"Diagnosed with cancer and then felt forgotten"

I am a younger adult who has received a life-altering cancer diagnosis which is highly time-sensitive, and Fiona Stanley Hospital has failed to contact me for multiple days in a row with any further information or perform any referrals for Oncology or Haematology.

I had surgery for the removal of a lymph node for biopsy due to a high suspicion of Lymphoma. I have been managed by ENT clinic and whilst my care for the initial surgical care was excellent, I am deeply concerned with the care that I have received since.

During a telephone appointment a week later I was informed that one of my test results available so far was negative for malignancy and that I would be called a few days later with the results of the final test that was still pending, with a formal telehealth appointment also made for the following day for follow-ups.

I did not receive a phone call, despite my calling to follow up and the pathologist having reported on the results of that testing earlier. I only know that I have cancer because I organised for the pathology provider to send a copy of my results to my GP, who was then able to let me know that I had been diagnosed with Nodular Sclerosing Hodgkins Lymphoma.

Despite receiving text confirmation that I had a telehealth appointment on a certain date and time, I did not receive a phone call, and it was only because I contacted the clinic (twice) that I was then notified that the doctor had to attend an emergency and was informed that they would call that afternoon. They did not.

Whilst emergencies can happen, it is deeply concerning that there is no process in place to ensure that patients are informed when delays occur.

When I contacted the clinic in the morning on a different day I was told that they did not realise I hadn’t had my previous appointment, and that I still needed to be contacted.

It is deeply concerning that clinical care is being seemingly missed and that the systems and the people providing that care have no way of monitoring if appropriate care is being provided. If I had not taken the responsibility of following up on Fiona Stanley's failures to communicate, who knows how long it would have taken to realise the error – which could have had profound impacts on my long-term health or I feel may have resulted in my death.

I then received a text message (only after I had called twice and one excellent ENT nurse called their coordinator to follow up) to say that I would be phoned that day by a consultant– They have not called. We were assured they would.

So I have now been missed three times, whilst I have constantly contacted and tried to receive the care that I need to survive, and am entitled to.

If I had not followed up with my GP I still would not know that I have cancer. It concerns me that this means that the specialist who is supposed to be managing my care, reviewing the results and referring me appropriately has possibly not even looked at my results, or begun the appropriate care.

The pathologist reported on and confirmed a diagnosis of Nodular Sclerosing Hodgkin Lymphoma. As per the optimal care pathway for Hodgkins Lymphoma – I believe a referral should have been put through to a specialist within 72 hours, and investigation staging should be completed within 2 weeks of diagnosis. Of great concern is that it has already been several days since the Pathologist provided that diagnosis and it appears the process for referral for investigation and staging has not even begun. At the time of writing this, I feel it is fair to assume that this will not be completed till the following week at the earliest, making it a few more days.

I feel it is very clear that this is also an ongoing issue:

https://www.careopinion.org.au/83711

https://www.careopinion.org.au/93667

https://www.careopinion.org.au/84670

https://www.careopinion.org.au/94759

Fiona Stanley says their hospital vision is “Excellent health care, every time”. Well, I can confidently say that whilst my initial consult, surgery and inpatient stay were all excellent, everything I have experienced post-surgery has been consistently sub-standard, in my opinion, bordering upon totally absent health care.

Fiona Stanley says they strive to be an organisation that demonstrates high performance across all areas – and yet have repeatedly failed to make even a simple phone call to provide a patient with a diagnosis and let them know the ongoing plan.

Fiona Stanley says they value care, and yet this is completely lacking in their interactions with me. I am a younger adult, I have received a life-altering diagnosis of a disease that is time-sensitive in its management, and you don’t even have the basic care to call me and let me know and assure me that I have been appropriately referred for ongoing care. As a younger adult who is still grappling with this diagnosis, I should not have to have had to call seven times in four days and still receive no answers leading into the weekend.

Fiona Stanley says they value integrity, and yet I feel you fail to call me repeatedly after making bookings, assurances and promises to do so.

Fiona Stanley says they value excellence and yet I feel you have failed in almost every aspect of excellence, and you have not even met the minimum standards for safety and quality.

Fiona Stanley says their ambition is a future where you are the public health care service of choice. Well, this is public healthcare so I don’t have a choice, but if I did, based on my experience, it would not be you.