Would you bother writing a letter to GP?

[Lolacat1234]

I've recently been diagnosed with a medical condition called PUJ obstruction (where the ureter tube that connects kidney to bladder becomes restricted and kinked) which leads to a backup of urine in the kidney and the associated problems of severe pain, swelling of the kidney, frequent kidney infections and just a general feeling of being very ill. Thankfully I was referred to a brilliant urologist and am now better after an operation.

Not really sure what I'm asking here, but over the last 3 years I have had a number of blood tests at the GP that have shown a slight kidney impairment - slightly reduced egfr which has fallen into the 70s in the last 2 years. This is classified as mild kidney disease (stage 2 of 5). I have asked about this every time and was always told nothing to worry about. Probably just thirsty. Was also told they don't even worry about kidney function until it's in the 60s. So what happened happened, I ended up in A&E in March and ultimately got diagnosed with this condition, but I can't help feeling upset with the GP that they never took my concerns seriously. I asked a number of times. I was a 34 year old woman with the kidney function of an old lady and no one thought it was worth looking into. If I had waited until it was in the 60s I would probably have lost my kidney.

I feel like writing a letter to GP in a way is just about having a rant and getting it off my chest but on the other hand what if someone else comes in with the same condition?

Is it worth doing or should I just write it off and move on? I think I know the answer really, the NHS are just overstretched.

In normal times PUJ obstruction can take time to diagnose, during covid your time scale is probably ok. How ever, if it's had lasting effects on your renal function I would make a complaint.

please complaint, it will help other people.
Hope you are getting the best possible help now.

Complain. I'm all for doctors are humans and make mistakes etc but come on you need to bring this to the attention of the practice so maybe the next person is actually listened to

In Lothian we only report eGFR as over 60 so we dont even pick up stage 2.

Same in Northern Ireland

Yes I think that's what the doctor was referring to when he said we don't even worry until it's at 60. But honestly 60 is stage 3 kidney disease so I think there's something wrong there, surely there should be a focus on preserving function and picking up on any decline early on, I mean in the space of a year it went from 92-72 and still they said nothing to worry about. This wasn't in isolation either, I had been struggling with non specific symptoms for years. Not obviously related to my kidney but they have resolved since I've had my op.

I think I will at least write a letter, yes it has permanently damaged my kidney, my urologist was confident he could restore about 10% function but I will know for sure in 3 months time when I have my mag3 renogram.

Thank you for your thoughts all

Xx

I work in healthcare and I've never seen anyone recorded as stage 1 or 2 kidney disease - probably because the test isn't sensitive enough to know if you're just dehydrated. So I would agree with what you've been told.

Is there a charity for your disease? I would speak to them or kidney UK to see what work is being done to improve diagnosis then you can ask your GP or CCG to look into any recommendations.

The thing with PUJ obstruction is that it's not commonly seen in adults and usually picked up on an ultrasound nowadays in the womb - it's a common operation for babies and young children. I'm 35 and my mum never had an ultrasound so there's no telling how long I had it.

I appreciate what your saying with regards to stage 1 and 2 not being a diagnosable condition. I was just upset that I had queried it a number of times (been for at least 4 or 5 blood tests and could see it falling each time). It just felt like for doctors the number 60 is the most important, if you're not at 60 your kidney is fine, is how it felt. They told me the first time you are probably just dehydrated, so next time I made sure I drank a lot of water and the number still fell, and it did so every time. I just feel that it is more important to look at it in context than the magic number of 60 that triggers a kidney referral.

I've written a quick email anyway, not necessarily a complaint, just a quick rundown in the hopes that if it happens again they may react differently.