and language therapy, and what it may be like for somebody with a speech, language, communication or swallowing need.

We are extremely pleased to say it was an overwhelming success!

We had some first year MSc Speech and Language Science students attend, but the majority of attendees were undergraduates from a variety of UCL courses including: Linguistics, Psychology and Computer Science. It’s fantastic that so soon into this academic year, we already feel like we are reaching out to new people, sparking a genuine interest and initiating realisation about the importance of what Giving Voice stands for.

If you missed out on this event, we will be making our slides from our introductory presentation available on our Facebook page, alongside all photos and videos of our stalls (see descriptions below!). If you were wondering how your field/ interests may be relevant to Giving Voice and want to find out more, please have a look at them. Not only may you be surprised by some of the facts and statistics we’ve found, but you may also be surprised to realise that your own skill base could bring something incredible to the society.

A particular highlight of the presentation included clips of tremendous comedian, Lost Voice Guy, who we hope may feature as a guest for us at an event later in the year… Watch this space!

If you’re intrigued, have any questions or ideas, or want to get involved with Giving Voice in the future, please do not hesitate to get in touch with us.

We would love to hear from you!

 

UCL Giving Voice Committee

Facebook: UCLU Giving Voice Society

Twitter@GivingVoice_UCL

Instagram: uclugivingvoice

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Word Finding (‘Articulate’) Stall

In our ‘Word Finding’ game, players were given a series of written words and asked to describe these words to a partner. We challenged them to see how many words their partner could correctly guess from their descriptions in just one minute! This game aimed to replicate the experience of word finding difficulties, where people have severe difficulty in producing words despite having a clear understanding of the word they wish to use. Everyone experiences this type of difficulty from time to time: it is the experience of a word being on ‘the tip of your tongue’. However, those with atypical word finding difficulties may find that it has a severe impact on their communication, which became clear to those playing the word finding game. They expressed frustration that some words were extremely difficult to describe and that it was challenging to try and quickly develop an array of alternative definitions for words if their partner was having trouble guessing. Some even expressed frustration at their partner when they were not able to guess the word from their (obviously very clear!) descriptions.

As well as allowing people to experience the challenging and frustrating aspects of word finding difficulties, this game allowed players to experience a compensation strategy that some people use to try overcome these difficulties: circumlocution. This strategy involves describing a word you are struggling to find by using lots of other related words. By describing the words they had written down, players were using circumlocution to help their partners guess the word. This had varying levels of success! While some people were only able to get their partner to guess one or two answers, one expert describer managed to get their partner to guess an impressive eight words! This demonstrates how effective this type of communication strategy can be if an individual is skilled at circumlocution and if the person you are talking to is good at interpreting that information!

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Idiom ‘Pictionary’ & Charades Stall

The Idiom Pictionary & Charades activity seemed popular among the attendees. For this activity, there were different idioms and well-known English phrases on the table; one person had to choose one at random and then through either drawing and/or charades only, had to try and communicate the message to their partner. No talking allowed!

What seems like such a simple game is actually quite difficult and can be very frustrating! Many people who had a go commented that it was difficult to convey the meaning of their phrase without using words, particularly as it involved figurative language, which is one of many experiences individuals with communication difficulties have when they cannot communicate their message. Some people also found it hard to get inside their partner’s head and work out what their drawings or gestures were referring to, which is also a barrier communication partners face with people with speech, language and communication needs.

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Thickened Fluids Stall

In the atrium of Chandler House we provided some refreshments with a twist! The dysphagia stall gave people the experience of trying thickened liquids and opening up a discussion about what it must be like to have a swallowing difficulty.People with swallowing problems may struggle to swallow thin liquids, such as water, as they pass through the mouth quickly and are hard to control. Most people know this as ‘going down the wrong way’, and those with a regular swallow may find that they are able to clear their throat to easily fix this. People regularly coughing when drinking fluids, however, are at a high risk of the fluid entering their lungs, which could cause a chest infection known as aspiration pneumonia.

To prevent this from happening, patients would have their drinks thickened. This is safer as it moves slower and allows better control of the swallow. Three different consistencies were made last night (syrup, custard and pudding) so that attendees had the opportunity to compare them all. Some were made with orange juice and others with water, but everyone came to a consensus that the thickener was more tolerable when there was a stronger flavour.

