So... What happens now?

A couple of different people that read my little missives have asked me what I think about particular aspects of the Health System, and more specifically, how I feel about the new proposed Cancer Agency. I’ve been kinda reluctant to do this, ‘cause I know my views are heavily biased by my own experiences. But, after reading David Downs’ book “A Mild Touch of the Cancer” (there’s a link to this book on the right) and watching the development and progress of Blair Vining’s petition, I thought – why not. Maybe my thoughts will resonate with some of you, and I guess even if I manage to get a few of you nodding as you read this, it’s probably worthwhile.

I think this is going to turn out to be quite a negative rant, (which is not my favourite kind), because there’s some issues I keep dwelling on, and maybe the only way to get them out of my head is to write about them.

So… for those of you still reading, here we go.

There’s been a lot of press lately about “Post Code” medical care and it sounds like we’re now going to create another level of bureaucracy to oversee the existing bureaucracy we have in place because no one can get the multitude of DHBs we have in this country to talk to each other.

It’s all well and good to have agencies and DHBs reporting to the Health Department. But – where’s the tangible and practical support and assistance for the patients?

How can an organisation like the Southern District Health Board go on reporting growing Radiation Therapy waiting lists, and people being forced into private care – or withdrawing from care because they can’t afford it - without anyone doing anything about it? I know - there’s a new Linear Accelerator on its way south. But, in my view, this will only fix part of the problem – and I guess I’m now talking about every patient, or carer, who has to travel to receive medical care of any kind. As a result of this travel, they have to “suck up” all the associated expenses. I guess we can’t all live just down the road from the hospital. Where’s the help for these people? And I guess, just as importantly, how do they find out about any help that is available?

  

The new Cancer Agency will sort this out, you say.

Will it really?

How?

Let me tell you why I’m sceptical…

Medical professionals are all focused on providing the very best medical care for their patients that they can. This is a given, and I for one, am extremely grateful for their efforts. But, for a lot of patients a huge issue is the financial burden placed on them when receiving this care. I know there are other agencies and organisations that can provide financial relief for patients but, in my experience, this relief is very limited and always comes after the event. In other words, if Joe Average, who live fifty kilometres away from the nearest hospital gets sick, he has to use up all his sick leave, holiday pay and probably the bulk of his savings, while his partner and carer has to work extra shifts to keep some money rolling in, before being eligible for any financial relief, and, even then, this relief will be very limited.

It’s a pity he doesn’t live down the road from the hospital – in the same way it’s a pity I don’t live in Auckland.

Let me explain…

Back in March of this year I was admitted to Auckland City hospital – remember, I live in Hawkes Bay - to have a Squamous Cell Carcinoma removed from under my right eye. That in itself proved to be a very expensive exercise. Anyway, the proposed follow up treatment included six weeks of Radiation Therapy which was to happen in Palmerston North. After, what seemed like, and actually was, a long wait, I was scheduled to start the therapy at the end of July. For reasons which I won’t go into, a few days before I was due to start, it was decided I would be better off if my therapy was done in Auckland.  Now… to my simple mind, this would have created a gap in the Radiation Schedule in Palmerston North. So…

             

Did someone in Palmerston North report this gap, or did a queue shuffle at Mid-Central DHB just automatically happen?

If someone was to report this gap, who would they report it to?

If the person in charge became aware of this gap would they think to ask around the country to see if anyone is in urgent need of therapy? (Pencil in new Cancer Agency.)

Who at Southern Districts DHB would they ask?

Let’s suppose, by some miracle of modern communication, the Southern Districts DHB became aware of this gap in Palmerston North’s schedule, who would then decide which patient from Southland would receive the therapy?

Now for the hard question…

Who pays for a patient from Southland to receive treatment in Palmerston North?

If I had gone ahead and received my radiation therapy in Palmerston North, Denise and I would have stayed at Osnam House at no cost, and the Hawkes Bay DHB would have paid the Mid-Central DHB for my treatment. As my treatment was done in Auckland, the Hawkes Bay DHB paid Auckland. But who paid for our accommodation? That would be us, so… we’re now thousands of dollars out of pocket.

Don’t get me wrong. I’m grateful I get to keep my right eye, which wouldn’t have happened if I’d received treatment in Palmerston North. The point I’m trying to make is… what if a patient being sent to a different DHB can’t afford the additional expenses? Do they simply not go? Or do they have other options?

What about the National Travel Assistance scheme, you ask?

Well… If they’re not able to arrange pre-paid accommodation with their own DHB, the patient has to pay and claim it back. In our case, for our first stay of four weeks in Auckland we received less than half the amount we claimed… four months after we sent the claim in.

So, what am I actually trying to say here?

Yes, I’m in favour of the new Cancer Agency, mainly because what we have isn’t working. But let’s make sure we don’t put all our focus and resources into numbers and statistics. Let’s remember the patient. It would be great to see some initiatives directed at relieving the load for those undergoing treatment, and this is now going to lead me into my next diatribe.

  

Here’s another question – Where’s the Cancer Society when you need them?

Turns out, they only get involved if you contact them.

Or do they?

