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

UCL Communication Clinic gets published!

commclinicAs a group therapy activity, some clients at the UCL Communication Clinic have recently had an article published in their local newspaper. It aims to draw attention to aphasia and the cuts to aftercare, and their hope is that their local MP will be able to help make changes.

Find out more about the UCL Communication Clinic on their blog:http://blogs.ucl.ac.uk/communication-clinic/

 

“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

Merry Christmas from UCLU Giving Voice!

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Twas the 9th of December, and all through the cloisters,
Not a creature was stirring, no festive carol voices,
But with heads put together, and thinking caps adorn,
THE GIVING VOICE CAROL CONCERT ROCKED THE CRUCIFORM!

Tinsel was hung around the room with glee,
As choirs gathered to get themselves ready,
ALAS, what is this? The pianist is delayed?
No worry, a quick jig of the setlist was made!

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The crowds flooded in, about 150 or more!
Mince pies were nibbled as the mulled wine was poured.
The festive spirit began to fill the air,
As everyone sat to enjoy what we’d prepared.

First up: Downright Excellent, who sang Rudolph’s song!
Thanks to the kids and parents for coming along.
Next up was the talented UCLU Sign,
Whose performance was, quite simply, divine.

The Giving Voice choir joined the stage for the first time!
And the audience was eager, after learning some signs.
Wonderful Christmastime and Merry Christmas Everyone,
We sang and we danced, along with Makaton.

And last but not least, it was time for Sing For Joy!
The pianist arrived just in time for us to enjoy,
Such energy and charisma, their choir was enchanting,
They even got everyone up on stage dancing!

So thank you to all, who attended with a smile,
Your support and your enthusiasm made it all worthwhile.
We raised awareness of Giving Voice, PD and Downs Syndrome,
We hope you have a lovely Christmas all tucked up at home!

dsc_0484Alongside the carol concert, we ran a Downright Excellent volunteering programme and UCLU Giving Voice were able to support them in raising £260 through Christmas card sales. You can find out more about our visit to Downright excellent on our previous blog post. Downright Excellent are a wonderful charity that provide therapy to children with Down syndrome. It was great to have them in our carol concert this year and it was lovely to have an impromptu speech from one boy telling the audience  that he “loved his mum” and that “she looked very pretty” – I’m sure that made her night!

We were very lucky to have Sing For Joy Bloomsbury return for another year. Sing for Joy is a choir for people with Parkinson’s Disease and similar conditions, their friends and carers.  One person in every 500 has Parkinson’s, meaning around 127,000 people in the UK. Everyone’s experience of Parkinson’s is different: the symptoms someone has and how quickly the condition develops will differ from one person to the next. Their performance raised the roof and certainly got everyone in the festive spirit!

Thank you again for everyone who took part in the Giving Voice choir. We were lucky enough to have 30 Giving Voice members take part in our choir this year and we were so impressed by your devotion and enthusiasm in the event.

Thank you also to everyone who attended the event as spectators.  There was huge variety of people in the audience: family and friends of those performing, society members, undergrads and post-grads, and UCL staff. We were impressed with how many people in the audience got involved with the UCLU Giving Voice choir performance after being taught the signs for the chorus – The Singing Hands ladies, who were our inspiration for the performance, even commented saying that it was a great example of active not passive learning.

We have really enjoyed our first term as the UCLU Giving Voice Society, and look forward to many great things we have planned for 2017!

Have a very merry Christmas and a happy new year!

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UCL Giving Voice Committee

Facebook: UCLU Giving Voice Society

Twitter: @GivingVoice_UCL

Instagram: uclugivingvoice

Email: ucl.givingvoice@gmail.com

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Downright Excellent Christmas Fun

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On Saturday 3rd December 2016, a group of (very keen!) Makaton signing, Christmas-jumper-wearing UCLU Giving Voice members and committee members visited the lovely children at Downright Excellent, as part of a volunteering project.

This is the second year that we have been involved with Christmas festivities at Downright Excellent, and once again it was an overwhelming success. It’s questionable who had more fun – us or the children!

Downright Excellent are a wonderful London-based charity that provide therapies to children ages 0-11 with Down syndrome (speech and language therapy and occupational therapy).

Using a choice board, the children were encouraged to take turns and make choices about which songs the group would sing and sign to next. Although a clear favourite was Let It Go! (Frozen), other festive choices included:

Rudolph the Red Nose Reindeer
12 Days of Christmas
Jingle Bells (complete with musical instruments!)
Wonderful Christmas Time
We Wish You a Merry Christmas

It was very overwhelming to see not only how engaged the children were with both singing, signing and leading the songs, but how much fun they were having; whether they were laughing at some of our not-so-accurate signing, out-singing us, or generally just having a great time, there were smiles all round!

We all came away from the morning in absolute awe: it was fantastic to see how much ‘voice’ each and every one of the children had to give. It was such a success, we were invited to support the children in the centre with some singing for their Christmas Party!

If you would like to get involved with our next visit in Spring 2017, or would like further information about volunteering opportunities at Downright Excellent, please do not hesitate to contact us!
Good singing and signing skills are definitely NOT required…

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Find out more about Downright Excellent here