Autumn in Canberra, 2014

Autumn in Canberra is a glorious time of year:



The Next Big Thing In Organ Donation


Very pleased to have published an article in Croakey today about First Person Consent.  Thanks to Melissa Sweet and Marie McInerney for accepting this article for publication.

As previously foreshadowed, this is really one of the next major initiatives that needs to be pursued so as to ensure that decisions about organ donation are respected, honoured and, importantly, upheld.

This is not an opt-out system.  Rather, it is a system that allows families to endorse their loved one’s decision about organ donation.  And it uses our very important call to action, the Australian Organ Donation Register.


The Politics of Organ Donation

organ for tx

Organ donation has been a fraught sector in Australia’s health system since records were kept beginning in 1989.  Between 1989 and 2009, very little had changed as far as number of donors, remaining at around 200 donors per annum.  This is a surprising figure when Australians are generous to a fault.  They would give you the shirt off their back if you were stuck in a bush fire, a flood or other disaster.  Yet, surprisingly, this did not translate as far as organ donation was concerned.

In 2009, the Australian Government established the Australian Organ & Tissue Authority.  For the first time, organ donor specialists came together to build a national system.  This was no mean feat.  It involved working across States and Territories and within hospitals, an incredibly difficult job in a federation.

Their work wasn’t easy.  There were more than 70 organisations – government, NGOs and professionals – who were involved in the sector, all claiming to know how to solve the problems.

As an old hospital manager, I knew some of the problems.  Hospitals across Australia were expected to maintain the organs of patients, who were essentially dead, without any resources.  They had to balance that requirement with the need to support those who would survive their trauma.  The Australian Government funded a specific number of hospitals to ensure that beds and staff were provided in intensive care units to enable organ donation to occur.

It can take many hours, if not days, to manage organ donation to fulfil the decisions of the person who has died while managing the expectations of families.  This has been one of the key successes to date in ensuring an increase in organ donor numbers.

And an increase there has been:  Australia has moved from the annual average of around 200 donors to 354 donors in 2012.  In just three years we have increased our numbers significantly.  It is recognised that Australia has started from a low base, but the results have been pleasing, while modest.  There is certainly more to be done, but good groundwork has been undertaken to ensure that this success can expand.

However, one of the 70 groups involved in the sector sees it as their mission to denigrate the hard work of so many clinicians, consumers, and community members generally.

ShareLife has just embarked upon a new campaign to criticise and denigrate the work of the Australian Organ & Tissue Authority.  I am heartily sick of their efforts to belittle the clinicians, the volunteers and ultimately the donors, which is what their campaign is doing.  And this is from someone who needs a lung transplant!  I have been a participant in many meetings with ShareLife and would summarise their claims as follows.

Their first argument is that they drafted the Cabinet submission that established the Australian Organ & Tissue Authority and the Authority is not following the submission or Cabinet decision.  In my more than 30 years of working in the health sector and more than 40 years in the public sector, I have never heard of an NGO developing a Cabinet submission, so I do not believe this claim for one minute.  The Authority is implementing a reform framework with nine components that has been agreed by all the experts as well as the States and Territories.

The second claim is that the Authority is not following the practices that have been established in Spain, recognised as world’s best practice in the sector.  While Spain has a high rate of organ donation, it retrieves organs from extended criteria patients.  That is, the organs are not likely to provide a long life for transplant recipients. Australia’s clinicians have not adopted such a practice to date, preferring to focus on the maxim of “first do no harm”.  To alter this approach is a conversation that must take place amongst clinicians and community in Australia before it is implemented.  In the meantime, Australia has embraced many of Spain’s approaches.  And the results are pleasing.

Third, ShareLife is using a number of advocates who have had transplants to criticise the work of the Authority and concomitantly the Australian Government.  I find their approach to the sector particularly ungracious.  They have received transplants as a result of a selfless decision by a living donor or a donor family, yet they cannot be respectful of that gracious gift.  Some of those involved will need a further donation while others are disgruntled clinicians who want more of a say in the way things are working.

