Telehealth in Motor Neurone Disease

MND is often referred to as amyotrophic lateral sclerosis (ALS) or Lou Gehrig's disease.

Patient Inclusion Criteria:

• Patients aged 18 years or over who have attended the MND clinic at the Royal Hallamshire Hospital, Sheffield.
• Patients with amyotrophic lateral sclerosis diagnosed by a consultant neurologist with symptom onset within the last three years.

o Or

• Patients with amyotrophic lateral sclerosis, primary muscular atrophy or progressive lateral sclerosis diagnosed by a consultant neurologist with a deterioration in their condition as evidenced by a deterioration in the ALS functional rating score (ALSFRS-R) by at least two points during the previous 18 months.
• Live within 120 minute drive from Sheffield

Patient Exclusion Criteria:

• Patients attend another MND care centre in the UK.
• Significant impairment in decision making capacity preventing informed consent by the subject due to a major mental disorder including fronto-temporal dementia.
• Patient unable to use the TiM system due to physical, intellectual or language difficulties and unwilling to permit carer to operate it on their behalf. Patients will be asked to complete two questions used within the TiM system, with, or without the help to their carer to verify their ability to use the system.
• The patient has no eligible informal carer willing to participate in the trial
• Insufficient mobile telephone reception in the patients' home to use the TiM system.
• Any other major impairment that may affect their ability to participate in the study

Carer inclusion criteria

• Age 18 years or older
• Person identified by the patient as the major provider of informal care (emotional and/or practical support) to the patient and provides more than one hour per week of unpaid care
• Carer willing to allow data they provide during the trial to be shared by the research team with their own doctor in the event of serious clinical need.

Carer exclusion criteria

• Significant decision making capacity preventing informed consent due to a major mental disorder.
• Carer unable to use the TiM system due to physical, intellectual or language difficulties. Carers will be asked to complete two questions used within the TiM system to verify their ability to use the system.
• Inability to participate in the study due to other major physical or mental illness or language difficulties.
• Professional carers receiving direct payment for their services.