London: An App could soon ensure that people affected by motor neuron disease (MND) get access to specialist care and support when they need it and prevent unnecessary trips to doctor.
MND is a progressive and debilitating condition that causes paralysis of muscles in the body leading to difficulty in walking, moving, talking, swallowing, breathing and eventually ends in death.
The TiM (telehealth in motor neuron disease) system, is provided in the form of an app on a tablet computer.
Weekly updates on mobility and general well-being are sent to the patient’s specialist MND care team to swiftly identify problems and points for action.
“We hope that the telehealth system will improve the care and support we can offer patients and their carers by enabling us to respond to problems as they arise,” said Chris McDermott, who masterminded the telehealth project at University of Sheffield in Britain.
An initial trial with 40 patients will now start at the Sheffield MND Care Centre to assess how well the telehealth system works.
If successful, a larger trial will follow with the aim to make this technology widely available to MND patients.
“This app has the potential to make a huge difference to people with MND, particularly those living in rural areas where travelling to hospital is very difficult and you can feel very isolated,” said Emily Goodall whose father suffered from MND.
Patients were also closely involved in the new web resource which provides essential guidance on the use of vital breathing support for people with MND.
“We invited members of the public with experience of MND and non-invasive ventilation (NIV) to work with web designers and film makers to create a new information resource, myNIV,” McDermott pointed out.
“The idea being that they could create something that contained all the things they wished they had known about NIV at the start to make it easier to use,” he added.