Minor dramas and major performances

25Sep08

this week there has been a conspiracy of irritations, minor dramas and major performances, specially designed to raise my stress levels and to add completely unnecessary complexity to my life. Why can’t it all be simple?

Here’s a rundown . . .

blocked dishwasher – ewwwww. lots of ucky water swooshing in the bottom when I opened it this morning. I just LOVE rummaging around filters in my marigolds. NOT.

wonky worktops – having paid a small fortune for a new kitchen a mere 6 months ago, we have a problem. One of the worktops has a join near the sink. It has been improperly sealed and now water has (of course) got into it and made it go all wonky. Added to that the sealer around the sink has come off and the edging on one of the worktops has chipped, I’m a little annoyed. When the miserable cow at the kitchen place told me that worktops are not covered under the warranty, I nearly went into thermonuclear meltdown. The big bang machine would have had nothing on me . . . . fortunately, I managed to stay more or less reasonable whilst at the same time making it clear that her response was both inappropriate and inadequate. She’s going to talk to her manager and get back to me. She’d better.

broken toaster – I think I jinx electrical equipment. Our old 4-slice toaster was nowt fancy, but it worked for years until the front fell off. My mum bought a new one and gave us her old 2-slice-toaster . . . which was fine, but not up to the job when there are 5 people demanding toast at the same time. So, I took advantage of a half-price appliance sale . . . . and bought a nifty new Kenwood 4-slice toaster – v nice and chrome and shiny – about a month ago. Now, only 2 of the toastery bits will go down. When I tried to take it back, they wouldn’t exchange it because I hadn’t kept the packaging. I’m very extremely narked, and now have to go through all the aggravation of finding a box for the wretched thing and posting it off to Kenwood so they can look at it. Meantime I have no toaster, because I Freecycled the old ones. Gah!

I’m getting militant about the school run. On our way we pass a building yard, or building site, I’m not sure which. This of itself is not a problem. The problem is that it lies on a particularly twisty bit of narrow country road where there are no pavements – blind corners coming from each direction – and people really belt along there in their cars. Very often there are lorries and other plant either parked or crossing the road, with no-one looking out for traffic to warn cars to slow/stop or any sort of traffic control when one lane is blocked. I’m sure it’s only going to be a matter of time before there’s a nasty accident there.

Second gripe about the school run: part of the road floods. It wouldn’t flood if “they” (the council, I assume) properly maintained the drainage channels taking run-off from the road into the ditches beyond the verge. The same ditches wouldn’t overflow if the channel taking the water down into the canal wasn’t blocked with dead leaves and other debris.

Third gripe! We have to walk under a railway tunnel . . . . it’s single file traffic on a 3-way control, but it’s very narrow, an ‘A’ road (hence v busy in the mornings) and there is no protection of any kind for pedestrians – and it’s the only place you can get through, and is used by a large number of school mums both ends of the days. Frankly, getting through it with 3 small kids unscathed is little short of a miracle and is the single most terrifying thing I’ve ever had to do. And I have to do it every day.

And driving is not an option. Why? Because the 3-way control aforementioned doesn’t take into account a 4th road feeding in on our home side of the bridge – to get under the bridge depends on kind people letting you out of the traffic. It can take 40 minutes sometimes to do a 2 mile journey (which is a one of the reasons why we walk) in the car because of the queueing. Why they can’t just bring the lights back 50 yards and put a 4th phase on to let that feed out I have no idea.

sniffy receptionists – I handed my letter exercising my right to opt out of the NHS national database (Care Records Service) and the receptionist got all tutty and irritated with me. She tried to tell me I couldn’t do it! And then made a big fuss about how much work I was now making . . . grrrrrrrr. I was tempted to point out that I paid her wages, but thought that was a bit Tory of me so refrained. I’m worried that I thought about it, though!

waiting for appointments . . . gah! make an appointment for 2:20 because I have school pickup at 3 . . . and THEY KNOW I have Aspergers and I can’t cope with being late (particularly where my kids are concerned) and that delay and getting close to breaking the routine means my stress levels go sky-high . . . so, when I turn up and it gets to 2:49 and we still have not been seen, I’m about to throw a major tantrum . . . when Rumpus decides he needs the toilet . . .  I’m standing in the queue to tell the obnoxious tart on reception (see above) that we’re going to have to cancel and re-book (doubtless to further tutting and disapproval) when the nurse swans out and tells us she’ll see us now. O thank you, o mighty one, for deigning to grace us with your presence. Our time is as nothing compared to yours. Actually, it’s not her fault. Reception have overbooked, allocated 5 min appointments where she needs 10/20 mins, and they’re short-staffed – one nurse instead of 3. And yes, we (just about) make school pickup, though Honey is the last one stood there and starting to look a bit anxious as I belt across the playground . . .

cupboard unpackers – Minni decided to unpack all my kitchen cupboards this morning. Egads, the mess! Took me a good 30 mins to sort it all out again . . . (I have cupboard tidiness issues).

what to do with kale? got some in the veg box, no idea what to do with it. Off to google. It does not look appetising. I expect a rebellion on this one . . .

