Facilitating access to specialist care for patients and carers living with motor neurone disease using telehealth
The term quaternary care refers to medicine of advanced levels which are highly specialised and not widely accessed. These services are usually only offered in a limited number of regional or national health care centres. The care provided for people with Motor Neurone Disease by The Sheffield Institute for Translational Neuroscience (SITraN) is a good example of quaternary care. MND is a rare condition that progressively damages the nervous system, causing the muscles to waste away.

Whilst having access to specialist care for rare disorders is essential it can also be challenging as people may have to travel long distances to seek advice and for consultations. With conditions such a MND this can be especially difficult as the condition progresses as mobility will be restricted and therefore carer, family and friends must support an individual if they are to attend clinic. 

The advent of technologies such as telehealth holds great promise for improving access to quaternary care. Telehealth uses technology in the patient's home to gather information on health status that can then be viewed remotely by clinicians in order to inform care planning. By reference to this information the clinician may decide to intervene prior to a planned consultation or to delay a scheduled visit if all is well. In addition telehealth gives the patient the reassurance that their specialist is monitoring them between visits and they can flag any changes in their condition which they find concerning.

Cogent Healthcare Systems are working with consultants Chris McDermott and Pamela Shaw, and NIHR Clinical Fellow Esther Hobson at SITraN, within the University of Sheffield, to create a telehealth system from MND. 

Motor neurone disease occurs when specialist nerve cells, called motor neurones, stop working properly. 

Motor neurones control important muscle activity such as:
• speaking
• writing
• walking
• breathing
• swallowing.

As the condition progresses, people with motor neurone disease will often find these activities increasingly difficult, and eventually impossible, to do. As the damage progresses, the symptoms become more debilitating. Importantly the sequence in which muscle activity is affected and the rate of development of the condition vary in individuals. It is therefore important to reflect this pathology in the way the telehealth system works.

Cogent Healthcare Systems is keen to work with SITraN because we have access to passionate professionals who are keen to improve the quality of care
for their patients. We believe that our expertise in producing accessible medical devices, and in designing telehealth services, is ideally complimented by the specialist expertise of the neurologists in Sheffield. We work as a single team striving to achieve a clear vision and have a flexible and collaborative approach to making this work. Cogent firmly believes that the role of telehealth is much broader than the areas traditionally served such as lung and heart disease. When leading technologists and clinicians work in true partnership the opportunities to revolutionise care become apparent.

This project has been adopted into the CLAHRC TaCT theme. Devices for Dignity (D4D), another NIHR initiative, are also involved in this project.  www.cogenthcs.com | www.devicesfordignity.org.uk www.sitran.dept.shef.ac.uk