Given the current curtailment of community based services due to COVID-19, vulnerable patients with progressive neurological disease and their families require active surveillance by a service that can respond rapidly to the changing clinical and social status of patients and families. The COVID-19 pandemic has also made patients and their families reluctant to attend their GPs or visit the hospital, creating a high risk of both disease progression and breakdown of care that is usually provided by family members and community based services. Remote but accurate tracking of patient’s clinical symptoms, early recognition of risk, and rapid transfer to an appropriate facility will be essential to prevent a crisis.
We propose to adopt, implement, evaluate and modify a telemedicine system (Telemedicine in MND TiM)) generated by Sheffield University, to provide immediate support for those with Motor Neuron Disease (MND) and Frontotemporal Dementia (FTD), muscular dystrophy, spinal muscular atrophy, and related conditions. We estimate that around 800 adult patients in Ireland will benefit from this immediate and innovative approach. We will ensure the evaluation measuresare tailored for each component of the implementation plan, and will obtain an accurate, holistic picture of its strengths and opportunities for improvement. This information will be provided in data reports and patient satisfaction surveys.
In the short term this will address the needs of vulnerable patients and families with progressive neurologic disease, whose care is compromised as a direct consequence of the disruption imposed by the COVID-19 pandemic. In the intermediate/ longer term, the TiM Ireland platform will be further designed, developed, implemented, audited and modified in an iterative way to address the current fragmentation of knowledge collection and sharing, and to provide a sophisticated communication system between service users (patient/caregivers) and health care professionals in hospital and community settings, that continuously enhance squality of care.
