Menopause Matters Forum
Menopause Discussion => Other Health Discussion => Topic started by: Katejo on November 17, 2016, 09:18:59 PM
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At the end of 2015 I put the following entry on MM "I recently had an ENT referral. I thought that my dizziness symptoms were linked to 2 recent UTI infections and said so. In a letter to the GP, the doctor says that I had attributed them to severe kidney disease which I have never had! The hospital has also invented a fictional name for my GP. I wonder whether I am being confused with someone else"
I wrote a letter of complaint to the hospital and also spoke to a GP about it. She said she would also complain to the hospital.
One year later: I had my endoscopy today which went ok. Just before leaving the hospital, I noticed on my past medical history on the results printout that i was supposed to already have chronic kidney disease stage 2! i spoke to a nurse who said I would have to go back to my GP about it. This afternoon i wrote a quick letter to the same doctor who made the complaint last year. Probably the same mistake never deleted from my records. No GP has said anything to me about kidney disease and the tests which i had back in September post UTI were clear. I have got a non urgent nephrology referral in Jan but that is just because of the blood traces in urine (as already discussed).
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I had bloods done this year and my results are shown on our system online. It says I have stage 2 kidney disease and no one has ever discussed it with me ! I read up that many people won't know they have it but it only goes up to stage 4?
A diabetic colleague only last week was telling everyone at work she has stage 1 because of her condition and when I said I supposedly have stage 2 she went quiet
My 2 brothers got each other's diagnosis and a lady on another forum had her notes crossed with a severe mental health patient and was then refused treatment she needed. She consulted a solicitor I think to sort it
X
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Loads of people have chronic kidney disease and Drs don't tell them because in most cases it never progresses beyond stage 2 so being told you have ckd worries people when they don't need to worry. Other health professionals of course see your notes and know and this causes all the problems when the patient comes across records say at hospital. ( I used to work at a Dr's).
There are rarely any symptoms until stage 3 and sometimes not until stage 4.
Its still a nasty surprise to find out you have had it for years and no one told you though >:(
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You see this is a classic case where google helps as I like looked it up and was reassured. It actually said CKD STAGE 2 if AKI has been ruled out. The reason the bloods were taken was because of bloating and fluid retention
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You see this is a classic case where google helps as I like looked it up and was reassured. It actually said CKD STAGE 2 if AKI has been ruled out. The reason the bloods were taken was because of bloating and fluid retention
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What do you mean by AKI ruled out? I don't have fluid retention or bloating and was told that my recent tests for kidney infection were clear.
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I had bloods done this year and my results are shown on our system online. It says I have stage 2 kidney disease and no one has ever discussed it with me ! I read up that many people won't know they have it but it only goes up to stage 4?
A diabetic colleague only last week was telling everyone at work she has stage 1 because of her condition and when I said I supposedly have stage 2 she went quiet
My 2 brothers got each other's diagnosis and a lady on another forum had her notes crossed with a severe mental health patient and was then refused treatment she needed. She consulted a solicitor I think to sort it
X
Where did you read about patients not being told? Not much good if you then fail to declare it to a travel insurer through ignorance and are taken ill on holiday and need emergency treatment. Insurer then refuses payment.
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Not every GP does not tell their patient but I did come across it, especially with old lady patients where the Gp thought they would only worry and so not telling them saved them the worry as it was unlikely to ever affect them physically.
YOur GP can give you a list of diagnosed illnesses for insurance purposes if anyone was worried about forgetting or not knowing something for their travel insurance.
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Not every GP does not tell their patient but I did come across it, especially with old lady patients where the Gp thought they would only worry and so not telling them saved them the worry as it was unlikely to ever affect them physically.
YOur GP can give you a list of diagnosed illnesses for insurance purposes if anyone was worried about forgetting or not knowing something for their travel insurance.
If I did have this condition, I would want to know to prevent it getting worse. I looked at an NHS site on the condition. It had a short video of a GP who specialised in preventing further kidney problems and one of his patients. It showed how he monitored the condition and advised her on improving her diet. I still think it is a genuine error on the part of the hospital doctor but I am trying to check this.
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I had bloods done this year and my results are shown on our system online. It says I have stage 2 kidney disease and no one has ever discussed it with me ! I read up that many people won't know they have it but it only goes up to stage 4?
