Cystitis

Challenging the current UTI Testing methods - Parliamentary debate

25 October, 2016

In July this year Catherine West MP (Hornsey & Wood Green) organised a presentation by Professor Malone-Lee at Portcullis House regarding the diagnosis of Urinary Tract Infections. Professor Malone-Lee heads the Lower Urinary Tract Symptoms Clinic at the Whittington Hospital in North London.  He spoke on the problems surrounding the standard diagnosis of chronic urinary tract infections with particular emphasis on the failures of the standard urine testing (please see below the short briefing notes given to MPs at the presentation).

 At the presentation it was agreed that the issue required further examination and that Catherine West would apply for an Adjournment Debate.   She has now been given the following date: 

FRIDAY, 28TH OCTOBER

 

Urinary Tract Infection is one of the most common bacterial infections with over 150 million people worldwide affected by a UTI each year. This predominantly affects women, but children and men also suffer. 33% of women will get a urinary tract infection before they are 24, with 1 in 10 girls and 1 in 30 boys having a UTI by the age of 16.  Of these 20% to 30% of patients prescribed antibiotics will fail treatment, and a sizeable number will go on to have recurrent infections throughout their life. 

 However, the failures in the standard test mean that there are thousands of people in the UK who are told by their doctors that they are not ill because tests do not indicate disease. It is estimated by the Cystitis and Overactive Bladder Foundation that the condition affects around 400,000 people in the UK, who will continue to suffer unless the health service revises the current methods of testing and treatment, which are wholly inadequate for this condition.

 There are well researched reasons why these methods fail, and the forthcoming debate will be an opportunity to discuss this.

 The debate will focus mainly on the shortcomings of the standard urinary tests; the inadequacy of the basic tools to inform doctors; and the potential ramifications of misdiagnosis for thousands of sufferers.

 

The betrayal of the cystitis sufferer

 

Urinary tract infection (cystitis/UTI) affects 150 million people worldwide each year: 33% of women are expected to suffer before they are 24.

 Women presenting with symptoms of UTI in primary care will be managed according to a guideline, there are several of these; they are contradictory and most ignore the published science.

 The assumption that a UTI will always cause pain is wrong. In fact, pain may be a late manifestation.

 The advice to increase fluid intake is not based on evidence. The practice dilutes the urine of natural immune chemicals and antibiotics, if prescribed. The dilution of pathological markers in the urine may falsely imply recovery.

 Cranberry juice is not effective.

 Many practices will test the urine with dipsticks and, if these prove negative, the patient is informed that there is no infection. This is incorrect advice and confuses ‘no evidence of disease’ with ‘evidence of no disease’. The dipstick test will miss well over 50% of all infections.

 If a urine sample is sent to the laboratory for culture, and this is reported as negative, it is probable that this will be assumed to refute the diagnosis of UTI. This is also wrong; the standard MSU culture will also miss well over 50% of all infections, so that a negative test is not evidence of no disease.

 If the patient is fortunate enough to be diagnosed with a UTI it is possible that she may be prescribed antibiotics, typically for three days. This may not work: 20% to 30% of patients will fail recommended treatment whether prescribed for three days or 14 days. If she complains that she has not recovered she is likely to be dismissed.  She will have been advised to drink plenty, her urine, suitably diluted, will be devoid of pathological signals. Thus it is assumed that she must be better – The test says so.

 

These facts have been available in the scientific literature for a large number of years. The standard guidelines seem to ignore this evidence placing people at risk of being denied appropriate treatment. We do not know the consequences of untreated UTI persisting over months or years, but it may reap harm. The current anxieties about antibiotic resistance make it harder to bring sober reflection to this problem.

 

This may be an orphan subject but a cause of immense suffering for many people.

 

James Malone-Lee MD FRCP

Professor of Medicine, Whittington Campus, UCL Medical School

 6th July 2016

 

Template 1.   LETTER TO BE SENT TO YOUR MP IF YOU ARE A PATIENT OF PROFESSOR MALONE-LEE AND HAVE ALREADY BEEN IN TOUCH WITH YOUR MP.

 

PLEASE CAN YOU SEND THIS LETTER TO YOUR OWN MP WITHOUT DELAY VIA EMAIL OR POST. 