Here’s a statement from their website:

“You do not need a referral - in fact - due to privacy issues we are not given your name or contact information by your doctor or health professional.  To access our services we need to hear directly from you or your carer.”

This brings up another question – What privacy issues?

I really would have welcomed and appreciated a visit from a representative of the Cancer Society while I was recuperating in Auckland hospital. I’d always been under the impression that if you developed cancer, a routine action, after diagnosis would be to make sure you were given information about the support they could provide. Silly me.

So, why didn’t I contact them? Well… keep reading. I had this impression that the Cancer Society was an organisation that dealt with advocacy and representation on a broad scale, primarily with the Department of Health. Seems I was right. What I didn’t realise was that there’s a significant “disconnect” between patient care in hospital and patient care after discharge.

  

Now I accept they do great work and help a lot of people. However, as things turned out, I’m not one of them. Looking back, I realize that I needed to know a lot more about them at the start of this journey. But, how was I to know that?

Should I have expected someone from my Surgical Team to tell me about them? Should I have expected someone in the Hospital to tell me about them? Should I have expected anyone – at any time through this journey, to tell me about them?

But… if I had contacted them, could they have helped? As I’ve since discovered… probably not.

I gotta say – our Auckland experiences weren’t nice. Some months ago, we had occasion to spend a couple of days at Osnam House in Palmerston North. This is a dedicated accommodation complex specifically for people with cancer and their carers and is operated in part by the Cancer Society. This experience created an expectation in my mind of what it would be like in Auckland during my treatment. Unfortunately, the reality was very, very different.

Even though it’s behind us now, unfortunately, the experience has further coloured our opinion of the Cancer Society and not in a good way. I’ve gotta say – in my particular case – they’ve been of little, to no help at all, throughout this entire saga. Every interaction we’ve had with them has resulted in disappointment. Over the course of these interactions they’ve received my contact details on at least three occasions and the silence afterwards has been deafening. Maybe it’s because my particular cancer pathway deviated from the norm. Being from Hawkes Bay and getting treatment in Auckland just seems to kick you into the too hard basket. The distinct impression we get is that our local Branch of the Society is only focused on providing transport to Palmerston North and fundraising. Or am I being a bit harsh?

Anyway, I thought to myself, maybe a closer connection with the Cancer Society will change my view. So, I volunteered to be a collector for Daffodil day, assuming there would be an orientation session beforehand to explain how it worked. Maybe this would give me an opportunity to talk to some of the people more closely associated with the Society. Well, wrong again. A phone call to ask me if I could be at the designated location from 1:00 to 2:00 and that was me, done.

So, I duly reported to the Flaxmere supermarket at 1:00 where the collector I was relieving gave me a high-viz vest, a lanyard with a card attached saying I was an ‘Official Collector” and a bucket. She went on to tell me that things were quiet and that donations had been a bit slow. Well, that soon changed.

Now, for those of you not familiar with Hawkes Bay, Flaxmere is arguably at the bottom of the socio/economic scale in this region and has a reputation for being a “not very nice place”. But, collecting for an hour at their local supermarket certainly opened my eyes. There weren’t a lot of people about, but of those that were, I would guestimate that between sixty to seventy percent of the people who passed by, made a donation. Without counting, I know I collected well in excess of $50.00 in the hour I was there. This might not be much in the great scheme of things, but knowing Flaxmere and the local economy, I thought it was outstanding.

  

There was one particular guy who walked up to me and asked how much the little plastic daffodils were? I explained to him that they were given out when someone made a donation and he replied: “I’ll take four. But I’ll get them when I’ve finished shopping” and off he went.

When he came back, he handed me change from the loaf of bread he’d just bought – about $16.00 – and explained that he wanted four because he had a wife and two children at home. I’m pretty sure he couldn’t really afford it, but this is just one instance of the generosity I saw from these wonderful people.

So, what’s going on in my life now? I’m just starting into my third week post-radiation and I think I’m doing ok. I’ve been doing a bit around the house – just an hour or so each day. Going for some short walks as well. Gotta say, the walks are a struggle. I’ve tested out every park bench and seat I’ve passed. My sleep pattern’s all over the place. Sometimes I can’t sleep through the night and end up staying in bed ‘till lunchtime. Other days I’m up  and wide awake at 4:00am. The aches and pains come and go. Nothing too bad. It’s getting harder to work out if the aches are related to the therapy or just old age. I know what my wife thinks.

I got a phone call from Auckland Radiation Oncology on Wednesday, asking me to confirm my follow-up appointment in Auckland at 1:00pm on Thursday. When I told the lady on the phone that this was the first I’d heard of it, and that no travel arrangements had been made, she became very defensive and told me it was on my calendar. When I asked her; “what calendar” things became a bit tense. Anyway, she ended up saying she would let the doctor sort it out. Haven’t heard anymore about it since. Hopefully they’ll decide to let the Hawkes Bay doctors do the follow-up. Time will tell.

Anyway, that’s me for now. I hope I haven’t been too hard on the Cancer Society, but we really could have done with some support and direction along the way. Hopefully those with more “mainstream” cancers will have a better experience.

Remember…