#ClinicSpeak: Day-4 post cyberbombing

Are you monitoring your own MS worsening, stabilisation or improvement? #ClinicSpeak #MSBlog

Barts Health NHS Trust remains one of the epicentres of the cyberbomb that was dropped last Friday. I have no access to my NHS network and hence remain paralysed with a large, and increasing, backlog of NHS work.

The matron in charge of outpatients phoned me yesterday to ask whether, or not, I wanted to cancel my clinic today. She was informing me that I would not have access to any electronic health records, nor access to results of investigations, access to booking systems, referral letters, etc. In other words if I did my clinic today I would have a blank sheet of paper and the patient in front of me. Let's go for it I said. I am confident that patients attending outpatients today will understand the circumstances we are working under. My skill set is taking a history, examining the neurological system, recognising patterns, formulating differential diagnoses, selecting the most efficient path to a definitive diagnosis and then managing the problem. I can do a lot of these tasks with a piece of paper and a pen, and using verbal communication. 

What this episode is teaching me is the value of self-managed paper records. Every person should have a personal file in which they keep a copy of their own medical notes. Self-maintained paper records is the one system that has been shown to the most efficient and practical in developing countries and even in developed countries. We keep our daughters' vaccination records in their red book, which was started when they were born. The little red post-natal health record is simple, cheap, efficient and resistant to cyberbombing, but unfortunately not resistant to napalm. 

This crisis should also act as a stimulus, or reminder, to pwMS that self-monitoring and engagement in your own disease is critical for ensuring access to the best care. I have been banging the patient-activation and patient self-monitoring drums for several years now. Why? Just yesterday I was asked to complete a feasibility questionnaire for a new secondary progressive MS trial. At the top of the list was whether or not our centre monitors patients with an annual EDSS. An important inclusion criteria for the trial is documented evidence of disease worsening (formerly known as disease progression) over the last 12 months. To be honest with you we don't have time to do an EDSS in routine practice; it takes anything from 15-20 minutes to do an EDSS. I know many neurologists who say they do an EDSS, but when you ask them they don't do a systematic examination of the nervous system, nor do they walk their patients. In other words the EDSS they do is a guestimate. If you have had an EDSS done properly you need to have your complete nervous system examined so that all the functional systems can be scored. The neurostatus form below summarises what needs to be documented. Anything less than this is an estimate. This is one of the reasons why we developed the web-EDSS an online PROM (patient related outcome measure), based on the telephone EDSS to allow pwMS to monitor their own EDSS scores. We are also creating a suite of tools on ClinicSpeak to allow people to monitor their MS more systematically. We have designed and produced a cheap, environmentally friendly cardboard 9-hole peg test and will shortly be embedding instructions on how to perform a timed-25-foot walk and walking time. My motto is that if you can't measure it you can't change it. 

If you can't show that your disability is worsening then  you can't be entered into new clinical trials and in all likelihood you won't be able to access new licensed MS treatments. Do you think NHS England are going to allow us to prescribe DMTs, such as ocrelizumab to pwPPMS, without documented worsening of disability over the last 1-2 years? 

CoI: multiple

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