Telehealth in MND (TiM) project delivers tool for supporting care for people with MND

An MND Scotland funded research project awarded to the University of Sheffield has helped develop a new tool for supporting care for people with MND – Telehealth in MND, TiM.  

The project, which began in 2019 and has now completed, was focused on understanding the feasibility and acceptability of using remote monitoring for people with MND, with the aim of developing a telehealth approach to improving access to specialist MND care. 

Having identified that most people with MND welcomed the use of digital technologies to enable home monitoring, the researchers adopted a user-centred co-design approach, which invited people affected by MND to input into the development of the tool. Using an iterative feedback approach, they were able to continue to improve TiM throughout this process. 

The project was impacted by covid but, while this meant plans on engaging people affected by MND in the development of TiM had to be altered, it also led to a rapid adoption of telehealth approach to medicine in Sheffield, and TiM was deployed locally which allowed some real-world testing and development to take place. 

The TiM tool, which can be accessed via a computer, tablet or phone can be used as often as desired; some people inputted information only when their condition changed while others preferred to use it weekly. Both people with MND and their carers are able to input a variety of information about themselves and their care, including their weight, what their appetite is like, how well they are breathing, and their mental wellbeing. TiM can also be used to facilitate appointments, treatment administration information, educational interventions and telemedicine. 

Thanks to the success of this feasibility study, the researchers secured further substantial funding from NIHR (National Institute for Health and Care Research) which means that TiM can be implemented and tested in more centres across England. It has also led to the development of a partner tool, TiM-Research (TiM-R), which will allow people with MND to engage in research, regardless of where they live in the UK, and be kept up to date with active studies. 

TiM-R is also being widely adopted by researchers within the UK MND Research Institute, and they have published an interesting article, which you can read on their website. 

Liam Knox, Research Fellow, University of Sheffield, said: 

“The funding from MND Scotland for this project has helped us create a service that is really supporting people with MND and their families to gain access to specialist MND services. Now that we have expanded TiM to other centres around the UK, it is great to hear how people with MND, carers, and healthcare professionals are welcoming the new approach and the ability to connect with each other outside of the standard appointments that are once every three months in England. 

“MND Scotland supported us throughout COVID, enabling us to adapt the project so that we could directly deploy TiM to support people with MND at a time they likely felt most vulnerable. This has led to further funding from the NIHR and our new research service, called TiM-Research. The entire team are grateful for opportunities like this from MND Scotland.”  

Quote from a patient who has used TiM: 

“It makes such a difference. I was waking up in the morning with a fuzzy head and feeling unbalanced. But thanks to the online system the specialist team at Sheffield worked out that the flow on my breathing machine needed revising. I was sent a different mask and a new bit of computer hardware. Within a matter of weeks, it completely changed how I was feeling. 

“I live just outside Lincoln so it’s an hour and half each way to get to Sheffield, plus there’s the time it takes to have your appointment, whereas with the app I get sent the questionnaire and I can complete it in my own time. Before it was a long, tiring day, especially as fatigue is one of the big things I battle with, but the app makes it really easy. My husband also managed to access a carer’s assessment. It’s been absolutely fantastic.” 

Quote from a carer who used TiM: 

“You know it was really nice because, even though I attend [the patient’s] appointments and I watch over her, care for her, it’s like somebody’s bothered about me as well. Which is really nice that somebody would take that time to actually say are you okay. Not that there was anything that they could do but it was nice just that the specialist nurse picked the phone up, and said what’s going on, are you okay, which was lovely.” 

Dr Jane Haley, Director of Research at MND Scotland, said:  

“Medical treatment is advancing all the time and it’s important that new technologies are also harnessed to support people. By creating a digital platform, TiM is helping people with MND in England experience improved, or more convenient, care. We look forward to seeing this scheme evolve and welcome the subsequent development of TiM-R which will enable people affected by MND across the UK to engage with further research.”