Today in the UK, six people will hear the devastating news that they have motor neurone disease (MND). MND attacks the nerves, leaving people locked in a failing body, unable to move, talk and eventually breathe. Tragically 30% of people with MND will die within 12 months of diagnosis and over 50% within 2 years. There is no cure.
About nine in ten people with MND will be affected by weakness of the muscles involved in speaking. Gestures and facial expressions can also be affected, which means communication can become very difficult.
Rhian King is a speech therapist, her client who was diagnosed with MND in 2019 had significant difficulties communicating by only using occasional single words. Rhian arranged for her to receive an iPad with predictable app from the Karten Hub this year.
Her daughter lives abroad, she has not been able to visit since the start of the pandemic. Over this time her verbal communication skills have significantly deteriorated. She was able to visit her mum in September 2021 for the first time in 2 years. The iPad allowed them to spend time together and have a conversation which has been very challenging over recent months. It gave her a voice and a chance to connect with her daughter for the first time in a long time.
The iPad is the only way she can communicate effectively. The iPad gives her a voice with her family and close friends, without it, she would be completely isolated.
Giving someone a voice is one of the most important aspects of my job. Being able to communicate your wishes or just join in every day conversations can be key to a person’s wellbeing and being able to provide a tool to assist with this is so important. – Rhian King, Speech Therapist
Communication aids bring a lifeline to people living with MND, their families and carers. We have previously found that the NHS funds communication aids for fewer than half the people with MND who need them and 39% of those who do receive equipment wait for more than six weeks for the equipment they need.
When people receive a communication aid they are delighted, as they have sometimes struggled to convey basic messages for some time or have significant concerns about their speech deteriorating and being left without a voice. – Rhian King
To ensure people are able to communicate with those around them, the MND Association provides a wide range of communication aids to people with MND, either through an item of loaned equipment or through purchase of equipment to meet individual need. These include items such as the iPad and text to speech app described above, Lightwriters, Alloras, iPads and boogie boards.
The most recent funding provided by the Ian Karten Charitable Trust has allowed us to further expand the number of loan items we hold, and in total now consists of:
- 11 Lightwriters (including 7 new SL50 Lightwriters)
- 3 Alloras
- 16 Voice amplifiers
- 34 iPads with cases
- 1 Android tablet
- 5 Laptops
- 6 Headset microphones
- 4 Boogie Boards (LCD writing tablets)
- 20 Predictable text to speech app licenses
Having access to communication aids is invaluable. Often as therapists we know what tools and devices will be of benefit for our patients, but we do not have access to the funding to purchase & loan then the device they need. Speech Therapist
Over 160 people with MND have so far benefited from the use of the Karten Hub equipment provided to the MND Association, with many more to benefit in the future, helping us bring a bit of light in what can be very dark times.
When people are provided with a communications aid from MNDA they are amazed at how fast the service from referral to equipment loan is and both patients and family are grateful and thankful. – Speech Therapist
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- This article was written by the Motor Neurone Disease Association Karten Centre
- Featured in the Karten Winter 2022 Newsletter
- This article is listed in the following subject areas: Centre News