An innovative telehealth system and web resource developed with the help of patients and carers could revolutionise access to care and support for people with motor neurone disease (MND).
In response to patients’ needs, MND experts at the Sheffield Institute for Translational Neuroscience (SITraN) have developed a bespoke monitoring system to ensure that aids and assistance can get to patients at the right time. The system named TiM, for “telehealth in motor neurone disease”, is provided in 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.
Dr Chris McDermott, Consultant Neurologist at the Royal Hallamshire Hospital and mastermind behind the telehealth project, said: “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.”
An initial trial with 40 patients will now start at the Sheffield MND Care Centre funded by a National Institute for Health Research (NIHR) fellowship to trial manager Dr Esther Hobson. This pilot study will 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.
Dr Hobson said: “Patients travel from all over Yorkshire to the Sheffield MND Care Centre to receive care from specialist doctors, nurses and therapists. For many of our patients, travelling to these appointments becomes more difficult and eventually impossible, as they become more unwell.”
Emily Goodall whose father suffered from MND said: “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.”
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. Non-invasive ventilation (NIV) has been shown to prolong life and improve the quality of life of MND patients whose breathing is affected. NIV delivers slightly pressured air into the lungs through a face mask to supplement patients own breathing.
MND specialist Dr McDermott said:
“Although NIV is an effective treatment, up to forty percent of patients can struggle to use it. Our research identified that a group of people gave up early on because of practical issues and not fully being aware of the potential benefits of persevering. We invited members of the public with experience of MND and NIV to work with web designers and film makers to create a new information resource, myNIV. 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.”
MND, also known as amyotrophic lateral sclerosis (ALS) is a progressive and debilitating condition that causes paralysis of muscles in the body leading to difficulties walking, moving, talking, swallowing, breathing and eventually death. While there are no effective treatments for MND, the challenge for doctors and carers is to improve the quality of life of people affected by the disease and to ensure they get access to specialist care and support when they need it.
The University of Sheffield has a strong portfolio in developing technologies for patients with long-term conditions through initiatives by SITraN, Telehealth & Care Technologies (TaCT) for Long Term Conditions and Devices for Dignity Healthcare Technology Co-operative (D4D) who have all collaborated to develop the TiM system in partnership with Abbott Healthcare Products.
Funding for these projects was provided by Westfield Health, the MND Association and the Research for Patient Benefit Programme, as well as a Doctoral Fellowship Award by the National Institute for Health Research supporting Dr Esther Hobson.
The web address for the myNIV resource is http://niv.mymnd.org.uk/. For further information on these resources and the TiM pilot study please contact: Dr Esther Hobson, phone 0114 222 2260, email firstname.lastname@example.org or visit the TiM web pages.