Saturday, 30 November 2013

Survey results: MSology and eMedicine Portal

MSology survey results. There is support for a MS eMedicine portal. #MSBlog #MSResearch

"The results of this survey are self-explanatory. It is clear that most MSers who read this blog have access to healthcare professionals who specialise in MS. Things are clearly improving. I am reassured to hear that there is support for a eMedicine MS-specific portal, which I plan to set-up in the future. I have also posted some of the few comments left on the survey at the bottom of this post. Once again thank you for taking the time to complete this survey."



Comments:


I am a big believer in e-medicine transforming healthcare delivery. The sooner it gets to MS the better.
I only got switched to a MSologist after I started DMTs, and only then because the PCT decided that all those on DMTs should be looked after by a specialist.

Having moved, I'm not entirely sure if the neuro I see is a MSologist or not, although they can prescribe DMTs, the actually prescription comes from a hospital in a different region (and it can be very hard to find out anything about an individual, especially if they don't work privately), though the MS Nurse is very good.

The NHS in general shouldn't get so uptight about using email, So many simple appointments could be avoided if medics were happy to send and receive email.

There are times I won't need a MSologist / MS nurse and a digital pathway determiner (an online way of helping push me down the right medical path) seems a sensible way of not wasting experts time while still accessing medical help

I realise I am lucky living in London with a fantastic GP, MS Nurse and a Neurologist specialising in MS less than 10 miles away. My Tysabri infusions are also given at the same hospital.

I live in Jerusalem. I could go to the MS center at ******* but believe that the center at ********** near Tel Aviv is better. I thus take two buses to get there because I do not drive. It's worth it. I can get emergency appointments when necessary. The level of care is excellent at all levels. Occasionally, I take a taxi. But it is expensive, so only do it when I feel sick or I need to be at the center very early in the morning. This does not happen very often. I strongly believe that is essential,to be treated by an MS specialist, particularly one who is located in a large multidisciplinary center. An added plus is to have a good doctor who listens, cares, and possesses a sense of humor. This is my situation.

I would prefer talking to a computer than my real neurologist. He's a smarmy git.

I think that neurologists should sub-specialise, it is confusing enough that the practice among MS specialists in the Uk is so varied, let alone having general neurologists also involved. There are practical problems in small hospitals though.

The Clinic Speak posts are a good start. I have found them very valuable.

I am very lucky, access to he MS team at Royal London monthly because of ASCEND trial.
I think access to someone who knows something about you, your diagnosis and history is essential. How else can you get good treatment? That is especially important if you are going to have remote treatment by phone or electronic method

Re e- medicine access to broadband/cable/satellite can be a significant problem for country people.

Fortunately, I live in Sydney, New South Wales, Australia, a large city with excellent health care facilities and services. I know I am very lucky to have this available to me.

Personally I have spinal stenosis and currently we are investigating hipbone necrosis .... So I know I am lucky to have ****** of Sheffield, Hallam hospital supporting me!!!!

It just gets so fuzzy ... The lines between which condition IS the CAUSE of my pain and inability to WEIGHT BEAR.

Re first question: at one time, I was seeing a neuro privately and had to wait 5 days to see him 'urgently'. Now, my next NHS appointment has been postponed from the 8 months specified by the neuro to 18 months (so far, anyway).

I am fortunate in that i live close to a large hospital with a specialist neurology centre. I was seen at my first visit by an ms specialist who told me at this visit that I probably had MS. Following brain MRI I was told at my next visit that I had ms and was offered dmd's and referred to an ms nurse. I appreciate that in this instance location location location was the thing that allowed me to be diagnosed so quickly. So yes I believe it is crucial to be seen by an ms consultant as quickly as possible. However it is also imperative that the gp considers this possible outcome and so refers you the correct person. However I concede that neurological manifestations come in all shapes and sizes so it is difficult for a gp to know when to refer and to whom.

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