As the Chair
of Islington’s Health and Care Scrutiny Committee, and Vice-Chair of the North
Central London Joint Overview Health Scrutiny Committee - JOHSC (which covers
Barnet, Enfield, Haringey, Camden and Islington), I first became aware in early
November of patient concerns about the possibility of closure/decommissioning
of a specialist LUTS clinic, which is run by Professor James Malone-Lee from a
medical centre in Hornsey, and commissioned by Whittington Health. Anxious patients asked to attend the December
meeting of the JOHSC to make a deputation to the committee to express their
concerns. It seems that professor
Malone-Lee has been using a regime of prescribing higher strength, longer-term
antibiotic treatments than is usually considered acceptable under NICE
prescribing guidelines to treat the patients' symptoms. The key point in all this is that the patients have all
tried many times (and failed) to get their symptoms cured under more
conventional treatment regimes, and had been referred to Professor Malone-Lee’s
clinic as a last resort. Many of the patients report that this regime has
worked for them where all others had failed.
We were in
the process of organising to take the deputation when I received a phone call
from Simon Pleydell, Chief Executive of the Whittington, telling me that they
had taken an urgent decision to suspend the clinic following two episodes of
related patient harm. The Whittington
said they would be making alternative arrangements for patients, but this
didn’t seem to transpire.
As soon as
the announcement was made, I started receiving long, anxious emails from
patients, all of whom wanted to talk quite candidly, and in some detail, about
their symptoms, and to relate how the professor’s treatment had been the
difference between a life of almost unbearable discomfort, and a semblance of
normality. I personally received over 50
emails from patients of the clinic, all surprisingly detailed, and with a very
similar story, and ending with the distress and anxiety they were all suffering
at the prospect of not having their prescriptions renewed, and a return to
their suffering.
What followed
was a combination of intense lobbying of the Whittington, and myself, and also
Cllr Alison Kelly (Camden) Chair of the JOHSC.and Cllr Pippa Connor (Haringey)
vice chair, by a very determined group of patients. I had a number of conversations with the
Whittington during which I suggested that, given the patients’ clear
understanding of the risks of the treatment, and that they considered this risk
worth taking, that the clinic should be re-opened on the basis of an agreement
with patients about the risks, perhaps some kind of disclaimer similar to that used with cancer patients.
The
Whittington then held a meeting with patients, whilst at the same time a group
of patients took the issue of the closure to court. The Whittington seemed generally chastened
and surprised by the strength of feeling, and the loyalty of patients to the
clinic. Shortly afterwards, an agreement
was reached with Prof Malone-Lee to a lesser restriction on his prescribing and
for a full independent review of the clinic and it’s practices to be carried
out, following which the clinic was re-opened.
About a week
later the JOHSC took the deputation, and after about an hour’s debate, we
arrived at a series of recommendations to ensure that the independent review of the clinic is properly carried
out, and that patients would be protected meanwhile. The recommendations, as agreed by the
committee are as follows:
Recommendations:
1. That
the Committee be minded to consider any proposal to decommission the LUTS
Clinic by local CCGs as a substantial variation to services and that the issue
be referred to the Secretary of State should such a proposal proceed without
comprehensive consultation on the grounds of failure to consult.
2. That
the committee be given the terms of reference for the external review of the
LUTS clinic, that the terms of reference of the review should include the
Whittington’s actions leading up to the suspension of the service, and
that the results and recommendations of the review be presented to a future
meeting of the committee prior to any further decisions being taken to
decommission.
3. That
the Committee be updated with the Strategic Risk Register from Whittington
Hospital and that the communications and engagements strategies and
responsive action plans are shared with the Committee, to satisfy the
committee that appropriate arrangements are in place should similar
circumstances occur in respect of any future urgent actions by the Whittington.
4. “That
letters be sent to both Haringey and Islington CCGs requesting confirmation
that they will not be proceeding with their proposed decommissioning of the
LUTS Clinic pending the outcome of the Independent Review.”
Actions:
In
relation to the level of treatment and the prescriptions that were carried out
at LUTs Clinic, Councillor Pippa Connor, requested that the Committee receive
an update on whether any medical studies or reviews were undertaken by UCL
about the treatment provided to patients.