 

 

Dear (your MP),

 

As you know I have written to you before explaining my chronic bladder condition and the devastating impact this has had on my life.  In my correspondence I also told you how my treatment at the Professor’s clinic has hugely lessened my suffering and thus my quality of life. In time I hope to be cured.

 

You may remember that in July this year Catherine West MP, (Hornsey & Wood Green) invited you to a presentation by Professor Malone-Lee at Portcullis House.  Professor Malone-Lee heads the Lower Urinary Tract Symptoms Clinic at the Whittington Hospital.  He spoke on the problems surrounding the standard diagnosis of chronic urinary tract infections with particular emphasis on the failures of the standard urine testing (please see below the briefing notes on given to MPs at the presentation).

 

At the presentation it was agreed that the issue merited further examination and that Catherine West would apply for an Adjournment Debate.   She has now been given the following date: 

 

FRIDAY 28TH OCTOBER

 

 

Urinary Tract Infection is one of the most common bacterial infections with over 150 million people worldwide affected by a UTI each year. This predominantly affects women, but children and men also suffer, 33% of women will get a urinary tract infection before they are 24, with 1 in 10 girls and 1 in 30 boys having a UTI by the age of 16.   Of these 20% to 30% of patients prescribed antibiotics will fail treatment, and a sizeable number will go on to have repeated, recurrent infections throughout their life. 

 

However, the failures in the standard test mean that there are many thousands of people in the UK who are told by their doctors that they are not ill because tests do not indicate disease. It is estimated by the Cystitis and Overactive Bladder Foundation that the condition affects around 400,000 people in the UK. These people will continue to suffer unless the health service revises the current methods of testing and treatment, which are wholly inadequate for this condition.

 

There are well researched reasons why standard treatments fail and the forthcoming debate will be an opportunity to discuss these failings. 

 

The debate will focus mainly on the shortcomings of the standard urinary tests; the inadequacy of the basic tools to inform doctors; and the potential ramifications of misdiagnosis for thousands of sufferers.

  

I would therefore urge you to make time to attend this important debate.

 

Yours sincerely

 

 

 

The betrayal of the cystitis sufferer

 

Urinary tract infection (cystitis/UTI) affects 150 million people worldwide each year: 33% of women are expected to suffer before they are 24.

 

Women presenting with symptoms of UTI in primary care will be managed according to a guideline, there are several of these; they are contradictory and most ignore the published science.

 

The assumption that UTI will always cause pain is wrong; in fact pain may be a late manifestation

 

The advice to increase fluid intake is not based on evidence. The practice dilutes the urine of natural immune chemicals and antibiotics, if prescribed. The dilution of pathological markers in the urine may falsely imply recovery.

 

Cranberry juice is not effective

 

Many practices will test the urine with dipsticks and, if these prove negative, the patient is informed that there is no infection. This is incorrect advice and confuses ‘no evidence of disease’ with ‘evidence of no disease’. The dipstick test will miss well over 50% of all infections.

 

If a urine sample is sent to the laboratory for culture, and this is reported as negative, it is probable that this will be assumed to refute the diagnosis of UTI. This is also wrong; the standard MSU culture will also miss well over 50% of all infections, so that a negative test is not evidence of no disease.

 

If the patient is fortunate enough to be diagnosed with a UTI it is possible that she may be prescribed antibiotics, typically for three days. This may not work: 20% to 30% of patients will fail recommended treatment whether prescribed for three days or 14 days. If she complains that she has not recovered is likely to be dismissed: She will have been advised to drink plenty, her urine, suitably diluted, will be devoid of pathological signals. Thus it is assumed that she must be better – The test says so.

 

These facts have been available in the scientific literature for a large number of years. The standard guidelines seem to ignore this evidence placing people at risk of being denied appropriate treatment. We do not know the consequences of untreated UTI persisting over months or years, but it may reap harm. The current anxieties about antibiotic resistance make it harder to bring sober reflection to this problem.

 

This may be an orphan subject but a cause of immense suffering for many people.

 

James Malone-Lee MD FRCP

Professor of Medicine, Whittington Campus, UCL Medical School

6th July 2016

 

Template 2   LETTER TO BE SENT TO YOUR MP IF YOU ARE A PATIENT OF DR ANDERSON AND HAVE ALREADY BEEN IN TOUCH WITH YOUR MP.

