CONCLUSION TO THE VIRAS STAKEHOLDER COMMENTS
In view of the extraordinary number of opportunities that these NICE (National Institute for Health and Care Exellence) guidelines provide for putting doctors and patients at serious risk, it is essential for all interested parties to be aware that NICE take no responsibility for any misleading information or dangerous advice included in their guidelines. Here is a typical NICE Guidance disclaimer:
“Health care providers need to use clinical judgement, knowledge and expertise when deciding whether it is appropriate to apply guidances. The recommendations cited here are a guide and may not be appropriate for use in all situations. The decision to adopt any of the recommendations cited here must be made by the practitioners in light of individual patient circumstances, the wishes of the patient, clinical expertise and resources. The National Clinical Guideline Centre disclaims any responsibility for damages arising out of the use or non-use of this guidance and the literature used in support of this guidance.” (https://www.nice.org.uk/guidance/cg138/evidence/full-guideline-pdf-185142637)
Whilst NICE have discarded a wealth of research and evidence as unsuitable in preparing their guidance, that same evidence may nevertheless stand-up in court.
Examples of foreseeable harms to patients are: if and when the restrictive treatment recommendations fail to eradicate a Lyme infection and a patient suffers injury as a result, or, if and when laboratory testing deprives a patient of a necessary diagnosis and treatment, and they suffer injury as a result.
Then the evidence that has been ignored may receive a fair hearing in legal proceedings, especially as much of this information comes from very experienced scientists and physicians. Harms to patients and complaints against doctors are not just predictable, they are inevitable if doctors with Lyme disease patients follow the advice as presented in the draft form. However, none of this is any consolation to doctors who do not want to spend their time dealing with GMC complaints and law suits, but who simply want to help their patients based on a balanced presentation of the available pool of knowledge.
VIRAS and others have provided ample evidence of foreseeable harms resulting from misleading advice about Lyme disease. NICE may wash their hands of any responsibility by claiming that individual doctors are responsible for their clinical decisions, but they can and will be held to account for negligently misleading the public and government agencies, discriminating against sick and disabled patients, and permitting their procedures to be exploited by groups and individuals with competing interests.
Doctors do not have to follow NICE guidelines but they must be able to justify their clinical decisions. The USA Centers for Disease Control and Prevention (CDC) now estimate that they have over 300,000 cases of Lyme disease per year. Some of the most experienced and knowledgeable Lyme disease doctors and scientists in the USA have produced reliable and trustworthy advice on the management of diverse aspects of Lyme disease. For doctors who want a thorough understanding of Lyme disease medicine, including the limitations of current 18 knowledge, VIRAS recommends the authoritative resources listed here:
http://www.ilads.org/Lyme/treatment-guideline.php
VIRAS reject the NICE draft guideline as unfit for purpose. It contains some downright dangerous advice and too many contradictions to even form the basis of a semi-reasonable guideline. It is biased, discriminatory and appears to be designed to serve undeclared agendas. It implies certainty where there is none. Where it admits uncertainty it omits to provide balanced views to allow doctor’s and patients to make informed choices and give informed consent as is required in the practice of medicine in the UK. This makes the draft unethical. It evades awkward and potentially embarrassing issues such as the inaccuracy of testing provided by the NHS, which it misrepresents with false assurances. It evades the serious medical issues of chronic Lyme disease, coinfections, misdiagnosis of Lyme as some other condition, and inadequate treatment. The guideline is not quantitative or qualitative or a rational amalgam of both. It is bereft of scientific discipline or basic humanistic and medical values.
NICE should have halted the process and rejected the task of producing a guideline when it became apparent that the vast majority of research did not meet the threshold for inclusion. Instead, it has produced a draft based on just a tiny and biased proportion of decades of research. The draft guideline is irrelevant to 99% of UK Lyme patients who would be harmed by its publication. The number and nature of the Research Recommendations clearly shows that not enough is known to produce a guideline that could remotely approach the required standards for NICE Guidance. These Research Recommendations relate to absolutely basic medical science concerned with the diagnosis, treatment and management of Lyme disease. Without good data to work with, or a balanced presentation of all the evidence available, the end product could only ever be a self-contradictory and impractical mess.
Thousands of UK Lyme disease patients have been obliged to take matters into their own hands due to the ignorance and incompetence of Public Health England. PHE (incorporating the HPA) have actively obstructed the diagnosis and treatment of Lyme disease patients for decades. The victims of this discrimination have been forced to either accept terrible illness which for many, represents a life-sentence of loss and suffering, or to seek medical help elsewhere. Patients spend their often meagre income and all their savings to get accurate tests and treatment that have been denied to them by the NHS.