I appreciate
this is a very abbreviated version of events, which excludes a number of
details. However, I think the most
important issue is to get the committee’s recommendations published as soon as
possible, since with regard to protecting patients’ health, the recommendations
are aimed at protecting them in the short-term as well as the long-term, and I
want patients to have the recommendations to hand, should discussions arise
with either the Whittington, Prof Malone-Lee or UCLH, with whom the Prof
carries out his research.
26 comments:
As a patient of the LUTS clinic. Thank you so so much for listening to us and for highlighting our situation in your blog. I cannot thank you enough.
Without the clinic I would be in dire straights indeed. I am one of those many people who have an embedded chronic UTI, because I was given not enough antibiotics right at the start to really kill this infection. I endured 8 months of excrutiating pain so severe that painkillers wouldn't touch it. I was unable to eat, sleep, work or look after my children. I lived on valium to help with the panic that came with "unexplained" pain 24/7.
I tried everything and saw so many other specialists both on the NHS and privately, before finding the Professor. With his amazing dedication, knowledge and research I am now able to live a pretty much pain free life, work and look after my two small kids, And although my infection is still there, and I am on antibiotics, I only have minor symptoms, and I am confident that he will totally cure me in time, like he has for thousands of others. It is bad enough to have a debilitating painful condition that most urologists say is "incurable", without the one person who has been able to take you out of debilitating pain, being made to effectively shut down his clinic by Dr Jennings. It was a terrifying period of my life that I hope is never repeated. The LUTS clinic is my current lifeline, and future cure.
I'm not in your 'patch', but on behalf of my wife who is a patient at the LUTS clinic I should just like to say a very sincere thank you for writing such a lengthy and comprehensive blog about the work of the Professor. The recent fiasco with the 'suspension' and re-opening of the clinic by the Medical Director is obscene and deplorable. I hope that many more voices like yours will echo these same sentiments...
Gratefuuly yours.....
Cllr Klute,
I would like to personally thank you for the recommendation made by yourself and other councillors.
The LUTS clinic is world recognised for its research into and treatment of a very debilitating illness that affects millions worldwide.
The clinic is up against change. Which is a very difficult task. The current tests use to diagnose UTI are insensitive and outdated. This lack of sensitivity means many infections go undiagnosed and untreated for years on end- which is why sufferers are left with an infection which is very difficult to treat.
There is a lot of dogma and stigma attached to the condition and those at the clinic are persisting to advance in this area of medicine which desperately needs advancement.
To those who looked on recent happenings fairly and reasonably, as a sufferer of this condition, I thank you.
Thank you for your support. It finally feels like somebody had listened.
Kind regards
Francesca Barnes LUTS patient
Thank you so much for your support of the LUTS clinic and the Professors work. I have been with the Professor for five years and am hopefully reaching the end of my treatment. During this time my symptoms have been under control and I have been able to lead a relatively normal life. Without the personalised treatment programme I would have had to give up work, suffer constant pain and exhaustion and my future would have looked very bleak. The sad thing for my family is that my 22 year old daughter is now showing alarmingly similar symptoms to mine. The consultant she saw through the Whittington said that if she didn't show any improvement after a few months he would plan to refer her to the Professor! This clearly shows how important the clinic and the Professors research are in finding a cure for this debilitating illness and that he is credited with enormous respect amongst his peers.
I am not in your 'patch', but with my wife, who is a patient at the LUTS clinic, I should like to thank you profusely for such a detailed and supportive article about the incredible work of Professor Malone-Lee and his team. My wife has suffered with a chronic UTI for several decades and nothing permanent was done until she was finally referred to the Professor. Almost as important as the treatment itself was the vital ingredient that he provided - HOPE!
The closure of the clinic by the Whittington Medical Director was a devastating bolt from the blue which set back the recovery of my wife. Now that it has been re-opened, she is able to receive the treatment she needs and is starting to feel better again. However, I am sure that this won't be the last attempt to close the clinic, and so the support that you give is absolutely VITAL!
