Whether I should opt out from the NHS health data sharing scheme is an emotional not a rational decision. I opted out.
I see the point of it. GP and hospital records go to the Health and Social Care Information Centre in Leeds, where they may be analysed to see what health provision works best. “Free text”- what the GP notes about symptoms- would not be sent to HSCIC. Diagnoses, test results and prescriptions would be.
I thought the data would be used for research, but the “Clinical Practice Research Datalink” already gives information to researchers.
My email archive gives a complete record of me, in my real name. Someone has a record of all I have bought at the supermarket in the last three years, and is able to sell that information. My data is out there already. Then again, my GP said she wished they could opt out all their patients, rather than have us opt out individually. She has concerns about the data protection. I have concerns about large Government computer systems, which have made a mess of every new benefit for the last twenty years. But, mainly, I don’t trust them, so I opt out.
Mmm. Do Buzzfeed quizzes record your responses for advertising? What about personality tests?
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I am lying in bed feeling powerlessness and terror, after two things on facebook which remind me of two separate-
I went to the GP to ask about counselling, as recommended by the psychiatrist, and my “while I’m here” was about breathlessness cycling. I have no crushing pain in the centre of my chest, I just get out of breath cycling where I had cycled quite happily last year. She said, well, exercise more, you have exercised less in the winter weather.
So, yesterday, this started a thought in me: my way is to withdraw. Cycling up that hill, get a bit breathless: stop cycling and moan about it. Then I thought, no, my way is to get the bit between my teeth and battle on despite multiple discouragements, to the end. Like then.
-But that was last century.
(Thoughts of reverting go through my mind. Don’t go there.)
One friend is dying of cancer, palliative care only, one will stay in hospital tonight for tests and fears cancer. Life is a slow tragedy with one end. So-
More exercise could do me good, spiritually: that moment minute or hour when I push on though I want to stop.
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-Too low for a racer, too high for a tourer, not much use to anyone really, said the man looking at my bicycle gears. In about 1988. I remembered it, and thought, I am the kind of person who remembers small slights for decades, and tortures herself with them. Then I thought, character revealed in one comment- why was he cycling Lands End to John O’Groats alone, again? Perfect memory for a writer. Being positive takes effort.
Am I the only one who sees others posting things like “stay away from drama and negativity” and worries it is all about me?
I have acquired a meditation stool. So I will still be uncomfortable, bored, distracted or confronted by bits of myself I don’t like in meditation, but my feet won’t go to sleep.
The geese form pairs and fly low, circling over the river, honking constantly, for the joys of Spring.
Clare Flourish 
First you don’t drink, now you cycle too? Appalling. Was I pretty in you dream? Did I look glamorous? 🙂
I would have opted out of any system that sent anything regarding my existence to Leeds. In fact I’d pay for the anonymity if I had to.
A tendency to see the world in egocentric terms is natural animal behaviour. A mis-firing in the brain. When parents divorce children think they bear some sort of responsibility. When people die our first thoughts are ‘what if I had…”. When our Breton Spaniel hears a loud noise he thinks it’s a personal reprimand and spends at least an hour in hiding unless we coax him out. In a practical sense, how could we have 360 degrees of perspective. At any given moment we can only look in one direction.
The task is to compensate for that by always asking one’s self how reasonable thoughts are. Is he (Mike) paying with coins because he hates me and wants to annoy me, or is he just doing it because he’s practical and doesn’t want to be wasteful? Has someone rung the doorbell when I sat down to have tea and read to destroy my day, or is it merely a coincidence? Were they looking at my hand because they think it’s strange a man wears a diamond ring, or were they just interested in the ring itself?
I like that last one because it falls under the major category of we don’t knows and don’t need to knows. And as we won’t know, we can choose the option which is of most benefit to us which is to presume the best 😉
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How could you ever be other than pretty, mi duck?
I posted that on facebook, and had some assent. Yes, we feel it is about us. Yes, we know that is wrong, but the reflexive feeling remains. So, one creates “drama and negativity” from an injunction against it. It takes effort to put that feeling aside.
I have been once or twice to Leeds, and liked it.
