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"Poor communication after cancer diagnosis"

About: Bunbury Hospital / Outpatients Clinic

(as the patient),

After some investigations in Perth at Fiona Stanley Hospital, I was found to have lymphoma and my case was referred to Bunbury Hospital, closer to home, for treatment by a haematologist. Unfortunately, I feel the communication since this referral has been simply terrible.

For one thing, I didn’t even know about the referral until six days after it was made, when a doctor from FSH phoned me for a follow-up. They had assumed Bunbury would contact me. I believe the doctor was surprised they hadn’t and said they were sure to contact me within the week.

I didn’t want to wait a week, so I tried ringing them myself, but I felt they made that difficult. Each time I tried, I asked for Haematology and was put through, it rang for a while and then I got a message service. I left a voice message but never heard back. One time the operator told me there wasn’t a Haematology department as such, just a clinic that was open when a haematologist was present. That fits with the message service, which always said “outpatient department”.

Fast forward a week. I tried ringing both hospitals for information and now someone at FSH told me that I had an appointment in Bunbury (first I’d heard of it). I went to Bunbury Hospital in person to ask about it and they said it’d just been made that morning. They confirmed the referral got to them 13 days prior but said that it had been waiting on a doctor in Perth to triage it and assign it a priority, and until that was done they couldn’t do anything about it.

Part of me wants to be cynical and think that this is a lie and they finally picked up the referral because of the second, angrier message I’d left the day before. But even trusting that they’re telling the truth but in my opinion, it still points to a terrible system where a referral can gather dust for nearly two weeks and apparently no-one notices (except the frustrated and worried patient).

And then the worst part: the appointment they gave me wasn’t for another 13 days. I’m not a doctor. I don’t know if these weeks are going to make any difference to my survival. I don’t even know what I have yet besides “lymphoma”. I want a doctor to talk to me and explain these things! But no… they posted an appointment letter.

If I hadn’t gone there myself, it looks like that would’ve been the only communication I ever got. As it is, I barely know more than the appointment date. The desk staff tried to help but they couldn’t tell me anything more than what I’ve laid out here. And one of them—I’m sure they were trying to reassure me, bless them, but it did the complete opposite—one of the desk staff said that the Haematology clinic is so busy that I’m lucky I got an appointment date that’s as early as it is.

Lucky! As if any patient ever wants to hear that they’re “lucky” that their lifesaving treatment won’t be delayed as long as it could’ve been.

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Response from Renny Carroll, Senior Project Officer, Outpatient Reform, WACHS South West 11 months ago
We are preparing to make a change
Renny Carroll
Senior Project Officer, Outpatient Reform,
WACHS South West
Submitted on 24/08/2021 at 4:27 PM
Published on Care Opinion at 4:35 PM

Dear TeacherT,

Please accept my apologies for the poor communication you experienced after your referral to Bunbury Hospital, particularly when receiving a cancer diagnosis. I understand this is a stressful time and you do not need the added worry of not knowing what is going on with your follow up care and the insensitive responses to your questions. Furthermore, it is simply unacceptable that it takes 13 days for a referral to be triaged.

Your care is very important to us and we would like to gather some more details, so we can investigate the issue further. If you are comfortable discussing the issue, please contact myself, Renny Carroll on 0403 936 161 or the Customer Liaison Officer on 9722 1521.

I would like to advise that changes are being made under the Outpatient Reform Program to prevent this from occurring, including the implementation of an iPhone/Android app that provides referral and appointment information for patients. We are also in the process of automating the outpatient referral process so that referrers and patients are advised when a referral is received and when an appointment has been scheduled.

Finally, thank you for providing feedback on this issue as it gives us an opportunity to make improvements to our service delivery and meet the needs of our patients.

Kind regards,

Renny Carroll

Senior Project Officer - Outpatient Reform

WA Country Health Service – South West

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Response from Cindy Stainton, Regional Director Nursing & Midwifery, WACHS South West 11 months ago
We are preparing to make a change
Cindy Stainton
Regional Director Nursing & Midwifery,
WACHS South West
Submitted on 24/08/2021 at 5:02 PM
Published on Care Opinion on 25/08/2021 at 8:53 AM

Dear TeacherT,

Thank you for taking the time to share your experience about the outpatient department and the apparent breakdown in communication between the two hospital sites.

I sincerely apologise for the breakdown in communication regarding your transition from Fiona Stanley Hospital (FSH) to Bunbury, which has left you feeling angry and frustrated. We do endeavour to provide care close to home and being seen in a timely manner is our priority.

I have investigated with both the haematologist and the Outpatients administration manager on the errors that occurred and collectively have devised a plan so this does not occur again.

There was a breakdown between the consultant in FSH and the Bunbury consultant, and the haematologist was not informed nor aware that you had been referred to Bunbury, hence the delay. The consultant has stated he will take these findings back to FSH and see how their processes can be improved.

I am also very sorry for the comment made by one of the staff in relation to your appointment date, the fact that you were told you are 'lucky' to get an appointment is not appropriate and is not reflective of our organisational values and we will take this opportunity to raise this and the other concerns you have raised at our next team meeting. The outpatients department has had a major redevelopment with a new turnover of staff in recent months, Most of who are currently getting training on outpatients administration. One of our clinical nurses, Ashlene Foxcroft, along with the administration manager will provide education on effective language used within the outpatients department and will also be provided with contact details of the Cancer Nurse.

With regards to the Haematology appointment you were given being fortnightly - All newly diagnosed patients are preferred to be seen face to face by the haematologist so that consent forms can be signed and blood forms given in the one appointment, should there be a need for treatment. WACHS South West is currently in the process of recruiting a Nurse Practitioner - Cancer to assist with the increase referrals to cancer services.

The haematologists are not based in Bunbury, they are visiting fortnightly and also run a telehealth video link clinic the alternate fortnight.

Ashlene is our clinical nurse and is happy to be contacted. Ashlene's contact details are 0448 928 112.

kind regards

Cindy Stainton

Regional Director Nursing & Midwifery Services

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Update posted by TeacherT (the patient)

Thank you Renny and Cindy for your responses. I’ve taken up Renny’s offer to make phone contact, and at his suggestion I’ll keep sharing my experiences here, both positive and negative. It helps to know that changes are already being made.

I don’t want to put too much focus on the “lucky” remark or get the staff member into trouble for it. As I said, I’m sure they were trying to be reassuring (“wow, isn’t it lucky we got you in so soon?”), not mean-spirited (“you’re lucky to get anything from us at all”). I felt it was insensitive, that’s all, and I’m glad to hear that staff will be educated on effective language.

I also want to say that I don’t mind that it was two weeks until the appointment. I get it, there’s only so much time and so many appointments available. What I wanted was for someone to talk to me and tell me that two weeks wasn’t anything to worry about, I wasn’t going to get worse or drop dead in that time. Tell me that the wait is because I don’t need to be seen sooner, not because I’ve been forgotten or you can’t be bothered. I guess maybe it sounds silly when I put it in writing like that, but it’s an anxious time and every little thing plays on your mind.

One last bit of information. I’ve been told by Fiona Stanley Hospital that the referral was triaged in four days, not 13. I suppose this doesn’t really change anything, as you said there’s already an improved system coming in around referrals, but it does make me wonder why I was told the referral had only just gotten out of triage. Was it a mistake, or is someone lying?

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