I filled in a form yesterday for a research project on MS and by the time I got to the end I had to send them an email explaining several points. It had been set up as part of a 20 year project to monitor sufferers and how their needs are being met, plus how the condition changes over that length of time. Great you would think, but all it did was compound my opinion that not even the so called professionals actually know about or understand MS.
At first glance I saw check boxes and scroll selection option, great little typing, a good start. Name, address, age all as expected. The first real question rang small alarm bells. The year and month I had my first symptoms, good question but I don’t know, nor exactly does my Neurologist, they and I can guess that the year was 1981ish. MS diagnosis, again asking for the month, then the small alarm stepped up, they wanted to know the type of MS diagnosed, now I know that only 5% of MS sufferers have Progressive Relapsing MS but they didn’t list it at all. I almost actually gave up at that point but I decided that it might be wanted see how right or wrong their questionnaire was or wasn’t.
The next biggie was their questions about mobility, non of their questions had a check box if the question wasn’t applicable, they asked about 10, then asked if you were bed-bound at this point you didn’t have to answer the next selection, well I’m not bed-bound and I couldn’t answer. There were 2 very large sections about you physical abilities as I would have expected but with no way of knowing what was coming next there was a box asking me to list anything they hadn’t asked, so I filled it in and clicked next. Up came more mobility questions and then one of the things I had said was missing, well sort of, 2 questions on speech. The final section announced itself and it was about medication, this was the silliest bit of all, every drug that I had had since Diagnosis, the day, month and year I started it, the dosage, and the day, month and year I came off it, if I had. I don’t know who they thought would actually be able to fill this in and made me really, laugh as one of the things they had missed out totally was memory. There wasn’t one single question about memory, it is constantly seen by sufferers as next to mobility the biggest problem to the extent there has actually been a name applied of ‘MS Fog’.
Although this is all laughable it leaves me really worried about the future of not just MS health care but also health care in future. They answered my email this morning and if anything it has compounded my fears as they say:-
“The questions can leave a little to be desired but unfortunately we are not allowed to change them, as in order to be a validated research instrument they need to be asked in a consistent way across all studies.”
Sorry but is it me? How does asking questions that don’t fit to reality, not just mine, what is documented repeatedly on the problems of MS, going to help? All they needed to do was read the official UK and US literature on MS, to be able to put together the right questions. Surly asking the wrong question and receiving the wrong answers, is nothing more or less than a waste of time and in this cash strapped world, a waste of money.