A diabetic colleague only last week was telling everyone at work she has stage 1 because of her condition and when I said I supposedly have stage 2 she went quiet
My 2 brothers got each other's diagnosis and a lady on another forum had her notes crossed with a severe mental health patient and was then refused treatment she needed. She consulted a solicitor I think to sort it
X
Where did you read about patients not being told? Not much good if you then fail to declare it to a travel insurer through ignorance and are taken ill on holiday and need emergency treatment. Insurer then refuses payment.
I didn't read patients aren't told
I read many people have stage 2 and are unaware of it as there usually aren't any symptoms
I don't know why it hasn't been discussed with me
The results say d if it's not AKI (I think kidney injury then it's stage 2 kidney disease based on my blood results)
To be fair the dr who ordered the tests I trust so unless I get more symptoms I'm not overly concerned
I've had many UTIs and quite a few kidney infections since puberty and a possible stone so maybe mine is from that
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Hi 10 years ago I was taken into hospital with a horrific pain in my side and found out I had polycystic kidney disease and 1 of the cysts had popped, obviously I was horrified to how this can be, I was told it was hereditary and I would have had them since birth unbeknown to me. I have always eaten a good diet and drink loads of water and that's all I have to do. You can go right through your life not knowing you have kidney disease ,if they don't cause any issues there is nothing to worry about. Xxx
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Hi 10 years ago I was taken into hospital with a horrific pain in my side and found out I had polycystic kidney disease and 1 of the cysts had popped, obviously I was horrified to how this can be, I was told it was hereditary and I would have had them since birth unbeknown to me. I have always eaten a good diet and drink loads of water and that's all I have to do. You can go right through your life not knowing you have kidney disease ,if they don't cause any issues there is nothing to worry about. Xxx
That condition is hereditary isn't it? I read about a family with it yesterday. I saw a GP about something else today but also queried this. She confirmed that they have no diagnosis of the condition in their records which is good. The recent kidney blood test which I had didn't show a problem. She wasn't the doctor to whom I wrote last week and who knew about this from last year so she couldn't say any more about my individual case. She did say that many people of middle age and onwards do have a mild version of the condition which doesn't progress. I will wait a while to hear from the other doctor. I will have to make another appointment quite soon (waiting for test result) so will make that with her if possible.
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Wow - this is an interesting thread!
I was forced to change GP recently, and one of the better things about it is that I now have access to my tests and prescriptions online. At my previous GP, I was given blood tests (full bloods and rheumatic factor, I thought) but it now appears I had kidney and liver function, bone, cholesterol etc, which was enlightening. I did not even know about the tests and was told everything was ok ::) apart from vit D which was 'deficient' (but turned out to be 38 so borderline, when I rang and asked for the number and shows as such online).
I had a kidney stone 10 years ago and apart from kidney function, that was it. I thought everything had gone back to normal, but it would appear normal includes CKD stage 2. (Also, CKD1,2 etc has changed to G1 G2 etc and is taken with ACR - albumin/creatine ratio). There was no further investigation as I was told they do not do this with a first kidney stone any more.
During the stone incident, my eGFR (estimated glomerular filtration rate) was 51 which was too low, so it was repeated and ok which turns out to be 79. From my googling the top is 100 and a normal kidney function would be 90 or over. They do not bother much unless it drops below 60, unless there are other problems such as proteinurea. This is a good website - there are tabs to click on near the top of the page which give more explanation.http://www.renal.org/information-resources/the-uk-eckd-guide/about-egfr#sthash.jlpehmvf.dpbs
My latest result was 71, which I thought was a bit rubbish. I haven't had a urine test since I actually had the kidney stone in me (apart from a pre-op at hospital, which I assume they were happy with for anaesthetic purposes).
Part of my liver function test came back with raised bilirubin - outside the guidelines, but said normal. No idea what this is about ::) Also, my cholesterol has crept back up, borderline.
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I've just looked at mine and it was 78
It has dropped since my last one within the last 4 years x
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Mine has dropped from 79 to 71 in the last 10 years - not big enough to be important though.
I am not sure how accurate eGFR is from one test to another. It is only an estimate to start with and just an indicator to go on along with further tests and symptoms. It appears you can have a really good eGFR but your kidneys are working really hard to make up the difference. I presume that this works the other way round too. :) The renal association site is quite helpful.
I have just spent the last half hour messing with this cardiovascular calculator that it linked to ;D http://cvrisk.mvm.ed.ac.uk/calculator/calc.asp You can choose to have your chart made out of smileys ;D <off to do something useful>
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Wow - this is an interesting thread!