The outcome of the treatment that they are forced to pay for, may not always be the cure that they sought. This is partly due to the incompetence that has delayed their diagnosis and treatment for months, years or even decades. Yet for many, their treatment brings great relief. Some of the appalling chronic symptoms improve or resolve completely. Physical and mental functioning which could have been reduced to just a tiny percentage of their pre-Lyme infection levels, are substantially improved and can be maintained with treatment. These patients KNOW what PHE policies have done to them and are doing to others. They will recognise the PHE official position on Lyme disease permeating the NICE draft guideline. They are not paranoid or conspiracy-theorists, they know from their own lived experience that Lyme disease is a national health threat that is being controlled by vested interests that disregard their Human Rights and the fundamental tenets for the practice of medicine. It is in spite of PHE that many of these patients have improved health, and such is the suffering that many have endured, they do not want others to have a similar experience. With the finest motives that grace humanity, even though their health and fitness may still be just a sad remnant of the energy they once enjoyed, they give of that time and energy to help others who will otherwise be doomed by PHE to the living hell of chronic Lyme disease.
The draft guideline shames UK medicine and will bring the good names of the NHS and NICE into disrepute. The danger to patients is obvious. This confused and confusing guide will predictably harm patients and threaten the reputation and values of doctors who place their trust in it.
The above is the Conclusion, the Summary can be read in full from the VIRAS ( Vector-borne Infection - Research, Analysis, Strategy) website.
Summary of VIRAS response to NICE Draft Guideline for Lyme Borreliosis available
http://counsellingme.com/VIRAS/VIRAS.html
the Draft Nice Guidelines for Lyme Disease.
https://www.nice.org.uk/guidance/indevelopment/gid-ng10007/consultation/html-content-2
In view of the extraordinary number of opportunities that these NICE (National Institute for Health and Care Exellence) guidelines provide for putting doctors and patients at serious risk, it is essential for all interested parties to be aware that NICE take no responsibility for any misleading information or dangerous advice included in their guidelines. Here is a typical NICE Guidance disclaimer:
“Health care providers need to use clinical judgement, knowledge and expertise when deciding whether it is appropriate to apply guidances. The recommendations cited here are a guide and may not be appropriate for use in all situations. The decision to adopt any of the recommendations cited here must be made by the practitioners in light of individual patient circumstances, the wishes of the patient, clinical expertise and resources. The National Clinical Guideline Centre disclaims any responsibility for damages arising out of the use or non-use of this guidance and the literature used in support of this guidance.” (https://www.nice.org.uk/guidance/cg138/evidence/full-guideline-pdf-185142637)
Whilst NICE have discarded a wealth of research and evidence as unsuitable in preparing their guidance, that same evidence may nevertheless stand-up in court.
Examples of foreseeable harms to patients are: if and when the restrictive treatment recommendations fail to eradicate a Lyme infection and a patient suffers injury as a result, or, if and when laboratory testing deprives a patient of a necessary diagnosis and treatment, and they suffer injury as a result.
Then the evidence that has been ignored may receive a fair hearing in legal proceedings, especially as much of this information comes from very experienced scientists and physicians. Harms to patients and complaints against doctors are not just predictable, they are inevitable if doctors with Lyme disease patients follow the advice as presented in the draft form. However, none of this is any consolation to doctors who do not want to spend their time dealing with GMC complaints and law suits, but who simply want to help their patients based on a balanced presentation of the available pool of knowledge.
VIRAS and others have provided ample evidence of foreseeable harms resulting from misleading advice about Lyme disease. NICE may wash their hands of any responsibility by claiming that individual doctors are responsible for their clinical decisions, but they can and will be held to account for negligently misleading the public and government agencies, discriminating against sick and disabled patients, and permitting their procedures to be exploited by groups and individuals with competing interests.
Doctors do not have to follow NICE guidelines but they must be able to justify their clinical decisions. The USA Centers for Disease Control and Prevention (CDC) now estimate that they have over 300,000 cases of Lyme disease per year. Some of the most experienced and knowledgeable Lyme disease doctors and scientists in the USA have produced reliable and trustworthy advice on the management of diverse aspects of Lyme disease. For doctors who want a thorough understanding of Lyme disease medicine, including the limitations of current 18 knowledge, VIRAS recommends the authoritative resources listed here:
http://www.ilads.org/Lyme/treatment-guideline.php
VIRAS reject the NICE draft guideline as unfit for purpose. It contains some downright dangerous advice and too many contradictions to even form the basis of a semi-reasonable guideline. It is biased, discriminatory and appears to be designed to serve undeclared agendas. It implies certainty where there is none. Where it admits uncertainty it omits to provide balanced views to allow doctor’s and patients to make informed choices and give informed consent as is required in the practice of medicine in the UK. This makes the draft unethical. It evades awkward and potentially embarrassing issues such as the inaccuracy of testing provided by the NHS, which it misrepresents with false assurances. It evades the serious medical issues of chronic Lyme disease, coinfections, misdiagnosis of Lyme as some other condition, and inadequate treatment. The guideline is not quantitative or qualitative or a rational amalgam of both. It is bereft of scientific discipline or basic humanistic and medical values.