On this front, ShareLife has considerable difficulty in understanding that the hospital system is one that is funded by each State and Territory.  It is not a matter of the Commonwealth (or the Authority) snapping its fingers and expecting the States and Territories to jump to attention.  There is the little issue of the Constitution that stipulates the role of the Commonwealth and the States and Territories.  In addition, a number of the business people involved in ShareLife seem to think that it is as simple as moving a pallet of goods from Perth to Sydney when it comes to organ donation.  Unfortunately, life and death issues are much more complex than this.  There are hours of discussion, grieving, negotiation etc with family.  This is not a business transaction.

Fourth, ShareLife refuses to join with the Australian Organ & Tissue Authority as a Charter signatory in supporting the work of the Authority and contributing ideas and volunteers, unlike the many other organisations in the sector.  There are 51 organisations that have become Charter signatories and 17 organisations who are DonateLife Friends.  All of these organisations work tirelessly throughout the year to promote organ donor awareness.

However, ShareLife’s major activity each quarter is to criticise the work of the Authority, to belittle the efforts of clinicians and volunteers, and ultimately jeopardise the chance of increasing organ donation in Australia.

I for one have had enough of ShareLife’s antics.  They are not an organisation that is sharing life.  They are jeopardising the opportunity for Australians to become donors, the potential for recipients, and the importance of the work of clinicians, community and volunteers to make a real difference.

It’s time that ShareLife went and shared its joy with someone other than those in the organ donor sector.

Operation Helen

My twin sister, Helen, and her husband Rob (known as Bob to some of his friends) have been planning their trip to the United Kingdom for about a year.  They have done this trip before and it includes tours with Kerry O’Keefe to the Ashes.  This year, as they are in their beautiful new home at San Remo (see map below), we offered to look after it for the 6-7 weeks they would be away.  After all, we have joked, it is a 3 star resort when they are home, and 17 when they are away.


Normally I speak with Helen about four or five times a day.  The last few weeks have involved discussions about how to work the television, the service directory that she was preparing for our stay, the best places to have coffee while we are here, etc. etc.  On the Friday two weeks before their departure, I commented that I hadn’t heard from her all day.  I rang and said phone went to voicemail.  Most unusual as Helen sits on her iPhone and iPad.

She rang later that evening and promptly dissolved into tears saying that she had been avoiding me.  She had to tell me that she had a brain aneurysm and they would not be going away.  She had consulted a neurosurgeon.  An angiogram would be performed in a fortnight and the operation would take place sometime in August.  This didn’t sound crash hot to us (an old CEO in the health system and an even older Medical Director) and we offered to put them in touch with someone for a second opinion.  Happily this offer was accepted, and they were promptly seen by the best in the business.  The angiogram was done and Rod and I decided to come down anyway, stay with Helen & Rob (despite the small visitor rating) and see if we couldn’t help in some way.

The operation to clip the aneurysm was scheduled for 2 July 2013, with Helen being admitted on 1 July. It would have been our Dad’s 91st birthday if he were still alive.  We jokingly had the last supper on Sunday, 30 June.

We created a telegraph tree of family and friends in Australia and across the globe.  We reckoned this would save Rob having to answer every phone call and message.  Here’s the email I sent out on the night of the last supper:

Dear all,


Just to let you know that Operation Helen begins on Monday with her checking into hospital in Melbourne.  I am now ensconced in the Visitor’s Wing of Aquae Sulis, Italy, San Remo.  Trapper and Rod arrive tomorrow (beagle and husband for those who don’t know).

Helen and Rob are in good spirits, having bought a new puppy dog (Tia Maria, Bailey) yesterday (photo attached).  

Her operation is on Tuesday afternoon, followed by a stint in the intensive care unit.  We are hopeful that Helen will be released by the end of next weekend, but I will keep you posted of developments.  Don’t hesitate to contact me if you have any queries or concerns.  

I am the Director of Communications and Strategy, Operation Helen.  I’ll probably issue daily bulletins.

