So... Here's what I think.

After reading my last Post, a friend replied by sharing a News Article from RNZ and she asked this question…

“I've been thinking a good deal about what you've shared in your last two blog posts. I can see from your experiences that there are some profoundly disturbing aspects to the randomness of treatment & consultation processes that you have experienced. And the lack of coherent flow of information is woeful & unacceptably stressful & burdensome to patients. So... I imagine that this re-frame (see link to article below) would be a very good move. Would that be true?”

You can read the article here…

https://www.facebook.com/100000828565998/posts/2266951403342456?sfns=mo

Catherine, thank you for this. I’ve been thinking about how to reply for a few days now, and while I don’t normally express my own views and opinions in a public forum, this question is probably a good excuse for me to tell everyone what I think.

So, paring back the article to a fundamental question…

Should there be a National Agency to oversee Cancer Care in New Zealand?

My answer would be – Probably Not.

My reasoning…

I’m not sure what the formation and operation of such an agency would contribute to improving a cancer patient’s pathway. While walking my own path, I continue to meet others on their journey who have experienced confusion, frustration and ongoing costs due to “disconnects” between services. I don’t think a National Agency would alleviate these issues to any great extent.

If I was King of New Zealand, I would establish a Health Service Patient’s Advocacy. Not just for cancer patients, but for all major medical events where a person requires ongoing interaction and care from the Health Fraternity. Within this Advocacy would be people who have some experience with “The System”. They might be ex-patients, or ex-medical professionals, but they would need to have some form of experience with the Medical Treatment Pathway and know, without reservation, that they are to act in the best interests of the patient. They would, with the patient’s permission, be given access to information to assist each individual as they navigate their own course. They would also be able to create bridges to remove the “Disconnects” that patients face.

In my experience, there are two different types of “Disconnect” that occur. One is between Departments within a DHB. For example; Ophthalmology and Radiology, where delays and miscommunication seem to be almost the norm. In my case it took the intervention of an ORL Nurse, advocating for me, to get me back onto the right path. Even then, instead of having a CT Scan of my head and eye, I received a “full body” scan. Gotta say, the Eye Specialist was a little surprised to be looking at a scan of my abdomen.

The other type of “Disconnect” is between different DHBs. There doesn’t seem to be any ongoing communication pathways between DHBs whatsoever. In fact, quite the contrary. Staff within each DHB seem to almost go out of their way to ensure the least amount of information possible is shared with their counterparts at other DHBs.

Case in point: I was under the care of a Medical Team in Hawkes Bay who referred me to a Medical Team in Auckland for treatment. While in Hawkes Bay, the level of communication between all concerned, including my GP was excellent. While under care in Auckland the level of communication diminished noticeably. I sometimes didn’t have a clue what was going on, nor what the plan for me was going forward. At one point I asked some of the Auckland Team members if they were keeping the Hawkes Bay Team appraised of my progress. The short answer was: “No.” It seems the protocol was that information was only sent back to the Hawkes Bay Team at the end of my treatment. It turned out that, after being treated for an infection for two weeks, then undergoing an eleven hour surgery, followed by a period of recovery, the information that was sent back to the Hawkes Bay team and my GP was a two page summary of my treatment.

When I got back to Hawkes Bay, there was no one in “The System” who knew what had happened to me while I was in Auckland, nor did anyone know what further treatment was required going forward. It took weeks, and a weekend trip to the Emergency Department, for me to get the attention of people in Hawkes Bay who, in my mind, should have known what was required, even before I was discharged from Auckland. This wasn’t just a single incident - it involved the Maxillofacial Clinic, the Ophthalmology Clinic, the Physiotherapy Department, Radiology and my GP.

It would be great to have someone to act as a “go to” person. To make sure there were no unnecessary delays in appointments or treatments, and to act as a liaison between different DHBs and departments. As a patient, it would be very reassuring and comforting to know that there was one person you could “go to” for any and all issues relating to your treatment.

After reading Trevor Flood’s story, I really wonder what his outcome might have been had there been someone in “the System” acting on his behalf, and being able to intervene when things became “too hard”.

To read Trevor’s story, click on the link below…

https://www.tvnz.co.nz/one-news/new-zealand/builder-suffers-brain-damage-after-receiving-pain-relief

Somewhere in these words is my answer to the initial question. I think the creation of a National Cancer Agency would simply add another level of ineffectual and expensive bureaucracy that wouldn’t address the needs of patients. But taking a broader view, I believe there is another issue in New Zealand that is having an ongoing detrimental effect on patient care - being, the ludicrous number of District Health Boards we have in this country. But perhaps that’s a discussion for another day.

And me – I’m still sitting around at home waiting to find out when and where I go to from here. Is it Palmerston North for Radiation, probably followed by more surgery on my eye? Or is it Auckland for Radiation, after which, hopefully, I get to keep my eye.

I wonder who I should ask to find out?