Thank you so much.
Dear Mr Klute,
I am from Australia and I have been closely observing the events surrounding the forced suspension of Professor Malone-Lee’s LUTS Clinic in London.
Although it was a disaster from the start, I was pleased to learn the clinic re-opened in late November after negotiations between the Whittington Hospital Trust and the Professor on the ludicrous restrictions placed on the treatment provided to chronic UTI sufferers at the clinic.
I have observed the JOHSC’s position on this issue and I’ve been pleased to read your recent blog outlining the committee’s sensible recommendations. Patients of the LUTS clinic are very fortunate to have a committee that has been approachable and open to not only hearing the patients’ voice, but to REALLY LISTEN to what they have to say about how the clinic’s suspension has impacted on their conditions.
It’s important to recognise that the UK is leading the way in researching and treating chronic UTIs. The LUTS Clinic, and Professor Malone-Lee’s UCL research team, are credits to the UK and something to be proud of. For the last two years I have suffered from a chronic, embedded UTI. This is not a condition that’s recognised or treated in my country. For me, this means that receiving support, understanding and treatment are not options for me and so I’m left to suffer.
Chronic embedded UTI is a very real condition. GPs and urologists/gynaecologist see patients every day in their clinics, but sadly, most of them do not recognise the condition, so they have no understanding of the symptoms or how to treat patients properly. What’s seriously lacking in all countries is the recognition of chronic UTIs. Secondly, acknowledgement that existing testing methods are failing to identify these infections (it’s estimated by US researchers that 80 percent of true infections are being missed) and that better testing methods are absolutely necessary so the condition can be diagnosed and treated appropriately. And finally, treatment guidelines for chronic UTIs need to be developed urgently.
Thanks again for being so open to hearing what chronic UTI sufferers have been dealing with and for supporting those vulnerable in your constituency.
Thanks for being so helpful on this matter. I think the fact that so many politicians supported the patients made a big difference. I am concerned that UCL may try in the future to close the clinic again. This can't be allowed to happen, it's such a vital service.
As one of Professor Malone -Lee patients,thank you very much for writing this blog. I personally have suffered for 5 years with chronic UTI & I didn't find Professor's clinic until I was in my 4th year of this horrible infection. I was pretty much housebound & in fear as I have been to visit over 10 medical professionals (NHS & private) no one offered an explanation / or hope to my situation. I then found Professor. I was put on antibiotics & my UTI is under control. This could all have been prevented if the testing for UTI'S is improved, along with the development of NICE guidelines for chronic UTI'S. Professor has so much knowledge, he's quite amazing, he had answers for me & a way for me to get better. It would be great if we could raise awareness of chronic UTI'S, change NICE guidance for this situation & educate doctors on our condition.
Thank you for writing this blog & highlighting chronic UTI'S which so many of us are suffering from. I have had a chronic UTI for 5 years & was pretty much housebound until I found Professor Malone-Lee in my 4th year. He put me on antibiotics & I'm much improved. It would be great if we could develop NICE guidelines for chronic UTI'S & raise awareness of how inadequate the current testing methods are. We need to change these current testing methods quickly in the hope no one else has to suffer a embedded infection & will be prescribed correct medication as they need it. Professor & his staff gave me hope & have taken away alot of fear. I saw 10 medical professionals (NHS& private) all didn't offer help in the form I needed (self cathertisation, interstim) really life changing things. If only we could educate doctors more on this subject it really would make a difference. Professor is very knowledgeable & is so keen to share his work. The Luts clinic is amazing facility & I wish I'd found it sooner.
Thankyou for listening and highlighting how important the LUTs clinic is ! Professor Malone - Lee s research is world class and the Whittington hospital must be very proud .
I traveled from The Netherlands in agony to be cured by the professor and this amazing clinic , as it was previously considered incurable . However the professor proved this is wrong and he and his team at the LUTs clinic gave me back my life !
Thankyou Professor Malone-Lee and thankyou Whittington Hospital !!
The clinics work needs more recognition as does the recognition of " chronic UTIs " . The currant NICE guidelines for testing and treating need developing .
