"Chelsea & Westminster Endocrinology: lack of communication causing delays"
About: Chelsea & Westminster Hospital / Endocrinology Chelsea & Westminster Hospital Endocrinology SW10 9NH
Posted by Waarheid (as ),
As some one with multiple diseases and associated conditions, who goes from pillar to post at several different hospitals, I am in a very good position to judge performance and offer comparisons.
After the usual battle with a useless NHS GP who I feel had has mismanaged a chronic disease for years, I finally got to see a specialist at this hospital who is highly regarded by others in my position. It took me years of research to identify them, and then years to fight for a referral.
In my experience, it is very difficult to see a named specialist anywhere - the system doesn't seem to understand that we want to see specialists we have checked out, not the ones who are less good as many of us have been misdiagnosed and mismanaged for years.
Anyhow, I was impressed with this specialist and they have finally recommended a course of action I support. They said I needed a DEXA bone scan, which I have also been fighting for. I was posted a form which looks like some sort of order form for the scan, but NO instructions on how to action the scan; not even a phone number. It's not clear whether the scan has been ordered and some one will write, or whether I need to do something.
The specialist has now written twice with references to me following up the scan. As I'm not psychic and still no instructions have been provided, I cannot do anything.
Months are ticking by, just wasted, while nothing happens. It is so frustrating - why not tell patients what to do with the form? There is absolutely NO information on it: do you want me to ring some one? do you want me to write some one? do you want me to take the form somewhere? It's a mystery -
I wrote to PALS weeks ago and asked for clarification on actioning the scan, but got no reply.
This will have a knock on effect because the scan now wont be done by the next time I see them, so things cannot be progressed.
And it all started so well.......