My husband was diagnosed with throat cancer by his GP and he was referred to a private ENT specialist. The GP didn't tell us we could opt for either private or public treatment at that point, and we were reeling under the news of the diagnosis and didn't think to ask. When we saw the private ENT, he examined my husband and ordered extra investigations and described the most likely treatment option (concurrent chemotherapy and radiotherapy with a slim chance that robotic surgery might be an option) and explained that he works in the public health system as well as in private practice. He offered to present my husband's case to the Fiona Stanley Hospital ENT Multidisciplinary Team to enable a team of experts to provide an opinion about the best treatment approach. My husband agreed. We waited for details of when his appointment at FSH would be and where to find the clinic. After receiving no further information, my husband rang the ENT's rooms twice that Friday to try and find out what time on the Monday he should be at FSH and where the ENT clinic is located. He finally received a one sentence email over that weekend from a nurse he had spoken to on the Friday telling him to be at the ENT clinic at 9 am on the Monday. When we got to FSH, we discovered the directions she had given for the location of the ENT clinic were wrong. Luckily the FSH main desk concierge directed us to the right place. We then waited for over 2 hours to be seen. A doctor in scrubs came out and introduced herself by her first name. She explained that she would ask my husband some background information for their records and that then between 10 and 12 people would come into the room and most of them wouldn't speak to him, they would just be there to observe. She said it could be pretty confronting. My husband was placed in a special examination chair in the middle of a room that was about 4m x 4m. I was offered a visitor's chair off to the side of the room. When the team came in, no one checked if my husband was willing for the observers to be there. The ENT we had seen privately greeted him, then the original doctor in scrubs squirted an anaesthetic spray down his nose with very little introduction or explanation and a registrar threaded a camera on the end of a long cable down his nose to his throat (he had had the same examination in the ENT's private rooms less than a week earlier). I didn't see the registrar talk with him at all. I guess she must have... I hope she did! At least 6 people stood between me and my husband, seemingly craning their necks to look past his head at a TV monitor behind him where there was a picture of the back of his throat displayed. The private ENT gave a brief overview of his case history for the team and then they all appeared to lose interest in the monitor behind my husband's head and went to view pictures of PET (positron emission tomography) and CT scans on the computer in the corner of the room where the original doctor in scrubs had been entering some notes about my husband. The private ENT then said my husband should have chemotherapy and radiotherapy (no more information than he had given us in the original consult). He said he would make referrals to medical oncology and radiation oncology and that they would be able to tell him more details about the treatment. I asked some questions I had researched earlier, which he answered politely and carefully. These included the all-important question of whether we should be seeking private or public treatment (we're not rich, by any stretch, and weren't at all certain our private health insurance would cover treatment costs) and where my husband would be treated if he accessed public or private treatment. We were told that because we lived north of the river, he would be transferred to SCGH if he accessed public treatment and would probably have to wait longer to access treatment as he would have to go through their multidisciplinary team review process as well. When I realised his treatment could be delayed by us having seen a private ENT and been to FSH, I became tearful. After a few minutes, my husband reached across between the observers to pull some tissues from a box on a side table for me. None of the clinicians commented on my tears. The observers all left the room in dribs and drabs. None of them thanked us for letting them observe, and none of them had said hello or said goodbye. There was a cancer nurse coordinator who had come in with the rest of the group and sat down next to me and introduced herself while my husband was being nose camera-ed and told me the disciplines of the different team members. I appreciated her presence and information, but couldn't help feeling it would have been good if someone had given that information to my husband. I came away in tears and feeling angry and frustrated and like my husband had been treated in a dehumanising and disrespectful way as just a 'case' rather than a person who had recently received a life-changing and life-threatening diagnosis. I got a strong feeling he had just been used as a teaching aid rather than receiving input that actually advanced his care. A week later, we found out that the private referrals to medical and radiation oncology hadn't been sent despite us having received an email confirming that both public and private referrals had been made. It turned out the private ENT thought FSH was sending them and FSH thought he was sending them from his private rooms. I think the FSH ENT MDT process needs a huge overhaul. In my opinion, patients should be asked rather than told at the outset that they can have observers present. I think crowding somewhere between 10 and 15 people into a room that size is grossly inappropriate and overwhelming to the patient (and probably also a fire hazard). Especially since there was literally standing room only while they were in the room, so they all towered over him. I learned later that my husband didn't have a 9 am appointment that was 2 hours late. Apparently all the patients for that clinic are told to arrive at 9 am and I believe are just expected to wait for hours until the team gets around to seeing them. The system seems set up for the clinicians' convenience and benefit, not that of the patients. I found the whole experience disrespectful and alienating. I expected much better from WA's flagship, state-of-the-art, highly expensive new tertiary hospital.
"Multidisciplinary team review at Ear Nose and Throat clinic."
About: Fiona Stanley Hospital Fiona Stanley Hospital Murdoch 6150
Posted by What about the patient (as ),
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