I was forced to change GP recently, and one of the better things about it is that I now have access to my tests and prescriptions online. At my previous GP, I was given blood tests (full bloods and rheumatic factor, I thought) but it now appears I had kidney and liver function, bone, cholesterol etc, which was enlightening. I did not even know about the tests and was told everything was ok ::) apart from vit D which was 'deficient' (but turned out to be 38 so borderline, when I rang and asked for the number and shows as such online).
I had a kidney stone 10 years ago and apart from kidney function, that was it. I thought everything had gone back to normal, but it would appear normal includes CKD stage 2. (Also, CKD1,2 etc has changed to G1 G2 etc and is taken with ACR - albumin/creatine ratio). There was no further investigation as I was told they do not do this with a first kidney stone any more.
During the stone incident, my eGFR (estimated glomerular filtration rate) was 51 which was too low, so it was repeated and ok which turns out to be 79. From my googling the top is 100 and a normal kidney function would be 90 or over. They do not bother much unless it drops below 60, unless there are other problems such as proteinurea. This is a good website - there are tabs to click on near the top of the page which give more explanation.http://www.renal.org/information-resources/the-uk-eckd-guide/about-egfr#sthash.jlpehmvf.dpbs
My latest result was 71, which I thought was a bit rubbish. I haven't had a urine test since I actually had the kidney stone in me (apart from a pre-op at hospital, which I assume they were happy with for anaesthetic purposes).
Part of my liver function test came back with raised bilirubin - outside the guidelines, but said normal. No idea what this is about ::) Also, my cholesterol has crept back up, borderline.
I can't view test results online so can't check figures. I asked the GP last time but she didn't give the precise figure.
My 'fictional' test result said no protein in urea. Still waiting to hear from GP.
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I doubt they would be concerned if it was over 60. If they are referring you for lower eGFR and haematuria, that seems in line with NICE as the tests alone are not a diagnosis. You seem to need symptoms and Someone Who Knows as well to work out if there is any actual failure going on.
The eGFR comes with a whole host of other tests - creatine, albumin, electrolytes etc etc and if these are all ok then the actual number of eGFR is less important. Now I have seen the list of tests (and they are all in a very mixed up order >:( ) it is mind-boggling!! Being able to see the tests is a mixed blessing because you need a bit of help interpreting them. I am glad I can see them though.
Being able to see your notes seems to vary from surgery to surgery. I couldn't in my old one, even though they were ahead of the game with online prescriptions and appointments. When I registered with the new surgery, there was a box to tick about notes, and I ticked it and this is what happened. I figured that if everyone else had access, then it was about time I did too :) They don't seem to have done this for existing patients though.
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I doubt they would be concerned if it was over 60. If they are referring you for lower eGFR and haematuria, that seems in line with NICE as the tests alone are not a diagnosis. You seem to need symptoms and Someone Who Knows as well to work out if there is any actual failure going on.
The eGFR comes with a whole host of other tests - creatine, albumin, electrolytes etc etc and if these are all ok then the actual number of eGFR is less important. Now I have seen the list of tests (and they are all in a very mixed up order >:( ) it is mind-boggling!! Being able to see the tests is a mixed blessing because you need a bit of help interpreting them. I am glad I can see them though.
Being able to see your notes seems to vary from surgery to surgery. I couldn't in my old one, even though they were ahead of the game with online prescriptions and appointments. When I registered with the new surgery, there was a box to tick about notes, and I ticked it and this is what happened. I figured that if everyone else had access, then it was about time I did too :) They don't seem to have done this for existing patients though.
My referral is only for haematuria. It was recommended by a urology dept. at a different hospital to the one which has the 'fictional' test result for me. The GP looked surprised when I told her that they had recommended a nephrology referral. As far as I know, I haven't had all the tests which you list above.
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How many people ask what the blood tests are actually for? When I was a Med Secretary in 9 years not 1 patient queried what they were being sent for ::)
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Well for instance when this latest kidney test was done I was only aware of the test being done for ovarian cancer, sometimes they add in full blood count for instance without saying to get a bigger picture
I usually know what the blood test is for but not any they haven't mentioned
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How many I always ask what mine are for.
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Same here. I sort of thought I had been told ie full bloods and rheumatoid factor -and had two slips - so never thought to ask if there were any more.........
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I doubt they would be concerned if it was over 60. If they are referring you for lower eGFR and haematuria, that seems in line with NICE as the tests alone are not a diagnosis. You seem to need symptoms and Someone Who Knows as well to work out if there is any actual failure going on.
