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.
In 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.
The 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.
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.
Guests 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.
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.
We 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.