I know many have recently lost a loved one to PSP or CBD, so I apologise for any possible insensitivity on my part as I discuss this subject.
Raising awarenss of PSP/CBD is important and this should apply to accurate information on death certificates. The site CurePSP has surveyed this area, along with a couple of research papers.
I was wondering if those on this forum could indiacte whether PSP or CBD were mentioned on their (clinically diagnosed) loved one's death certificate, either as a direct cause or as a complicating cause (e.g. aspiration pneumonia). Where a comorbidity was the cause was PSP mentioned anyway?
Out of interest, a survey from England and Wales 1993-2000 (plus subsequent review) found that the numbers describing "Progressive Supranuclear Palsy" on certificates were affected by 1. A different name, "Progressive Supranuclear Opthalmoplegia" or "Steele-Richardson-Olszweski syndrome". 2. A wrong code, that caused PSP to be named under "Motor Neurone Disease" ( so when numbers were corrected from 2002-2008, they rose for PSP from 57 to 1435).
How involved were forum members with the registering doctors with respect to having Progressive Supranuclear Palsy written on the death certificate?
Again, sorry if this is still "a raw" subject for many.