Bailey the new puppy

Bailey the new puppy

Helen and Rob left San Remo early on Monday morning and collected their daughter, Rebecca, from the airport.  Paul and Lisa, son and daughter in law, live in Melbourne and they were all able to be together before this serious operation.  My email to the telegraph tree follows:

Hi all, 


Just to let you know that Helen was admitted to hospital today and was promptly organised to have a further scan and other blood tests.  Rebecca has arrived from the nation’s capital (not much going on there now anyway, other than a Cabinet meeting) and Paul & Lisa will catch up with her this evening.  

Everything is still on track for a 1.30 pm commencement tomorrow, but I don’t expect to be in a position to let you know any more much before 6 pm, San Remo time, where the sun rose and set today and the beagle enjoyed every moment of his walk along the beach (photo of him returning is attached, just to keep your interest up).

On the little issue of visitors; she will be in ICU/high dependency so there is a strict limit on visitors.  I’m pretty sure that all except Rob, Rebecca, Paul and Lisa will need to get in the queue behind me so it may be best to leave that idea float for the time being.  I know she will enjoy your SMS and email messages though:  there will need to be preliminary surgery to remove the iPhone and iPad from her hands.  She already has the mother of all headaches, and we will expect mega mother of headaches following the surgery.

Thanks again for your kindness and good wishes for Helen, Rob and family.  This is a tough time; but they are up to it and will plough through this.

For the Cahill family:  I have already spoken to Mum.  For the Goddard family, I’m guessing that Rebecca will be in touch with Joyce, but please let me know if this is not the case.

Trapper The Blind Beagle returning from the beach

Trapper The Blind Beagle returning from the beach

I received the following response from one of Helen’s friends in Western Australia, a person who understands the importance of my appointment as Director of Communications and Strategy:

Dear Director of Communications and Strategy

First, we would like to congratulate you on your appointment and say we can think of no one better qualified for this post. 

 Secondly, we are pleased that your package includes accommodation in the guest wing at Aqua Sulis Boutique Resort and are gratified that the enlightened management permit dogs as guests. We even understand the proprietor has created various recreational activities for said K9s including “digging up dinner” in his vegetable patch and “catch the kangaroo” across the cliff top fields. 

We hope that Trapper will be taking his role very seriously in identifying all the fun his new canine-cousin-to-be, Bailey (aka Irish Cream), will have at the property although we hope he will have some sympathy for the proprietors and tip them off regarding which areas of wall, floor, skirting, rugs etc are the most chewable and hence may need protection. 

Your friends in the West look forward to receiving your next bulletin and trust you have a comfortable night at the resort (has a replacement master chef been arranged?)

Of course, Helen’s friends in the West had forgotten about the Fat Fox who often runs through the property, and we were startled to see him skulking through on Monday.

The first really low light occurred on the Monday evening, not when we realised the chef wasn’t coming home, but when the anaesthetist decided to do his consultation over the phone.  He rang Helen, commented on her weight being a problem went through the risks, listened to her chest,  told her what the risks were – apparently huge, and hung up.  He then rang back to tell her what her co-payment would be ($500 for anyone interested).  By this stage Helen was a blithering mess:  the anaesthetist has basically told her she shouldn’t be having the operation, when the rest of the world knows that aneurysms can blow at any time.  In my more than 30 years working in the health system, and my Rod’s more than 40 years in the system, we have never heard of an anaesthetic consultation over the phone.  Indeed, as a consumer advocate I would go as far to say that it is unsafe, especially as the anaesthetist had concerns about how Helen might recover.

Not much sleep was had by anyone on Monday night, least of all Helen.  Part of Helen’s problem in sleeping was that the Hospital does all its business over the PA system.  So, for example, announcements are made when someone wants the drug cupboard keys or to know where the nurse unit manager is.  Testing of some particular equipment occurs at 9.15 pm every evening that includes an announcement over the PA.