 

PLEASE CAN YOU SEND THIS LETTER TO Y OUR OWN MP WITHOUT DELAY VIA EMAIL OR POST. 

 

Dear (your MP)

 

As you know I have written to you before explaining my chronic bladder condition and the devastating impact this has had on my life.  In my correspondence I also told you how my treatment with Dr Anderson has hugely lessened my suffering and thus my quality of life. In time I hope to be cured.

 

You may remember that in July this year Catherine West MP, (Hornsey & Wood Green) invited you to a presentation by Professor Malone-Lee at Portcullis House.  The Professor heads the Lower Urinary Tract Symptoms Clinic at the Whittington Hospital.  He spoke on the problems surrounding the standard diagnosis of chronic urinary tract infections with particular emphasis on the failures of the standard urine testing (please see below the briefing notes given to MPs at the presentation).

 

At the presentation it was agreed that the issue merited further examination and that Catherine West would apply for an Adjournment Debate.   She has now been given the following date: 

 

FRIDAY 28TH OCTOBER

 

Urinary Tract Infection is one of the most common bacterial infections with over 150 million people worldwide affected by a UTI each year. This predominantly affects women, but children and men also suffer, 33% of women will get a urinary tract infection before they are 24, with 1 in 10 girls and 1 in 30 boys having a UTI by the age of 16.   Of these 20% to 30% of patients prescribed antibiotics will fail treatment, and a sizeable number will go on to have repeated, recurrent infections throughout their life. 

 

However, the failures in the standard test mean that there are many thousands of people in the UK who are told by their doctors that they are not ill because tests do not indicate disease. It is estimated by the Cystitis and Overactive Bladder Foundation that the condition affects around 400,000 people in the UK. These people will continue to suffer unless the health service revises the current methods of testing and treatment, which are wholly inadequate for this condition.

 

There are well researched reasons why standard treatments fail and the forthcoming debate will be an opportunity to discuss these failings. 

 

The debate will focus mainly on the shortcomings of the standard urinary tests; the inadequacy of the basic tools to inform doctors; and the potential ramifications of misdiagnosis for thousands of sufferers.

  

I would therefore urge you to make time to attend this important debate.

 

 

 

Yours sincerely

 

 

 

The betrayal of the cystitis sufferer

 

Urinary tract infection (cystitis/UTI) affects 150 million people worldwide each year: 33% of women are expected to suffer before they are 24.

 

Women presenting with symptoms of UTI in primary care will be managed according to a guideline, there are several of these; they are contradictory and most ignore the published science.

 

The assumption that UTI will always cause pain is wrong; in fact pain may be a late manifestation

 

The advice to increase fluid intake is not based on evidence. The practice dilutes the urine of natural immune chemicals and antibiotics, if prescribed. The dilution of pathological markers in the urine may falsely imply recovery.

 

Cranberry juice is not effective

 

Many practices will test the urine with dipsticks and, if these prove negative, the patient is informed that there is no infection. This is incorrect advice and confuses ‘no evidence of disease’ with ‘evidence of no disease’. The dipstick test will miss well over 50% of all infections.

 

If a urine sample is sent to the laboratory for culture, and this is reported as negative, it is probable that this will be assumed to refute the diagnosis of UTI. This is also wrong; the standard MSU culture will also miss well over 50% of all infections, so that a negative test is not evidence of no disease.

 

If the patient is fortunate enough to be diagnosed with a UTI it is possible that she may be prescribed antibiotics, typically for three days. This may not work: 20% to 30% of patients will fail recommended treatment whether prescribed for three days or 14 days. If she complains that she has not recovered is likely to be dismissed: She will have been advised to drink plenty, her urine, suitably diluted, will be devoid of pathological signals. Thus it is assumed that she must be better – The test says so.

 

These facts have been available in the scientific literature for a large number of years. The standard guidelines seem to ignore this evidence placing people at risk of being denied appropriate treatment. We do not know the consequences of untreated UTI persisting over months or years, but it may reap harm. The current anxieties about antibiotic resistance make it harder to bring sober reflection to this problem.

 

This may be an orphan subject but a cause of immense suffering for many people.

