We’re trying to act on the lessons we learnt from the e-Patient Dave workshop and lecture. I'm looking at my last major encounter with the health system through the lens of his philosophy.

Remember the Dave deBronkart slogan from a few weeks ago? Patients do better if they are e-Patients, equipped enabled, engaged, empowered. His plea was for doctors to “let patients help” and his model was one of participatory medicine.

I want to look back on the Multi-disciplinary meeting I attended in January 2014 as an example of how unempowered I was and how little the system “let patients help”. My point is that it would have been much better for me and everyone else if I have been more empowered and engaged.

I know my surgeon was worried about me and that the team really did care (sometimes had a funny way of showing it) but all the way through I was treated as a passive patient, not an active partner. Knowing what I know now, what would I have done differently? What would I have expected from the health care workers?

Neither my son nor I knew how to deal with the MDM in a proactive way. I’d been through it before and thought my main job was to be brave (one of my vanities) and do all that was asked of me. Peter is usually the assertive type who demands answers but was strangely quiet during the process.

I was calm. Just glad to have an appointment after a nightmare five weeks from biopsy to this meeting. With all the stress and uncertainty I had caught the norovirus in late December and hadn’t been able to shake it off for an extended period. I’d been infectious and alone over the holidays, wallowing in a swamp of self pity. My husband had just been placed in a dementia unit and now my cancer was back. I was so depressed I couldn’t even ask for help. (The news that it was a recurrence arrived on Xmas Eve when I was sick and weak but of course I already “knew”.)

A delayed biopsy result (had to go to two labs?) and then Christmas. After the statutory holidays were over I nervously made contact with the hospital and asked for my biopsy results to be emailed. They indicated carcinoma in situ. Didn’t sound too bad, did it? The family were rallying around with one son even coming from the UK to help out. I felt I could cope now.

(And I love it when the statutory holidays are over. I always seem to choose that time to get sick when hospitals have a only a skeleton staff.)

I got my spirits back a bit and did several long walks with friends who were home after Christmas. I had lost a surprising amount of weight - even before the norovirus - but was fit and strong by now. This is what makes having a cancer diagnosis so confusing.

I’d had a CT scan at NSH, assuming it was just a formality. I hadn’t had lymph node involvement before and this cancer was very small. No one informed me of the results, results that turned out to be problematic. 

How had I ended up in this place with my third recurrence of HNC?

When I had my biopsy on 13 December, my surgeon was obviously concerned, gave me his card and told me I could ring his private clinic. I did a few times but the biopsy results were delayed and I was far too shy to ring the surgeon himself to ask what was going on.

I eventually handed this job over to my more confident son who didn’t know much about HNC and took the surgeon's words for it when the result came in on Xmas Eve. He was assured that it wouldn't be as bad as last time - but similar big surgery and then I would get back to what I was. (This turned out to be untrue.)

That was the message that filtered back to me but it was infuriatingly short on detail and there was no way I was going to ring the doctor now at Xmas. I knew a lot about head and neck cancer and yet I had handed my power over to my son. I don’t think that is a good idea unless you are too sick to deal with it or you have a caregiver who is well informed about cancer. What do people think?

On the other hand, I didn’t have the wherewithal to handle my own case as well as dealing with the fact that I had another cancer. How do we get around this vulnerability if we are going to be e-patients?

I fretted for five weeks. I belonged to a culture where you don't ring doctors. For my generation doctors were kings, especially consultants.  You must never make a nuisance of yourself. 

I probably would have rung a cancer care coordinator. 

Thus ends Stage 1 of my MDM story. For my confusion and distress I scold myself now. However, it’s hard to be an e-patient when you are deeply upset. I’m writing this in the assumption that other people feel like me and we can grow into more engaged patients together with the help of an improvement in the medical system.

How could the hospital have done more? 

  • Given me the name of someone to speak to who would be there over the Xmas period.
  • Had a back up system for the surgeon who showed empathy and concern. Empathy is not much use unless it can be acted on. A nurse who could have kept in touch?
  • Emailed me the biopsy results and a brief explanation.
  • Definitely should have emailed me the scan results or rung me about them. Probably the latter.
  • I needed a time frame once the results came in. Hard to do on Christmas Eve but that is the VERY time when you need it most. I had no idea about the FCT or that MDMs were always on Fridays. The uncertainty is a killer.

And hey, e-Patient also means electronic patient. Email has been around for decades. Why can’t hospitals use it more?

Stage II is next week when I describe the MDM. That is where I have more ideas as to how the hospital could have been more patient centred.

Glossary

HNC = head and neck cancer

MDM = multi-disciplinary meeting

NSH = North Shore Hospital

FCT = the mandatory Faster Cancer Treatment programme which means you have to be treated within 62 days after diagnosis.

Diana Ayling

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Comments

  • I wish we had known so much more.  But then the information on the histology report was withheld from us.  Who else could we have asked ?  We did not know there was such a person as a CNC, especially as we were totally ignorant of the diagnosis.  We do know now that if we had gone back to our GP and asked that the biopsy report be shown to us and explained things might have been different but agian, we cannot determine if the GP was given a copy at the time it was published as no copy goes to the GP directly from the pathologist.  The pathology report goes to the surgeon and if the cancer has cancer a copy also goes to the CNC - if there is one.

    This must be changed, in law.  The GP and patient must receive their own copies.

  • This is exemplary!  Your situation certainly hasn't been, but your thinking about the situation, and your re-thinking "How might I have done it differently?", are just exemplary! 

  • So glad you have explored this period of time between a serious concern that there is something wrong to high suspicion of cancer to confirmation. It is a difficult and anxious time. Technology can help and empathy and genuine concern.
  • Fantastic article, very moving. Thank's for sharing Maureen !!!

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