Tuesday dawned and eventually Helen was taken to theatre at about 1pm.  I started checking that my phone was in good working order at about 4 pm.  Rod helpfully commented that it was good we hadn’t heard anything:  it meant that the surgeon had not decided it was too hard to operate on.  By 5 pm, despite my telegraph tree, I had received numerous SMS and phone messages.  I spoke with Rebecca a few times:  she, Rob, Paul and Lisa headed into the hospital at 6 pm.  The ICU/high dependency team had not received any word on Helen’s progress through theatre, so there they sat.  I sent the following message out at 6.17 pm:

Hi all,


The family are receiving lots of texts at the moment.  Helen is still in theatre (6.12 pm) so we’ll update when we can.  Rob is quite anxious, so perhaps hold off on the texts till he sees the whites of Helen’s eyes.  Is that ok?

Many thanks.

Love,  Anne.

Rod and I sat in San Remo wondering what was going on.  Poor old Mum in Canberra was anxious and unfortunately none of her offspring were in the nation’s capital to sit with her.  Eventually, news arrived:

Dear All,


Sorry to be so late.  If only the health system moved as fast as Trapper (the beagle) email.     

Here’s the report:

    • Operation is just finished (7.30 pm ish, EST)
    • Surgeon had to insert three clips as it was bigger and more complicated than first thought
    • There is no bruising to the brain
    • Helen is moving both sides of her body
    • She will be in recovery in an hour or so.
    • The surgeon is happy with how it all went.
    • She will eventually head off to ICU.

 Phew.  A few of us were starting to get a bit snappy and anxious but this is good.  As one of my good friends said tonight, there’s no point in rushing brain surgery.  It’ll end in tears.

The next bulletin from the Director of Communications and Strategy will be tomorrow morning at approximately 9 am EST.  Keep your powder dry till then, please!  But feel free to contact me if you need.

And, in the spirit of keeping your interest up, here’s Trapper coming back from the beach today.

Love, Anne.

Trapper loves San Remo

Trapper loves San Remo

We had a celebratory but very late happy hour and slept like a log.  The next bulletin went out on Wednesday morning:

Good morning all,


Just a short update:  there were four aneurysms there, like a four leaf clover.  Rare.  Blimey she sounds like one lucky girl.  I can tell you that she looks much better this morning, according to my informants based at Melbourne Private. She is still in ICU though, so no visiting yet.

While the craniotomy was successful, the operation to remove the iPad and iPhone not so much.  They have reattached and she was tweeting and SMSing at 4 this morning, just after the shower.  She tells me she’s having a bad hair day, but we know people (another Helen) who will fix this in due course.

Rod and I are now on our way to the capital of the Garden State to clap eyes on Helen ourselves (I’m her twin, and allowed).  Further bulletin to be provided this evening.  I know I promised you an update at 9 am, but Rome brain wasn’t built in a day.

What can I attach to keep your interest up?  I know, the tail end of the mob of kangaroos we saw last night on our walk.  

Regards, Anne.

Kangaroo on Potters Hill Road

Kangaroo on Potters Hill Road

Rod and I drove to Melbourne, bought an expensive car park (I thought I was buying the space outright; it seemed it was only for a short time) and hot footed it upstairs to see Helen. Here’s the report:

Dear all,


Rod and I are just home from visiting Helen at Pentridge Jail Melbourne Private Hospital.  I could bore you with the trip in, the traffic and the fact that Rod had trouble with the 3 sudokus he had on the go, but I won’t.  They have nothing to do with my role has Director of Communications and Strategy.

We were pleasantly surprised to find Helen returning from a lap of the ward, having been moved from ICU to the ordinary, but extraordinary, neurosurgery ward.  She’s still on a drip with antibiotics and is required to use the supplementary (as well as complimentary) oxygen.  She’s a little teary and a tad repetitive, and if she didn’t have the row of staples around her hairline with dressing around it, not to mention a big board underneath her forearm supporting the drip, you wouldn’t know she had had surgery or anything wrong at all.

The registrar and resident medical staff saw her this morning and were happy with the way things were going.  While she is enthusiastically champing at the bit to be out by Saturday/Sunday, I’m not sure whether this will happen; I’m happy to be wrong but I did have to explain that her hip and knee repairs were probably quite different operations from the one on her brain.  The staff are looking after her magnificently and seem to be keen to do anything for her.