 

James Malone-Lee MD FRCP

Professor of Medicine, Whittington Campus, UCL Medical School

6th July 2016

 

Template 3   LETTER TO YOUR MP IF YOU ARE NOT A PATIENT OF EITHER PROFESSOR MALONE-LEE OR DR ANDERSON.

 

PLEASE CAN YOU SEND THIS LETTER TO YOUR OWN MP WITHOUT DELAY VIA EMAIL OR POST. 

 

Dear (your MP)

 

In July this year Catherine West MP (Hornsey & Wood Green) organised a presentation by Professor Malone-Lee at Portcullis House regarding the diagnosis of Urinary Tract Infections. Professor Malone-Lee heads the Lower Urinary Tract Symptoms Clinic at the Whittington Hospital in North London.  He spoke on the problems surrounding the standard diagnosis of chronic urinary tract infections with particular emphasis on the failures of the standard urine testing (please see below the short briefing notes given to MPs at the presentation).

 

At the presentation it was agreed that the issue required further examination and that Catherine West would apply for an Adjournment Debate.   She has now been given the following date:

 

FRIDAY, 28TH OCTOBER

 

Urinary Tract Infection is one of the most common bacterial infections with over 150 million people worldwide affected by a UTI each year. This predominantly affects women, but children and men also suffer. 33% of women will get a urinary tract infection before they are 24, with 1 in 10 girls and 1 in 30 boys having a UTI by the age of 16.  Of these 20% to 30% of patients prescribed antibiotics will fail treatment, and a sizeable number will go on to have recurrent infections throughout their life. 

 

However, the failures in the standard test mean that there are thousands of people in the UK who are told by their doctors that they are not ill because tests do not indicate disease. It is estimated by the Cystitis and Overactive Bladder Foundation that the condition affects around 400,000 people in the UK, who will continue to suffer unless the health service revises the current methods of testing and treatment, which are wholly inadequate for this condition.

 

There are well researched reasons why these methods fail, and the forthcoming debate will be an opportunity to discuss this.

 

The debate will focus mainly on the shortcomings of the standard urinary tests; the inadequacy of the basic tools to inform doctors; and the potential ramifications of misdiagnosis for thousands of sufferers.

 

I would therefore urge you to make time to attend this important debate.

 

Yours sincerely

 

 

 

 

The betrayal of the cystitis sufferer

 

Urinary tract infection (cystitis/UTI) affects 150 million people worldwide each year: 33% of women are expected to suffer before they are 24.

 

Women presenting with symptoms of UTI in primary care will be managed according to a guideline, there are several of these; they are contradictory and most ignore the published science.

 

The assumption that a UTI will always cause pain is wrong. In fact, pain may be a late manifestation.

 

The advice to increase fluid intake is not based on evidence. The practice dilutes the urine of natural immune chemicals and antibiotics, if prescribed. The dilution of pathological markers in the urine may falsely imply recovery.

 

Cranberry juice is not effective.

 

Many practices will test the urine with dipsticks and, if these prove negative, the patient is informed that there is no infection. This is incorrect advice and confuses ‘no evidence of disease’ with ‘evidence of no disease’. The dipstick test will miss well over 50% of all infections.

 

If a urine sample is sent to the laboratory for culture, and this is reported as negative, it is probable that this will be assumed to refute the diagnosis of UTI. This is also wrong; the standard MSU culture will also miss well over 50% of all infections, so that a negative test is not evidence of no disease.

 

If the patient is fortunate enough to be diagnosed with a UTI it is possible that she may be prescribed antibiotics, typically for three days. This may not work: 20% to 30% of patients will fail recommended treatment whether prescribed for three days or 14 days. If she complains that she has not recovered she is likely to be dismissed.  She will have been advised to drink plenty, her urine, suitably diluted, will be devoid of pathological signals. Thus it is assumed that she must be better – The test says so.

 

These facts have been available in the scientific literature for a large number of years. The standard guidelines seem to ignore this evidence placing people at risk of being denied appropriate treatment. We do not know the consequences of untreated UTI persisting over months or years, but it may reap harm. The current anxieties about antibiotic resistance make it harder to bring sober reflection to this problem.

 

This may be an orphan subject but a cause of immense suffering for many people.

 

James Malone-Lee MD FRCP

Professor of Medicine, Whittington Campus, UCL Medical School

 

6th July 2016

 

 

 

 

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