NHS care.data - update

Following the accumulated doo-dah hitting the fan, the NHS has now done a back-pedal on plans to start extracting patient data from medical records and has delayed extraction for another 6 months.

Dissent Codes
As it stands, code 9Nu0 stops any data being uploaded.  If data has already been uploaded (either from your GP, or elsewhere in the NHS), code 9Nu4 only stops the HSCIC selling on your (full, easily identifiable) red data.  However, it does not stop them releasing red data to certain research organisations, or using that information in, say, the event of an epidemic.  Code 9Nu4 also does not stop the release of so-called "pseudonymised" or amber data - data which still has your NHS number, postcode, gender and age attached, and which is easily identifiable with by cross-referencing with other data sets, for example the electoral roll.  The only way to stop commercial organisations from getting this information is to prevent the upload of that information in the first place.  If you've informed your GP you want to opt-out, it's worth leaving it a few weeks and then checking that they've actually made the changes as requested.

I'm sure I read somewhere recently that there was talk of changing dissent codes so that 9Nu4 stopped the release of all data, replacing it with the NHS number and a dissent notice (which is, arguable, how an opt-out ought to work.)  However, I cannot find the link to that now so I'm taking it with a pinch of salt, unless someone can provide me with up-to-date info.

Summary Care
If you didn't opt-out of the Summary Care record (allowing different NHS providers - surgeries, hospitals etc. - to share your data between them purely for facilitating your medical care) then now would be a good time.  As far as I can make out, you can have an opt-out code for care.data on your record, but if you've not also got the code for the Summary Care opt-out, your information can be transferred to another provider via Summary Care who may then upload it to HSCIC.

Dissent codes for Summary Care: on the old system, 93C3. or XaKRy; on the new system, 9Ndo. or XaXj6.

Interesting Links
There's a new website set up by volunteers to ease the opt-out process: Fax Your GP

MedConfidential have published the board papers of HSCIC - including the board members' register of interests.  A lot of fat fingers in a lot of juicy pies there, which should come as a surprise to no-one.

Annoyed now - care.data

Twitter, j'accuse.  Also, I appear to have lost a morning to this, and it's left me with a headache and now an anxiety attack.  I need to get out and walk, but will post this first, so my annoyance and headache will not have been in vain.

There is a plan ("care.data") to transfer medical records in their entirity from GP surgeries to a central repository called the Health and Social Care Information Centre (HSCIC).  Once your data is there, they can sell it off; not just "green" truly anonymised data, but also "red" (directly identifiable) and "amber" (easily identifiable with cross-referencing) data as well.  Once your data is at the HSCIC, you have no say in how it is used, and no way to delete it out of their databases.  You also have no say in how third parties use that data once they have access to it.

To opt out, you need to specify that two codes be added to your medical records. This should prevent amber and red data being extracted.  (The HSCIC always has access to green data.)  You don't need to make an appointment with the GP for this, just submit the request via letter to your GP.  Do it soon - the mass extraction is going to begin shortly, though I haven't seen a definite date quoted anywhere.

Also: don't expect anyone at your GP surgery to know about this.  Don't let them confuse it with the opt out for Summary Care records (sharing your records with other care providers like hospitals).  This is about opting out of secondary use of your data.  That's why it's important to give them the actual codes they need to add.

More information
A GP's take on the plans: http://www.care-data.info

Information on how to opt out, including a pro forma letter with the relevant database codes:
http://medconfidential.org/how-to-opt-out

The Information Commissioner's Office has information on how to submit a "subject access request" - this is a request to an organisation about the data they hold on you, under the terms of the Data Protection Act.  They can charge you for the information, and some medical information is exempt from the act anyway, but it should be a way to check what information HSCIC hold on you.
http://ico.org.uk/for_the_public/personal_information

Petitions
There have been a couple of petitions started against the sell-off of people's medical records in this way:

SumOfUs petition: http://action.sumofus.org/a/nhs-patient-corporations
Government e-petiton: http://epetitions.direct.gov.uk/petitions/53994

The latter is more important - the government are legally obliged to respond if enough people sign - but it could use some promotion.

All about the game

Note: this was sat in my drafts from 16th February 2014; published 27th August 2015.

Some of the thinking has been partially eclipsed by new info I've come across or - discovered? - regarding reality processing (for want of a better term) and systems of aesthetics, but that'll be for a later post.

Sunday, Bloody Sunday

Hiding from the sun.
Trying not to think about
The rest of my life.

Since when was WET a thing?

