Magic Wand Time - help please
Hello fellow Shifters,
I shan't bore you with details. I was at a meeting recently about the variance in provision of MS services in the UK.
If you had to choose one thing - just one - to improve, what would it be?
When I was diagnosed in 1994 at 25y old I was just cut loose with nothing at all. So I did what any self-respecting person does and just ignored it and hoped it would go away.
A few examples to kick off:
Communications with your nurse?
Time between diagnosis and treatment?
Better leadership on drug choice?
Local patient networks?
A single point of contact to steer you through this new reality?
And so on. It doesn't have to be any of the above. I am interested in what patients (us) want.
Thanks in advance for taking the time to think about it and share your ideas.
@dominics For me it's definitely time between diagnosis and treatment. I had my CIS (Optic Neuritis) in 1997 at 30 years old. Diagnosis was in 2001. I then had no treatment until about 2007. Years wasted. : ( Suze
@petlamb - so what part of the system, or lack thereof, do you feel made or contributed to that?