In my position, at work, I am on the telephone constantly, taking calls from the public. Today I took a call from a lady who advised me she has MS. I have to take personal details so ‘as a person with MS’, when she mentioned that I delved a little deeper for full details and was shocked to hear that she was deteriorating but not on DMDs. I enquired further into her symptoms, how it affected her and if she was on DMDs. I was stunned to hear that she is deteriorating with her symptoms, being diagnosed 17 ago, but was just taking meds to manage symptoms. Being the helpful person I am, I advised her of the new’NICE’ guidelines and suggested she contact her MS nurse & neurologist to discuss it further asap. She thanked me and said I should work with the NHS to make sure people slipping through loopholes in the system and being missed and just plodding along not knowing what was now available given the new meds becoming available. I have strong feelings re this as I was diagnosed 10 yrs ago and I’ve been lucky with milder symptoms, until this year, but felt I had to push to get myself on DMDs. My appointments were never very regular but it didn’t matter then - I had slow progression and I didn’t fit the criteria. How many people are there not having regular checkups because they dont or didn’t tick all the boxes before?
Things change daily. Big pharmaceutical companies make money from being on the cutting edge.
If you exclude yourself from learning which innovations out there could reasonably benefit you, then i see only one eventuality.
With a slow burn disease like MS, self neglect and apathy are clearly unfortunate attitudes. This is not to say blame is to be apportioned, but rather, one owes it to oneself to remain informed of all things related to MS. It just makes sense.
Exactly Paolo, but there are people out there who are not capable/self morivated due to mental health issues which is why it’s important that nobody misses the boat! There needs to be a system in place. It was bloody hard work to get my & appointment with my Neuro to start my dmd jodmdurney and that was after a relapse & IV steroids and being in the right frame of mind to push. Others arent so lucky
My uncle has a serious heart condition, he refuses to read up and research or have any interest in his illness. He just doesn’t want to know.
The problem is that doctors only know so much, some more than others. As someone mentioned before on another website it’s important (if we are able) to not just be a passenger in our health journey.
If I could have my time again I would study health (not to be a doctor though) and work for the NHS.
I was discussing this just the other day with someone I know who has MS and isn’t on a DMT because they were diagnosed a few years ago and didn’t meet the criteria at the time. I’m hoping they will now push to get on a DMT as I told them about the new NICE guidelines.
My ms nurse called today and we touched this subject and she mentioned the team might be looming to employ someone in the near future to sort out some of the admin. I think I’ll keep my eyes peeled incase that job pops up soon!
i agree with you that there should be a safety net available to catch those incapable or simply disinclined to act in their own best interests.
i think that person in theory, is called the MS nurse. after all, they are supposed to periodically ‘check in’ with you (unlike a GP) are more appraised of your daily circumstances (unlike a neurologist) and are aware of your DMD use and interactions (all of this is at least the case with ‘MS nurses’ over here in Canada).
however, even with these specialists, they too learn most of what they know from text books and boiler plate seminars… sadly, you cannot please (safeguard) all of the people all of the time.
but hopefully we will continue to progress in our therapies and techniques and soon, boiler plate solutions will be a ‘one size fits all’.