Last reply 2 months ago
Drug Advice Is Changing Fast

There are many reports of MS Nurses not being that up to speed, giving overly precautionary advice and relying on what are proving to be too generic and outdated guidelines. Outdated because things are moving so fast. The drug risk (there is v v little it turns out) assessments from the leading neuros is not tallying with what many have been told. That is worrying because people are being unnecessarily worried.

I know where I want to take my advice and that is from the world expert neurologists. These peeps are all about us. None of them would dream of playing something down to make us ‘feel better’.

It is not going to be long now when all the services in the UK become v. limited or temporarily non-existent and there will be a greater need to fend for ourselves for some time.

No MS unit wants to cut people loose on such short notice. The Medical Director of the hospitals has the power to tell them to drop their day-to-day tasks and make themselves available for front-line duty. All rather scary for them. It needn’t be too worrying for us.

Self-sufficiency and new ways of getting information are being thrust upon us. http://www.ms-selfie.com is the first attempt to close this gap, reduce anxiety and keep patients informed and give them a place to come to with questions that the site doesn’t answer.

It is the first of what will be many virtual spaces to do the bulk of MS care. Times are a’changing

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itsmewithms
2 months ago

Yes, it seems I was more up to speed than my clinic when I talked them last week…glad I’ve been able to be kept up to speed here 😉


itsmewithms
2 months ago

I wasn’t aware of this until I just checked the news… British Prime Minister Boris Johnson has Covid-19, becoming the first head of state to test positive for the virus. The government says he will isolate himself at Downing Street but continue to work. Meanwhile, global cases have passed the half-million mark, with those in U.S. taking the lead, at almost 100,000 cases.

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