Iam so grateful to hardworking , caring and dedicated councillors such as you yourself and should like to thank the JOHSC for their support too ,
Dear Cllr Klute - I can't thank you enough for being so supportive towards us patients at the LUTS Clinic. I have been a patient of Prof Malone-Lee, who runs the LUTS Clinic, for over three years. He has managed to stabilise me and I hope to be cured in time of this horrible disease we all suffer from. I was devastated when the Clinic was suspended back in October - I think it was the worse time of my life, but luckily with the support of people like you and the formidable group of Prof's patients, we have managed to get it going again. Professor Malone-Lee is an extraordinary man. His demonstrated dedication to his patients is not common amongst his profession. Despite on-going criticism, he relentlessly continues to fight for a sick and vulnerable group of patients who have largely been ignored and have nowhere left to turn. He has an outstanding international reputation in terms of his research and treatment, and sees patients from many countries. Thank you again for your continuing support - it is making such a difference. Olivia Pethybridge
Thank you for your support for the LUTS clinic at the Whittington. I have been a patient of the Professor for 8 months and he is the only doctor who has given me hope for an eventual cure for my chronic bladder condition. His methods are considered somewhat unorthodox in the medical world but nearly all brilliant medical breakthroughs have been by maverick doctors with passion for their patients. The clinic is vital for almost 1000 people who have tried other treatments without success. The closure of this clinic was devastating to all Professor Malone-Lee's patients as without his pioneering work in treating chronic embedded bladder infections, we have nowhere to turn and no hope of recovery.
Rather than close this clinic, which I fear may well be a longer-term plan of the Trust, we need more LUTS clinics the length and breadth of the UK to treat people with this devastating condition. There are 400,000 disagnosed cases of Interstitial Cystitis in the UK and the vast majority of these sufferers are being treated only for the symptoms of their disease, not the root cause of it. Very little is known about this condition and the Whittington Trust have an opportunity to be in the vanguard of treatment and cure for almost half a million people. The Trust could lead the UK in this area of medicine which is currently not a priority for NHS England. We all have bladders and whilst healthy people forget they have one, those of us suffering with this disease are constantly aware of our bladders as they cause us dreadful pain and for many of us frequent visits to the loo - sometimes up to 50 times a day. OK, so the bladder is not 'sexy' but it is an essential organ in the human body and we deserve to be recognised as a group of people who suffer on a daily basis.
We need more politicians like Martin Klute to support our campaign for the recognition of chronic embedded bladder infections and to find a cure for many thousands of people who suffer the dreadful symptoms of this disease on a daily basis. Many have had to give up work whilst others battle daily to live a normal life.
Thank you Martin for your support - it is so important to us.
Thank you so much for highlighting the work of the Professor and the LUTS clinic. He is a pioneer and his clinic is of vital importance to myself and others who suffer from chronic UTI.
Jill B
Chronic bladder infection (IC) is one of the top ten most painful conditions. It can be so debilitating and painful that it completely circumscribes sufferers’ lives, causing damage to careers, relationships and everything which one should be able take for granted to live a normal life.
The medical profession considers this disease incurable. Patients are therefore left high and dry with nowhere to turn. Without appropriate treatment such as that offered by the LUTs clinic, years of untreated bacterial damage can, at worst, leave actual bladder removal as the only option. A regime of long term antibiotics is currently the only effective treatment.
Such treatment is not unique. Other chronic bacterial diseases exist which require antibiotic treatment outside NHS guidelines. The problem with this condition is that NICE conflate it with simple or recurrent urinary tract infections (UTIs).
The LUTS clinic is unique in the UK and possibly in the world. Mainstream consultants regularly refer patients to Professor Malone-Lee as they themselves reach the limits of their own capability to treat effectively. The Professor achieves a cure rate of c 70%; for the remainder, their condition almost always becomes much more manageable.
For the Whittington even to consider the long term closure of a clinic with such inestimable value to its patients – make no mistake at all that that, for whatever reason, is the aim – is a shocking dereliction of duty of care.
Many thanks to the Scrutiny Committee taking such trouble in dealing with this. Such a great justification for the establishment of the system of scrutiny.
