By Nyaka Mwanza
Multiple sclerosis (MS) can result in a variety of communication difficulties. While broaching uncomfortable topics, such as multiple sclerosis life expectancy, can pose its own challenges, MS can also physically disrupt some people’s ability to communicate as effectively as they once did.
That’s because MS is an immune-mediated condition that damages and destroys neurons in the central nervous system (CNS). Known as demyelination, this destruction of nerve cells causes lesions in the spinal cord, optic nerves, and brain. MS lesions in certain areas of the CNS can sometimes result in difficulties with speech and comprehension. However, there are ways of overcoming these difficulties so that a person may communicate better.
How MS Disrupts Information Exchange
Communication issues in people with MS usually arise due to damage in areas of the CNS that are responsible for cognitive and motor function.
Cognition refers to our ability to think, read, learn, remember, reason, and concentrate. Cognitive processes also comprise language, planning ahead, imagination, and perception.
Approximately 70 percent of people with MS experience impairments in these cognitive functions. Cognitive difficulties such as slower processing speeds and worsened memory can impede a person’s ability to process spoken or written language. Cognitive impairment in a person with MS may also look like difficulty finding the right words for things when speaking, difficulties spelling words correctly, or switching words incorrectly when speaking.
Language and Speech Difficulties
Speech and language involve several cognitive functions, but speech also involves intact motor function, especially the coordination of the muscles in the lips, tongue, vocal cords, and diaphragm. However, MS can disrupt the brain’s ability to communicate properly with various muscles in the body, sometimes interfering with the ability to produce appropriate speech.
Dysphonia is a voice disorder due to weakened diaphragm functioning. The diaphragm helps with breathing and volume control. Dysphonia can result in very quiet or loud speech. A person with dysphonia may also find that they run out of air while talking. Dysphonia can also cause a raspy voice.
Dysarthria is a motor speech disorder commonly caused by the weakening of muscles used for speech, swallowing, and breathing. Between 40 and 50 percent of people with MS experience passing or permanent dysarthrias, which may result in slurring, monotone, and disruptions to speech patterns with abnormally long pauses between syllables or words. Issues like these can make holding a conversation difficult or uncomfortable.
Bridging the Communication Gap
A speech or language pathologist is a specialized healthcare provider who can evaluate and help treat voice and speech disorders. Depending on the severity of a person’s MS, some speech therapy will focus on compensating for dysfunctions in cognition and speech and enabling people with MS to find alternative means of communication. Other therapy for more mild speech difficulties may focus on developing strategies to control breathing, strengthen the vocal cords, or even simplify speech to make it easier to get through. People with MS may find it’s easier to hold a conversation when they’re not competing with other noises or distractions. Tools that aid with cognitive dysfunction, such as Talking Mats, can help loved ones concentrate on common topics to help make discussion easier. Here is an example of how Talking Mats helped some with multiple sclerosis to set their goals https://www.talkingmats.com/getting-root-problem/
- MS Prognosis: Multiple Sclerosis Life Expectancy
- Speech and Swallowing
- Multiple Sclerosis and Communication Difficulties – East Sussex Healthcare NHS Trust
About the Author
Nyaka Mwanza is a freelance writer for MyHealthTeams. She completed a B.A. in Communications: Visual Media from American University and undertook post-baccalaureate studies in Health/Behavioural Communications and Marketing at Johns Hopkins University. Nyaka is a Zambian-born, E.U. citizen who was raised in sub-Saharan Africa and Jacksonville, N.C. However, she has called Washington, D.C., home for most of her life. For much of her career, Nyaka has worked with large global health non-profits focused on improving health outcomes for women and children. Nyaka believes words hold immense power, and her job is to meet the reader where they are, when they’re there.
Delighted to introduce you to ‘The Communication Game’ : a board game for staff to improve their communication skills.
How we listen, talk and engage with people is fundamental to the quality and effectiveness of health and social care services. Although communication underpins everything we do in a work context, it can be a difficult topic for staff to talk easily about. Add to that the possibility of service users having an additional communication support need, through reasons like stroke, learning disability or dementia, then there is much potential for things to go awry and unfortunately, they often do. ‘Poor communication’ is cited as the most common cause of frustration in complaints about services.
The Communication Game was developed by Focus Games, NHS Education for Scotland (NES) and Talking Mats. It is a learning tool to help staff working in the health & social care sector increase their knowledge and skills around communication. The Communication Game is fun and easy to play. It can be played with or without a facilitator, and allows staff groups to have discussions and reflect on their communication skills. It allows them the chance to learn from each other. It will improve knowledge, but more importantly enable them to think about the small steps they can make to improve their interactions.
The project grew out of two previous projects funded by NES: Making Communication Even Better and Through a Different Door. In these projects, it was recognised that the experience of services for people with a communication support need is something of a lottery. For them, there was a considerable difference in the experience of interacting with a staff member who was empathetic and able adapt to their communication, to interacting with a member of staff who was struggling and unable to adapt their interaction. Training and understanding of inclusive communication practice is key. It has been a great privilege for Talking Mats to continue to support the work of the previous 2 projects and work with Focus Games Ltd to develop The Communication Game. Support during the development process from the Stroke Association Scotland, Capability Scotland, RCSLT, Scottish Care, Communication Forum, Queen Margaret University and NHS Ayrshire & Arran SLT Department have been invaluable, and we are very grateful; also to NHS Education for Scotland for their continued input and funding.
