LUTS FAQs

Accessing the service

What is the service�s waiting time?

As we are a unique clinic and treat patients from all over the country, the waiting list is very long. We will do our best to send an appointment as soon as we can.

Why do I need to come to the Clinic for urinalysis?

Onsite urine analysis is part of our management protocol. We need the urine to be fresh i.e. no more than two hours old so that we can analyse it immediately, as delay in examination can affect the accuracy. The tests are different to normal NHS urine tests so a sample analysed at your local clinic would not be appropriate.

Patients are expected to be able to travel to the clinic to provide a urine sample, regardless of their location in the country. The LUTS service cannot pay for couriers but you are able to send a sample or get a friend or family member to drop it off as long as we receive it within two hours of the sample being made.

How do I collect prescriptions?

All prescriptions will now be processed through the Whittington Health Pharmacy. The Pharmacy will provide three monthly prescriptions. It is open Monday to Friday 9:00 � 17:30 and on Saturday and Sunday 10:00 � 14:00.

Patients who live in London will be expected to collect their medication either in person or via a friend or family member. Only in exceptional circumstances, on a case-by-case basis and at the pharmacist�s discretion, will medications be posted. It is imperative that you call the Whittington Health Pharmacy on 0207 288 3387 to arrange collection. Prescriptions will be dispensed when the Pharmacy receives confirmation that the medication will be collected (please give at least 15-20 minutes for your medication to be dispensed).

The Pharmacy is able to post medication to patients who live outside of London. This will need to be discussed with Pharmacy via telephone. Please give at least one-week notice so that you don't run out of medication.

The Whittington Health Pharmacy provides a �drive-by� service for shielding patients only, where you can pick up your medication at the Magdala Avenue entrance to the Hospital without leaving your car to maintain shielding and social distancing. This can be arranged directly with Pharmacy.

How can I get in touch with the service?

If you have any questions, please consult our patient SOP and our website before contacting our clinicians. Please do not come to Clinic 4C without an appointment. You will not be seen by a clinician. You should not come to our hospital unless it is absolutely necessary so that it remains safe for others to attend.

If you are getting in touch to confirm if your referral has been received or have any appointment queries, please contact the Access Centre on: 020 7288 5511 / outpatients.whitthealth@nhs.net. Any appointment queries made direct to the LUTS Service will not be responded to.

If you need advice for a significant problem related to side effects or symptom response before your next consultation, please contact us by sending an email to lutscommunityadmin.whitthealth@nhs.net. We will do our best to reply to any clinical queries within 48 hours. If your query is not clinical, we will respond as soon as we can. If you need advice and cannot email us, you can call us on 020 3074 2256.

Employees have the right to be treated with respect and dignity at all times, as do patients. It is unacceptable for patients or other members of the public to harass staff. Patients will be informed in writing if their behaviour is unacceptable and any further incidents will not be tolerated.

How do I access Whittington Hospital?

You can access the Whittington Hospital via tube (Archway station), train (Upper Holloway station) or bus (C11, W5, 4, 17, 41, 43, 134, 143, 210, 263, 271, 390).

There is no parking on the hospital site during the day, but there are a limited number of disabled parking spaces which may be used by Blue Disabled Badge holders between 8am and 5pm, free of charge. Parking is for a maximum of three hours. Normal charges will apply to Blue Disabled Badge holders after 5pm on weekdays and all day at weekends. The first 20 minutes is free and after that there is a charge of �3 per hour.

Treatment

Tell us a little about your approach. What is your treatment protocol?

Our treatment protocol involves assessing a patient by taking a history and using a 39 point symptom score which was devised in our unit. This allows us to monitor the progress of the patient whilst they are under treatment. It is usual that, before a patient comes to see us, they have had many investigations and sadly failed treatments. We test the urine using fresh microscopy of an unspun sample of urine and count the white cells and epithelial cells, generating a plot of the white cell count and epithelial cell count. Along with the symptom score, this allows us to monitor disease activity. We do not use urine culture or dipstick tests to inform our management. This is because we have studied these tests as part of our research and are aware of their shortcomings. In particular, the urine culture can be misleading which I will come on to. The white cells and epithelial cells found in the urine are a sign of infection and inflammation produced by the body during a urine infection.

