The Ca Pros Report

Otherwise known as the Metastatic Castrate Resistant Prostate Cancer report (I am now officially diagnosed as MCRPC.

After one month on Abiraterone my PSA is not significantly down but at least it's what the white-coated ones call "static". And, checking my pulse and blood pressure once a week and measuring my ankles now and then, I seem to have had no discernible side effects. So far, so good.

Part of taking out this new lease on life involved accepting nomination for the Village Residents' Club Committee and at the annual meeting yesterday I was elected. That'll be an interesting and challenging experience as the previous committee was not highly regarded. But there will be some people who won't necessarily want a whole lot of change at once. We are going to have to take it very quietly, I suspect.

Another annual meeting tomorrow. I expect to be coming off the Community Patrol Board  but will continue with media and promo work. Which will probably mean I will have to go to meetings anyway! But it's good to see some new people offering... and we have a very substantial team of volunteers these days as the profile of the Patrol is being raised in the community...

I’ve just received the last issue of Budgetline. This magazine has been coming to me for longer than I can remember in my rather remote capacity as a Life Member of New Zealand Family Budgeting Inc.

The short articles in this issue are quite poignant as it has been given over entirely to the Head Office staff and other key people who are losing their positions in the big re-shuffle that is taking place. Again and again I read of disappointment that the organisation which they have served, both as paid staff and volunteers, is losing its identity next week.

In 1973 I wrote the first letter that went to about 25 organisations with a proposal to form a national Federation. Later we got a couple of dozen people together in Wellington for a day. And what an outcry there was! They were afraid they’d lose their autonomy, their personal involvement, their idiosyncratic workers. They didn’t want to have a national boss...

But it was all about money. Every group needed some financial assistance for expenses for its volunteers. Some wanted to pay experts to do the job. Government would only give assistance to the 30 or so groups if they presented an organised front. So, with mixed feelings, the Federation came into being.

It’s been a huge success. It has lifted standards, provided proper supervision and training and widened the work. And, to the concern of some of us who were around in the 1970s, it has absorbed millions of dollars a year of taxpayer funding to achieve this.

But there are other groups involved in this kind of work who have never affiliated or don’t qualify for affiliation. Government now invites all family budgeters to come together in some much broader organisation. So the Federation, which we brought into being under pressure from successive Governments, will next week be wound up because the Government wants to move in a new direction.

It’s touching to read the stories of those who have worked in the Federation in the last decade or two. But times have changed, politics of voluntary community services have changed and the need in the community is more vast than any of us could have conceived in 1973. So some of the Federation’s prized principles will be surrendered and unfamiliar territory will have to be traversed. At the end of this month, everyone will move on.

I salute those who transformed a modest voluntary operation into the NZ Federation for family budget advice of a very special kind. As it moves on, I hope its people will infuse the new organisation with a sense of personal service and commitment. This new venture must not become just another quasi government department.

Dave Mullan is author of—

The Family Budgeters, a personal account of the work of family budgeting from the 1960s to the establishment of the Federation.  As one of the last “steam budgeters”, Dave was asked by the Federation Office to put together some kind of record of the earliest days of this remarkable movement of voluntary community service. That he was able to achieve this in 2015 is all the more important now that the Federation itself is moving on.

A Small Qango, the story of the Home Budgeting Advisory Committee to the Minister of Social Welfare, 1977-1987.  Dave served on this Committee for its full ten years, eventually becoming its Chair. It was the first attempt to direct public funding towards voluntary family budgeting groups. In charted new paths for a Quasi Autonomous Governmental Organisation.

End-of-Life Choice and end of Voluntary Euthanasia Society

A quick AGM yesterday disposed of the name with which most of us have been a little uncomfortable for some time. The word "euthanasia" seems to be a turn-off for a lot of people. So, what used to be the Voluntary Euthanasia Society of New Zealand is now to be known as End-of-Life Choice. With hyphens.
The Committee is the same, the objective is the same, but we have chosen to eliminate an unsatisfactory expression.
Ironically the guest speaker in the afternoon public session. Dr Jan Bernheim, used the word "euthanasia" liberally and without qualification. But his fascinating talk made it clear that Belgium has moved far beyond our sensitivities around the use of the word. And they have certainly moved far beyond our tentative reaching out for some new practice that will express the growing concern for suffering people to have some choice about the ending of their life.
Before 2002 Belgium did not have the highly developed hospice movement that has made such a different to the quality of death for some decades in this country. But when they did address the issue of dealing with the last stages of life they had the opportunity to include a style of what they cheerfully call "euthanasia" along with a wide range of palliative care.
This linking of palliative care with doctor-assisted-death delights me. I've been feeling for some time that the body that is already dedicated to dignity in dying is the body that should embrace the opportunity to carry its objectives out to the full. Hospice, far from railing against physician-assisted-death, should be the organisation that develops a compassionate philosophy of patient choice about life's ending and introduces practical opportunities for that choice to be exercised.
When former Prime Minister John Key said "NZ doesn't need voluntary euthanasia because we have Hospice" he demonstrated a total misunderstanding of both and uttered a forgivable lie. When Hospice says NZ doesn't need any kind of doctor-assisted death, they also are fumbling with the truth. Worse, they are denying their organisation the opportunity to take a great step forward in their own mission of improving the ending of our lives.

I see the Interchurch Bioethics Committee is "disappointed" that Seymour's End of Life Choice bill has popped up in the Parliamentary ballot box. Well, I don't share their disappointment - I am overjoyed.
However, I appreciate those of their concerns which are based on realities. I hope, with them, that we will move through this process with dignity and precision, taking care to listen to all sides.
But to plead that the whole matter be held over indefinitely is failing to read the mood of the country. Parliament is already setting us a great example in hoping the matter will go away. Contrary to what they and the ICBC think, this matter is already an election issue and we need to make the best use of it that we can.

Another dip in the box

Another bill that has been just drawn from the Parliamentary Ballot box is also of interest to me. It's a bill that would legalise the use of medicinal marijuana... I might be glad to have access to that somewhere along the way before I decide about "medical aid in dying" (as I would like it to be called in this country).
But that's looking ahead at the moment. So far, have hardly started into the 720 doses of Panadol I was accidentally prescribed a few months ago.

A Lucky Dip

David Seymour's bill on "end of life choice" has been drawn from the Parliamentary Ballot box. It has lain there for two full years and the luck of the draw was the only hope that Parliament would even discuss the issue.
Though neither of the major party leaders is keen to have the debate it is now likely that Members will have to at least consider it in the fading weeks of the parliamentary term. And now that the bill is on the table there is no way it cannot now be an election issue.
The annual meeting of Auckland district's Voluntary Euthanasia Society/End of Life Choice is tomorrow, and the national annual meeting is a week later, also in Auckland. Both meetings will be enormously encouraged by this news. I'll be there to share the satisfaction and plan some strategy.