UK GP Patient Survey - The Death Grip of Stalinism.

[Guest guest]

To UK NHS users of whom I am sure there are many on this list.

There are some quite ill people on this group, and my concern is that they are

getting the timely and appropriate treatment they need. My feeling is that many

UK PC pts are dying of ignorance of the drugs that could be made available to

them and I believe we need to do something about this. We can do something about

it - we need to engage with doctors, PCT and with the political parties who

promise to change things next time round. Please read on.

The death grip of Stalinism in the UK NHS chokes the life out of PC patients who

need up-front treatment with drugs like Zometa and Metastron, but which they do

not get. Instead they get hemibody radiation for advanced bone mets when they

are nearly terminal. The external radiation has significant toxicity, which

needs its own medication to control [daft or what?]. Systemic Zometa and

Metastron on the other hand are routinely prescribed in the USA according to my

PubMed information. Used sensibly, these drugs have no short term toxicity. [

Caveat: Used too 'routinely' in some instances as we see in cases of 'fossy jaw'

coming to light with excess Rx of bisphosphonates -- but that is an exception. ]

OK. Correct me if I am wrong - anyone on this forum in the UK tried Zometa or

Metastron under the NHS ? Ans here ___________________

Despite reports on use of Zometa and Metastron in the USA being ongoing, the

research in the UK on these drugs dried up over ten years ago. Probably when it

was decided they were a little too expensive for the NHS to support. [ This was

an incorrect perception at the time, but it stuck]. Decisions made locally based

on these early 1990's studies and the perceptions they engendered still hold

sway where local decision making medical panels determine what drugs we patients

can and cannot avail ourselves of in the NHS.

It is time we engaged with doctors, consultants and local decision making bodies

to get these life saving drugs into use. They are not expensive. They are just

not widely used due to ignorance.

Across the English speaking western world we are in a way fortunate to see

different medical systems under different social, political and economic

philosophies being played out. The brave attempt by Pres. Obama to inject a

modicum of humanity into a powerful capitalist pharmaceutical driven for-profit

medical system is to be applauded. Hopefully those 30+ million Americans who

hitherto have no net to fall into when they get sick will soon have something

more than palliative words.

The GP Patient Survey recently came through my door. Looks to me like another

attempt by this administration to micro-manage the lowest level of health access

and create a spin over issues that distracts from our real needs. My GP service

is basically OK. What is woefully inadequate is the fact that when I see my GP

about treatment options for my PC, he has to refer me to a consultant urologist

or oncologist. I cannot refer myself and receive NHS treatment. Now, all

consultants have been told to make economies since the NHS was established back

in the 1940's. In 2010 I ask my consultant for Zometa or Metastron he is just as

likely to say he hasn't even heard of these drugs as he is to just say NO.

Either way we PC pts do not get medication in a timely and appropriate way.

Folks,we do need to engage with the medical profession and with local health

care providers regarding our needs. Why not look in to how you interact with

your local Primary Care Trust / PCT ? You will be amazed at the bureaucratic

gobbledegook, smokescreens and gagging.

That is why I have called it the death grip of Stalinism.

Sammy.

PS. Before anyone jumps on me for a typo or spelling mistake, please allow me to

apologise now. That shouldn't stop you for asking clarification if you do find

something difficult.