"My spouse's surgery of their kidney stones"

About: Fiona Stanley Hospital Royal Perth Hospital Sir Charles Gairdner Hospital

(as a relative),

My spouse has had a history with a kidney infection and an obstructing kidney stone that was diagnosed on a CT-scan at another hospital but not removed. They ended up on loads of antibiotics even though, I believe in cases it was not necessary as there was no infection.  In the past, my spouse has had so much antibiotics, painkillers or other medications, like their blood pressure tablets and antibiotics do not work anymore, so treatment became more and more difficult. This culminated in the second half of 2017 into dangerous kidney infection because the kidney stone was blocking the ureter. During the next day, my spouse developed a high fever. In the afternoon they went to Royal Perth Hospital (RPH) for surgery. Thanks to that fever, otherwise I feel they most likely would have been sent home again with more antibiotics and painkillers!

In the night they inserted a stent to keep the ureter open. They could not laser that stone because of the infection. My spouse was discharged a few days later with loads of antibiotics enough for three weeks! Although I believe they had no infection! The hospital promised my spouse to laser the stone within 4 to 6 weeks.

In the following months, my spouse suffered unbearable pain because of the stent. They had to go back to RPH to the Emergency Department. They were sent home but had to go back the same day because of the pain. The hospital admitted they were discharged too early the first time. My spouse was admitted to the ward but discharged the next day. Also, they gave my spouse Fentanyl as pain medication, which is not allowed to be given to them because they have a stroke condition.

Later, my spouse got bacteria again and according to a nurse, it was the stent to blame, because it was left too long inside. My spouse was forced to take more antibiotics otherwise they threatened not to do the surgery! A few months later, my spouse got their final surgery, stone lasered and stent removed. They were sent home with more antibiotics. A bad experience was that they did not get their breakfast at the usual time. When we asked for it, I believe they got a left over from somebody else!

This is just the beginning of a story which becomes most interesting and which ended in an unexpected way! During the following 6 months, the pain did not go away, so we decided to do another test. At another hospital, my spouse had an ultrasound done. To our great surprise and shock, they detected 4 large kidney stones again! They measured: 9x12mm, 10x10mm, 9.6mm, 7x10mm.

We contacted RPH. The Urologist told me that they will contact us within two weeks’ time. It never happened. The pain became worse and worse. We decided to go to a private hospital. Perhaps they could do something much sooner. In this hospital, they made another CT-scan which confirmed 4 large kidney stones. My spouse stayed overnight but the Urologist did not want to do the surgery because if anything went wrong there was not the necessary care in this hospital. So, the Urologist referred my spouse to Fiona Stanley Hospital. After a few days, we were called for a pre-admission checkup. They were treated as urgent and category 1.

Shortly after this, my spouse was in so much pain that the ambulance brought them to the Fiona Stanley Hospital Emergency Department. My spouse was screaming from the pain and immediately admitted for surgery the next morning. Another CT-scan confirmed 4 large kidney stones. My spouse had to fast from very late at night. The next morning, I went to the hospital early in the morning to help my spouse because they are disabled. They were ready for surgery, which was confirmed in their file. In the morning, around eight hours later, the Head of Urology came into the room with a lot of other people. They told my spouse straight away that the surgery was not going to happen and my spouse must wait another 6 months. Although my spouse was in so much pain we were sent home! They were lowered from category 1 to category 2. This without explanation.

All this time spent in Fiona Stanley Hospital, my spouse did not get any food until discharge later in the afternoon. My spouse was referred to Sir Charles Gairdner Hospital because the waiting list was much shorter according to the Head of Urology. After 2 weeks my spouse was in so much pain that we went to the Emergency Department at Sir Charles Gairdner Hospital. There they were admitted and the hospital made another CT-scan, where they found the same kidney stones but much bigger. My spouse stayed overnight and was sent home with a lot of pain medication that I feel were useless because of the side effects, thanks to the antibiotics in the past, their immune system was badly damaged.

One week later again terrible pain. This time we went to a different hospital for further treatment. My spouse could not sit down, sleep, or make any movement. Another CT-scan was made, which confirmed the large kidney stones caused the pain. My spouse was sent home with more useless pain medication.

After 2 days my spouse suddenly remembered their mother's home remedy against kidney stones from a long time ago. My spouse took the home remedy 1 month long until their surgery. They improved a lot and after 3 weeks tiny pieces of kidney stones came out! But because we were not sure about the result of this home remedy we did not want to cancel the surgery. We had a pre-admission checkup coming. There the doctor told us that before surgery a CT-scan would be made. Any medical situation can change.

