Cystitis

27/10/15 - Update to closure of London Professors clinic

27 October, 2015

 

CLOSURE OF THE LONDON PROFESSOR’S CLINIC – THE PRESENT POSITION – 27th October 2015

As you will all by now be aware, the LUTS Clinic at the Whittington Hospital in London was suspended with immediate effect from 21 October 2015. We are deeply saddened at the distress this has caused to all of those affected including COB members who were patients at the clinic.

As far as we understand, the Trust has decided that the Professor’s approach presents  unacceptable risk/benefit ratio. They had suggested an approach to treatment that would allay their fears,  however, the Professor knew that this safer strategy  (Based on standard guidelines for acute UTI) had already been tried many times under  GPs and consultant urologists and urogynaecologists at various hospitals without success before the patients were referred to him. We understand that Professor has stopped clinical practice because he was ordered to treat his patients in a way that he considered to be inappropriate. He has also felt that if senior people believed that his practice may be dangerous, the moral thing to do is to step down from clinical practice until these doubts be resolved. It was his suggestion that the clinical service should therefore be closed down because he did not think that patients should be invited to attend and then be offered treatments that had failed them previously.  

We know from various patients who are members of our forum that the Professor provides the highest level of care and support to all his patients (NHS and PP’s alike) and to his clinical and academic team. We know that he would not step down from his clinical responsibilities without a compelling reason. We are reassured to learn that he is continuing with his research and academic work and that he will continue to support  COB’s interests  as a clinical academic through peer review literature and other academic channels on chronic urinary tract infection in the community. He intends to spend a great deal of his time with his academic colleagues in UCL accomplishing this work with his post-graduate students. It is our experience that the Professor cares deeply about his patients and believes that he serves everyone’s best interests by concentrating on his academic position.

The Professor accepts that a wider public knowledge and debate on the way in which the NHS responds to patients with chronic urinary tract infection is long overdue, a view very much supported by the COB Foundation.

If the current difficulties were resolved, the Professor would return to clinical practice so as to hold things together until a younger generation of clinicians could take over from him.

For those affected who wish to complain about the sudden closure of the clinic, we have compiled template letters (available below) which can be copied, pasted and tailored with your specific details and sent to the 1. Whittington Hospital and 2.Your local MP asking for the matter to be raise with the Minister for Health.

 

  1.     TEMPLATE LETTER/EMAIL TO DR RICHARD JENNINGS


Dear Dr Jennings,

I am writing to you as a patient of Professor Malone-Lee who treated me for my lower urinary tract symptoms/chronic cystitis at the Lower Urinary Tract Symptoms(LUTS) clinic run from Hornsey Central Road Health Centre for patients with LUTS. I have received notification that Professor Malone-Lee’s clinic was closed on 21st October 2015. I was very disappointed in the way this decision was advised with seemingly little or no concern for the impact on patients. 

I would have expected a much better level of support from the Trust i.e. a support line or single point of contact for information and advice.

I understand that this action has been taken following internal consultation and notification by the Whittington Hospital Trust that Professor Malone-Lee must treat his patients with lower urinary tract symptoms according to standard NHS & Trust guidelines for managing patients with acute cystitis. As Professor Malone Lee will have explained, these standard guidelines advise that acute cystitis ought to be managed with a short course of antibiotics ranging from 3 to 7 days. I must emphasise that the reason I am being treated by the Professor is that the various short courses of antibiotics provided to me (over xxx years ) have not helped my condition. The only treatment which has worked and demonstrated significant improvement has been Professor Malone Lee’s treatment at the LUTS clinic with long term antibiotics. Furthermore, Professor Malone-Lee and his team have demonstrated through academic and clinical research at the LUTS Clinic that his patients suffer from a chronic infection of their bladder which has somehow become embedded in the uretholium. What is needed to tackle this is a long term dose of antibiotic at the right strength so as to ensure adequate tissue penetration. Over the last few years, these antibiotics have been identified through concise and accurate clinical research and patient treatment to be narrow spectrum first generation antibiotics.  These regimes are sustained only if a tangible response is evident and are tested by a trial of cessation.

