Cystitis

Better Testing for UTI's ??

8 June, 2016

The COB Foundation would like to support the OBBI Group by advising its members of the forthcoming activity in support of better testing of Urine samples in understanding the caiuses of rUTI's. We would also encorage you to make contact with your MP and invite them to attend the session on the 6th July - the more that attend the more likely it is that the matter will be taken seriously and changes made.

 

From the OBBI Facebook Group

 'Prof. Malone Lee is speaking in the house of commons on the 6th July regarding the inadequacies of urine cultures and dipsticks. A colleague from UCL will be speaking and some expert patients receiving treatment at the LUTS Clinic. Prof and his colleague will be providing the science and the patients will tell the MPs the effect these useless tests have on us, how these tests have severely impacted the treatment we subsequently received (pre LUTS clinic) and the dire consequences on our health. CUTIC will be lobbying for change following the presentation - a change in the way urine is tested and infection is diagnosed and NICE guidelines for Chronic UTI. We need as many MPS to attend this presentation as possible, we will only be able to bring about this change by making our MPs aware of our condition and the problems with testing, we need them to attended the Presentation. Inorder for this to happen you need to send Carolyn Andrew's template letter below to your MP  ( all you need to do is copy and paste the letter from here to a word document on your computer and add your details). It is terribly easy you just need to top and tail the letter with your MP's name and your name and address.
DR Anderson patients or other supporters you can send the letter too - you just need to amend the first paragraph to be specific to you. 
When you have sent the letter please can you send your MP's name to us at the COB Office and we will pass on the information to the OBBI Facebook Group - as they need to keep a current list of the MP's who have been contacted by their constituents so that Catherine West, MP, can send official invites.

Please do this so we can bring about real change and stop the suffering. We need as many people as possible to send the letter. Thank you in advance.'

NB: Any questions please call the COB Office.

Your name

Address

 

 

NAME OF MP

House of Commons

Westminster

SW1A 0AA

 

DATE

 

Dear Mr XXX

 

Devastating Impact of Chronic Urinary Tract Infection and the Costs of Misdiagnosis – meeting 6 July, 2-3pm Portcullis House

 

As one of your constituents, I am writing to ask for your help. I suffer from a chronic bladder infection and have been under the treatment of Professor Malone-Lee at the Lower Urinary Tract Symptoms (LUTS) clinic which is part of the Whittington Hospital NHS Trust.  Professor Malone-Lee will be presenting to MPs on 6 July and I am writing to ask if you would attend to find out more about how you can help. I am one of the lucky ones to have been referred to his clinic and I am responding favourably to treatment. Other patients in the UK are not as fortunate.

 

Background to forthcoming presentation to MPs

According to the Cystitis and Overactive Bladder Foundation, there are approximately 12 million in the UK people suffering with some kind of bladder problem.

There are over 400,000 people in the UK who have been diagnosed with a condition known as Interstitial Cystitis/Painful Bladder Syndrome which, they have been advised by urologists, occurs for no known reason and is incurable.  There are probably a similar number who have not been diagnosed who are living with this debilitating condition in silence.

The symptoms these people suffer from include:  unbearable pain, frequency of urination – sometimes up to 8 times an hour, pain on urinating and/or pain after urinating, inability to urinate – requiring daily catheterisation, broken sleep through pain and the need to urinate several times a night.  Many sufferers have had to give up work and now survive on benefits and family support.  Children have their education affected and miss many days of school.  They also suffer the embarrassment of having to use the toilet excessively and this can affect their willingness to go to school.

 

When patients initially present with symptoms (eg lower pelvic pain, urinary frequency, pain on urination), the first thing that any doctor or specialist does is to test their urine with the standard dipstick test.  Sometimes this shows that the patient’s urine is abnormal and sometimes this test shows nothing at all. The next step is to send a sample of urine to the local hospital laboratory for testing.  For a large number of people, the tests tend to come back ‘nothing abnormal detected’.  They are then told they don’t have an infection and are either sent away or given a very short course of antibiotics (3 or 5 days). In some cases, patients have even been told they are ‘imagining the situation’ and some have been sent for psychological reviews.

 

The best that can be offered to these patients is anti-depressants, opiates or anti-cholinergic drugs which dull down the symptoms but which have serious side effects.  These can include headaches, dizziness, drowsiness, feeling tired; blurred vision, fever, flu symptoms, gastro-intestinal problems, weight gain and oedema. These drugs sometimes mean that a patient cannot work or lead a normal life.

