"Multidisciplinary team review at Ear Nose and Throat clinic."

About: Fiona Stanley Hospital

(as a carer),

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.

Responses

Response from Janet Zagari, Executive Director, Fiona Stanley Fremantle Hospital Group, South Metropolitan Health Service

picture of Janet Zagari

Dear What about the patient,

Thank you for taking the time to provide feedback regarding your husband's recent ENT appointment.

I am very sorry to hear that your experience with our health service left you feeling upset, disrespected and alienated at what is a very stressful and confronting time for you both.

You have raised a number of issues in your story that are of concern to me and which I would like to explore further before I provide a more in depth response. I will get back to you in the near future.

Once again, thank you for your feedback.

With best wishes to you both at this challenging time.

Kind regards,

Janet Zagari

A/Executive Director

Fiona Stanley Fremantle Hospital Group

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Response from Janet Zagari, Executive Director, Fiona Stanley Fremantle Hospital Group, South Metropolitan Health Service

picture of Janet Zagari

Dear What about the patient,

Thanks again for taking the time to share your story regarding your husband's recent appointment, providing a valuable patient and family perspective of our service and bringing to our attention some of the areas where we can improve. Firstly can I re-iterate my apology that your experience with Fiona Stanley Hospital left you feeling angry, disrespected and frustrated. I have looked more closely into the running of our ENT Multidisciplinary clinic and I wanted to share with you the information that I have gathered that may provide you background and hopefully answer some of the concerns you have raised in your story.

A Multidisciplinary Team (MDT) review for new cancer patients has been shown to contribute to better outcomes for patients and the clinic is structured in such a way that all members of the team are involved with the goal of identifying the best management plan options for each and every patient. The clinic sees about 400 new patients each year. Some patients who are seen in private rooms would not otherwise be able to access this and so are presented at the Fiona Stanley Hospital MDT clinic. We will remind all our specialists that it is important that their rooms give correct information to the patient to make sure that they can find the clinic and know when their appointment is. We will also ensure that at the end of the MDT everyone is clear about who will be sending referrals for further treatment.

At the start of the clinic, all members of the team meet to talk about each patient before the patients are seen. The test results and images are reviewed by the whole team, which includes the Surgeons, Radiation Oncologists, Radiologists, Specialist Nurses, Dietitians, Speech Therapists and other specialists as needed. The whole team have input into the discussion about each patient, at such time identifying any questions that need to be answered when seeing the patient and those patients that require further tests or investigations. All patients are asked to come to the MDT at the same time. There are a few reasons for this including; if more tests are needed, patients are able to be sent for these and are still able to be seen before the end of the clinic and, if the team needs more or less time with different patients this can be accommodated. The MDT clinic is structured this way due to the number of specialists that need to see the patient at one time and to make sure that all patients can leave the clinic with a clear treatment plan rather than having to come back another day. I understand that this can inconvenient to patients, some of whom will have to wait a long time and I sincerely apologise for this. In view of your feedback we will ensure that all communication regarding MDT clinic appointments clearly states that there may be up to a 4 hour wait for patients.

In the clinic, patients are seen by a large number of people, all of whom are involved in their care. This is to make sure that everyone is aware of the patient's needs and the plan for their treatment. We try to explain this to patients and families beforehand, but it is clear that we got this wrong with you and your husband and I am sorry that this was your experience. We will use the feedback that you have provided to make changes to improve the way we explain this to patients in future, and to make sure that all members of the team introduce themselves and their role to the patient.

Again, I appreciate you taking the time to tell us your story. I am very sorry that the clinic was an overwhelming and dehumanising experience for you; your feedback will be used to improve the way that we care for patients in the MDT clinic and to ensure that we better support patients and their families who are understandably distressed by a cancer diagnosis.

If you would like to meet or discuss this further with me please don't hesitate to call me on 6152 3121. I hope that your husband's treatment and recovery goes smoothly and I wish you both well for the future.

Kind regards

Janet Zagari

A/Executive Director

Fiona Stanley Fremantle Hospitals Group

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