kidney stone and utis

Posted , 2 users are following.

Please someone HELP! I have as large kidney stone.

I saw a urologist in Cheltenham last month.

He said it would be very difficult to get to the kidney stone as it is in a very awkward place.

However he said he would consult with a colleague in Bristol.

The next week I had a phone call from him saying Bristol had looked at the scan and think they can get to the stone PCNL (Keyhole).

Great I thought.

I started with a lot of pain and another uti on Sunday so yesterday I decided to ring Bristol and ask how long the waitilng list was to see the surgeon there.

I was told I was not on the  waiting list to see him and he has referred me back to Cheltenham.

So I spoke to the urologist's secretary at Cheltenham and she was completely unaware that I had been referred back to them!!!!!

She said she would establish what was going on and get back to me.

This is the sixth person I have been referred to in the last 6 months.

I really cannot go on like this.

Any bright ideas about where I go from here and what to do would be gratefully received. Thanks for listening to me and reading this.

Sarah

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8 Replies

  • Posted

    Hi sarah

    I have had similar experiences with no-one wanting to take ownership of managing my stones.

    My thoughts are for you to contact the nhs patient advice and liaison dept. ( it comes up on Google)

    After both tubes were blocked and 3 surgeries in Feb I've still been left with 3 stones in my kidneys and told to see them next year" May ". I do know what you're experiencing and feel for you.

    All the best and I hope you get some answers.

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    • Posted

      Thanks mike I will do this.

      I am also ringlng Cheltenham this afternoon as they have not got back to me.

      I have also writeen to one of our local councillors who I know and hopefully he will be willing to get involved.

      I find the local surgery here unwilling to push this operation forward.

      Hope you get some better luck with your stones. One should not have to go through all this really.

      My thoughts are also with you.

      Take care and keep in touch

      Fellow sufferer

      Sarah

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    • Posted

      Apparently I have not been referred back to Cheltenham. It is all to do with finance. Because I llive and am registered with a GP in Wales I have to go to my GP and ask him to apply for funding from NHS Wales for me to be treated in England. It does not make sense to me as I think this does not apply if I am treated in Cheltenham!!!

      So I am seeing GP on Thursday and if he can get the funding I am going to Bristol. I am contacting the urologists secretary at Cheltenham before Thursday to check that I can go back there if my GP cannot get funding as I have already seen 5 people about this kidney stone and simply cannot face the thought of starting all over again with someone else.

      To me it is all very MAD!!!

      Do let me know how you are and keep in touch

      Sarah

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    • Posted

      Hi Sarah,

      So sorry to hear your troubles.

      Unfortunately departments don't want ownership of patients these days. ( well, that's my feelings anyway)

      I hope it gets sorted asap for you.

      All the best

      Mike

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    • Posted

      That is absolutely brilliant news Sarah. Thrilled for you.

      My doctor is also pushing for my remaining three stones to be lasered asap instead of about June next year..

      Keep us posted 😊

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    • Posted

      As I hasd not heard from Bristol on Monday I rang them to check where I was on the list to see the consultant, only to find I was not on the list to see him at all because they had not yet received confirmation that the funding had been approved although they had asked for confirmation severa times. They gave me a phone number to ring, which I did and asked why they had not sent confirmation to Bristol. I made it clear that it had to be done that day.

      I then ended up going to A and E again on Monday because of the really bad pain .

      They kept me in overnight and the pain was better by yesterday morning but I made it clear to the doctor that I was not prepard to come home until I was on the waiting list to see the consultant at Bristol. (I should not have to be doing all this myself) I had right names and telephone numbers with me so a nurse rang Bristol. Not only am I now on the list (less than 24 hurs later!) but they have given me a date towards the end of October to see the consultant. It makes me wonder when this would have happened if I had not rung Bristol on Monday. Really fed up with dealing with not only the pain of the kidney stone, but having to chase people up all the time, it really is a full time job!!!

      Enough about me, how are you doing? Hope things are OK for you at the moment.

      Keep in touch

      Sarah

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  • Posted

    Hi sarah,

    I am so sorry to hear about your experience.

    This is also in my experience the norm. 90% of my troubles have been through admin and office staff.

    I am really pleased you stuck to your guns and are getting results .

    My doctor has stepped in and said its ridiculous that i should wait a year with 3 stones left in both kidneys and is pushing for earlier surgery on my behalf.

    Its easy to throw in the towel so well done smile

    Best wishes

    Mike

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