As 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.
On February 1st 2017, UCLU Giving Voice held a documentary screening of “Filming 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.
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.
The 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.
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.
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!
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!
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!
Alongside 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!
On Saturday 22nd October Giving Voice society members supported the UCL Communication Clinic to raise awareness about the challenges of living with aphasia through the “Lost and Found” exhibit at the Bloomsbury Festival.
The Bloomsbury Festival is a creative celebration of art, culture and science which takes place each October with over 130 events held over five days. This year’s events were inspired by the theme LANGUAGE, and attracted up to 3000 people on the Saturday alone! At least 150 of them visited the “Lost and Found” exhibit. People came curious and open to conversations – perfect for Giving Voice volunteers to really engage with!
Our key points to communicate to people about aphasia were:
It is a difficulty with language; which may affect ability to talk, understand, read, write, or calculate
It affects each person differently to different degrees, and can affect any age group
It does not affect intelligence
It can be caused by stroke, brain injury, infection, progressive neurological conditions, or tumours
The challenges of living with aphasia can lead to a rage of emotional reactions; including anxiety, depression, frustration, embarrassment, and isolation
It affects more than 376,000 people (more than MS and Parkinsons combined), and is one of the most common communication difficulties
Speech and language therapists are uniquely placed to provide assessment, diagnosis, treatment and support for people who have aphasia
Many people we spoke to had never heard about aphasia before, and often confused it with amnesia or Alzheimers. The “Lost and Found” exhibit gave visitors an interactive opportunity to explore the challenges of living with aphasia. People contributed a word they couldn’t live without to the “Lost Words” artwork, and thought about what it might be like not to be able to use those words. We were struck by how most words were positive in nature, and also how often the names of loved ones were at the front of people’s minds. People recorded themselves using Dragon Naturally Speaking software, and the output was projected as part of the “Writing allowed” activity. People reflected how frustrating it could be when what was projected was not what they thought they had said, and we were able to talk to them about how important it is to train people in using different communication strategies. Clients from the clinic with aphasia showed their artwork in
the “Finding a Voice” display, many pieces with complex themes and social commentary. Visitors reflected how poignant and intelligent the pieces were, and learnt how aphasia affects language but not intelligence. People were able to listen to recordings of people with different types of aphasia at the “Missing details” activity, and compare how this might affect their ability to describe the same picture – a kind of “spot the difference” visual representation of lost language.
When anonymously surveyed, most people said they would not feel comfortable interacting with someone with aphasia at a social event. We were really grateful for people’s honesty, but it underpinned for us just how socially isolating and challenging living with aphasia could be, and the need to keep working to help people become more confident and comfortable interacting with people who have speech, language and communication difficulties.
Before the event we held an optional drop-in training session for anyone who was keen but a bit nervous about the opportunity to communicate with people living with aphasia, or talk to people about the condition. This is because the Giving Voice society is made up of people from all different backgrounds and disciplines, and not just those training to be speech and language therapists. The Committee was so impressed by the number of people who had never done anything like this before who were willing to bravely give it a go! In the end we had seven willing volunteers in addition to six committee members – a massive thank you to all the volunteers; and to Caroline Newton and Carolyn Bruce from UCL who organised and ran the exhibit.
The “Lost Words” artwork that was created will be on display on Wednesday 2nd November from 5pm at Chandler House, where there will also be a reading and discussion from Lauren Marks, an author with aphasia. All are welcome!!!!
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.
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.
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!
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 phone. 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
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.