I grew up with GMT (Greenwich Mean Time, still the legal term in the UK) which was replaced for technical considerations by UTC (co-ordinated universal time) because the former isn't defined specifically enough in scientific terms.  UTC has become more obvious with the rise of the computer age because time servers use it to synchronise times between different computer systems.

WET is apparently "Western European Time," comprising the UK, Ireland, Portugal and a few other places - in other words, GMT, or UTC+0 in technical terms.  Presumably use of WET within the UK is at least in part political, wishing to identify a pro-European mindset (with a direct comparison to how different time zones are used in the US, for example).  In an international sense, using WET can only identify a pro-European mindset, as it makes more sense to use UTC+(hour) as a) it's already in common international usage, b) it ignores daylight saving fluctuations - not all WET area members will be on WET at the same time - and therefore c) it's obvious to anyone looking at UTC+(hour) what local time it actually represents, which is really the whole point.

The big downside to using neologistic terms like WET, CET, EET etc. is the same as the use of the US equivalents - if you're not American, do you know how many hours UTC differs from, say, Mountain Time?  Do you even know which areas of the US run on Mountain Time?  Tell me an area uses UTC-7 however, and I know exactly what time it is there, irrespective of the time of year.

Infrequent!

Happy New Year!  I knew it'd been a while since I posted but I didn't think it'd been a month.  Ho hum.

In my defence, there's a new blog in the blogosphere where I've been spending some of my time - the Haiku blog, which is a joint effort with my sister.  It's been surprisingly fun so far.  The only other outlet I've had for haikuing (good word, if a little vowel heavy) has been Creatures Caves, and those have really been only the creatures-related ones.  There's no reason they couldn't be posted here I suppose - but collaborative projects are always good.  (Well, I say always.  That might be a bit optimistic, but let's leave at that in the spirit of the season.)

No real resolutions this year: that always seems like a recipe for disaster.  The only thing I really did want to get done this year was read (on average) a book a week; this was prompted by cleaning the bookshelves before Christmas and seeing how many books I have that I either haven't read or want to read again.  So, this year is the year!  I'll create a new page to hold the details.

Thinking about it, there are several other things that I want to get done this year.  I've gone back to HabitRPG to try and keep focused on certain tasks; I'd given up on it when it went haywire with new updates before Christmas, but I've just cleared everything out and started again.  It's still very random in places, and working things break as frequently as other bugs are fixed (one gets the impression of infinite monkeys with infinite laptops) but once it settles down a bit (assuming it ever does) I'll do a review.  If I don't swear off it in frustration first, that is.

Also - once a month really isn't enough to update a blog.  It's not that I don't have things I want to blog about, it's that I'm not making time for it.  Partly this is because it falls into the "fun/frivolous" category.  That said, I want to work on being kinder to me and less type A this year, so maybe making time for blogging will help.

Looking better

It's bizarre.  I don't know what's happened to WordPress.  A few years ago, when LiveJournal was bought out by the Russians, a lot of people started looking for a new blogging platform.  At the time, Blogger was a bit of a joke, buggy and awful to use.  WordPress was fast, sleek, and while it definitely had a learning curve, it was worth it for the range of options it gave you.  Once it was set up, the interface was straightforward, and away you went.

Not any more.  It's a couple of years since I set up a WordPress blog, and it's gone south during that time.  I'd been aware of the interface getting worse for a while; I was never quite sure when clicking on something would catapult me out of the dashboard and into the guts of wordpress.com, from whence I'd struggle to get back.  They're obviously losing out to Tumblr now, as the basic options are pretty dire, and they're heavily pushing paid options, even for fairly basic customisations.  Custom CSS has always been a cost option, fair enough, but the free themes always used to have a range of customisable settings.  It seems far more restricted now, and a lot of the themes are downright ugly.

Last year, someone told me about Weebly and I had a play.  It's ok, with a very basic point-and-click interface aimed at people who know nothing about HTML, but it's aimed at people wanting websites, not blogs.  This month I've been corraling blogs from all over the place, and transfering them to one WordPress account, only to find that setting up a blog there is now painful, and not really worth the effort.

So I thought I'd have a go at Blogger again.  And - well.  Google have obviously been working on it since they bought it.  There's a fairly restricted set of themes, but most of them don't look too bad, and they are all easily customisable in a manner reminiscent of the old LJ setup - colours and fonts all available to change, along with column layouts and widths.  Custom CSS provided free.  Much as Google do appear to have gone to the dark side, they've done a very nice job in resurrecting Blogger.  It's certainly a lot less hassle setting up a blog here now.