Everyone who approached this stall was hesitant about trying the thickened fluids, based on their murky appearance, but most were willing to have a go! Some people even practiced thickening the fluids themselves to a custard thickness and were fascinated as they felt it thicken with every stir. We had a few psychologists attend the event, which led to really interesting discussions about the psychological impact of having to ‘eat’ your drinks by using a spoon. Overall people appeared genuinely interested to learn about dysphagia and stated that it was not something they had ever considered before.

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AAC Stall

One of the interactive activities at the taster evening involved each pair giving and receiving instructions using AAC (augmentative and alternative communication) devices. According to the Royal College of Speech and Language Therapists, AAC are forms of communication that either replace speech or are used to support people to communicate, such as signing, symbols, eye gaze devices, communication boards and voice output aids (think Stephen Hawking). Individuals with ASD (Autism Spectrum Disorder) might use AAC, as well as those with Cerebral Palsy, Parkinson’s, MND (Motor Neurone Disease) or complex learning needs. October marks International AAC Awareness Month, and if you are particularly interested in finding out more about it, whilst also having fun, we are holding an AAC Treasure Hunt around Bloomsbury on the 19th October 2016.

During our activity, one person in each pair was given a blank maze and the other was given the same maze but with a point marked on it. Using a communication app that was downloaded onto an iPad, directions were given purely using this alternative means of communication. All of the people who had a go at this activity were interested in finding out a bit more about the different client groups who would use this kind of device and there were many discussions around the different types of AAC device available, such as eye gaze devices. Many people made the link to figures such as Stephen Hawking and some computer science students who attended were even interested in how the more complex devices work!

For most of the students, this activity was their first experience of seeing and using AAC devices and they found it fascinating to experience a communicative exchange using alternative means of communication.

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Fiction or Diction (Balderdash) Stall

In our Fiction or Diction game, players were given two words matched with their definitions. Players were asked to either read the definition of one of the words, or make up their own definition of that word, being as weird and wacky as they wanted. Their partner had to guess whether the definition provided was the real one, or had been made up.

Players seemed to really enjoy this game, and were coming up with weird and wacky definitions for lots of the words they were reading. After the games players made lots of interesting comments about being able to recognise the words, or parts of the word, but had no idea about the real definition of the words they heard. This provided an interesting experience of what it might be like to have some language difficulties, where they cannot access meanings of words and can therefore lose the whole meanings of sentences.  For players making up definitions it also provided an interesting experience of ‘circumlocution’, whereby people with language difficulties may ‘talk around words’. This was because many players said that they tried to use the definitions on the card as a guide, to help them come up with meanings, but found it difficult to change the language, so found that they were talking for a long time to describe things which were very similar to what they were reading.

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Makaton Practice Stall

We had one stall which gave people the opportunity to practice using some Makaton signs. Makaton is a programme which uses signs, symbols and speech to help people communicate. It also uses facial expression, tone of voice and positional gesture to supplement the hand signs, so it really is a comprehensive approach to communication!

Signs are used to enhance key words in a sentence in spoken word order – this gives extra clues to the person receiving the message, or might help a person whose speech is unclear make themselves understood.

People responded well to learning how to exchange greetings (“hello, how are you?” “I’m good thank you”) and finger spell their name. It was exciting to see the ‘penny drop’ moment for lots of participants when they realised how intuitive many of the signs were. People reflected that trying to supplement their spoken communication to ensure successful interaction isn’t necessarily scary – it can be really rewarding. Many people asked questions about the types of clients who might benefit from using Makaton and why professionals would use this type of communication.

Only one of the visitors to this stall had heard of Makaton prior to the Taster Evening, so this was a great opportunity to share a new approach to communication! We signposted people towards the Makaton website for further resources and training courses.

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Hearing Aids Stall

At our hearing aid stall, we gave people the opportunity to learn more about what hearing aids are and how they work. Individuals were given the chance to try on a hearing aid (albeit a very old model!) and walk around the events and interact with different people to get a sense of what it is to be a hearing aid user and how communication might differ to prevent communication break downs. Everyone was very enthusiastic in learning more about the mechanics of hearing aids and how they have developed over the years.

Ultimately, it allowed people to have a dialogue on interactions they have had with hearing aid users, experiences of family/friends who are hearing aid users, as well as how communication partners play a vital role in ensuring communication runs smoothly ie: facing the individual directly, speaking clearly but not over articulating and exaggerating lip  movements, as well as not shouting as it may be uncomfortable for a hearing aid user (Action on Hearing loss).

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