The eGFR comes with a whole host of other tests - creatine, albumin, electrolytes etc etc and if these are all ok then the actual number of eGFR is less important. Now I have seen the list of tests (and they are all in a very mixed up order >:( ) it is mind-boggling!! Being able to see the tests is a mixed blessing because you need a bit of help interpreting them. I am glad I can see them though.
Being able to see your notes seems to vary from surgery to surgery. I couldn't in my old one, even though they were ahead of the game with online prescriptions and appointments. When I registered with the new surgery, there was a box to tick about notes, and I ticked it and this is what happened. I figured that if everyone else had access, then it was about time I did too :) They don't seem to have done this for existing patients though.
Here is an update on this. I am still worrying about it but don't know whether i am overreacting or not. I am angry about lack of info/inaccurate info given to me. I saw the GP on Friday. At first her comments were reassuring. She looked at my recent blood test which included kidney function and gave me 2 figures. One was 90 and the other 71. She implied that they were normal. Only after leaving did i realise that she hadn't said which was which. Maybe the 90 was creatinine and the 71 was eGFR. Her next statement then threw me. She said that the Homerton hospital might not agree to remove chronic kidney disease from their records even though my GP practice doesn't have it on their records. Something to do with coding used in blood tests. She didn't explain it well and i had run out of appointment time to challenge it.
I suspect i will have to wait and ask the nephrologist in January. She is only supposed to be seeing me due to the blood traces in my urine which I had after UTI infections in September. It is a different hospital.
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This does sound very frustrating ::)
If it is any help, when my eGFR was 72, my creatine result was: Serum creatinine level 74 umol/L [45 - 84]
So if your eGFR is 90 and creatine 71, that is an excellent result, but the otherway round it is a bit off target but not by any huge amount. I hope the nephrologist is more helpful.
In my experience, it is best to see consultants with a short but clearly written list of anything you want to know or don't understand as the zoom off into their own universe and leave you behind. ;)
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This does sound very frustrating ::)
If it is any help, when my eGFR was 72, my creatine result was: Serum creatinine level 74 umol/L [45 - 84]
So if your eGFR is 90 and creatine 71, that is an excellent result, but the otherway round it is a bit off target but not by any huge amount. I hope the nephrologist is more helpful.
In my experience, it is best to see consultants with a short but clearly written list of anything you want to know or don't understand as the zoom off into their own universe and leave you behind. ;)
Hi Dahliagirl I had no idea that it was on my record until I had the endoscopy a few weeks ago. Today I emailed the nurse who gave me the endoscopy result and she said that it would have come either from my GP or possibly in error from the ENT dept in 2015. She has removed it from my online record for now but doesn't have access at present to my printed records. I will make a note of questions before I see the doctor in January. If a doctor had diagnosed kidney disease and not told me, I would be pretty annoyed.
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I doubt they would be concerned if it was over 60. If they are referring you for lower eGFR and haematuria, that seems in line with NICE as the tests alone are not a diagnosis. You seem to need symptoms and Someone Who Knows as well to work out if there is any actual failure going on.
The eGFR comes with a whole host of other tests - creatine, albumin, electrolytes etc etc and if these are all ok then the actual number of eGFR is less important. Now I have seen the list of tests (and they are all in a very mixed up order >:( ) it is mind-boggling!! Being able to see the tests is a mixed blessing because you need a bit of help interpreting them. I am glad I can see them though.
Being able to see your notes seems to vary from surgery to surgery. I couldn't in my old one, even though they were ahead of the game with online prescriptions and appointments. When I registered with the new surgery, there was a box to tick about notes, and I ticked it and this is what happened. I figured that if everyone else had access, then it was about time I did too :) They don't seem to have done this for existing patients though.
Hi Dahliagirl Here is an update. I went back to the GP today for clarification but saw a different GP. She assures me that I don't have to worry but accepted that I was angry about not having been told about this and the way in which the hospital included it in their reports without me knowing. She explained that blood tests for kidney function give an official result of CKD stage 2 for virtually everyone over about 50 because it is very rare for them to have a GFR over 90. They have records of GFR for me since 2011 and they have varied enormously. Based on the tests so far, I don't have to worry because my creatinine, urea etc. are normal.
She gave me a printout which said
eGFR (now 61 but it has fluctuated a lot between 60 and 90 - never below)
Serum Creatinine 91 umol/L [62-106]
Potassium and urea also within normal levels
I now have to wait and see the nephrologist in January. I am hoping that the blood traces in urine are more menopause related than kidney. I got into a bit of a panic last night and found myself staring at my ankles/feet and asking myself whether they looked swollen!!