Lordy, it's been a long time.

Not as long as it looks - there were 5 posts since the last one, but one is pending a re-write and the other 4 were no longer relevant.  It really has been a rollercoaster of a year; in some ways, everything's just the same: same challenges, same body, same brain.  In other ways - ideas about life, things I've learned or realised, things I'm still processing - there's a lot gone (and still going) on.

WordPress wouldn't let me use Garland - don't know why, it's still running for existing sites - and I'm rather disgruntled about it, as there are no decent free 3-column themes available any more.  So I'll have to pootle through over the next few days and tweak, not that much seems tweakable any more, unless you pay $$$.  I'd install the software to my website, apart from not wanting that kind of learning curve this close to a major holiday.

Is it that time again?

It's suddenly autumn. It's got cold, and it's dark early at both ends of the day. And I'm doing the weird organisational thing again. (Briefly, I was relieved to see that Deb Perelman at smitten kitchen also does this - then realised she has the excuse of a procrastination-inspiring book tour. No such excuse here.)

The weird organisational thing seems to happen every year, or often enough that there's a pattern emerging. It may be something to do with the September light, which is still bright but at a low angle, and highlights every single speck of dust on every vertical surface. (It may do the horizontal ones too, but I suspect I filter those out. There's only so much impending houseework you can safely become aware of at one time.) The housework urge gets rapidly transmuted into tidying up other, unrelated things - perhaps because they're not housework - and soon there are lists everywhere of unfinished projects, to-do lists, and grandiose organisational plans get written and rapidly forgotten. It may be that this is all distraction to get me away from looking at walls and cupboards until the light drops still further. If so, I suspect most years it succeeds. Looking back through my data on various computer systems at home, there's an awful lot of this stuff lying around with an October datestamp of one year or another.

This year, however, things have been a little bit different. Things are actually getting done, which is a bit freaky. (Things on a to-do list are to be done? Who knew?) The last couple of years have not been great, and this last year has been a sod, and I don't think I'm alone in that - there seem to have been a lot of people having a shitty time of it this year, and it can't just be the weather. The climate seems to have become a metaphor - how we can push systems till they break, or feel like systems are out of control because they work to a longer timescale than we do; we're not here for very long, and really know squat about what we're messing with, when it comes right down to it.

So - given that control (or at very least the illusion of it) is essential to a healthy mind, perhaps it's no wonder that the reorganisation has started with renewed zeal.

Caaaaaake!

Today's is Paul's birthday, so I baked a cake. This is the first cake I've made in months, and the first two-pan cake I've cooked in years - in fact, I can't remember the last time I did. It was our ninth wedding anniversary on Thursday, and I might have made a Victoria sponge at some point in the last nine years, but I don't remember.

Three years ago, for his 40th, I made a large carrot cake for the party. This year, I did coffee and walnut, just to ring the changes. It didn't turn out too badly...



...so I thought I'd put the recipe down so I can remember how I did it.

Reblogged from BigMouthedWoman

In fact, the ability to start out upon your own impulse is fundamental to the gift of keeping going upon your own terms, not to mention the further and more fulfilling gift of getting again all over again — never resting upon the oars of success or in the doldrums of disappointment, but getting renewed and revived by some further transformation.

Getting started, keeping going, getting started again — in art and in life, it seems to me this is the essential rhythm not only of achievement but of survival, the ground of convinced action, the basis of self-esteem and the guarantee of credibility in your lives, credibility to yourselves as well as to others."
~ Seamus Heaney | excerpt from his commencement ceremony speech at The University of North Carolina at Chapel Hill | May 12, 1996

Re-blogged from BigMouthedWoman at Tumblr.

MOTH!!

(I apologise to anyone who thought that heading should've had a trigger warning.)

The thing no knitter wants to see. Having registered at Ravelry last night, I collected up some choice yarn and works in progress to take photos this morning so I've got a bit of non-identifiable content up there. Imagine my feelings when a dead moth - small, and very beige, but (at least) also very dead - fell out of my favourite skein of yarn.

Said moth was squished to oblivion (no point taking any chances) and the yarn is now soaking in the sink. Touch wood, there was no evidence of any larval activity. But it did make me think that, as my production speed isn't great at the minute and the lepidopteral season is upon us, I really ought to have the works-in-abeyance under cover. The thought of baby moths chomping through Paul's new aran before it's even done really doesn't bear thinking about.

(Although, it does make me wonder about The Kilt Hose That Will Not Die - that wool's been knocking around for the best part of 3 years, most of it spent out in the open or in open plastic bags, and nothing's touched it. A project's got to be bad if even moths avoid it.)