The treatment regimes are outside local and national guidelines (NICE) and have been developed through observational studies and small randomised controlled studies. We have published our studies on these regimes (see references). In brief, we aim to use a first generation, narrow spectrum antibiotic in the highest dose tolerated and we tailor the regimes to the patient�s response and tolerance. In all of this, the patient's description of their symptoms and the related changes, reign paramount. We also use methenamine hippurate which is a urinary antiseptic, in addition to the antibiotics. Methenamine hippurate (Hiprex) is an old antibacterial agent that turns the urine into a disinfectant. It acts in the urine on planktonic bugs that break out of cells and stops them from colonising fresh cells. It has potential for controlling the situation during the weeks spent waiting for the bladder to clear itself of colonised cells by shedding them from its surface.

What is the average duration of treatment?

The average duration of treatment in our patient group is 383 days and we try not to change the treatment regime which requires a determined persistence from our patients. We have, in the past changed our regime too quickly in response to a flare, with regret. It is expected that patients will have symptom exacerbations along the way. A smaller proportion of our patients require one of our second line regimes involving a more broad spectrum antibiotic and an even smaller proportion are on a combination of antibiotics. We aim is to achieve a situation where the symptoms are stable on methenamine alone and then to eventually withdraw the methenamine also.

Why do I need a blood test?

We ask our patients to have a blood test done to assess their liver and kidney function due to exposure to antibiotics. All patients on long term antibiotics are asked to have blood tests every three months, either through the GP or as advised by the LUTS service. If indicated by the result of tests carried out, you may be asked to stop treatment.

Treatment with long-term antibiotics is not licenced in the UK. For this reason, we ask that you follow your treatment plan diligently and adhere to our safety guidance relating to the reporting of side effects. You will be monitored very carefully.

Why you do not consider broth cultures and rigorous culturing in general of importance when you are treating patients?

One of the problems that troubles us the most is knowing what microbes are causing the symptoms. It is very important to understand that just because you detect the presence of an organism through culture of the urine; be it in a routine NHS laboratory, a broth culture or a culture of the urinary sediment, it does not mean that the bacteria isolated is the cause of the infection. It might be that it is just easy to grow and that it exists without harm in the bladder. This is becoming all too evident from our current laboratory work. There appears to be no reliable method for implicating an isolate as the �cause� of the symptoms. The normal bladder is not sterile and has a polymicrobial microbiome of well over 450 different species. We can still see presumed pathogenic species in the urine of patients who have recovered and in our healthy volunteers. For years it has been widely assumed that if you detect a microbe in the urine, obtained from someone with lower urinary tract symptoms, then it must be the cause of the symptoms. It is difficult to accept this given modern evidence. This is why we put so much emphasis on the symptoms and the plots of the urinary urothelial cell counts and pyuria. We see patients who have sent urine to the USA and elsewhere, seeking special cultures. All too often, the data obtained do not help matters but do encourage people to focus on specific bugs without necessarily knowing whether they are relevant.

Is there any way to cure embedded infection, or is it a case of managing symptoms? Can you give us an idea of your success rate?

Yes, on average our treatment regime takes 383 days after which time 80% of patients have successfully stopped antibiotics. 20% of patients require a longer treatment time. Within this 20% group, we have a few patients that we find difficult to manage off antibiotics and they have had to continue with close monitoring. We do not know why this group behave in this way and it is one of areas of interest for our research. There may well be factors related to the individual, the medication or the bacterial populations in the bladder that cause this response. How do you address any potential gut issues which may arise during or after treatment. Are there any particular probiotic regimes that you suggest?

We do not advocate any particular probiotic regimes but base our management on an individual basis. We are very careful to highlight potential bowel side effects and ask the patients, in particular, to read the information leaflets on taking the medication. Often, taking the antibiotic correctly with or without certain foods is very helpful. Some of our patients have found it very helpful to use gastro-resistant capsules which they can buy over the internet. We do not know for sure whether probiotics help or not. They do no harm, other than some are expensive: Some patients report benefit and others do not. We have no objection to my patients using them. A probiotic worth considering is Kefir.

How do you see the future in terms of treating embedded infection? Will there ever be a time when long-term antibiotics are superseded by something better? What might that be?

This is our hope. If we can move away from oral antibiotics we would be delighted. We are working on a trial of a treatment that would be local in the bladder, however, such treatments require a long time to develop and test. We will keep you all posted on this.

Research

What does it mean to participate in a research study?

We are an active research centre and part of the Chronic Cystitis Research Group (CCRG). You may be asked to participate in our ongoing research studies investigating the cause and treatment of chronic urinary symptoms. It will not affect your treatment. We hope that you will consent to take part in the studies and you will be provided with detailed information should you wish to participate. Taking part in the research studies is entirely voluntary.