Celebrating What Makes You You


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From the 11th June to the 16th June, UCLU Giving Voice ran a social media campaign celebrating the talents of people who have speech, language and communication needs (SLCN), to encourage people to not see disability before ability. People were encouraged to share any great experiences they may have had with an individual they have met, or a wonderful charity, that celebrates people who have a speech, language or communication need.

Articles, stories and quotes were posted throughout the week and some topics discussed were around acting with SLCN and representation of people with SLCN  in popular culture.

UCLU Giving Voice managed to make 10.2K impressions on twitter during the campaign,as opposed to our 200-300 average impressions per week. We had 361 interactions on twitter and 55 likes on Instagram. We even got retweeted by Lost Voice Guy!

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Our most popular posts were quotes from UCL lecturers Steven Bloch and Stefanie Bucher who discussed the importance of communication and how rewarding being a Speech and Language Therapist can be.

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Thank you to everyone who engaged in this social media campaign – we hope we’ve highlighted the importance of seeing ability before disability, and celebrating what makes you you!

twitterlogoUCLU Giving Voice Committee

Facebook: UCLU Giving Voice Society

Twitter: @GivingVoice_UCL

Instagram: uclugivingvoice

Email: ucl.givingvoice@gmail.com

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:

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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 Annual AAC Treasure Hunt 2016

October is International AAC (Augmentative and Alternative Communication) Awareness Month and what better way to raise awareness of AAC that by getting people to experience it first-hand!

Some Key Facts on AAC:

  • It is used as a way to replace speech or to support speech in individuals with communication difficulties.
  •  AAC can also be used to help these individuals to understand what others are saying.
  • There are lots of different types of AAC. Signing, eye gaze, alphabet charts, ipad apps and voice output systems are all forms of AAC.
  • If you’ve ever given someone a “thumbs up” or waved goodbye, you’ve used AAC!
  • AAC is used by people of all ages. It is mainly used by people with Parkinson’s, Motor Neurone Disease, dementia, Alzheimers, Autism Spectrum Disorders, Learning Difficulties, and Cerebral Palsy.
  •  Approximately 652,000 people in the UK benefit from using AAC (Scope, 2008)
  • You can find more information here: http://www.communicationmatters.org.uk/page/what-is- aac

Last year UCLU Giving Voice held a successful AAC Treasure Hunt and we have decided to make this an annual event. With committee members scattered around the Bloomsbury area, armed with low tech AAC devices, challenges and clues, the participants had to race to the finish line to win prizes.

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Teams meeting in the UCL Quad, getting ready to set off on the hunt. 

To start off the event, tokens were hidden around the UCL Main Campus and the team who could find the most had a head start in their journey to the first location. Committee members were easily identifiable around the area with ‘ASK ME’ signs and big glowing pink balloons.

We were surprised by the number of people not taking part in the event who stopped and asked us about what we were doing. This was a great opportunity to explain what Giving Voice was, what this event was aiming to do and where they can find out more information. None of the general public had heard of Giving Voice or AAC before, and it was often a mention of Stephen Hawking that made them understand. A member of staff from an underground station was particularly interested in Giving Voice as she said she wished she could received more training on supporting people with communication difficulties, owing to the fact that she comes in contact with them regularly.

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Teams using their Communication Boards to ask for help. 

Once teams reached their first location, they had to use their BoardMaker Communication Boards to ask for help, and were then given a written clue by committee members. If they needed further clues, participants were encouraged to continue using their AAC rather than resorting to using verbal language. Many participants realised how limiting this could be and would often search their communication boards for things they wanted to say, and had to use gestures to fill in the rest.

There were 5 locations around Bloomsbury that the teams had to find, and each location employed a different form of low tech AAC,  including image boards, yes/no cards, pen and paper, alphabet boards and fingerspelling. Once all 5 locations had been visited, they would eventually be signposted to the final mystery destination, which was, of course, a bar!

Throughout the course of the evening there were various challenges that the teams were encouraged to complete in order to shave minutes off of their final time. These included “Buy something for £1 using only AAC to communicate” and “Ask as many people as possible what the time is without using your voice”. A particular favourite was asking teams to spell GIVING VOICE with their bodies!

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‘Giving Voice’ letters formed with their bodies!

Additional fun challenges led to 5 random objects being collected, one stranger being videoed using AAC, 10 members of the public being spoken to about AAC, 22 instances of asking for the time without using words and 5 items being bought in local shops using only AAC. One team discussed the challenges they faced when buying an item in a shop: they found it hard to get the shop attendant’s attention without using words, as he was on the Screenshot_20161020-142327.pngphone. They then felt that he was trying to look at all the symbols on the communication board rather than the symbol that the team member was pointing to, which she found frustrating.

