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.

twitterlogoUCLU Giving Voice Committee

Facebook: UCLU Giving Voice Society

Twitter: @GivingVoice_UCL

Instagram: uclugivingvoice

Email: ucl.givingvoice@gmail.com

“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:

https://www.facebook.com/plugins/video.php?href=https%3A%2F%2Fwww.facebook.com%2FFilmingMyFather%2Fvideos%2F1398984187078460%2F&show_text=0&width=560