The comparison that occurred to me was to when someone gave me a tablet of epilepsy medication at a party 30-odd years ago, assuring me it was a great buzz – and I wound up feeling really awful and foggy-headed and having to find somewhere to lie down. Sativex wasn’t nearly that bad, but it also wasn’t my idea of fun.

For future reference- none of the epilepsy drugs give a buzz, even the ones on the market 30 years ago. Ask anyone who has to take them. All they'll do is make you feel really, really awful, or worse. Probably why there isn't street value out there for most of them- no buzz/high/addiction attached to a medication, then there's not a black market for it.

Economic jargon has always been a bit over my head but I get the general gist and also agree a step in the right direction. As someone on the receiving end of this particular policy it's been obvious for a long time now the "inflation adjustment" system as been deliberately rigged against us. I see my mother's Super increased yearly (indexed to the average wage or something like that?), yet I can confirm that the Invalids Benefit has literally increased by 0c for the last 3 years, and all of 56c/week the year before that- no doubt because of the current alleged low inflation which of course doesn't translate to reality. None of us are expecting an increase this coming April Fool's Day, ie another cut in real terms.

As for any political party reversing the Ruthenasia cuts? Yeah, right. Labour made their position on that perfectly clear during their last reign and have done nothing in the last 8 years to speak up for beneficiaries. Sadly the Greens have gone very quiet on the subject recently; one can only assume they too are now too scared to show any outward sign of being "soft" because the "B" word is now so toxic in this country that politicians can't fix the damage they've done for fear of losing votes.

I survived the 1969 Mental Health Act and the tail end of the institutions. Like many others I was miraculously "cured" by virtue of the new Act and the closure of the Bins, ie when they suddenly didn't have anywhere to lock people up for any reason indefinitely anymore. Those of us still alive from those days are very much survivors because many didn't make it out alive or cope with being deinstitutionalised. (Please don't forget it was purely financial, not idealogical reasons that institutions were shut down in the Anglo countries in the 80s/90s).

Some of us chose to give evidence about our experiences to the Confidential Forum under the Clark Govt over 10 years ago; the extremely damaging report was subsequently published, but we're still waiting for an apology from ANYONE. So offically the State will not even acknowledge what they did to us, yet alone apologise.

The general public has never wanted to know, or cared about the "loonies" and while I'm very pleased to see that mental illness in general is more spoken about now, and that a few brave high profile people are speaking about their experiences, the harsh reality is MH has been so stigmatised for so long it's ingrained in the public and politicians not not care until it affects them personally.

It took me almost 20 years to escape the System because I was institutionalised, and ironically left with PTSD as a direct result of my incarceration. But there are rare times I've need acute contact with the system and am well aware that it's flipped from they couldn't lock me up fast enough to "we'll call you back when we can". And you're right- like many others I know, I will NEVER tell anyone connected to the health sector if I'm remotely suicidal. Either they'll leave you too it or the cops will be breaking down your door. I'm still scared of them 30 years later even when I know they can't legally can't touch me. Friends who have been sectioned under the 1992 Act have similar problems. Once you've been sectioned for what ever reason, you can never trust them again. There is nothing worse than being incarcerated and losing your civil and many human rights without having commited a crime.

Apologies if I've rambled a bit; this topic's a bit hard for me to summarise.

Thank you for your comment Simon. Very good point about the media coverage, which of course has been more previlant and accessible (and partisan) from so many sources over the past 20 years. So any major tragic event is now in our face immediately and around the clock, but it's also impossible to know which version of the "truth" we're getting at times. propaganda is still alive and kicking.

I've seen the suggestion of WW3 raised a few times on assorted blog sites, though not in the MSM so far. One person suggested it's been going on since the Soviet invasion of Afghanistan in 1980.

Of course since WW2 we've had Korea, Vietnam, Malaysia, and the Balkans (the ones I can think of off the top of my head that involved mutiple countries) and which had the potential to become so much worse.

