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.
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
How does the EDSS scoring work when the patient has other issues that make walking difficult, such as arthritis etc, as well as walking difficulties caused by ms?
There are ways to accommodate for this in the scoring system; the scoring system refers to MS specific issues only.
Good on you for going back to old school doctoring. This sort of doctoring allow for face to face conversations. My neuro is nice but at the appointment he or his trainee spend 95% of the time staring at the monitor – either looking at previous notes or typing in new stuff. I assume Prof Mouse is home in bed as he can't do much without IT!
Just back from clinic and enjoyed it very much; more time for talking less typing, dictating and looking at a screen.
I've always been concerned about the unscientific way my EDSS score has been determined ('guesstimated') without any real examination, or at least nothing that I noticed. "Your in a wheelchair, therefore …". But I can stand up & take some steps between parallel bars etc. etc.
This is the point I am making; EDSS is dominated by walking so you can get away with the correct EDSS when someone is wheelchair bound.
May I add:Don't click links on any emails that you might receive!
At work there is an internal team launching phishing attacks against other employees- you get a written warning if you fall for one of their phishing mails. Put in a mental safety catch before clicking on any link or attachment- look at the sender's address make sure that it is an internal or appropriate domain name before clicking on anything.
ProfG you and other neuros have a fantastic skill set that never ceases to amaze me. I hope you've enjoyed your IT free clinic this morning, I'm sure your patients will have understood and been very grateful to you for keeping their appointments. I have huge respect for my neuro who observes with incredible skill and seems to know me and my MS so well despite having seen me in person at most a handful of times. Interestingly, he doesn't use a screen at all during the appointment or waste endless time looking back through notes. Must have an exceptional memory and dictate clinic letter immediately after I guess. Judging from other comments I am fortunate. Thanks, as ever, for spending some of your valuable time keeping this blog updated. It is hugely appreciated by so many MSers around the world. Some irony that blog unaffected by Barts cyber attack!
Ps spot that I started above comment before lunch and didn't post until after! Pps other comments referred to were anon 11.01 and all the frustrations in yesterday's delayed diagnosis post fresh in my mind.
I believe this episode should teach your hospitals IT staff to pay attention to network security.**And have realistic disaster recovery plan.**
Lessons learnt are to always update IT and update more also on MS .This has been delayed with consequences due to no common sense .
I disagree. Main lesson is that you have to have and IMPLEMENT your DRP.I'm not sure what impact this had on a critical operations of the hospital ProfG works for, but suspect it to be severe. Downtime of 4 days, you're joking? I don't know about regulations in UK regarding IT services in medicine, if there any, but in typical financial company, or service provider or in any other industry this is the reason to fire your CIO/CISO/head of IT operations right away.
It's a bit more complicated than that. Many computers operating particular pieces of machinery run specialised software that is not compatible with newer operating systems. So due caution is necessary. As I understand it at the moment no-one is quite sure where this ransomware originated from, there is some evidence North Korea is in the frame but also the blog was receiving a large and very unusual amount of traffic from Russia just prior to this event.It's not just the NHS that has suffered, a number of large corporations around the world have also been affected.
Gavin – this post is a wonderful tribute to yours, and the others', ability to have a glass half full approach to life.My IT lecturer background allows me to reassure you all that once the cat was out of the bag within your organisation (one person read one email or clicked one one link) that you were all, work computer wise, completely helpless.Do not forget that this is a US cyber weapon at a certain level!Take care, live life joyously
PS I'm sure you realise how "walkist" the PROM is. (EDSS 8.5)Nevertheless it is *incredibly* helpful and will be too, to Ros my "significant other"