"Bad care for kidney cyst in leicester"

About: Leicester General Hospital / Nephrology Leicester Royal Infirmary / Gastroenterology

(as the patient),

I had had digestive problems for quite some time, and after referring to my GP there was still no answer but then I noticed a hard lump under my right rib-cage. Due to my symptoms being digestive, I was referred to the colorectal dept at Leicester Royal Infirmary, and after a scan I was informed I had a "massive" kidney cyst and it was referred over to the General Hospital Leicester.

Now a kidney cyst is nothing, but one the size of mine, 13.5 cms, requires investigating, or so says the BMJ. However I was given an appointment for nearly a year later. From my medical notes, which I obtained much later, they clearly indicated malignancy under the Bosniak classification system.

Under NICE rules a cancer diagnosis requires treatment to begin within a month. If they don't diagnose you, they can just ignore the results, no matter how clearly diagnostic they are. That's what happened to me.

I couldn't go on with the digestive problems so most unwillingly my GP managed to persuade them to action. I can see from my blood results that my system was largely giving out by that stage, and my immune system was nearly gone. To my surprise I noted that I was given an HIV test, which no one told me or asked me about. Under NICE rules, not only should my consent be sought, but I should be counselled too, as it would invalidate any life insurance I had. I was clear, but the damage was done.

I was slightly alarmed when the anaesthetist lifted my operating gown to give me an epidural as no one had checked my back at the pre-op and I have a large mole right where he had been indicated to put the needle. He put the needle in a vertebra lower, which as the incision was the width of my body under my ribcage had no effect.

I wouldn't have minded but a nurse had been detailed to run the tip of a tissue across my belly, presumably to check that the anaesthetic was working. The pain was blinding and with 49 metal staples across my abdomen I reared up on heels and head (something I can't do when well) and slumped semi-conscious.

I tolerated it until someone, I presume the surgeon came along, and he attempted the same thing. He nearly lost an arm. I didn't see his face as I was only intent on not allowing his arm to cause blinding pain to me.

They then brought along the 'pain team', a special team who specialise in providing pain relief and I got a manual morphine pump. By now I knew how to control the pain - by praying for sleep and not moving a muscle, and they were discomforted by my failure to use it and I tell no lie when I say the nurse leaned over and whispered to me "We can tell how much you use the morphine and if you don't use it more we'll take it away".

I won't detail any more, other than to say that I feel the cancer services in Leicester are a shambles.

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Response from Leicester Royal Infirmary

Thank you for taking the time to leave your comments about your experience at Leicester’s Hospitals. We realise a significant amount of time has passed since you posted your comment and we would like to sincerely apologise that we did respond to in a timely manner. We have since updated our process of responding to reviews posted on NHS Choices and are now committed to making sure we respond to comments within 21 days of the date they are posted. If you would still like you comments to be investigated, please contact PILS on 08081 788337 or online at www.leicestershospitals.nhs.uk/patients/patient-welfare/patient-information-and-liaison-service/contact-form/. If you have any other specific questions or comments, please feel free to contact us on communications@uhl-tr.nhs.uk. Thank you Communications Team Leicester’s Hospitals

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