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7 Responses to “Minor dramas and major performances”

  1. Hi Ellsea – Wow! When it rains, it pours. I hope things are going better for you now and you’ve gotten the counter top/worktop issue resolved, plus have found your packaging for the toaster. I admit, it’s frustrating when others don’t do what they say they will do, at the appointed times.

    P.S. Thanks for stopping by my blog and leaving a comment. I truly appreciate it.

  2. 2 Mat

    You know that opting out of the Care Records Service will only compound the inefficiencies inherent to the NHS that you highlighted in your post. It will only serve to prevent your doctor, or other clinician, from providing you with the best standard of care in the future.

    Also, imagine if everyone opted to prevent doctors from making paper medical notes about them, it’d be madness.

    I don’t know what your objection to the Care Records Service is, but I’d be interested to hear.

    • 3 ellsea

      oooookay, one thing at a time, in no particular order.

      I’m not suggesting that my doctor should be prevented from making paper (or other) medical notes about me (or my children) when I go to see her. That would, indeed, be madness. As far as I’m aware, opting out of the Care Records Service does not stop my doctor making notes and keeping them on file in the surgery.

      I also fail to see how whether I opt in or out of the Care Records Service has anything to do with the bookings procedures internal to the surgery – if I need a 10 or 20 minute appointment, then they should set up their computer booking system to allow them to allocate me a 10 or 20 minute appointment, rather than creating a huge backlog for themselves by packing their system with appointments on a schedule they *know* they cannot keep. That has nothing to do with the Care Records, it is a purely an internal organisational matter. Equally, if they are short-staffed on the day, then they *could* easily inform people arriving for appointments that they are running late, and offer the option of re-booking at another time, or waiting in line for their turn. That way, they avoid issues with time/schedule stresses that particularly affect people like me, or anyone else for that matter who needs to be somewhere else at a given time and doesn’t have all day to hang about awaiting their convenience. That is a simple matter of courtesy.

      Finally, to get to the heart of the matter.

      My objection to the Care Records Service is that I believe it compromises my right to privacy. My GP rightly has access to my detailed and complete medical records. I have no problem with that, and believe I can reasonably rely on her to maintain that duty of doctor-patient confidentiality. I also have no problem with *relevant* details being made available to any other doctor or clinician that I might need to see as a result of being referred by my GP – they do not *need* access to my entire medical history to be able to treat whatever condition I present effectively and efficiently. Furthermore, I do not believe that there are sufficient controls on the levels of access allowed to the Care Service Records that will ensure, beyond doubt, that *only* the relevant details will be seen by *only* the clinician/specialist to whom I am referred at the point of referrral, and for that reason I have opted out. I choose to protect my own privacy and that of my family, I choose to retain my right to consent or not to the access of my detailed medical records, and to retain my right to choose to whom I make those details available. As far as I’m concerned, those rights and choices are are far more important than any so-far unquantifiable and rather tenuous ‘improvements’ in the efficiency of the NHS.

      • 4 Mat

        To be brief ;-), opting out will harm the system because everything (including booking an appointment, checking in to a clinic) will eventually be electronic. The system needs at least a critical mass of people to not opt out for it to be any use at all.

        My comment about paper notes was merely to draw attention to what it would be like if clinicians didn’t have this information about you (paper notes will be scanned into the computer eventually anyway, so only kept for emergencies). Also, if you are concerned with security and privacy, paper notes are much less safe in a number of ways than electronic – I know, I used to work in a medical records department

        I find the whole privacy agrument a bit of straw man to be honest, a symptom of our individualistic society where we can be hyper-sensitive to what we may perceive as a threat to our personal rights (usually fuelled by the tabloid media). It is a simple truth that the better and more comprehensive medical information that a clinician can access about you, when and where they need it, will improve patient care. To opt out of the system and deny them this, to send them scurrying around for wherever the small handful of paper files may be (in whatever location) is not a sensible choice and a massive waste of time for all concerned. Do you know how many clinics are delayed because the patient notes cannot be located?

        If it were a celebrity, or a patient with something like HIV, I would understand the request for greater privacy, and the CRS system does allow for this (with data in various envelopes and anonymised etc…), but for your everyday citizen, it is either misinformation, vanity, or obtuseness to opt out of a system that will eventually bring so much benefit to healthcare.

  3. 5 ellsea

    lol, difficult to be brief on this but I will try 🙂

    I completely understand that everything will soon be computerised – my GP surgery has been all computer-managed (including medical records) for some years now. I still maintain that there is a huge difference between my GP, with whom I have a confidentiality agreement, and the wider NHS community, with whom I have no such confidentiality agreement.