 

Why do the tests come back showing no infection?  The reason is quite simple – Professor Malone-Lee will be talking about this on 6 July.  The current ‘gold standard’ test was in fact developed in the 1950s and was based on a very small sample of pregnant woman with acute kidney infections (the so called “Kass” criteria) to detect kidney infection in a group of pregnant women.  It has not been reviewed, revised or reconsidered since then. The threshold set is an arbitrary one as we now know that diseases do not occur at cut off points, but occur across a spectrum. The Kass criteria set a threshold for the amount of bacteria necessary within the urine in order to register that an infection is present. There have been huge changes in the development of bacteria – including the discovery of new bacteria which did not even exist in the 1950s and the Kass test cannot detect them.

 

At the clinic, the professor and his team check urine in a different way.  They use a microscope to look at a fresh sample of urine and physically count the number of white cells, blood cells and epithelial cells they can see.  From this, they can immediately see whether a patient’s urine is infected.

 

Professor Malone-Lee and his team at the Lower Urinary Tract Symptoms clinic at the Whittington Hospital NHS Trust believe that these patients suffer from an embedded infection which is extremely hard to treat.  He has currently almost 1,000 patients at his clinic and a high proportion of them are either cured, or have their lifestyles improved dramatically.

 

This debilitating condition is in fact a chronic urinary tract infection which has occurred in people for many reasons.  The condition is not fussy who it affects – there are elderly patients, middle aged patients, active young men and women and also children who are suffering dreadfully.

 

Almost without exception, all of the patients who attend this clinic have been told by GPs, urologists and other specialists that they do not have an infection.  Most have been subjected to invasive procedures including cystoscopies and biopsies, urodynamics, urethral dilation, bladder stretches and instillations.  These are not only painful for the patient but are also very expensive for the NHS to undertake.  Patients undergoing these procedures have reported that they have not helped them and in some cases, have made their symptoms and pain worse. Scientific evidence finds these procedures offer limited symptom relief and may cause harm. Following the Professor’s treatment, only 30% of patients require 10 or more follow-up appointments to achieve symptom resolution.  These results are striking, as most patients have been told their condition is incurable.  For those who do not achieve a cure, the condition becomes far more manageable, enabling them to return to work and live normal lives. The clinic treatment has had an enormous impact on a multitude of patients, prior to which some had been forced to give up their jobs, children affected have been unable to attend school,  and had little to look forward to as a result of the chronic, debilitating pain, and in most cases appalling quality of life.

 

At present, there are no applicable NICE guidelines or treatment protocols for patients with chronic embedded bladder infections.  This is why Professor Malone-Lee’s research and work is of exceptional importance. We are also very concerned that NICE guidelines give mixed messages to the medical profession, as they only refer to acute UTIs.  There are no guidelines or reference to chronic infections which take longer to treat and are more complex in nature.

 

I am part of a sizeable campaign group of sufferers who are now pushing for changes in the way chronic Urinary Tract Infections (UTIs) are diagnosed and treated.  We believe that the diagnosis of IC/PBS is incorrect and that the innovative work of Professor Malone-Lee has proven that his patients (all of whom have been given the diagnosis IC/PBS) actually have a chronic, embedded bladder infection which can, over time, be treated and cured. 

 

Professor Malone-Lee and his team of researchers at the University College London have demonstrated through research that the standard NHS tests for diagnosing urinary tract infection (dipsticks of the urine and mid-stream urine specimens), in fact, are extremely insensitive and miss 80 and 50 percent of infections, respectively. Similar results have been found by a large number of international studies. 

 

Unfortunately for patients, the majority of clinicians still adhere to these outmoded tests which leave many patients undiagnosed and untreated. Further, 80 percent of samples sent to microbiology labs in the UK are urine samples each day, so it takes up a large percentage of their workload.  There is a real suspicion that testing is prioritised for speed and efficiency rather than accuracy.  There are major concerns that thousands of people will continue to be misdiagnosed due to the inadequacy of the current testing for chronic urinary tract infections.

 

Catherine West MP, in whose constituency the clinic is located, is very active on this issue and has organised a meeting at the House of Commons, on 6th July at 2pm, where Professor Malone-Lee will speak to MPs about his innovative work. Some expert patients will also be speaking about this condition. We will also be providing evidence on 6 July about the cost differential between treatment of so-called IC/PBS and the treatment at the LUTS clinic.

 

Oliver Dowden CBE, MP for Hertsmere has also become actively involved and will be working with Catherine West on this matter and has offered to put in a request for an Adjournment Debate in the house.  

 

I would very much appreciate if you could attend the meeting on 6th July in the House of Commons as my representative and I would be delighted to meet you to give you some further background and to discuss the issues further. With over 400,000 known sufferers in the UK, it is likely that a number will live in your constituency.

 

Thank you in advance for your support in this matter and I very much look forward to hearing from you.  Please note that the closing date for confirmation of attendance to Catherine West is 24th June.

 

Yours sincerely

 

 

 

 

Your name

 

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