If you are working with staff in the health and social care sector, then this will be a great resource for you. You can get The Communication Game from the Focus Games online shop. It is guaranteed to promote laughter learning, and a touch of competitive team spirit. Most importantly, it will be a catalyst to help develop staff communication, making interactions better for people with communication support needs.
You can find out more about the game at www.communicationgame.co.uk
, and follow the game on Twitter on @Comm_Game.
Get your copy at www.focusgames.com.
What are the top 10 blogs for using Talking Mats with adults? Over the years we have posted lots of blogs on different aspects of our framework . If you are working with adults with communication disability these blogs maybe particularly helpful
- Where is the best place to start using the Talking Mats health and well-being resource?
- A blog from Denmark which highlights the effectiveness of using Talking Mats with people with dementia
- Goal setting with a woman with Multiple sclerosis
- Using the app with someone with aphasia
- The development of a resource to help people with learning disability raise concerns
- How can Talking Mats support Capacity to make decisions
- Involving people in their decisions about eating and drinking
- Thoughts on using Talking Mats with people with dementia to explore mealtimes
- Using Talking Mats with someone with a learning disability and dementia
- Use in a rehab setting in South Africa
If you want to explore our resource and training more please visit our shop
Social workers are required to complete a detailed assessment of their client’s needs. It is recognised that it can be a challenge to ensure clients fully participate in the process if they have cognitive or communication difficulties. The City of Edinburgh Council were keen to explore if we could adapt their standardized assessment tool and make it into a Talking Mat framework. Several staff in the council are already skilled practitioners in Talking Mats so are familiar with the framework and use Talking Mats in their practice. They are enthusiastic about the benefits of using Talking Mats both in terms of how it increases participation of service users but also because in their view it makes interviews easier for staff to undertake.
Structuring Talking Mats assessment framework
In order to develop the bespoke Talking Mat we held a seminar to discuss the social work assessment tool and approach used. Six key staff attended the seminar, facilitated by two Talking Mats associates. The discussion at the seminar identified a structure that would enable us to construct a coherent visual conversation that would cover the issues required to complete the assessment, using mind mapping to support this process. It is also important to identify a top scale that matches the question you are asking and make sure the options you are including are neutral and not leading.
The structure that emerged from this discussion is a Talking Mat that enables people to explore their views on 3 topics
- their home
- their health and well being
- their community involvement
Trialling the Talking Mats framework
Talking Mats then took the mind maps and developed these into symbol sets that were piloted by social work staff. At the end of the pilot a review was held and changes made which included alterations to
- the language used
- the symbols used
- the topic an option was included under
- making it clearer to staff when options were more abstract and required further explanation and or personalisation
Nicki Ewing from Edinburgh City Council who leads on the project says ‘ I am very excited that staff have a tool that can make assessment more meaningful for service users to participate in and makes it easier for staff to get good quality information’.
We are thinking of holding a focus group for others that might be interested in using the framework for their practice if, you are interested please contact Lois via the email@example.com email – call your email ‘social work focus group’.
It is recognised that it is difficult for people with communication disability to give feedback to health service staff. The group that developed the Making communication even better resource decided that mystery shopping would be a good way to find out whether health staff were supporting their communication and enabling them to access the services that they require and are entitled to. Funding was sought and gained from NHS Education Scotland for a small mystery shopping project.
20 people with communication disability were involved in the project which was coordinated by Talking Mats Limited and the Stroke Association Scotland. There were different aspects of the project – making phone calls, face to face visits and recounting personal experience . It covered the 14 Health boards in Scotland. The project report was named ‘Through a Different Door’ as this reflected the overall findings that people had highly varied experiences of interactions with health service staff ranging from the excellent and supportive to poor which had the further risk of endangering patient safety . Click here to read the final reports
Thanks to an OT colleague for this powerful story of how Talking Mats helped a woman with Multiple Sclerosis with goal setting by getting to the root of the problems she was having.
I am an OT working in a community rehabilitation team in Scotland. I have been seeing a woman (who I will call Jill) with MS. Jill has been experiencing increasing problems associated with her MS and finding it difficult to cope. During my first visit, Jill found it difficult to tell me about the problems she had been experiencing, and almost impossible to consider how we could translate these problems into tangible goals that we could work on. She was closed to any suggestions I made about potential rehabilitation goals. In her mind, the problems she had were there to stay, nothing could be done about them and she would just have to struggle on. We didn’t seem to be getting anywhere just talking about it. Jill was getting a bit exasperated and I was finding it difficult to keep a structure to our conversation and steer it towards agreeing on a goal that we could work towards. I felt there was a real risk of her disengaging from the service because we could not agree on a way forward.