Nurse Ratchitt (aka Rob or *Bob*) and Sergeant Goddard had also been in and we caught up with them for a quick bite before heading back down to Houston (thank you Susannah for that suggestion).  They are wrung out with relief:  I think we’re all feeling the exhaustion of the very long operation and not knowing what was happening.  They sat, with Paul and Lisa, in the foyer of the hospital until the surgeon rang them just before I sent out last night’s bulletin.  They were even tossing up whether to pre purchase tickets to Collingwood and Carlton, not being sure whether they would go if things hadn’t gone as we hoped.  As a family I think we’re all anxious about Collingwood remaining in the 8 Helen’s recovery as we know there will be hurdles to jump yet.

Helen would be happy to receive emails and messages from you, and for those who live nearby she has told me that she’d be happy to see you.  It would be best if you check with me first, though, if you wouldn’t mind as we’re not sure what the recovery process is.  The iPhone must have been in use all night because it was as flat as the Goulburn Valley this morning.  Not sure whether the surgeon had a play with it as well.

Just to prove that I am a reliable Director of Communications and Strategy (did I mention my important title?), I have attached two photos for your enjoyment.  The first is Helen with her twin sister (moi) – pick the sick one.  The second is of the happy family recovering at lunch today.

The next bulletin will be either when I have something more to report or tomorrow evening, whichever occurs first.

Regards, Anne.

Helen and Anne

Helen and Anne

Rob and Rebecca

Rob and Rebecca

Thursday came.  Helen was still talking about being out of hospital by Saturday.  We couldn’t imagine that, but decided to take each day as it came.  We went for a drive around Phillip Island, leaving Rob, Rebecca, Paul and Lisa to do the visiting.  I was in touch with them throughout the day, including with Helen, and this is the note I sent to our telegraph tree that evening:

Dear all,


As promised, herewith an update on Helen’s progress from the Director of Communications and Strategy, Operation Helen, based at San Remo, still not in Italy, sadly.

We thought she’d escaped the swelling.  Don’t know why we thought that; after all, we’re bright enough with more degrees between us than a thermometer!  Suffice to say, Helen looks like she’s done twenty rounds with Barry Hall in his hey day (ask someone over 50 who is a Victorian).  Not only that, she feels like it as well with a dreadful headache.  There’s not been a lot of pain relief today as the clinicians don’t want the medication to mask anything lurking.  She was supposed to have an angiogram today but there have been problems with her sodium levels, not least because she started fasting for the angiogram at 5 am.   Once those levels are up, they’ll try again.

As many of you will know, the angiogram is an invasive procedure.  She has a lot to get through yet.  There’s not a lot of sleep to be had as the public address system seems to go day and night.  Sounds like a job for a consumer activist to fix that one, eh?  I wonder if we’ll be able to find someone . . . .

So, as much as we love youze all Helen would like to see you, it would be a huge ask for her to concentrate and be civil nice with the pounding head at the moment.  So please hold off, but feel free to keep those emails and SMS’ and chocolates for the Director of Communications and Strategy coming in.  She’s enjoying hearing from people by email or SMS as the iThingamies are still attached to her person. 

Next bulletin will be tomorrow evening, Friday, AEST, unless something else pops up, like Harry O’Brien (ask a Collingwood supporter) visiting the Grotto of Lourdes and being cured of whatever ails him in time for the Collingwood v Carlton match.  Oh, on that front, Rob (*Bob*), Rebecca, Paul & Lisa have purchased tickets, leaning on the side of things being ok, and will attend.  I know you want to hear about everyone in the family.  Myself, I would prefer Hawthorn and Geelong on Saturday evening, but I’m not sure how the players would cope with Trapper running after the ball as well.

What might interest you today?  Trapper sulking because it was too windy to go down to the beach, or the gorgeous pot of gold over Bass Strait this evening.  Lucky you’re on this mailing list: you get both.