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I had to laugh. You get my first snort of the day award. I really must post these up on one of my blogs at some point. Daily blog snort or some such. Information and the NHS, as in IT information rather than patient information (which is another story) is just risible. You would think that someone with half a brain would have worked out years ago that it would have been a good idea to have systems that could possibly connect with each other. Why would they do that? Given that most of the professionals don’t communicate remotely well about the patients they are treating, they’re certainly not going to want their computers to chat. There was some big programme in the 90s, can’t remember the name now, began with R. It just fell apart. Total disaster. So now they can all share data? I would have opted out too. On the grounds of not trusting NHS IT and not liking data sharing in the first place.
I do take exception to Pink’s comment about Leeds though. I will find a way to get my revenge for that one. Perhaps to tell him he looks seedy not sexy with that fag hanging out of his mouth in his avatar?
I hate cycling uphill. But my problem is my useless legs. No idea what is wrong with them, probably insufficient use. We have mountain bikes. Well, and a touring tandem amongst others which we don’t use as we nearly fell off last time we tried to get on.
I meditate in bed or on the sofa. A mistake. I fall asleep.
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You fall asleep in bed? That’s what you want, isn’t it- almost always…
It would be useful if A&E, say, could read the GP notes of an unconscious patient (Americans note this is a British blog). GPs do not always forward the whole record to the new GP. Universal Credit is rolled out far more slowly than the Government had wished, the new National Insurance computer system was a disaster in the 90s, government computer systems are always a disaster.
On my only time on a tandem I fell off, and the person behind sailed over my head into the ditch, breaking her jaw. They are difficult to steer.
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Forgot to say in Spain patients get their own X-rays to carry around. There was a suggestion of that in the UK at one point but clearly failed the 1984 test. Medical records in the UK were a walking disaster.
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I have friends from Leeds, or nearly Leeds. They fall into the category of lovely exceptions. When they visit they’re allowed to stay inside the house and come in through the front door!!! And I LOVE Yorkshire puddings! Does that get me extra credit points? 🙂
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I don’t know what you think in other contexts, but I feel that any appreciation is better than none at all. As long as your friends are not from Bradford: Bradford people would not appreciate being told they come from “nearly Leeds”.
Credit points come from all sorts of things, not necessarily all from being Good.
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Where? I often say I am from near Leeds because people have heard of Leeds but not my town. We were actually nine miles away. I need to know exactly where and whether or not they are natives or imports. (Imports doesn’t count for many points although they/you get a few for choosing to live in Yks)
Yorkshire puddings eh? In a large tin or small ones with the main course? With currants? And onion gravy? Only the correct answers will give you any points at all.
And you certainly aren’t in credit after the first comment, so you need to get out of negative equity first. Clare was also right, there’s not a lot of love lost between people from Bradford and Leeds.
I have a post written (in my head) about Yorkshire people. But in the meantime here is something to keep you going, including a mention of Yorkshire pudding which gives some clues to the correct answers …
http://wp.me/p2c8OG-p0
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I was writing a message and … believe it or not … my computer had a kind of spasm and suddenly started play NRJ Hit music from France. Hmm. I agree with the Agendist, who is wise as ever and pleasantly sarcastic. From my humble perspective, I think you need medication to calm you down …. I realize that British doctors are stingy with meds (they’re famous for it), however, I think you need something like 60 milligrams of Paxil and six milligrams of clonazepam spread through the day. There is also a new drug, designed to help PTSD sufferers sleep … and it works by somehow (don’t ask me how) blocking out bad memories and unpleasant thoughts. I have to take it so that I stop waking up the building by screaming from nightmares! Anyway, from the perspective of America … I think you are not sufficiently medicated for the process you’re going through. Seriously. Mind, you could always drink, as Pink suggests … a nice bottle of Malbec in the evening.
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Drink can be liberating as well as dulling.
I don’t know. My dreams are moderately pleasant, there are few demands on me- this afternoon, I must return a library book- and I seek endorphins or whatever through exercise. I am working through the stuff. I want clarity. In a novel, a woman remains all dried up because she is angry and resentful, and cannot see the obvious way forward, she is so full of her resentment against the man who wronged her. There was a road ahead you did not see. Taking away the pain, like last year- I dulled myself, without medication- does no good. In my opinion.
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I suppose we’re all different in this area … have you read much of Elizabeth Bowen? Her novels capture a certain … something … to which you might relate. I love her writing.
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I have read no Elizabeth Bowen. Can you recommend one?