Thank you so much for supporting us with this. Like so many other patients this clinic had being a life line for me. Before I was under the care of the professor and his team my life was effectively over. At the age of 35 and with two small children - you can understanding how distressing this was. I had spent 2 years following conventional treatment both privately and on the nhs. I had received no relief and if anything my symptoms were made worse by bladder installations and short cause antibiotics.
The professor must be allowed to continue his work and to treat people like me. Personally I can bear the thought of not being able to complete my treatment and going back to my life (or lack of it) as it was before.
Once again many thanks - please continue to support us.
Anna Lennox
Thank You so much for writing about this on your blog! Professor Malone-Lee's research and treatment is the start of a new and true understanding of a health condition that has long gathered little interest in the world of research. So many patients are wrongly treated which leads to enormous costs both for individuals and for the society as a whole.
The common thread running through the experience of those who discover the LUTS is that successive tests failed to uncover chronic infections, sometimes for years. It seems clear that, for the vast majority of simple UTIs, the present test gives the best return on investment. What is lacking is a Plan B test for the times when the existing method proves inadequate and patients can be caught in a deteriorating long term limbo.
For NHS bean-counters, a good Plan B would surely pay significant financial dividends, given the amount of urologist appointments, cystoscopies and other procedures that would thus be avoided. Added to that would be the lessening of the severe psychological effects of these chronic conditions, and consequent improvement in patient wellbeing.
Surely then a comprehensive review of LUTS should consider the question of testing, how it is connected to the clinic’s existence, and why the clinic’s suspension, even for 4 weeks, had such damaging physical and psychological effects.
The LUTS treatment is not sitting there as an alluring alternative to existing NHS treatments, but because existing treatments have reached their limit and failed. To urologists’ eternal shame, they have at that point sometimes chosen to question a patient’s mental stability rather than their own capacity to heal. Thank God the very small percentage of patients who need it have the dedicated tenacity of this extraordinary man to support them.
Congratulations to the JHOSC for its assiduous approach to the closure of the LUTS clinic, and for its empathy with patients, in such stark contrast with the inexcusable reaction of those bodies whose duty it is to provide proper patient care.
Thank you so much for writing about this on your blog! Professor Malone-Lee's research is world-leading and his treatment has given people with this condition their life back. This is a second chance they would not have had, should they not been lucky enough to come under his care. Chronic urinary tract infections has attracted very little attention in the world of research and been poorly understood but we are thankfully seeing a change in this. Prof. Malone-Lee and his team are world leading in this area, and should be a source of pride for the Whittington. As a patient I feel so lucky to have found a doctor who can actually help me get well from this embedded infection but feel equally heartbroken when I think of other people who are wrongly treated and left with a chronic infection which has such debilitating effects on life. New ideas and discoveries are often met with sceptisism to start with, but Prof. Malone-Lee's research results and the clinical outcomes of his patients stand strong and I firmly believe we are witnessing the start of a paradigm shift in the diffuse and obscure diagnosis and treatment of lower urinary tracts symptoms
It is great to have your support. My granddaughter, who is 6, is a patient of Professor Malone Lee at the LUTS clinic. She was referred by another specialist who had run out of treatment options. My granddaughter has flourished under the care of the clinic. The whole family were very concerned for her future when the clinic closed as there is no other service of its kind in the country. Thank you once again for the support you have given to this wonderful clinic and the support of its vulnerable patients. Margaret Pearce
It is great to have your support. My granddaughter, who is 6, is a patient of Professor Malone Lee at the LUTS clinic. She was referred by another specialist who had run out of treatment options. My granddaughter has flourished under the care of the clinic. The whole family were very concerned for her future when the clinic closed as there is no other service of its kind in the country. Thank you once again for the support you have given to this wonderful clinic and the support of its vulnerable patients. Margaret Pearce
Mr Klute thank you for supporting us. The professor׳s patients are a very vulnerable group of men and women: not only do they have an invisible painful and debilitating disease that nonsufferers cannot imagine (with the exception of the professor) this disease is not fully understood by the rest of the medical profession. No proper diagnosis, no effective treatment, no hope. So sufferers struggle to get the treatment they so desperately need, and even painkillers. Without the professor the patients face a horrible life destroying illness which appears to have no diagnosis or cure. The rest of the medical profession's treatments and operations only greatly worsen symptoms. It was cruel beyond comprehension to close the only clinic that can treat this chronically ill group of people. Instead of concentrating on regaining their health they have had to fight to keep their clinic open. Not only was it a wicked thing to force the suspension of the clinic it is embarrassingly shortsighted as it will soon become more widely known that the professor is a world leader in this field, someone that we're lucky to have in the UK.