Anyhow, till tomorrow.  Happy hour is about to begin in the Seat of Communications and Strategy at San Remo, Italy, Victoria.

Regards, Anne.

Trapper sulking

Trapper sulking

San Remo sky on Independence Day

San Remo sky on Independence Day

I decided to check Helen’s progress personally on Friday while Rod went to visit his Mum in Endeavour Hills.  It was another long day; here’s my report to the telegraph tree:

Hi all,


So, never mind Harry O’Brien’s (ask a Collingwood supporter) visitation to the Lourdes Grotto – actually, as it turns out, such a visit wouldn’t have helped as it seems he’s not getting on with the Coach.  Rather, the Houdini act of the year is Helen’s.  I went up to town, oh well, city, this morning and stayed till about 3 pm. 

She had already had her angiogram, which demonstrated that everything had gone well.  She had to lie relatively still for two hours after that, making it difficult to eat the couscous salad.  I fed her the green jelly and ice-cream before the ice-cream turned into cream.  Needless to say the couscous wouldn’t have been eaten had it been the last thing between Helen and starvation anyway.  So it’s still there. 

She then had the first layer of staples out and was able to wash most of her hair.  The cannula has also been removed, much to my Rod’s delight (“it’s time that came out; it’ll get infected; it’s a major source of infection”) so Helen fair skipped around the ward.  

The upshot of all this happy news is that she will be home in San Remo tomorrow.  She will need to return to town Hospital on Tuesday to have the other thousand staples out.

I will report again tomorrow when said miracle returns to San Remo before calling Operation Helen a huge success and closed, not to mention the position of Director of Communications and Strategy made redundant.  Hope I get a package chocolates will do nicely, but don’t go to any trouble .

Now I know this photo will pique your interest.  It’s the line of staples on her hairline.  Just think about it.  Oh, and would Helen (the Director of Coiffure) start thinking about what she’s going to do, please.

Phew, almost there . . . . 


Anne, Director of Communications and Strategy, Operation Helen

There are 38 staples holding this brain in its head.

There are 38 staples holding this brain in its head.

One wag responded to my suggestion that I might get a package thus:

I regret to advise you that the enterprise agreement you struck with Helen is probably silent on redundancy provisions and she must always have planned to skip off home well before they’d be payable. Get the puppy with the luggage tag to give you a lick.

Some good suggestions there.

It was terrific to get back to San Remo and watch Rob’s and Rod’s Colliwobbles win for a change.  Saturday dawned and Helen and Rob eventually returned to the seat of Communications and Strategy.  We had a lovely home cooked meal (yes, I can cook) and watched Hawthorn and the Wallabies both lose by considerable amounts.  I didn’t send what I thought was my final report until Sunday:

Dear all,


This report is a day late.  That’s what happens when both your footie teams lose by massive amounts you pay peanuts.

Helen was let out on parole of hospital yesterday morning.  After a real cuppa and a sandwich with all her immediate loved ones – which didn’t include Rod and me, as we were too busy at San Remo getting rid of all the evidence of the wild parties we had been having in their absence – she and Rob returned Rebecca to the airport, from whence she had come, and drove directly to San Remo without passing go.  Trapper was particularly pleased to welcome them as he knows that Rob (*Bob*) is a sucker for a cute face can always be counted on for a walk.  If anyone is near the airport, would they please check to see whether Rebecca is still there or has made it onto a plane to the nation’s capital.

They arrived home with a new coffee machine which Rob (*Bob* – actually, could you all just call him Rob as it would be easier for the Director of Communications and Strategy) spent the afternoon installing and perfecting.  They then took Trapper for a walk (see photo) and were cheered on by the neighbours down the street (thank you Lara and co.).  It was like a scene from a Collingwood Carlton grand final.  Trapper was, however, a little peeved as he didn’t see any reason that they couldn’t take him all the way down to the beach.