Overall the event was another huge success for UCLU Giving Voice. We had 25 people attend from a variety of courses including Computer Science, Psychology and Linguistics. Participants were eager and committed to using their AAC devices and were creative in the ways they tried to communicate for example demonstrating their knowledge of Makaton Sign!

This event gave attendees the chance to experience use of low tech AAC to replace speech. Some said AAC was fairly intuitive, but reflected that there were additional options on devices such as the communication board that they didn’t use but thought could have helped them in some interactions. This led to conversations about the need to promote uptake of AAC devices by thinking about the user’s needs and competence, and ensure there is support and training for users. One team member stated that AAC provided a shared experience, such as the letter board, because everyone could see what was being typed. This led to a conversation about

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Teams using their Communication Boards to ask for help.

attitudes towards AAC, and the fact that there are types of AAC that are becoming more ingrained in everyday life. For example, the increased use of everyday devices that require typing may mean that AAC may no longer be perceived as ‘odd’ or ‘different’.

The event ended in the UCLU Library Bar where some participants even used AAC to order pizza. The man who served them was not phased at all and engaged easily with their Boardmaker Communication Board. He said it seemed to “make sense” and was appreciative when complimented on his good communication skills.

Team One were the overall winners of the 2016 AAC Treasure Hunt, and received a little parcel of goodies. Congratulations to team one! Head over to our social media pages to see more photos and videos from the evening.

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UCL Giving Voice Committee

Facebook: UCLU Giving Voice Society

Twitter: @GivingVoice_UCL

Instagram: uclugivingvoice

 

UCLU Welcome Fair 2016!

On the 1st and 2nd October the UCLU Giving Voice Committee attended the UCLU Fresher’s Welcome Fair and had a fantastic time meeting new people and spreading the word about Giving Voice. Rain definitely failed to dampen spirits!

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Our eye-catching stall at the Fresher’s Fair.

 

Thanks to RCSLT Giving Voice UK we were able to decorate our stall with Giving Voice badges, pens and balloons. We had spent time creating banners, posters and flyers to inform the freshers about what Giving Voice is all about, and to advertise our future events. We managed to hand out 295 flyers to people over the course of the two days!

We created many fun, quick challenges for our visitors to complete in order to enter into a prize raffle draw. The aim of these challenges was to get people talking about speech, language and communication difficulties, by asking people to describe certain terms without the use of words, produce signs, or reading a jumbled sentence with a fact about SLCN.

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Teaching us the BSL sign for ‘Festival’

We were really impressed with the response to these challenges and the number of people who were willing to give it a go and engage in a conversation about it with afterwards. We were able to teach at least 8 people to sign “hello, how are you?”, and one girl taught us a new BSL sign for ‘Festival’!

Over the course of the weekend, we also took the opportunity to carry out a quick poll to discover how many people knew what a Speech and Language Therapist (SLT) did, and how many people had experience with someone who had a speech, language or communication need (SLCN). We managed to ask 122 people these questions and had some really interesting responses!

Only 37% knew what an SLT did, with a common response that they ‘help people who stammer’. Two of the people we asked knew someone who was a practicing Speech and Language Therapist. 40% of people had experience of someone with SLCN. 3 people had received therapy for speech or language difficulties as children and 4 people had friends or ffreshers2amily with Autism Spectrum Disorder and had seen SLTs make a difference in their lives. 1 person had a hearing impaired classmate and used to sign to her in classes, and 1 person had a friend with a stammer.

Only 17% of people we asked had heard of Giving Voice: most other people assumed it ‘something to do with singing’, and those who had heard of it associated the society with ‘volunteering’. One person we spoke to actually felt he had an undiagnosed language problem and found it particularly interesting to hear about the work around supporting people with these difficulties.

We also used this opportunity to talk to other societies, such as the UCLU Sign Language Society and the UCLU Volunteering Society, and we look forward to working collaboratively on some events with them in the future!

Overall, the response was great and one girl who didn’t know what Giving Voice or SLCN was on Saturday, even brought her friend back to our stall on Sunday and explained it to her. We hit social media hard over the weekend, documenting everything we were doing, and with great results:

119 likes on our Instagram photos (and counting..!)

comments on our instagram photos

86 ‘engagements’ with our Twitter posts (number of interactions with tweets, eg liking, retweeting, clicking a link)

1,900 ‘impressions’ on Twitter (number of times users saw the tweets on twitter)

10 likes on twitter

16 likes on Facebook

 

We’ve really had an amazing weekend as a committee interacting with you all and spreading awareness. Here’s to the year to come!!

We will be announcing the winner of our raffle prize soon, so keep an eye out on social media for the announcement!

twitterlogoUCL Giving Voice Committee

Facebook: uclugivingvoicesociety

Twitter: @GivingVoice_UCL

Instagram: uclugivingvoice

 

 

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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