Then I decided to use Talking Mats to see if that would help. I knew that using Talking Mats could help people with cognitive problems as well as those with communication difficulties. I wondered if doing a general Talking Mat using the Health and Well-being TOPIC symbols would help me identify what Jill thought her main problem areas were. Then I planned to do a sub-mat to look at her priority areas in more detail. My aim was to try and identify one or two rehabilitation goals (reflecting Jill’s priorities) that we could work towards. I really felt that there was potential to make a positive impact on Jill’s quality of life if I could get her to engage and agree on a goal to work towards.
Using Talking Mats proved to be a great success. Jill very quickly got the concept of it. It seemed to be much easier for her to pick up a symbol card, consider it, and then place it on the Mat. Using the Mat appeared to reduce the ‘cognitive load’ of the conversation and gave her structure to work within which she found much easier. Jill was able to identify what her main problem areas/ priorities were: – Mobility and Learning/ Thinking (see picture of her Mat above). Jill was pleased that she had got her message across and actually seemed to enjoy the process of using Talking Mats.
Now we have got a starting point. In my next session I’m hoping to complete sub-Mats with Jill in the Topics of Mobility and Learning/Thinking. This will allow us to explore these areas in more detail. Using Talking Mats was a real breakthrough in Jill’s rehabilitation.
To read another blog about using Talking Mats with someone with Multiple Sclerosis click here
We are launching our fantastic eating and drinking resource to support shared decision making. This has been co-produced with the help of people with eating and drinking difficulties and a range of different professionals. The resource is designed to help people think about, discuss and make informed decisions about how to manage their eating and drinking more safely. People with eating and drinking difficulties should initially be assessed by a qualified Speech and Language Therapist and Dietitian who will recommend appropriate strategies to help them eat and drink safely. This resource is particularly useful in helping people understand the effect that their eating and drinking difficulties can have on their health. It also helps people talk about how they feel about recommended strategies.
When discussing eating and drinking, there are many issues to consider. We have provided symbols under three main topics to help present ideas in a structured way that reduces the likelihood that the person will be influenced.
Click on this image to see it more clearly.
Discussing these topics separately means that people can firstly consider how they feel about different meal times, where they eat and types of food and then think about the impact that their eating and drinking has on their health. It also allows people to have a conversation about some of the suggested strategies and how acceptable these are.
We have run seminars specifically on this new resource in London and Stirling
Contact firstname.lastname@example.org for further information if you wish to attend a seminar in the future.
The Health and Well-being resource is based on the WHO International Classification of Functioning, Disability and Health (ICF) which is a framework which covers almost every aspect of daily life and can be applied over different cultures (WHO 2001).
Use of the WHO ICF helps professionals to think holistically about the people they are working with. We have produced four sets of symbols, based on WHO ICF, to help people express their views about different aspects of their lives. These cover 13 topics:
You can use the symbols in different ways, depending on the cognitive abilities of the person you are working with. For example, if you are working with someone who can understand abstract concepts, you could start with the 13 main health and well-being symbols. Your top scale might be ‘managing’ and ‘not managing’. Here is an example of a mat completed by Duncan who had a stroke which affected his ability to communicate through speech:
Using these symbols as a starting point, Duncan could tell us that his main concerns related to worries about his health, expressive communication and work. From here, we did ‘sub mats’ to help Duncan identify the specific areas he wanted to work on/explore.
Here is the mat Duncan completed in relation to his health:
Having done this mat with Duncan, it became clear that he was worried about various aspects of his health, particularly the risk of having another stroke. The wider team were able to give him and his wife information about stroke prevention. Other mats were also completed, exploring expressive communication, work and education and higher level communication (which is included in the ‘learning and thinking’ topic, and covers written communication as well as memory and concentration). Using the Health and Well-being symbols, we were able to work with Duncan to help him identify the main issues that he wanted to work on and then work towards more specific rehabilitation goals. Duncan had copies of all the mats he had completed and found it useful to refer to them over the months. This helped everybody stay on track in relation to his goals and he was also able to track his progress over time.
Have a look at our Health and Well-being resource on our website. It is available both as an original Talking Mat with a physical mat and symbol cards or as a digital version as part of The Talking Mats pro subscription
“About half of all people with multiple sclerosis have some degree of problem at some time with aspects of thinking – memory, attention span or concentration. …. Many people may not recognise cognitive symptoms as an aspect of their MS and they can arise early in the course of the condition although the greater the disease duration and severity the more likely problems are to occur”. MS Trust
Talking Mats is one tool which can help people recognise any problems they may be having. It also provides a sensitive way for people to discuss these issues and plan ways to manage their situation.
We have developed a range of topics which encompass virtually all aspects of a person’s life
Insert mind map
The Learning and Thinking topic is particularly relevant. The following is an example of a Talking Mat done with Stella who has MS and lives at home with her husband and 3 children.
Top Scale Used: Managing: Need some help: Not managing
Stella began by putting most of the option symbols between the Managing and Need some help columns. However as more symbols were presented, she took time and thought about each symbol more carefully and changed her mind about many of them.
She said that using Talking Mats helped her realise that she was having some problems. On completion of the mat, she showed it to her husband and together they discussed practical ways of ways of managing her difficulties.
There are a further 12 topics in the Health and Well-being resource that can be helpful to people with MS. these are available either on our app or as Talking Mats original.