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Welcome to the newest section of the For Professionals area of our website, your dedicated Q&A page.

To replace the forum, we have introduced a place for you to send in your questions and queries to us. We will select one to be published in our newsletter every month, as well as on this page.

How it works

Submit a question to education@mndassociation.org and we will seek out an answer from either a member of the team, or consult with a professional so we can provide you with the best and most detailed answer. We will then share it with you in the next newsletter and on this page.
To get us started for January, we picked out the last question asked on the professional forum before it closed.

What experience do people have of running remote consultations for people living with MND that are no longer able to attend clinic? Is there good take up for these clinics and how do you make them work?

This was a hot topic at the International Symposium – you can read more about remote clinics in an article here. We asked Dr Esther Hobson, a neurology specialty registrar, for her views. Dr Hobson was involved in the design of Telehealth in Motor Neurone Disease (TiM):

Esther: Telemedicine (videoconferencing) has been used to offer care to people living in very rural area, or when they are too ill to travel.

For people living with MND, it is feasible and acceptable to patients and can deliver good care. It’s used occasionally in the US, whilst a few centers in the UK are now using it too. NHS Scotland are integrating telemedicine into a whole host of “digital first” services, and not just those in remote areas. Another leader in the field is Airedale Hospital (Skipton) who have integrated it into their day-to-day working with the aim to offer the service to patients at home who are at high risk of admission, along with having telemedicine stations in libraries, nursing homes and even prisons. In an acute crisis, those providing telemedicine can offer care directly or can stay “with” the user until help arrives. The use of Telemedicine for acute stroke has revolutionised treatment, and many more people now get access to thrombolysis.

Telemedicine does require some organization. Either the patient has to attend a local clinic/GP surgery or, if the patient is at home, they will need a good internet connection and usually a call before the appointment to check the technology is working. You do need a secure line, and sadly, most people find that Skype is not acceptable to their IT governance team, meaning a commercial provider is needed.

Whilst it is very convenient for patients, it isn’t necessarily a time saver for clinicians. Setting it up tends to create extra work, and on some occasions the technology may not always operate. Equally, there are worries it might exclude people with speech or cognitive problems (for example, of respiratory function or spasticity) by where a video and specialist examination isn’t possible. However, it would be reasonably easy to arrange tests through local services and many patients later in the illness do not require these types of assessments. It is good to see patients together with their local care professional as it aids education and communication.

Telemedicine isn’t the only way to do things differently. The Sheffield MND care centre has been trialing a telehealth system that lets patients and carers send information to the Multi-Disciplinary team (MDT) using an app. St Luke’s Hospice in Sheffield have been using “eShift”: a system whereby junior staff attend the homes of patients but use the internet to receive constant supervision from the specialist MDT in the hospital/hospice. This may make the service more efficient by delegating tasks to less qualified staff whilst retaining good quality. The results of these trials are due to be published very soon, and the hospice is now looking to develop this service in Multiple Sclerosis with the potential to expand to include anyone with a long term neurological condition and deliver things like rehabilitation, therapy and traditional appointments.

A major barrier to these novel methods of care is currently, it’s rare that hospital based services are funded for anything other than traditional face-to-face appointments. At present, home visits are often unfunded and telephone visits get a lower tariff too. However, our experience during the Sheffield TiM telehealth trial suggests that patients are very keen to see different ways of working and this, combined with the clear evidence that MDT care improves outcomes should help drive service development in this area.

As a little plug, Sheffield are looking for other MDTs of any shape or size to get involved in a larger trial of TiM telehealth. Do get in touch if you are interested in learning more or are interested in setting up your own service.

Some useful links:

A review of the evidence behind telemedicine in MND.
Airedale telemedicine
A summary of the TiM telehealth system
A recent study of telemedicine in the US Andrew et al: “Incorporation of Telehealth Into a Multidisciplinary ALS Clinic: Feasibility and Acceptability.” Amyotrophic Lateral Sclerosis & Frontotemporal Degeneration 2017. doi: 10.1080/21678421.2017.1338298.

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