 I must emphasise that I and many of the LUTS Clinic patients do not have "normal" bladders which respond to standard treatments. We are a significant cohort of patients for whom the standard treatment just does not work. Much longer courses of antibiotics are required. The Professor and his team’s results are striking. They give patients their lives back and get rid of their daily, debilitating chronic pain. We are also aware that his clinical research has demonstrated that his treatment protocols are remarkably safe. He sees very little resistance and indeed very few cases of C difficile for example (out of 4,530 patients, 3 developed C difficile). Throughout the whole process, unusually detailed outcome and safety data are  collected and analysed regularly and fully available for scrutiny.  At present only 30% of patients require 10 follow up appointments or more.

In conclusion, on average a patient experiences 6.5 years of relentless symptoms. The majority of the Professor’s patients at the LUTS clinic are referred to him by urologists and gynaecologists unable to provide successful alternative treatments due to the complexity of their symptoms.  If, as you suggest, other clinicians, private or NHS, alter the regime, or introduce instruments into the bladder, I am concerned that my condition will return to ‘square one’.

I would like to re-iterate that the way in which the clinic was closed was unprofessional and the advice I have been given regarding alternatives is poor. The ideal would be to reinstate the clinic. If this is not possible, then I would expect the Whittington Trust to be giving better advice and support to me and the rest of the Professor’s patients.

I look forward to your early response.


Yours sincerely



PLEASE FEEL FREE TO TAILOR/ADAPT.

E mail to richard.jennings@nhs.net or write to


Dr Richard Jennings

The Whittington Hospital

Magdala Avenue

London
N19 5NF

 

 

2. TEMPLATE LETTER TO YOUR MP (adapt as necessary)

Dear Mr/Ms


I am writing to you as a patient of Professor James Malone-Lee. He treated me for my chronic urinary tract infection as part of his clinic for lower urinary tract symptoms (LUTS) run from the Hornsey Central Health Centre which is part of the Whittington NHS Trust in London.  I have received notification that Professor Malone-Lee’s clinic was closed without prior notification given to any of his patients on 21st October 2015.

 

The decision was taken so suddenly that the LUTS clinic was closed during morning surgery with patients waiting for their appointments! You would have to agree – not the most professional way to do this. Patients have been advised that they must return to their GPs for further treatment. (insert the person who referred you) referred me to the clinic because my condition fell outside his level of expertise. It is therefore, difficult to imagine how my GP will be able to help me now.

 

I understand that this action has occurred following internal consultation and notification by the Whittington Hospital Trust that Professor Malone-Lee and his team must treat his patients with lower urinary tract symptoms according to standard NHS & Trust guidelines for managing patients with acute cystitis. These standard guidelines advise that acute cystitis ought to managed with a short course of antibiotics ranging from 3 to 7 days. I must emphasise that the reason I was being treated by the Professor is that the various short courses of antibiotics provided to me (over xxxx years) have not helped my condition. The only treatment which has worked and demonstrated significant improvement in my condition has been Professor Malone Lee’s treatment within the LUTS clinic with long term antibiotics.

 

Professor Malone-Lee and his team at the LUTS clinic have demonstrated through academic and clinical research that his patients suffer from a chronic infection of their bladder which has somehow become embedded in theuretholium of the bladder lining. The Professor believes that what is needed to tackle this is a long term dose of antibiotic at the right strength so as to ensure adequate tissue penetration. Over the last few years, these antibiotics have been identified through concise and accurate clinical research and patient treatment to be narrow spectrum, first generation antibiotics.  These regimes are sustained only if a tangible response is evident and are tested by a trial of cessation.

 

I must emphasise that I do not have a "normal" bladder which responds to standard treatments. I am part of a significant cohort of patients for whom the standard treatment just does not work. Much longer courses of antibiotics are required.

 

Could I ask that you consider further investigation into the reasons behind this decision and why this vital and successful health service has been withdrawn. It may be possible for you to raise this issue with the Health Secretary and other departmental ministers so that I and others who are Professor Malone-Lee's patients can ensure that they can continue to access the treatment and healthcare that is so desperately needed and is such a valuable and important serv

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