Cruel But Sadly Not Unusual

Last week I mentioned having been gadding about Britain for a few days, including a day trip to Norwich. I had driven up there on August 2^nd to see fellow blogger Anna Raccoon, about whom I wrote this last year.

Her content has been quite simply awesome. Astute and incredibly rigorous, she has attracted the respect and admiration of journalistic commentators, and regularly put many in the news profession to shame with her attention to detail and almost bloodhound-like determination to verify sources and evidence. 

Although long time readers here will mostly remember her partnering up with Old Holborn to spring Nick Hogan from prison, her articles have often been electric and searing on extremely spiky subjects. Tackling stories such as Savile from a position of accuracy rather than hysteria is not an easy thing to do, and her weaving of personal accounts into her writing - as she has done brutally in recent days - is as brave as it is hypnotically compelling.

Well, as many of you will know from reading her blog, she has been suffering from a rare but virulent form of cancer which has attacked her spine and left her paralysed and bed-bound (though still passionate and determined enough to fight the general election in June).

The Blocked Dwarf at Grandad's place explains this in detail.

Anna’s spine is what doctors refer to as ‘oh dear, not good’. Even without the BIG RED ARROW I put on [the scan picture]; even without being able to identify what is bone, what is muscle and what is nerves you can see that there is something amiss. If not, go to Specsavers. 

The Raccoon explained it thus: her doctors and carers have been puzzled why hoisting her onto the commode had been causing her ‘some discomfort’ (doctor speak for ‘PAIN’). The MRI shows that something has dissolved the ‘knobbly bits’ (doctor speak for, I assume, ‘transverse process’ and ‘arches’) of her verterbrae (T1/T2 I think but I still count on my fingers). Those boney knobbly bits protect the spinal chord which now lies open. Do I need to tell anyone that exposed spinal chord is not a good thing? Long and short the doctors are now puzzled how she has managed to live so long with being turned, manhandled and hoisted daily. 

The slightest movement of her body below the shoulders could kill her.
So at the moment they are giving her doses of an anaesthetic to paralyse her in her sleep at night so she doesn’t toss and turn and wake up dead. She can’t be hoisted on to the commode, nor even have a bed pan shoved under her and so: 

“I literally have to crap in the bed” [sic] 

Don’t forget she is still perfectly lucid, her head is clear and so she can fully enjoy the utter loss of every last scrap of dignity every single time the team of nurses have to come and roll her onto her side, keeping her in position, then clean her down. Of course the fact that the meds and the drugs haven’t destroyed her mind is a good thing but….
Worse still the exposed spinal chord also means she probably won’t be going home anytime too soon, which she desperately wants to do. 

And today G had to bring in the right tools to cut her wedding ring off her finger. The steroids have caused her fingers to swell. Yes it is only a piece of metal,’rose gold’ actually, but that bit of metal means something to her and G, they’re a bit old fashioned.

As you can see, she has already been suffering immensely with her dignity being stripped away by disease, and - since she is, to be blunt, very close to dying - had been confined to a bed in Norwich's Priscilla Bacon Lodge which is where I went to meet her. We had a good chinwag for a few hours, during which she described truly astonishing behaviour by the staff which not only compounded the indignity, but was also unbelievably cruel!

You see, she switched from smoking to vaping three years ago, and had a small Ego CE4 type device. For those who don't know what that is, it looks something like this.

It is not very powerful and gives out a tiny amount of vapour. But - and I think you can guess what is coming next - the hospice told her she couldn't use it. More than that, though, they did it in a way that was condescending and offensive. Here is how she described it by email.

What happened I found out in stages - apparently someone saw me at the week-end refilling the vape from the 'sipped case' - and told them. This evening a nurse walked over to me me and said, 'what a sweet little teddy' and proceeded to play with him - 'Oh do you keep your pen in there, good heavens no its a vape'. It was so odd that I didn't twig at first. Well, I got the rules and regulations read to me in such a patronising tone of voice.  

But it was just the way it was done, pretending to 'find' the vapeur like that, it just added to all the electricians checking plugs, and signing disclaimers for sandwiches, and everything else, I'm not a bloody child, I'm a grown woman whose been more independent than most of them can begin to imagine, and now suddenly I've lost the use of my legs and I'm treated like I'm 3 years old. 

This is apparently how staff at a hospice (run by MacMillan, according to Anna) treat someone in her dying days. Someone who worked at a high level at the Court of Protection for years as a Lord Chancellor's Visitor; has a double first class honours degree in law; is respected by top journalists for her striking writing and attention to detail; and is a Medical Claims Lawyer who has spent the last couple of months appearing regularly in the media using her impending death to campaign for more funding for the NHS.

They even said that they would (taking advantage of her paralysis) put it just out of her reach. How caring, huh? The senior doctor was called, Dr Wilkins, who explained that as there wasn't evidence to prove that e-cigs were safe or unsafe, they were banned on health grounds. On health grounds! For a woman who is days from dying in excruciating pain from cancer.

She is on a regime of intravenous Ketamine - the drug designed to stun a rampaging elephant - and Oxycodeine, but apparently nicotine is not to be tolerated.

Because, you see, they have a policy.

Now, I made enquiries and found out that they also have a dignity policy which should be adhered to in situations like this. Here is part of what it says on the one for Norfolk Community Health and Care NHS Trust.

- Support people with the same respect you would want for yourself or a member of your family
- Enable people to maintain the maximum possible level of independence, choice and control

I'll leave you to make your minds up as to whether they have followed the dignity policy in this case, but considering the government's Tobacco Control Plan - released last month - stated that "e-cigarette use is not covered by smokefree legislation and should not routinely be included in the requirements of an organisation’s smokefree policy", you'd have thought that in these circumstances their ideological and ignorant smokefree rules could, and should, have been relaxed in favour of preserving Anna's dignity.

It seems a Director of Public Health agreed, and offered to speak to Dr Wilkins to "advise" him seeing as he is woefully ignorant on the subject. So I left that Wednesday having given Anna the DPH's number to pass on - along with a load of Nicoccino and some of my stash of Zyn - safe in the knowledge that some sense would prevail.

Not so though. I visited her again this weekend and she told me that the next day they had dismantled another vape pen that her husband - the awesome Mr G - had brought in for her. They unscrewed the top so she couldn't possibly use it and took it to the property office in this envelope.

Now, either Dr Wilkins didn't bother to ring the DPH - someone who vastly outranks him - or he did ring but decided to completely disregard the advice. You have to both marvel, and be disgusted, at the astonishing arrogance behind that.

Either way, it illustrates the disgraceful nature of the fanatical zealotry that tobacco control has fostered in the war against smoking nicotine. The 'smokefree' mantra has become a shibboleth that drives a coach and horses through tolerance, compassion and common decency.

I often remind you that we are on the side of the angels here and the nanny statists deserve a demonic eternity or even prison time, but when 'caring' professionals think this is the decent way to treat someone with possibly days left to live, they make my argument for me.

I left Anna on Saturday - after sharing glasses of pink champagne sent by one of the many admirers of her work - as the sun sank over the river Yarm and boats sailed past the riverside window of the annex her true hero of a husband had built for her last days. She is as comfortable as it is possible to be in her situation, and at least is now able to vape while she waits for the inevitable. I find it quite incredible that anyone would think it compassionate to deny her that tiny pleasure for the sake of an ignorant and arguably indefensible policy.