Did you know that most people with kidney stones never find out why they are making them?
Even fewer benefit from preventative treatment. And many people are on diets and remedies that have been advertised on the internet.
Not all patients with kidney stones are suitable for this service, but if you are, we can:
- advise on specific diets, or stop inappropriate diets and supplements
- identify other health risks such as cardiovascular and bone disease
- sometimes we can make a genetic diagnosis and give specific treatment for your stone disease
This is a separate service to the urology service – you will continue to be seen by your urologist regarding stone management/scanning as before.
We are now running the clinic entirely virtually – using Attend Anywhere.
The Royal Free Metabolic Kidney Stone Service
Who runs the clinic?
Consultant: Dr Shabbir Moochhala
Dr Moochhala is a nephrologist and physician with a long standing interest in kidney stone prevention. He is principal investigator and chief investigator for a number of interventional trials in hyperoxaluria. He has an interest in rare renal diseases as part of the RADAR (National Renal Rare Disease Registry) network, and is chair of the groups for hyperoxaluria and APRT deficiency. He was the nephrologist member of the NICE Guidelines Committee for renal stones, and the Quality Standards Advisory Committee for renal stones. He is also an Honorary Senior Lecturer at UCL, as part of UCL’s Department of Renal Medicine.
Patient navigator: Gerry Semple firstname.lastname@example.org
Tel 020 7794 0500 extension 33323
Our patient navigator is the first point of contact with the service.
What will happen in the clinic?
When is my appointment?
You may have received a clinic letter or a text message, but these sometimes become out of date. The most up to date details can be obtained from the Royal Free patient portal.
Making the clinic virtual
We are in the process of making the service fully virtual permanently, so that in most cases you will not need to attend the Royal Free for a face to face appointment. You will receive a text regarding your e-appointment. If you are a new patient, you will usually receive another text asking you to make arrangements to complete blood and 24 hour urine tests in advance. These should be completed at least 3 weeks in advance of your appointment as the results take some time and need to be available to discuss at your clinic. In some situations, testing may not be necessary especially if you already have some results available.
For follow up patients, most tests will be done after the clinic. In this way we can discuss with you what tests are needed and you can then book blood tests online and/or collect urine collection bottles.
There will be exceptions to both of these, so please go by the advice you have been given or contact our patient navigator if you are not sure. Please bear with us while we make these major changes – we hope that ultimately the service will be much more efficient in the future!
it would really help if you can email us any clinic letters or test results that you have from othe hospitals, in advance of your appointment.
You can book your blood test slot by clicking here. At same time collect/drop off your 24 hour urine sample. It available, it is better to have blood tests done in the renal blood testing area on 3rd floor East, where you can also drop off any 24h urine samples and have any special blood tests e.g. for genetics, taken if required. If not, then please book an appointment for the blood testing area on the ground floor.
How to collect a 24h urine sample
This isn’t easy and it’s essential to get it completely accurate. It is for your benefit. Here are some instructions, or alternatively you can view our short video or our instruction leaflet.
If you are collecting your 24 urine samples before you attend the Royal Free eg. for an appointment or blood test, you could ask you local hospital to provide you with an empty 24 hour urine collection bottle. If you need to do this please download and print this letter which may help.
1. Pick a time, e.g. when you wake up at 7 am for example
2. At 6.59 am empty your bladder into the toilet. That is last night’s urine and we don’t want to collect it.
3. From then on, every time you pass urine (even if it’s at the same time as a bowel movement) you need to collect ALL that urine in the bottle.
4. So you might pass urine for example at 10 am – that goes in.
5. And so on throughout the day, and overnight.
6. Keep doing this until 7 am (i.e. 24 hours later) the following morning – you need to make yourself pass urine at exactly that time to complete the collection.
7. Do not collect any more urine after that. If you need to do a second collection, the next urine passage will be the first sample of the next 24h collection.
8. If you make a mistake, discard all of the urine and start again. There are no preservatives in the bottle so it’s ok to do this.
9. Try and return the completed collection to the Royal Free (or arrange the courier) within 24-48 hours of completing the samples. Keep them in a cool place but there is no need to keep them in the fridge. You can return them direct to the laboratory on 1st floor East. Walk along this long corridor (go past the Lyndhurst Rooms) and look for the specimen reception hatch on the left hand side at the end of the corridor.
24 hour urine collection video
Hospital prescriptions can now be posted out, so please ensure that we have your correct address/phone/email details at all times. To reorder a prescription, please email email@example.com including your hospital number and date of birth.
Kidney Stone Disease
This general advice applies in almost all cases:
• Always save any kidney stones that you pass
• Drink plenty of water, throughout the day
• Eat a healthy and varied diet
National quality standards for kidney stone management are available from the NICE website.
You can see the full national guidance for kidney stone disease issued by NICE by clicking here.
Patient information days
Via RADAR – see below
Research into kidney stone disease
We are a research-active department and we may invite you to take part in a number of research studies. For all of these, it is important to remember that participation is completely optional, and your care will not be affected if you choose not to participate. Detailed information will be given but here is an overview of the current research studies.
RADAR (https://rarerenal.org/patient-information/) is the UK’s national registry for people who have rare kidney diseases. There are 4 conditions listed that are stone-forming conditions. If you have one of these, we will ask if you would like to be registered with RADAR. You can find the Patient Information Sheet and Consent Form here.Your data is kept under NHS level safety and privacy. The advantage for you is that it allows us to contact you if new trials come up for patients with your condition, and we can also invite you to Patient Information Days, which are held every so often, are very popular and very good fun! You can also see your own results via simultaneous enrolment for PatientView (LINK to this).
Genetics of kidney disease
This is an ongoing research study that we use to enable us to collect samples (usually blood samples) for tests that you might need but are not available on the NHS. These are often research or genetic tests and if you would benefit from these, we will be discuss them with you in advance. In other cases, we might ask you to contribute. If so you can find the Patient Information Sheet and the Informed Consent Form here.
Currently recruiting trials in hyperoxaluria
Primary Hyperoxaluria Types 1,2,3 and Enteric hyperoxaluria