Body Bags and Nice Guidelines
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As I look around the HCV world which I no longer inhabit but visit from time to time I see some more casualties coming in.
People I have known on the journey and who are non responders like me and facing an uncertain future as their next course of action (or treatment).
A young woman has just recently had to give up at 6 months and is facing the devastating shock that this news brings.
I was intrigued to see that she has been offered maintenance therapy which is not included at all in the National Institute for Clinical Excellence (NICE) guidelines and officially is not available in this country.
Intrigued but not surprised because earlier in the day I had listened to a report on Radio 4 “You and Yours” about this very NOT very NICE business.
The program was showing how women who were waiting for IVF treatment were being treated differently across the country – some were not being offered treatment at a ll.
All this contrary to NICE guidelines.
The ministry for health pointed out what everyone knew anyway and were secretly practicing but were not owning up to.
Here is the ministry of health quote:
“NICE guidelines are only that, guidelines. The ministry of health has no authority to enforce them. All decisions regarding policy are made up by the Primary Care Trust of which there are about 302 in this country”.
So, the guidelines which are quoted when doctors and Primary Care Trusts do not want to do something are ignored when they do want to take a course of action.
In fact, the guidelines were made up and published just to fulfil a much needed role – that of keeping an army of civil servant employed making up meaningless rules that no one is going to follow and that no one can enforce anyway.
Isn`t that right.?
“Yes, Minister”.
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As I look around the HCV world which I no longer inhabit but visit from time to time I see some more casualties coming in.
People I have known on the journey and who are non responders like me and facing an uncertain future as their next course of action (or treatment).
A young woman has just recently had to give up at 6 months and is facing the devastating shock that this news brings.
I was intrigued to see that she has been offered maintenance therapy which is not included at all in the National Institute for Clinical Excellence (NICE) guidelines and officially is not available in this country.
Intrigued but not surprised because earlier in the day I had listened to a report on Radio 4 “You and Yours” about this very NOT very NICE business.
The program was showing how women who were waiting for IVF treatment were being treated differently across the country – some were not being offered treatment at a ll.
All this contrary to NICE guidelines.
The ministry for health pointed out what everyone knew anyway and were secretly practicing but were not owning up to.
Here is the ministry of health quote:
“NICE guidelines are only that, guidelines. The ministry of health has no authority to enforce them. All decisions regarding policy are made up by the Primary Care Trust of which there are about 302 in this country”.
So, the guidelines which are quoted when doctors and Primary Care Trusts do not want to do something are ignored when they do want to take a course of action.
In fact, the guidelines were made up and published just to fulfil a much needed role – that of keeping an army of civil servant employed making up meaningless rules that no one is going to follow and that no one can enforce anyway.
Isn`t that right.?
“Yes, Minister”.
*********************************************************************
posted by Paul | 10:03 AM
3 Comments:
Hi Paul,
Who makes up these lies you outline in your blog post, Changes, and this one on NICE. Is there a special feel good dept at the Dept of Health or the drug company or both which hypnotises HCV patients at their first appointment and from there they go on to spread this false message in the community among their families and friends and in forums and other channels. Having followed some posts around the circuit it is also possible to see the effects of people being subjected to peer pressure to support the feel good message when even the hypnosis has failed and they briefly experience the truth of bad effects and serious difficulties. I know exactly what you mean about being in awe at the all,powerful extent of the Tx being a breeze type of message. My own experience is one of huge doubt that it is even partially understood what treatment does. As you skillfully explained it can wreck families wreck careers, wreck lives and still the support for those experiencing difficulty is not forthcoming from their peers far less from the medical profession (with notable xceptions as you say)
Needless to say I would not want to do it again as the message is flawed from the standpoint of treatment success and from the standpoint of the support which is said to be available but in REALITY is not anywhere close. Until the truth is out and these things are addressed the patient is in a number of cases being deluded and dangerously so because they are not prepared to deal with a bad outcome of side effects and a poor tx result and its ensuing "hangover with physical and mental effects of a profound nature.
Thanks for highlighting this gap that exists.
John.
John, Thanks for your comments which are made all the more powerful because you have just completed a successful treatment and are now clear of the virus.
This was our sole goal at one time and once achieved our world was supposed to become a better place for us.
I came across this penetrating comment by Minerva:
“I remember reading somewhere that it can take months to recover from a bout of flu…by those terms, how long does it take to recover from 48 weeks?…”
I know I wake up with the joint aches and pains which disappear once I have had my pethidine. I was on the phone to someone the other day who said I would not be the first person they knew who had become drug dependant after doing 48 weeks of TX.
Hepc Boy,
I agree with what you say about Nice guidelines and the legally binding nature of them. However, what is the purpose of law if there is no enforcement to back it up.
Here is the ministry of health quote:
“NICE guidelines are only that, guidelines. The ministry of health has no authority to enforce them. All decisions regarding policy are made up by the Primary Care Trust of which there are about 302 in this country”.
Thanks Guys,
Paul.
spot on specialy about the civil service
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