NICE should have halted the process and rejected the task of producing a guideline when it became apparent that the vast majority of research did not meet the threshold for inclusion. Instead, it has produced a draft based on just a tiny and biased proportion of decades of research. The draft guideline is irrelevant to 99% of UK Lyme patients who would be harmed by its publication. The number and nature of the Research Recommendations clearly shows that not enough is known to produce a guideline that could remotely approach the required standards for NICE Guidance. These Research Recommendations relate to absolutely basic medical science concerned with the diagnosis, treatment and management of Lyme disease. Without good data to work with, or a balanced presentation of all the evidence available, the end product could only ever be a self-contradictory and impractical mess.
Thousands of UK Lyme disease patients have been obliged to take matters into their own hands due to the ignorance and incompetence of Public Health England. PHE (incorporating the HPA) have actively obstructed the diagnosis and treatment of Lyme disease patients for decades. The victims of this discrimination have been forced to either accept terrible illness which for many, represents a life-sentence of loss and suffering, or to seek medical help elsewhere. Patients spend their often meagre income and all their savings to get accurate tests and treatment that have been denied to them by the NHS.
The outcome of the treatment that they are forced to pay for, may not always be the cure that they sought. This is partly due to the incompetence that has delayed their diagnosis and treatment for months, years or even decades. Yet for many, their treatment brings great relief. Some of the appalling chronic symptoms improve or resolve completely. Physical and mental functioning which could have been reduced to just a tiny percentage of their pre-Lyme infection levels, are substantially improved and can be maintained with treatment. These patients KNOW what PHE policies have done to them and are doing to others. They will recognise the PHE official position on Lyme disease permeating the NICE draft guideline. They are not paranoid or conspiracy-theorists, they know from their own lived experience that Lyme disease is a national health threat that is being controlled by vested interests that disregard their Human Rights and the fundamental tenets for the practice of medicine. It is in spite of PHE that many of these patients have improved health, and such is the suffering that many have endured, they do not want others to have a similar experience. With the finest motives that grace humanity, even though their health and fitness may still be just a sad remnant of the energy they once enjoyed, they give of that time and energy to help others who will otherwise be doomed by PHE to the living hell of chronic Lyme disease.
The draft guideline shames UK medicine and will bring the good names of the NHS and NICE into disrepute. The danger to patients is obvious. This confused and confusing guide will predictably harm patients and threaten the reputation and values of doctors who place their trust in it.
The above is the Conclusion, the Summary can be read in full from the VIRAS ( Vector-borne Infection - Research, Analysis, Strategy) website.
Summary of VIRAS response to NICE Draft Guideline for Lyme Borreliosis available
http://counsellingme.com/VIRAS/VIRAS.html
the Draft Nice Guidelines for Lyme Disease.
https://www.nice.org.uk/guidance/indevelopment/gid-ng10007/consultation/html-content-2
No further forward after 30yrs of campaigning- HOW MANY DEATHS AND SUFFERING PATIENTS! WILL THEY NEVER LEARN?
ReplyDeleteThis is 100% accurate. What it does not take into account is the mental health damage. Having years of battling the system with another NICE inaccurate profile on M.E, which has caused constant battles with benefits, appeals, dwp back to work or be sanctioned plans, i am now seriously suicidal at the thought that after being diagnosed with the Lymes i already knew i had, now being ignored and i am now wondering if i can muster any more energy to be treated like i am a hypochondriac with another condition. For all the people losing their homes, bankrupt, wondering if that chest pain which is being ignored, getting into debt to pay for the holistic therapy the NHS has now removed for many other chronic and long term conditions or the myriad of daily problems, the fight is relentless! I annoy the medical profession for being aware of my own conditions and pro-active, and then receive the backlash. It is my only control, but the fight is now becoming futile and depression is now a daily fight too. I have been subjected, as with many others to the complete opposite to "to do no harm", and no amount of doctors and health professionals workloads etc, should ever result in this kind of mindset.
ReplyDeleteSharon take heart from the many who are strong enough to advocate for others who do not have that strength. Science is emerging and things will change especially once some of the new tests in the pipeline are available to show the reality of this persistent disease.
ReplyDeleteStay strong and get what help you can from NHS but ignore their ineptitude when it comes to treating or even understanding chronic Lyme.