On the day of surgery at Sir Charles Gairdner Hospital, no CT-scan was made, no blood or urine test was made. A very strange thing because before coming into surgery the hospital told us my spouse had still a bacteria and put them again on antibiotics. But they did not check anything. The doctor would perform the surgery who also knew that 4 stones were a big job. When my spouse came out of the surgery they brought them on the ward.

In the evening, the doctor came relaxed and laughing into my spouse’s room. They told us it was an easy job. They only found dust and grit, no kidney stones! The doctor even showed this on their computer. I believe this confirmed that my spouse’s mother’s home remedy worked! So, when I asked the doctor the reason for this strange outcome, they told us a weird story. That when a CT-scan is made and my spouse laying on their side, all the dust and grit came together and this will show as a kidney stone. A story I feel no one can believe because all these kidney stones on CT-scans made in so many hospitals, they all showed 4 large kidney stones. All the time growing in my spouse! And on top of this, why this dust and grit did not come out half a year ago. Stones do not disappear by themselves!

My spouse went home and I decided to write the doctor who performed the procedure a letter explaining our side of the story, how my spouse used the home remedy. The doctor never gave us any reaction. After I put a lot of pressure on this same doctor, they invited us to come to the hospital where they would explain more. We never went, because I feel the doctor could give their explanation by email, which they never did.

After that, I wrote a letter to the Head of Urology, explaining the use of the home remedy to dissolve the kidney stones. And also, we asked this person why there was never a CT-scan made before surgery. I feel it could save my spouse a surgery. I also asked the Head of Urology about the antibiotics my spouse had to take before surgery.

This person replied that they assumed these kidney stones were still there so a CT Scan was not necessary. The antibiotics were given as a precaution. They never gave any reaction about the use of the home remedy!

A few months later, we received a hospital bill of several thousand dollars. This in regards to the surgery. Half of this bill was covered by my private health insurance. We had to pay the gap. I feel we had to pay for something the doctor never did. I wrote a letter of complaint to the hospital but were told by the money collector that it can take up to 1 year to get a reply!

To end this extraordinary story. My spouse feels discriminated against by all the hospitals.

Responses

Response from Lesley Bennett, Executive Director, Royal Perth Bentley Group

picture of Lesley Bennett

Dear echods55,

Thank you for sharing your experience with us so that we have the opportunity to respond and assist you. I am sorry that your spouse has endured a prolonged and painful experience and that they were not able to access timely treatment at Royal Perth Hospital. Unfortunately due to a number of reasons, there can be delays for urology procedures at Royal Perth Hospital resulting in referrals to other hospitals. Wait times for procedures are something that we are working to improve.

I am deeply concerned about the potential error made with regard to prescribing your partner medication that was not safe and the complications you describe with infection and early discharge, and would like the opportunity to conduct a review of their treatment. I invite you to contact our Consumer Engagement Unit on 9224 1637 so that we can talk with you and get further information. We would also like to offer to be the first point of contact for your concerns relating to each of the hospitals you mention, and with your agreement, we can then share your details with Fiona Stanley Hospital and Sir Charles Gairdner Hospital so that you don’t have to ring each of the hospitals separately.

Again, I apologise for your experience and invite you to contact us so that we can speak with you and your spouse and facilitate contact with the other hospitals that you mention.

Yours sincerely

Dr Lesley Bennett

Executive Director

Royal Perth Bentley Group

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Response from Neil Doverty, Executive Director, Fiona Stanley Fremantle Hospitals Group, South Metropolitan Health Service

picture of Neil Doverty

Dear echods55,

Thank you for taking the time to share your story about your recent experience at Fiona Stanley Hospital I was concerned to read of your spouse’s experience and understand that this experience must have been distressing for both of you.

I have passed your feedback onto our urology team, as I know they will want to review it. We would like to review the detail of what occurred during your spouse’s admission but require consent to do so. As the other hospitals have advised we would like to make sure that we undertake a coordinated response to your concerns and have agreed that you can contact the Consumer Engagement Unit at Royal Perth Hospital in the first instance, they will then share your information with us so that you don’t have to contact multiple hospitals. They can be contacted on (08) 9224 1637.

Alternatively, if you or your spouse could contact the FSH Patient & Family Liaison Service directly on 6152 4013, we can get some more details to conduct our investigation.

I am sorry to hear that the Head of Urology told your spouse they would not receive the surgery for 6 months and re-categorised them from a Cat 1 to a Cat 2 with no explanation. Once we have your more details I can ask the Head of Service to investigate and provide a response. I am also surprised to hear that your Spouse was not given any food until discharge, I do apologise for this oversight and I will provide this feedback to the relevant team so that they can improve upon this in the future.