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Absolutely ! The Last September … it’s tragic and sad, but true to history. It’s long been one of my fave novels, and that from quite a glum character (such was our Elizabeth). Also, I always recommend that people (a) first understand that Daphne du Maurier was lesbian and THEN (b) read Rebecca. Wow … pow !
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On the other hand, we Brits think that Americans are addicted to anti-depressants. Although you do know more about what you are taking because you have to pay for it through your terrible insurance system.
In fact many British GPs were all too prone for reaching for the prescription pad as soon as you walked in through the door before you had even said what was wrong with you. Hence the introduction of GP fundholding (now defunct unless it has been reintroduced (in my absence) by another name which is usually the case with the NHS.
From a personal and non-clinical perspective, I would always recommend drink before RSSIs or whatever the current drug of the moment is.
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Drink is always recommended … and, in my case, I’m being treated for Post Traumatic Stress, so it’s a tad different. In fact, I began my treatment at St. Anne’s in Paris … and the French are stingier with drugs than the Brits!
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My investigations are into hormones. I have had a change of dose, and will have a second blood test shortly. I have had Selective Serotonin Reuptake Inhibitors for two periods in the past, to no effect I could discern.
Sometimes I wonder what proportion of the British population is on one medication or another. Surely over 50%.
Ah. US 70% or 48%; in England, Blackpool, Barnsley, Redcar, Durham, Middlesbrough, Salford and Sunderland are the most depressing places to live, where one in six are on the anti-d’s; other pages from my Google are on illegal drugs in the UK, rather than prescription drugs, apart from this: a prescription lasts one or two months, many old people are on a dozen different medications (I’ve met them) and it says that 18.7 prescriptions were issued in 2012 per head of English population, up from 12.4 in 2002.
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I only take a few drugs for my PTSD … an anti-depressant in the morning, along with clonazepam … and then some special new drug designed for PTSD at night, along with another clonazepam. So, I don’t feel over-medicated … but I do feel correctly medicated, which strikes me as the secret. Hormone balance and regularity is particularly tough, especially in transitions (I have a friend, Toni, so I know). Perhaps you need to find a better medical team … or be more assertive with this team? All that you describe could be attributed to hormone imbalance.
Toni once went berserk and started roaring around the house, crying and saying that she was changing her name to Vivian … and that we could call her Viv. The neighbors wanted to call the paramedics, but fortunately I found the phone number for her doctor at Cornell-Weill hospital, and she said, “Get some caffeine in her, give her three ibuprofen and two of the blue pills in her cabinet.” I did it (and it was rather like taming a rabid hyena) … and within twenty minutes she was just quietly crying with embarrassment and then fell asleep. Yes, I did manage to get her on her bed … I’m something of a strong boy for a gay boy.
Anyway … you’ve got to work it, or your team does.
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I’m sure I read a link from Clare’s to yours but then couldn’t find yours again, but the Paris story rings a bell. Unless a lot of people with PTS start off in Paris?!
And in my case as a health service manager, GPs did dish our drugs willy nilly, using money that could have been spent better elsewhere. But I’m not just talking anxiety/depression/stress, I’m incuding snuffles in that. The British mentality is that ‘we have a free health service so we’ll go to the doctor’ when we really don’t need to. Trouble is, we often do, to prove that we are sick and thereby need a note to stay off work.
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I knew of one GP who had the complaint that he had his prescription pad out before you sat down. He provided good/dreadful medical reports, always saying no the patient could not walk fifty yards/whatever, with no detail of conditions, so no weight as evidence.
The one who got drunk was allowed to retire rather than getting struck off, though the rellies who blamed him for a death were not pleased by this.
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I went to lunch with Dave Moor. Newcastle GP if you don’t now, look up wiki but it’s not very accurate. The irony was he was regarded as being a very good GP, good manner and low prescribing. Just helped people to a few early deaths
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Well, I could see how such a mentality might develop ! Starting off in Paris was a result of the incident, and simply a matter of fate. I just worry that Clare should be happier and more joyful … mind you, I don’t suppose that’s really for me to worry over !
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I have never been joyful. Someone asked if I never smiled. People tell me, encouragingly, how beautiful my smile is. And- I am smiling now.
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As you should … funny that’s another thing we have in common. All my life people have told me to, “Smile!” And I almost always thought, “I was.” My smile is subtle. You have to know to know it. My friends all know.
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