Helen’s head still hurts – I think mine would too with that many staples.  So she’s sitting or lying without moving too many muscles.  My Rod and her Rob (remember, that’s what we’re calling him now) have gone to French Island today to get rid of the hangover blow the cobwebs away.  I am thus in charge; actually I’m always in charge; which is where the second part of my title comes in (*Strategy*).  Rob (?have you got it yet) opened some lovely French red last night as we surfed between the dreadful football matches Le Tour and Le Tennis.

For those who live nearby, I think I’d still hold off on the visitations as she has a headache and is a little anxious about how she looks.  Despite my comment that it doesn’t matter how she looks, at least she’s alive, this hasn’t persuaded her that it’s not a pretty sight.  Please feel free to check with the Director of Communications and Strategy (digits continue to be set out below) though.

The staples will be out on Tuesday when Helen and Rob (?remember) return to prison Hospital.  

Slowly, things are returning to normal here.  Rob (you’re all ok with it now, eh?) played the piano this morning, Trapper lay down next to him in the sun and enjoyed it, while Rod did a sudoku or three and I did the washing.  Roast lamb for dinner tonight will finish the domestic scene.

The new puppy, Bailey, will probably arrive on Thursday.  Everyone here is looking forward to it, particularly Trapper.

Well it’s been a pleasure getting to know some of you and I’m sorry to those whom I may have offended with my gallows humour.  If any of you are in need of a Director of Communications and Strategy, feel free to whistle dixie call me.

PS:  I’ve also included a photo from the back lawn this morning where the kangaroos were having a feast!

I now declare Operation Helen all but closed.


Anne, Director of Communications and Strategy, Operation Helen

Trapper, Rob & Helen

Trapper, Rob & Helen

Kangaroos at home.

Kangaroos at home.

It turns out that a number of people demanded a final final report when Helen’s staples were removed from her head.  So, on day 7 of Helen’s post operative recovery, I sent out the following missive:

Hi all,


It turns out that I am required to reinstate myself as Director of Communications and Strategy one last time to let you know that Helen’s 38 staples are now out of her head and it is difficult to tell that they were there in the first place (photo attached).  Note iThingamy still attached as that part of the operation was a dismal failure. 

She tells me her head still hurts a bit but she’s enjoying being able to wash it.  So are we, I must say.

She’s still a little delicate but the Nazi carers who are in place have now instituted some strict rules, for example, the kitchen closes for breakfast at 10 am and no correspondence will be entered into.  You want breakfast after that, you have to get it yourself.  As this rule was implemented without consultation with the unions Helen, I relented briefly this morning.  But tough love will be in place tomorrow.

Helen has asked me to pass on the following message which she wrote a couple of days ago but I’ve been too slack only just found the time to send it:

Rob, Rebecca, Paul, Lisa and I have been really touched by the support of our network.  I have particularly enjoyed reading e-mails that the Director, Communications and Strategy (Operation Helen) has shown me.  It has been truly wonderful to know that so many have been looking out for us and looking after us.

This has been an extraordinary event in our lives.  While we initially felt almost cheated out of our holiday to the UK, we feel blessed that we didn’t go as there is every chance I wouldn’t have returned.

For those who have never believed me, I hope you now understand I really am the shy, retiring twin.  Not nearly as bossy as the Director, Communications and Strategy (Operation Helen) – although we feel very blessed to have had the Director and her good Doctor with us.

It’s just fantastic to be home and, despite the inclement weather, I am really enjoying looking at our views!  The Director is stressing about the washing – whinging that it “might” dry by Wednesday.  She hasn’t worked out that by Wednesday it’ll either be in Maffra or Launceston – depending on the wind.  I need to teach her about stress … That’s certainly something I’ve been learning about!

We hope to catch up with you in the not-too-distant future.  Please forgive us if we seem a bit preoccupied at the moment – my concentration is not very flash and I have trouble paying attention (particularly to the Director) at the moment …

Keep those e-mails coming though – I love reading them!

With much love

Helen and R(B)ob

I’ve learned a lot about you all while I’ve been doing this taxing but rewarding job.  I’ve learned a lot about San Remo too.  One of those things is that if you want the washing to dry, don’t get it wet in the first place.