I look forward to hearing from you.

Kind regards

Neil Doverty

Executive Director

Fiona Stanley Fremantle Hospitals Group

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Response from Janet Zagari, A/Executive Director, Sir Charles Gairdner Osborne Park Health Care Group

picture of Janet Zagari

Dear echods55,

Thank you for sharing the difficulties you have experienced with seeking treatment for your spouse with us. I am sorry that this has been such a long and distressing journey for you both and hope that your spouse is doing well. I sincerely apologise that we’ve left them feeling discriminated against. We have clearly let them down in relation to the care and compassion we pride ourselves on.

As Patient Opinion makes sure your identity remains confidential, I am unable to fully investigate your concerns based on your story alone. Given your concerns relate to multiple hospitals, we have all agreed that you can contact the Consumer Engagement Unit at Royal Perth Hospital in the first instance. With your agreement, they will then share your information with us so that you don’t have to contact multiple hospitals. They can be contacted on (08) 9224 1637. Alternatively, you are welcome to contact the SCGH Patient Liaison Service on (08) 6457 2867.

It is sensible to be concerned about the overuse of antibiotics. This is a major issue worldwide. Sir Charles Gairdner Hospital runs the Healthy Antimicrobial Prescribing Initiative (HAPI) which monitors and guides antibiotic use to ensure it is appropriate. From what you describe it seems your spouse has a complex medical history and given their long history of kidney infection, the prescription of antibiotics prior to their operation as a preventative measure to ensure your spouse did not develop an infection following the surgery would seem appropriate.

We also try to ensure imaging such as CT Scan is only used when necessary to minimise radiation exposure. As your spouse was transferred to Sir Charles Gairdner Hospital and had undergone recent imaging there was no need to perform a further CT scan. I apologise that you were told that there would be a repeat CT Scan and that you feel that a follow-up CT Scan would have demonstrated surgery was no longer required. Imaging does have its limitations and I regret that the explanation of why the CT Scan diagnosis was different to what was discovered during surgery failed to meet your needs.

Doctors rely on best scientific evidence in their care of patients and most are unlikely to pass comment on something such as home remedies which haven’t been proven in clinical trials. I am happy that you and your spouse feel your mother-in-law’s remedy was beneficial.

In relation to your bill you are welcome to contact the Coordinator of Accounts Receivable, Emma, on (08) 6457 0931.

I hope that this reply goes some way to helping you better understand why decisions were made in relation to your spouse’s care.

Kind regards,

Janet Zagari

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Response from Lesley Bennett, Executive Director, Royal Perth Bentley Group

picture of Lesley Bennett

Dear echods55,

I am happy that we were able to make contact with you through our Consumer Engagement Unit. I note that Royal Perth Hospital received a complaint from you back in 2017 about the same issues you have raised in this forum and this was investigated and fully responded to at the time. Our team in the Consumer Engagement Unit have now passed your details along to Fiona Stanley and Sir Charles Gairdner Hospitals as agreed and I am confident that they will work with you to address the latter parts of your complaint. I wish you and your spouse the best going forward.

Kind Regards

Dr Lesley Bennett

Executive Director

Royal Perth Bentley Group

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Update posted by echods55 (a relative)

I asked the Patient Liaison Officer at Charles Gairdner Hospital to arrange an appointment with the doctor who I felt was responsible for my spouse's seizures and very bad behaviour because they had to take Keppra tablets as medication.

I felt the Patient Liaison Officer was not very cooperative and wanted to restrict my list of complaints. Also they wanted to be there with this appointment. I believe this is so they could stop me from further questions to the doctor. I think a ridiculous way to freedom of speech.

Because there are many private matters to discuss and I believe the Patient Liaison Officer is not qualified as a doctor, I feel it is my right to ask them to stay out of this.

Response from Janet Zagari, A/Executive Director, Sir Charles Gairdner Osborne Park Health Care Group

picture of Janet Zagari

Dear echods55,

At Sir Charles Gairdner Hospital it is usual practice for the Patient Liaison Officer to organise and attend meetings with patients to provide support and assist in the resolution of complaints.

In the response letter to your complaint you were offered the opportunity to meet with a doctor to discuss your concerns related to the medication provided to your spouse, other matters related to the complaint have been investigated. The Deputy Nurse Co-Director, Medical Division has kindly agreed to coordinate your meeting with the doctor to discuss medication options for your spouse. Please call 64574959 to arrange a suitable time

I am really sorry that to hear that we were unable to address your concerns to your satisfaction, you may wish to contact the Health and Disabilities Complaints Office (HaDSCO) on 6551 7600 to request an independent review.

Kind regards

Janet Zagari

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