I was a young teenager back in the 1980s when the Cold War was in it's last major flare-up. There was a saying I picked up from somewhere (maybe one of the armageddon movies?) "No-one knows how WW3 will be fought, but WW4 will be fought with sticks and stones." The implication was pretty clear, even for a teenager. I'd forgotten it until the morning of 9/11 and the endless terrorist attacks attacks, and general mess in the Middle East since then, the amount of countries involved and now the French president's talk of an act of war- do you believe that we're in a world war, even if not in the conventional sense?

Hi Sofie, sorry I'm a bit late in on this thread. Re your question about them being able to operate to remove the part of the brain that's causing his seizures:
Surgery is only an option for a very small group of people with uncontrolled epilepsy. The seizures have to be proven by very intense testing to be originating from a specific part of the brain, and even then that's got to be a part of the brain that can be cut out without causing severe damage to senses/mobility etc. In NZ all the testing and surgery in done at Auckland Hospital so if that were an option for Alex I suspect by now it would've been investigated. If the seizures are generalised, ie they start with and affect the whole brain then surgery is never an option.
I hope that helps with your question.

I was the second person in NZ to testify at the Confidential Forum, and having read the final report I can assure you it's a very accurate representation of what went on in the psych institutions. Those of us who survived them are still suffering the effects decades later.

I don't know of anyone who wanted financial compensation (although with the benefit cuts it would be very handy now), but we did- and still do- want, and deserve an official apology from the Government. I had this vague idea at the time that my testimony MIGHT help get that but wasn't surprised when it didn't. Around the same time the Clark Govt was formally apologising for the Poll tax on the Chinese immigrants some 100 years ago. Priorities, right? The whole Forum thing was a token gesture- apparently it was meant to make us feel better, talking about our experiences, and they would also provide free counselling if required. Everything except say sorry. There was never going to be any action taken as a result of the report so why they even bothered was beyond me, and the general public was never going to care either.

One doesn't want to ever find themselves at the mercy of the state in NZ. So don't get chronically sick or disabled, especially if it's not covered by ACC. Don't ever have to find yourself reliant on a benefit for the rest of your life. And never take it for granted that it won't happen to you.

Thanks for your articles Hilary, they've been really interesting reading.

I must beg to differ Rob. There are too many people suffering from chronic pain (not necessarily terminal), as well as neurological conditions who have NOT been able to find relief through prescription medications and get relief from cannabis. As a medical doctor you really should know that they are not going to work for everyone all the time. And if you’ve been following recent stories about the young children with very severe epilepsy who are have very real, beneficial effects from cannabis extract. Hell, there’s been clinical trials done that PROVE the effectiveness in the treatment for a number of chronic conditions. Besides, if it didn’t help people they wouldn’t use it, right?

There is no moral justification to crimialise people who just want to alleviate their suffering when it is perfectly easy to get medical marijuana legalised. Most of the population have no problem with that- except our politicians. Medical marijuana is not the same as smoking weed so what’s the problem?

From time to time I still see in the newspapers reference to a convicted criminal (more often than not of a violent crime) being epileptic. So what if he/she is? about 1 in 100 people have epilepsy so statistically that means a few convicted criminal will. But for some reason the media never seem to mention if they they have asthma, diabetes, heart disease, etc. So basically, they're reinforcing the old idea that somehow, "epileptic" is a character trait and a contributing factor for criminal activity. Btw, most of us don't consider ourselves to be "epileptics"- we're people who just happen to have epilepsy.

Those of us with "hidden disabilities". I'm a university graduate (educated), look and sound completely "normal " but severe epilepsy means no hope of employment and the rest of my life on a benefit, so poor. I consider myself disabled because I can't participate in society as someone my age should be. But that's my personal view- epilepsy is such an individual condition. 70%of people are able to get full seizure control, the rest of us, well impairment is a matter of degree, and it's also a matter of the amount of stigmas still going around, especially with employers. We have an incredibly high unemployment rate.
personally I found the disability quiestions in the census a bit difficult, there wasn't really a suitable box to tick so I ticked impaierd thinking and memory!!