So this is what happened...

Thank you for the comments on yesterday's post and photos that I shared.  Today I thought I'd share a bit more info on why yesterday was so frustrating for me.

Yesterday we planned to arrive prior to our appointment so that we could get Bianca's blood test done, hopefully with the results ready in time for our appointment.  This is how it has been for us for a very long time.

Usually the results take about an hour and while there might be some info outstanding, the ones important to us are usually ready to be discussed with the doctor.  Things like haemoglobin (red blood count), platelets, neutrophils (the white cells you need to fight infection) and the white cell count.

So yesterday that is what we did (as we did all the other times).

We got there, I went to the receptionist lady at the outpatients clinic, told her that we were there for Bianca's blood test and she asked "did you bring your blood test form?" "uhm...actually we didn't get a blood test form".  Usually it would be on Bianca's file and whether that is the process or not, this is how it has been since we arrived back in Wellington in 2010.  She looked on Bianca's file and it wasn't there then asked me to have a seat so she could go and chat to the nurse. 

We then waited.  Bianca was playing around with some of the toys there.  And we waited.  And waited.  And waited.  And waited some more.  And the more I waited the more upset I started feeling as nobody was telling us why the wait was so long or what was busy happening. Finally after about an hour had gone past, the receptionist lady came to me to tell me that so and so was only going to do blood test forms at 10am which was the exact same time as our appointment.  Not even an apology that we had been waiting an hour.  By that time I was feeling pretty angry.  They have known for 3 months that we would be coming and nobody bothered getting the blood test form ready before our appointment date.  They made us wait an hour before finally telling me what was busy happening.

When it was our time to see the doctor I kind of gave him a piece of my mind and shame, I actually felt a bit sorry for him because it wasn't his fault the form wasn't there - we've never seen him before.    But by then I've just about had it.

He was a really nice doctor.  Just a general paediatrician I think.  He seemed pretty thorough although I wasn't sure why he checked some of the things he checked.

Now this is where the second part of my frustration happened.

Some of you might know that we are in a shared care arrangement with the Christchurch hospital.  Effectively this means that we don't have our own paediatric oncologists, but the Christchurch oncologists are supposed to come according to some or the other schedule. It also means that all newly diagnosed kids will initially be sent away hundreds of kilometers away from home.  Some go for a few weeks, others might be away from home for months.  It is really pretty sad and heartbreaking and incredibly stressful.  The health minister pays for the child and 1 parent / caregiver to be sent away, because of course to them we are nothing more than a number.  So now parents not only have to deal with the absolute heartbreak and shock that their child was diagnosed with cancer, they now also have to face being split up as a family at a time when you really need all the support you can get and of course in Christchurch these families also have to deal with the stress of all the earthquakes and aftershocks that's been happening there.  It is the Child Cancer Foundation who would pay if required so that the other parent and possibly siblings could go along to try and help keep the family unit together.  And CCF doesn't get any funding at all.  For CCF it is important that you never feel alone.  To them you are not just simply a number.  So yes, effectively this is how this so-called shared-care arrangement is working.  Or at least this is what it seems to me because I struggle to see the benefit of this "solution" the ministry signed off on.  To me it has always simply felt like they were trying to cut costs.  I've never had faith that this arrangement worked effectively and safely, but that's just my opinion.

It would seem that Bianca doesn't really get to see the oncologists anymore and that she is now only seeing a number of random registrars and paediatricians.  And it always seems to be somebody different.  This is a worry to me because there is no way you could form a relationship with a doctor if you never see the same one.  How will these paediatricians and registrars get to know Bianca?  It would seem they don't even really know what is in her file because each time I am asked the same questions over and over and over about things that should be on her file.  Just yesterday this doctor asked me about Bianca's immunisations and whether she's up to date after her chemo and all I could think about is that surely this info must be on her file, why on earth wasn't he aware of that?

So now it makes you wonder just how this shared care thing is supposed to be working.  Who exactly is the person in charge of Bianca's care?  If I had a concern about something and phoned to speak to a doctor who am I going to speak to?  In Auckland there were a team of paediatric oncologists and registrars and you had one oncologist in charge of your child who would be responsible to make all decisions about your child's care.  There were times we'd see other doctors, but they were all thoroughly briefed on each case on a regular basis and you never had to repeat info that should already be on file.  That to me is shared care.  Not what we have here.

So now if we mainly deal with general paediatricians and registrars - just how experienced are they with paediatric oncology?  Would they miss something important?  Or dismiss something that they should be concerned about?  As I said this doctor we saw yesterday was very nice.  He had a lovely way to deal with Bianca.

When I discussed my unhappiness about the blood test situation and that we usually do this prior to our appointment, he looked at me and then said "oh well, blood tests are really just a minor thing in the grand scheme of things.  Bianca looks very healthy".  Really???!!  I know of kids who relapsed and the only indication was an abnormal blood test result.  They appeared all happy and healthy.  He told me that nobody ever does their blood tests prior to their appointment with their doctor and I disagree with this.  Since 2007, that's always how it has worked.  We do a blood test, wait for the results and then see the doctor who would then discuss these results with you and answer any questions you might have about it.  So now I don't know if this doctor expects us to wait 3 months every time if we felt we wanted to discuss blood test results or what his idea is about this.  He kind of indicated "well you do get a letter in the mail after your appointment don't you?" and we do.  But once again that means we'll end up waiting for however long and then who are we supposed to be calling if we don't even know who is in charge of Bianca's care.  So I don't think he really gets it from a child cancer parent point of view.  It kind of felt like he would see an oncology child's care as no different to that of a child with a mild cold or broken leg or something. I might be wrong, but that's how it felt.

I discussed another concern I had and this too he totally dismissed and based on his argument it was pretty clear that he actually has no idea about the particular drug and possible late effects that it might cause. 

I will say one positive though - he was the very first doctor since we came back in 2010 to explain to me that at the end of our appointment whichever doctor we see is supposed to give us a copy of the blood test form.  Not a single other doctor, registrar or oncologist has done this since we've come back in 2010.  Not a single person has ever explained the process to us despite me asking.  Nobody seems to know what the other person is doing and I know there is one person who sets up the appointments, but I honestly can't tell you what she looks like or where she is located.  All we get from her is a letter in the mail with our next appointment date and no other information.  So yes, I find their processes and systems completely disorganised and it is almost as if nobody cares whether you know all the info or not and nobody seems to want to take ownership for that.

I am really really glad Bianca is not still on treatment or just off treatment because it just doesn't feel "safe" to me.