Barts-MS rose-tinted-odometer: ★★ (Fatigue Friday has to be a midnight blue day #191970)
Everyone is asking me what COVID-induced changes to your MS NHS service will you keep? What will be the new normal, etc.?
What I don’t want to keep is not being able to examine my patients, in particular, new patients.
To diagnose MS you need to show dissemination in space; i.e. does this person have clinical signs in two neuronal pathways or two different areas of the central nervous system? For an adequate prognosis, you need to assess if there are any subtle signs of damage to the nervous system. The latter can’t be done on a video link very accurately.
Yesterday, I saw a patient for a relapse assessment who had clear signs that were missed on a video consult two weeks ago. She is on fingolimod and has clearly had a relapse or may have an opportunistic CNS infection and now requires an urgent MRI. What happens if she turns out to have PML? A two-week delay in diagnosing PML could have potential consequences for this patient.
Although we now use our online EDSS calculator to assess EDSS scores, to do it properly you need to do a neurological assessment, which takes about 20 minutes and you need to walk the patient. You can do neither by telephone or video. With remote work, we will never be assessing our patients level of disability accurately. This is particularly important to assess subtle signs for example pallor of the optic disc in the back of the eye. You can’t do ophthalmoscopy remotely; at least not yet.
In more disabled patients I like to get them on the couch and examine their buttocks for signs of early pressure sores. This can’t be done by telephone. Similarly, the smell of being unkempt and the assessment of foot and mouth hygiene can’t be done remotely. These provide clues about who is vulnerable and not. Many pwMS in the UK are extremely vulnerable and one of our tasks is to help these patients. If you can’t identify them how can you help them.
Subtle clues of physical abuse, which is very common in pwMS, can’t be detected remotely. How many patients who are being physically and mentally abused are being let down by remote work?
Diagnosing and managing depression in someone with MS is hard remotely. The subtle body language and demonstrating empathy often need presence, i.e. a physical presence and not a remote presence. One of my patients who I saw this week remotely is desperate for physical contact. She is socially isolated and working from home. She just wants an excuse to get away from home and see people. Coming up for her outpatient appointment is a day trip for her. We seem to forget that interacting with the NHS and its staff can be a needed social event. This is lost with remote work.
I can go on and on but will stop here. It is clear that remote work, despite having some advantages, has severe limitations. Do you have any personal experiences you want to share with us about how remote consultations have let you down?
This open-access letter below voices some of the concerns these HCPs have about their teleneurology service. If you are an HCP and are reading this please share your experiences with us.
Thomas et al. Integration of Teleneurology within the Health System to Manage Patients of Multiple Sclerosis and Other CNS Demyelinating Disorders During COVID-19 Pandemic. Ann Indian Acad Neurol. May-Jun 2021;24(3):443-445.
General Disclaimer: Please note that the opinions expressed here are those of Professor Giovannoni and do not necessarily reflect the positions of the Barts and The London School of Medicine and Dentistry nor Barts Health NHS Trust and are not meant to be interpreted as personal clinical advice.