Well done CCDHB, you have succeeded yet again!

The one date every year that I dread and hate the most must be the 1st of April - April Fool's Day. On that day I am always on the edge as I try and avoid situations where I could be humiliated and fall victim to some stupid pranks. And this year was no different. So when I heard from a friend who text me with some pretty disappointing, shocking news at first I was like "oh no! That's terrible" and then "oh wait is this just an April Fool's Joke?" to which she replied she most definitely was not joking. But here we are once again in utter disbelieve and shock.

I have to hand it to the CCDHB. They have yet again succeeded in "not retaining" the paediatric oncologists at Wellington Hospital. They have yet again let so many existing and future families down and placed tremendous pressure on the other two specialised units in New Zealand (Starship and Christchurch). Once again patients are faced with the reality that if they are newly diagnosed or if they have a more challenging situation, they will probably end up being sent away again. Once again.

For those of you who don't know:

When Bianca was diagnosed there was Doctor Liz and Doctor Anne. Not too long after, Doctor Liz left (and much later admitted that the reason she left was that inadequate resources were putting patients at risk) and then Doctor Anne was left with an increased work load, increased work hours and when she finally left, none of us were surprised, but certainly we were shocked and heartbroken as she was so brilliant at what she did, and although she never discussed reasons as far as I know, I don't think it would have been possible to work the way she was left to work for an extended period of time. And the brilliant CCDHB never bothered to start the recruitment process while Doctor Anne was still there and instead just left her to work on her own.

When Doctor Liz left a number of newly diagnosed patients and the more challenging cases were sent to Starship and Christchurch as the Wellington unit simply could not manage the way it was. We were fortunate that we did not have to travel a lot for treatment, but some families were given as little as 24 hour notice to start treatment somewhere else, so not only were they dealing with the devastating diagnosis, but they were suddenly sent away to a place that they did not know, possibly without the family- and friend-support structure they had at home. There was one of Bianca's treatments though that we were sent to Christchurch for. We were sent to Christchurch for one of Bianca's treatments that normally would have been an outpatient situation and instead turned into a 3 day trip. Neither of us liked it. We were stuck for a whole day in this incredibly full and busy dayroom listening to doctors discuss other patients' situations with them, listening to kids figh over the playstation and the noise just continued and continued until probably around 4pm. Bianca found accessing her port traumatic because their style were so business-like and (what I thought) not handled age-appropriately and on top of that she desperately missed her dad and baby sister and kept asking when we would see them. Not fun at all!

It was quite a while after Doctor Liz left that the CCDHB decided instead of starting a lengthy recruitment process that they would far rather compile a report to decide whether they would be keeping the unit or not and finally decided that they could probably keep the unit providing that Christchurch would be able to share the care. This was okay for a bit, but certainly I didn't always have faith in the whole Christchurch deal as they were often rushed on the one day a week that they visited Wellington hospital and I sometimes felt as if they weren't really able to establish a relationship with the Wellington patients as they didn't really see them very often, and instead relied on a normal paediatrician and a locum to do an assessment and then to contact the Christchurch doctors via teleconference for decisions to be made. I'm not saying it didn't work, but I certainly didn't always feel that it was effective at all.

And then we were all elated when we were told in a meeting by the one representative that they planned to move the Children's Ward and the Oncology Ward into one of the old buildings that would become available when the departments in the Grace Neal block would move to the new buildings. Finally, we thought, they would be able to design a dedicated unit that would be safe for the oncology kids, with more space which would be great when finally the other patients who were sent away, would return. And on top of that they finally recruited two new specialists who would be able to start a number of months later. I remember that time as if it was just yesterday. (Read here) and (here).

There were a number of factors that finally made us feel it was time to move. We just got used to the new locum when he also left, and it was around this time that we were informed that because Bianca was on her maintenance part of her treatment she did not need to be in the care of the specialists from Christchurch anymore, but would instead be in the primary care of a paediatrician. Suddenly it just felt that October would be too far and it would be too long to wait for the new specialists to arrive. We didn't feel things were that safe anymore and certainly up to that point Bianca has had a number of complications, spent lots of time in hospital with various infections, developed shingles and even had a fairly severe allergic reaction to one of her chemo drugs - we really felt that it would be less risky to be closer to a unit that is well established with sufficient specialist care. And so when Terence got the opportunity to come and work in Auckland we took it.

Moving to Auckland was incredibly hard. For 3 years Wellington became our home, we were happy there, settled, used to the nursing staff at Wellington Hospital, Bianca had friends there, we started thinking about schools, but when it comes to your child's health, you do what is best for her. It was very expensive having to move from one city to another, the move itself cost us more than $3,000, we had to pay for a bond / deposit on our new rental home (which was more expensive than before), and other bits and pieces that we would not have had to pay for if we were able to stay in Wellington. Rental homes in Auckland are much more expensive, it takes us much longer to get to Starship and it is more expensive to park at this hospital than Wellington hospital. And for months after, Bianca was desperate to play with her friends Amy, Edie, Risha, Georgia and Elijah and many of the other friends she made at the time again. We always thought we would stay in Auckland as long as we needed to and that at some point it would be nice to move back to Wellington again. We certainly did not want to move back to Wellington unless we were sure that the new oncologists would stay, were well settled in a well-run unit.

And then "surprise, surprise" the CCDHB went against their promises when they decided that they didn't think they wanted to move the oncology ward into the Grace Neil Block anymore. Their reason was that the space would not be sufficient (but hey, this building has something like 5 levels and I was there when Caitlyn was born - the one room was huge, and the other one I was moved into and stayed the night was no smaller than the isolation units they have in their current location, and let's face it the current space does not allow for much room for oncology patients anyway - they have something like 4 or 6 rooms dedicated to oncology patients and with those rooms you have normal sick people walking right past, so not really that ideal for patients with no immunity). And all I could think about when I read the article was that I was shocked, but certainly not surprised. At times I felt that the CCDHB would say things just to get the media and other people off their backs and then when things quieten down, then they break their promises again. Maybe it isn't like that, but it certainly felt like that.

But at least Wellington Hospital has their new specialists so that is something positive, right? Right! Now there is an article saying that these new oncologists have decided to resign. So here we go again. I cannot believe that the CCDHB and the management seem unable to retain top notch staff. I don't understand why they ended up spending hundreds and thousands of dollars on beautiful landscaping for their new buildings (let's face it when you are sick, you don't particularly care what the outside looks like), but they never bothered coming up with a plan for the Children's- and the Oncology wards. That was never included in their plan. That makes me wonder how dedicated they really were about retaining the unit.

I don't know what plans they have made since they announced the unit will stay where it is, I haven't been to any of their meetings, but I just feel so upset, heartbroken, sad for all these families in Wellington who are now once again placed in a very difficult situation. And the funny thing is that CCDHB knows that as hard as parents try, they will end up taking whatever the CCDHB throws at them, because it is not exactly as if you can say "well you sort out your rubbish and when it is all sorted out then call me and I will bring my child back for treatment". And I wonder if any of these CCDHB members and management were placed in our situation where they suddenly had a child with cancer (and I'm most definitely not wishing it on anybody) would they have been happy with the situation at Wellington hospital? Probably not. But hey, they are not in our situation so why would they care?

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