First specialist appointment

“What’s an FSA?” I asked at a patient co-design meeting last year. They said it was the “first specialist appointment”.

I thought about this when I read a recent article on Stuff about a man whose cancer grew so much while he waited for an FSA that he had to have half the upper part of his face removed. It’s hard to read this as a head and neck cancer patient because you know how he would have suffered.

I could complain about the shortcomings of the hospital, the clerical errors, the lack of urgency for FSAs for serious skin cancers, the toothlessness of the Health and Disability Commission and the anomalies in the Accident Compensation Corporation system but those things are a bit beyond me. I want to plead with people to be the squeaky wheel, to be their own advocates.

I know my hospital is fine-tuning the patient pathway so that patients are seen earlier but the big picture in my eyes is that big systems will always fail some of us. There is a complaints process and continual striving for improvement but accidents will always happen.

I have two points. The first is that if there is an adverse event, the system should be honest about it, inform the patient and provide generous compensation. My main point though is to spread the message that patients need to push for that FSA if they sense something is wrong and an appointment is not forthcoming.

This is where I diverge from my loyalty to socialised medicine. I suggest using the private system for that first appointment because of what happened to me when I had ovarian cancer in 1996. It’s not really about an FSA but about how seeing a specialist privately can kick start the road to recovery.

After surgery for Stage IIIc ovarian cancer I was told that it had spread so far that I would need chemo to sop up stray cells. That should give me a good remission. A cure was not possible even though all visible cancer had been removed. But when the lab results came back they found that the ovaries were okay and my cancer was of an unknown primary, probably starting in the pancreas. No adjuvant treatment possible.

At that time, Waikato Hospital had a new chemo drug, Taxol, which was mean to be very good at sucking up stray cells. I wanted that chemo. I wanted a long remission or a cure. I’d been told Taxol showed lots of promise and I was only 49 and still had a young son at home. I was so disappointed when it was cancelled.

Four months later I had recovered from the surgery and started running again. I was thin but felt well physically. I was not so great mentally.

I told my surgeon that I couldn’t accept my diagnosis and the sword hanging over my head. The surgeon said she’d write to an ovarian cancer specialist in Auckland but nothing happened for weeks so I saw my GP who rang the specialist right away and made me a private appointment for the next week. The rest is history. I was re-diagnosed with a treatable but unusual ovarian cancer and given my precious Taxol. The cancer never came back.

You’d think I would have learnt a lesson from that episode but I didn’t. Ten years later when the first signs of head and neck cancer appeared I was misdiagnosed again and trusted the reassurances I got from local practitioners. By the time I was treated my tongue was damaged by a cancer that would come back twice more. The lesson I should have taken here was to ask for a second opinion by a super specialist as I did with the ovarian cancer.

We have good health care in New Zealand. Hospital care is free. Usually it works well and people are grateful but there will always be some who fall through the cracks. I’m part of an advocacy group that wants to make that less likely to happen but I would encourage people who suspect they have cancer to make sure they get that FSA in good time, even if they have to raise money to pay for that one appointment. They can then be referred back to the public system.

Finally, I think there is a philosophical point here. We want life to be fair. We want to be looked after by a benevolent state. We don’t want bad stuff to happen to us but it can and it does. Make sure you or your loved one gets that FSA in time.