Monday, June 29, 2015

Month 5 - Complaint about the NHS

I have been complimentary of the NHS now I want to whine a little.   Actually not just about the NHS as I had the same gripe about the medical establishment in the US.

Why has the rest of the business world, and even most of the government, moved to allow, and even encourage, electronic means of communication?

My GP practice has just started to offer an online consultation which I have used and whole heartedly support but they don't offer a simple contact form that could be used instead of a phone call.   I particularily wish they had this facility as they have been impossible to contact by phone the last couple times that I have tried.

Same comment in regards to the MS Team at Charing Cross.   I have an email address for one of the nurses but she works with trials and not the day to day treatment.   Email addresses should be available just like phone numbers AND people should be expected to respond to email within some reasonable amount of time.

Ok, there are issues with workflow control around personal email.   Just as there are around phone contacts.   But with email there are all kinds of systems that can be easily implemented to manage that workflow.  Free ones even (I can like open source stuff now that I am not in corporate IT)!

As I said, I had the same complaint in the US.   I remember sitting in my neurologists office observing his assistant.   She was adamant about not giving out an email address to patients.  I would then watch her on the phone with a patient inevitably spending the first minute or two on small talk that would not be part of an email dialog.   Handling of email can also happen at any time filling in otherwise idle time.   Sure there are cases where a phone call is required, and there are people who do not use email.  In the former fine, make the call, in the latter case, make the call knowing that this particular patient probably belongs to a generation that will not be around much longer anyway.  Interestingly the doctor was all over email.  It was the gatekeeper that was against it.   Same generation to which I just referred.

Ironically I recently had an experience where I was working with the Social Security Administration, their office in the US Embassy in London, and the NHS.   The embassy had requested my medical records and I was trying to get a status.   Working with the NHS was PAINFUL.   I left a couple messages on a contact form only to have them be ignored.  I could not find a relevant email address for any kind of records function.  Meanwhile all of my communications with the embassy were by email.   All of my exchanges happened within the service level they advertised and they were all helpful.

Frustrating.  What does the medical establishment have against electronic means of communication?  The gatekeepers union?

Thursday, June 25, 2015

Month 5 - Did Dracula have MS?

Everyones symptoms are a little different so I am not sure to how many people this observation will apply...but...I think one of those that might have been able to relate was Dracula.  

I am at my best (for what that is worth) in the middle of the night and at my worst in the middle of the day.  As the sun rises I start to feel weak and lethargic and as it sets I regain some energy.  I have become a little nocturnal though I have not gone to the extremes of popping into a coffin at sunrise and rising at sunset.  

Then there is the possible body chemistry connection.  Note that what follows is purely a fanciful conjecture as I am not going to experiment!   Body chemistry plays a role in how well an MS damaged body transmits signals across the nervous system.  Exertion changes that chemistry to the determent of movement.   Heat is part of that reaction as heat is evil for most MS sufferers but I understand that the body chemistry also changes when your muscles work (which explains my symptoms getting worse when I exert myself as I certainly don't work hard enough to raise my body temperature!  A drug called Fampyra (Ampyra in the states) changes the body chemistry in a positive way (minor unfortunately).

So here is the fanciful conjecture.  What impact did the fresh blood have on Dracula's body chemistry and therefore on his MS symptoms?  It would have had to have had some effect.  As I recall there was no substitute for the real thing either.   Has to be fresh and warm and human.  Not exactly something that the National Institute of Health or the National Health Service is going to research is it?

Just sayin'

Wednesday, June 24, 2015

Month 5 - Posting and Optimism Linked?

It has been long enough that I am changing the format for post titles to just reflect a month since my treatment.   Given that I am doubting that the treatment has had any positive impact I am thinking that, if I continue blogging, that I will need a new name for the blog.  Maybe just Fighting MS.

As I look back on the posts that I have done to date it is obvious there is a link between my optimism around the treatment and the number of times that I have posted:

Month Posts Comments
Feb 14 In for the treatment.
Mar 47 Out and feeling optimistic.
Apr 0 Where is the recovery from my stay in the hospital?
May 4 Where is the positive impact on disease progression?
Jun 1 to Date What is next?

As I write this my level of optimism has continued to flag.  I don't think that the treatment did me any harm but unless it suddenly kicks in then it has also done no good.   My disease has been progressing, as MS does, since my diagnosis.   As the myelin has eroded it seems like the threshold for further damage has become lower.  

In any case I am at the point where I almost always need two crutches to move around.  Fatigue levels have also not improved.  Climbing a flight of stairs leaves me as tired as scaling a cliff did at one time.

I am not sure where we go from here.   There are simply not a lot of treatments for MS.  There are only 250-350 thousand people suffering from MS in the US.  By contrast almost 40% of people will have a cancer of some form during their lifetime.  Funding, and the options that this provides, reflect those numbers.

My next appointment with the neurology team at Charing Cross is next week.  I have a set of MRIs scheduled for the middle of July and then another meeting with the doctors.  Hopefully there will be some options.