Good luck, over and out!

Helen, Home, On iThingamy

Helen, Home, On iThingamy

The irony is that is was a medication error that diagnosed Helen’s problem.  She had been feeling dizzy and lightheaded and her physiotherapist and then general practitioner forced the issue which led to relevant scans identifying the aneurysm.

The Take Home Messages from this whole exercise were:

  • always take out travel insurance; make sure you do it when you start purchasing tickets and bookings – happily Helen & Rob did this;
  • as a general rule, anaesthetists ought to do consults personally and not via phone, especially if they are concerned about a patient.  Helen wondered whether the anaesthetist was going to administer the anaesthetic by phone.
  • have a telegraph tree:  it did take a lot of pressure off the family while they were still able to receive messages of care and support;
  • check your medications before you leave the pharmacy:  while the fact that there was a medication error that probably resulted in Helen feeling ill led to the ultimate diagnosis, Helen didn’t ever think she needed to check things from a pharmacist;
  • make sure you know what drugs you are supposed to be taking in hospital, especially if pain killers are on the list, so that you can be aware of timing when nursing staff are busy;
  • make sure there’s a plan that you know about for removing the cannula: showing interest in this will move the thing along a bit and prevent a major source of infection;
  • probably best not to appoint this blogger as your Director of Communications and Strategy:  she’s a bit light on the sympathy.

Anzac Day in Canberra

There’s an unwritten rule in Canberra:  heaters and woollens are not needed before Anzac Day.  That’s how long our mild Autumn is supposed to last.  Not this year.  As the apparent temperature plummeted last night, we turned on the central heating and put on the slippers.  And our last roses of summer are now picked and in the vase.  The scent is magnificent:


And there’s more!  Rod and Tom are finally (after 21 years of me pleading) putting paving underneath the clothesline as well as from the house to the clothesline.  Oh happy days:

Tom (on the ditchwitch) with Rod telling him what to do!

Tom (on the ditchwitch) with Rod telling him what to do!

First Person Consent

As promised, here is more on organ donation.

Australia has had a record first quarter in 2013 thanks to the decision of the 119 families who agreed to donate their loved ones’ organs.  There were 315 recipients.  If this trend continues, we will see the calendar year achieve more than 470 multi organ donors and 1,260 recipients.  This is a far cry from the trend of about 200 multi organ donors for more than 20 years until Australia’s reform package was introduced in 2008/9.

In 2012, there were 354 multi organ donors with 1,052 recipients.

So, we are well on the way to reforming the sector.  The Australian Organ & Tissue Authority has worked tirelessly on the various areas of reform, viz:

  • We now have a national approach so that patients and their families are treated uniformly across jurisdictions.
  • Staff have been provided to undertake the important work that was previously placed on staff in addition to their clinical load.
  • Funding has been provided to support organ retrieval and care of patients who are deceased but who are to be organ donors.
  • Professional awareness and education is ongoing to ensure that staff know the best way to approach grieving families and to ensure they are appropriately cared for.
  • Funding has also been provided for community education and awareness.
  • There are safe, equitable and transparent transplantation processes now in place and the Allocation Protocols are just one example.
  • The eye and tissue sector is being brought under the aegis of the Organ & Tissue Authority to ensure that it operates under the same criteria and guidelines that the organ sector operates.
  • Other programs are also in place such as the paired kidney exchange.

Australia is well on its way.  However, there is more to be done.  We must not rest on our laurels.   I have been concerned about two key issues:

  1. The fact that people who decide to be organ donors and who tell their loved ones can have their decisions overturned.  In my experience of speaking to individuals and community groups, Australians are incensed that their decisions can be overturned.
  2. The Australian Organ Donor Register is seen as an important component by community in its call to action following deciding to become an organ donor.  However, it is not used as a stepping stone in the donation process.

Chris Thomas, CEO of Transplant Australia, and I have developed a paper on First Person Consent.  It is about honouring the decisions of the organ donor and respecting those decisions.

Read our paper here:  Improving Organ Donation.