Dear Cllr Klute,
Again a very big thank you on behalf of my daughter for all your help in this matter.
My daughter has been a patient of the LUTS Clinic for nearly 3 years and has been given a new lease of life by the Professor's antibiotic protocol, whilst for the previous 3 years her suffering was undescribable because of the terrible pain she had to endure due to her deep-seated bladder infection.
Noone had been able to help her previously, as both her GP and urologist, like most of the medical profession, failed to understand her condition. She was terribly depressed, could not socialize, could not sleep at night because of the pain, the urinary urgency and frequency and found it almost impossible to cope with her difficult teaching job.
Then she was referred to the LUTS Clinic and her life was transformed, as the unbearable pain subsided, she started sleeping better at night and her diet became more varied and interesting. She is now in the final stages of her treatment and can see the light at the end of the tunnel.
So why was the LUTS Clinic suddenly closed, since it is the only one worldwide which can help people such as my daughter? That was a terrible and callous thing to do to take away from her and from all the hundreds of other patients the only hope of a cure for this terrible disease.
Also, why is the medical profession so ignorant about the existence of these embedded infections? Why are the testing methods used at presentso inadequate and such a complete waste of time? If my daughter had been tested properly when her symptoms first appeared and if she had been given a more appropriate treatment protocol instead of a series of short courses of antibiotics, she would not have spent years in terrible pain.
Thankfully now the Professor and his team are giving her life and her future back to her and must be allowed to continue the great pioneering work they are doing in order to help present and future patients.
Regards
Many thanks for highlighting the work of this amazing specialist and LUTS clinic. I am so grateful for your support. Thank you so much for highlighting the work of the Professor James Malone Lee and the LUTS clinic. This clinic is of vital importance to myself and others who suffer from chronic UTI.The clinic's work must be recognised more as the recognition of " chronic UTIs " .
Thank you and please continue to support us.
Olya
Thank you so much for supporting the work of the LUTS clinic and Professor Malone-Lee. The clinic has been a lifeline to myself my mum and my daughter. My poor Mum has been suffering for over 15 years with the condition and I have been unfortunate enough to have had it for 3 years and my daughter for 18 months. If it hadn't been for the Professor and his treatment our lives would have been absolute miseries. It is terrible to think that the condition is not treated and recognised correctly by consultants leaving sufferers in despair with no one to turn to. The LUTS clinic is only one of two clinics in the UK that understand the condition and more should be done to make GPs and consultants aware and follow an appropriate treatment plan.
Thank you so much for taking the time to listen to patients from the LUTS clinic.
Chronic urinary tract infection is a debilitating illness that needs to be given far more attention by the medical establishment. The Professor and his team work tirelessly to help patients towards the resolution of their symptoms when other doctors do not have the in-depth research to set up effective treatment regimes.
I’ve suffered from this terrible condition (a chronic embedded UTI) for just over two years now and after being told by a urology consultant that what I was suffering from was ‘just a postmenopausal problem - it’s nothing’ I’ve since learnt that actually this isn’t the case at all - it’s a massive problem for a huge number of people across all ages, irrespective of gender. When the clinic closed I felt desperate, knowing that there was no-one else to approach with this debilitating, excruciatingly painful condition. In the sixteen months that I have been treated by Professor Malone-Lee my symptoms have reduced considerably and I have been able to work again. So many people are suffering with this condition it is shameful that there appears to be a lack of will, on the part of the medical profession, to fully investigate and treat this disease.
Thank you again for your support. Please continue to support us.
FE
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