There was another clothes moth I found, up on one of the sealed stash boxes in the spare room. The fact that both were dead makes me wonder if there's some mystical guardian spirit in the house who sees its mission as the protection of all things yarny from voracious insects. One can fervently hope.

Edited to add: A moth just dropped out of another project - I think the kilt hose. Obviously this is a Sign that I need to take a bit more care, and spring clean the works in progress! (The only yarn that was out was the strokable stuff, and that's now going to be washed.) Again, no larval activity and the moth was dead, so it adds a bit more weight to the Yarn Guardian theory, at least.

Twisted butternut squash soup

Well, there is a post with actual content on the way, but wisdom teeth on the move resulted in me feeling like someone had punched me in the head today, so not much got done.  Late afternoon, @guineapig66 tweeted about making soup with butternut squash, which started me drooling so I decided to make some.  And it turned out so remarkably well - albeit more like purée than soup, but that's not a criticism - that I decided to write it down so I don't forget it.

The best go-to advice for cooking butternut squash I've found is at Kalyn's Kitchen.  I discovered this site a few years ago while low-carbing and, though Paul and I both fell off the wagon, there are a number of recipes on Kalyn's site that have become regulars, roast squash with Moroccan spices among them.

Ingredients

1 medium squash, peeled, deseeded and diced
2 tsp spice mix
1 tbsp olive oil
1 medium onion, quartered
2 sticks of celery, trimmed
2 medium (or 3 small) carrots
1 pint (or more) vegetable stock

Pre-heat oven to 200°C (about 400F, gas mark 6ish).
Mix the spices with the oil, and coat the squash with it.
Put the carrots and squash in the oven for 20-30 minutes. Then add the celery and onion and cook for a further 30 minutes. Stir every 15 minutes or so.
When the vegetables are soft (but not coloured, unless that's your thing), add to a saucepan, add the stock and simmer for 10 minutes - to help the flavours meld and make sure the veg is cooked right through.
When done, cool a little then blend with a stick blender. The soup will tend to thicken as the veg breaks down, so you may need to add more stock, or just hot water. If you don't have a blender you can mash the veg, though the onion might give you a bit of aggro. Stick blenders are well worth the money for soup-making.

My only slight criticism of this was that it was very sweet in the finish - probably from roasting all the veg, but partly from the squash being the type of squash it was. Younger celery, or more of it, might have offset this (as celery tends to be slightly bitter); alternatively, potatoes could be boiled in with the stock to make the flavour less intense. It's only a minor quibble though - with bread and butter this was a very good tea.

A quote from Devil Miyu

Too long for the "Quote of the Week Arbitrary Time Period" box, but I rather like this...

Some of us are paralysed at the possibility of making a mistake. We act as if our errors are like watercolours which, once brushed on, sink indelibly into the paper, set forever with no possibility of being rectified. Being so inclined, we make even insignificant decisions traumatic experiences. Eventually, such people ruled by their inactivity and indecision, must put their lives on hold.

On the other hand, there are those who see their errors as opportunities. When they make mistakes, they are not suspended in agony, nor do they stop trusting themselves.

It may be comforting to note that everyone, no matter how wise or sensitive, makes mistakes, and what is more, will probably continue to do so. So why not relax, accept your imperfections and join the human race?

A life spent in making mistakes is not only more honourable, but more useful than a life spent doing nothing. This journal serves as a reminder of my mistakes. It is, after all, through mistakes that we gain experience in Life. I hope to learn from these mistakes whatever lessons there are to learn, gain more experience from learning and hopefully, by doing so, I won't repeat those mistakes ever again.

Quoted from the personal journal of Devil Miyu.

Not so much procrastinating as deciding.

The two can look remarkably similar, especially when the deciding takes time. Too many options + poor prioritising = pain in the arse. C'est la vie.

I seem to have spent much of this year trying (and failing) to sort myself out, specifically in the area of time management. Part of the problem is that, while I have an idea of what I should do, I'm less strong on what I need to do, and have little actual clue about what I want to do. The 'want' and 'should' seem to be diametrically opposed in terms of motivation, which explains why often, not a lot gets done.

Limbo

It occurs to me it is possible to limbo dance. Might have to give that one a bit more thought.

The Yarn Harlot has just put up a fairly amazing post about what she's been doing for the last few days. It's technically impressive stuff.

It's interesting, because reading that she'd decided to devote a whole day to spinning a week was, strangely, what helped me decide I wanted to go self-employed.