Have you found that drinking more water reduces your eGFR?
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That sounds a more helpful doctor. From reading, it would appear you can have good results and still have failure (your kidneys work hard to make up the shortfall) and vice versa.
It would appear that I have had CKD stage 2 since I was 43 ;D I think that is ok if your urine test is unrelated. My husband has always had protein in his urine and once blood - he ended up having two sets of x-rays done with a dye (not sure if they do this any more) and they could not find anything. We have recently found he does have a congenital heart defect though - which he should not have got out of childhood with ??? but he is in fine health.
I drink enough water to keep my urine pale (straw coloured) during the day. The original tests were when I had a kidney stone (to check for damage), and doing this is the one proven way to reduce the chance of recurrence of stones. I have no idea if it affects test results, but there is no way I want another kidney stone - once in a lifetime is plenty >:( so I will continue to do it.
Good luck with the nephrologist.
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That sounds a more helpful doctor. From reading, it would appear you can have good results and still have failure (your kidneys work hard to make up the shortfall) and vice versa.
It would appear that I have had CKD stage 2 since I was 43 ;D I think that is ok if your urine test is unrelated. My husband has always had protein in his urine and once blood - he ended up having two sets of x-rays done with a dye (not sure if they do this any more) and they could not find anything. We have recently found he does have a congenital heart defect though - which he should not have got out of childhood with ??? but he is in fine health.
I drink enough water to keep my urine pale (straw coloured) during the day. The original tests were when I had a kidney stone (to check for damage), and doing this is the one proven way to reduce the chance of recurrence of stones. I have no idea if it affects test results, but there is no way I want another kidney stone - once in a lifetime is plenty >:( so I will continue to do it.
Good luck with the nephrologist.
I asked the GP whether I would have to declare this for travel insurance. Based on what they know so far, she said no it wasn't necessary. My eGFR is less significant because all my other tests are normal. My practice has no diagnosis of CKR on their records for me. I do wonder how many GP's do these tests on their patients and don't tell them. I was told that virtually everyone over 50 has CKD2. In your reference above to 'On reading' what are you referring to? A particular website or article?
I will wait until my January appt./further tests before actually booking anything. I have definite questions to ask the consultant nephrologist regarding the way that test results are included on patient records.
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https://www.kidneyresearchuk.org/health-information/chronic-kidney-disease
http://www.edren.org/pages/edreninfo/blood-tests-in-kidney-disease.php#GFR
I have looked at all the sites that I consider sensible - these are ok.
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https://www.kidneyresearchuk.org/health-information/chronic-kidney-disease
http://www.edren.org/pages/edreninfo/blood-tests-in-kidney-disease.php#GFR
I have looked at all the sites that I consider sensible - these are ok.
Thanks. I have already looked at the first one but not the 2nd. I have sent the first one a question today about criteria for diagnosis. Other than that I will have to wait for my haematuria appt.in January.
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https://www.kidneyresearchuk.org/health-information/chronic-kidney-disease
http://www.edren.org/pages/edreninfo/blood-tests-in-kidney-disease.php#GFR
I have looked at all the sites that I consider sensible - these are ok.
Thanks. I have already looked at the first one but not the 2nd. I have sent the first one a question today about criteria for diagnosis. Other than that I will have to wait for my haematuria appt.in January.
Positive update at last! I don't have chronic kidney disease. My eGFR is fluctuating between 60 and 90 (last reading shown to me was 73) and the other factors are normal. I had a couple more blood tests done today as a precaution to do with the traces of blood in the urine but she thinks she knows the reason behind it and that it's nothing serious. She appeared to fully understand why I was so unhappy about CKD being entered on my records as a 'diagnosis' by another hospital without further checks/referral to a renal specialist.
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What fab news Katejo, you must be so relieved! :foryou:
S x
yes I am :) Can start thinking about booking holidays for 2017 now. I will just wait for the final blood test results before sorting the holiday insurance.
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:ola:
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:ola:
I won't quite believe that i am clear until I get the blood test results and see the letter from the hospital doctor ;D. She reassured me that she would tell my GP that I didn't have CKD. I will have 1 final appointment with her to allow me to ask any further questions. It won't be until March 27th but I should get the letter within 2-4 weeks. I am really glad that she was willing to listen to my negative experience/fears. She was only due to check that my traces of blood in the urine weren't indicators of something serious (as I had already had a clear cystoscopy, scan for kidney stones and some blood tests which she normally has to arrange for new referrals)