    As I mentioned initially, making relevant data available to clinicians to whom I am referred by my GP for a particular condition is one thing altogether, and where this is *necessary* to facilitate medical care, I have no issues. I do not agree that the Care Records System is the *best* way of doing this. I object to the Care Records Service because it is a massive, centralised database that is made up of several different elements:
    – personal demographic data
    – summary care records
    Both of these will be nationally available to all NHS staff, up to and including high street pharmacists, should they decide that they need to see them. The lack of access controls means that my personal data is not protected, and there is nothing to prevent any one of the 2-million-odd NHS staff and associates using my records as they want. Currently, the only way to lock this data down is if the police/social services agree that there is some need (e.g witness protection programme, domestic abuse) that justifies the stop-note, but AFAIK those security mechanisms have not yet been implemented. Given that, last year, the NHS was identified as the worst of all UK organisation for data breaches (Information Commision, May 2010), I don’t have a huge amount of confidence in the ability of this information to be controlled and managed correctly.
    – Care Records, including the ‘sealed envelopes’ you mention – all my detailed & sensitive medical records available to anyone in the NHS (PCT/SHA) region who might want to access them. As far as I am aware, the ‘sealed envelopes’ have not yet been developed and there is widespread doubt as to whether they would work, given any clinician could break the seal should they feel the need to do so.

    The Department of Health (DoH) have tried using the argument that by having these details uploaded to the spine, they will be available in an emergency. However A&E Departments do work to established clinical protocols for patients for whom they have no medical history (my sister-in-law is a nurse), and logging in to a centralised database to reference what they hope are the correct medical records does not happen at present – and seems unlikely to happen in the near future. If you did have a condition, e.g. diabetes, or penicillin allergy, it would be far better to wear a medical alert bracelet. If you arrive in A&E without ID and unconscious, no database is going to be able to identify you.

    My final, and probably biggest bugbear, is the ‘Secondary Uses Service’, which allows various departments and associated organisations to access my information for research & analysis purposes – whether into specific medical conditions, or more general demographic purposes, and that this information is not currently supplied in anonymised format. Again, as far as I am aware, the argument about the balancing the risks of anonymity vs utility is still ongoing.

    I disagree entirely with your assumption that there is some sort of duty on my part to allow my details to be used by the NHS (or any other large bureaucracy) in the interests of efficiency and more effective management. I do not consider it to be vanity, misinformation or obtuseness to opt out. In this I think we are approaching the argument from opposite sides. I do not take the utilitarian view that you profess – the greatest good for the greatest number of people justifies undermining their rights to privacy. I see no obligation on my part to participate in a scheme to facilitate greater government involvement in my life than there already is – I *AM* an individual, not a dataset, and I am not prepared to allow my personal information to be available to any one of a vast number of NHS staff and associated persons just because it might make their life easier.

    • 6 Mat

      That confidentiality agreement exists between you and every NHS worker, as it forms a part of all NHS contracts. Also, your paper medical records are at the mercy of all sorts of people whilst they are ferried around the hospital, usually loosely stacked in trolleys, often left unmanned in corridors, which I would be more worried about to be honest.

      I should probably make a distinction between the 2 forms of electronic record that are under development: 1) the summary care record (national) and 2) the detailed care record (local). The values of he former are potentially great, but unlikely to be realised any time soon, but the latter is vital to the development of local NHS services. The local record is merely a replication of your locally held medical record, and cannot be seen by anyone apart from local NHS staff, and then only when they have a “relationship” with the patient. Not sure how you could object to that.

      It is a little precious to worry about some doctor in, i don’t know, Sunderland, looking at your summary medical record – not that they would, obviously – and if they did there would be an electronic record of this (compared to never knowing who has looked at your paper medical record).

      Apart from a high minded theoretical objection to greater data sharing and access to your medical information (by people involved in your care), I’m not sure what the real danger is. What worries you about someone knowing that you’ve been in hospital for an appointment, or that younhsve asthma?

      Just feels to me that this, like so many other things, is subject to an unwarranted amount of attention and anxiety. I don’t think it’s your duty to opt in, but I do think that everyone who opts out is making it more and more difficult for the local NHS to do their job in the future.

      • 7 ellsea

        I’m not sure that either of us is going to have our minds changed on this – I think we’re too far apart.

        The security around paper records that you keep referring back to is not the issue here, so I don’t think there’s much point getting into circular arguments around them. To assume that this new system will eradicate paperwork of any sort is unrealistic and hence this problem will remain, regardless of how & when the CRS is implemented. Certainly any hospital or GP I visit owes me a duty of care to safeguard my data in paper – or any other format – and I would expect proper procedures to be in place to do so. That these procedures are not always observed is no more than a reflection of the imperfect world in which we live.

        One in which people are stressed, tired or merely bored, and paperwork is tedious, dull and largely uninteresting to anyone other than those intimately affected by it. One in which some people – a minority – are dishonest and will actively look for opportunities to misuse other peoples’ information.

        My concern with the CRS, the Spine – the summary care record, and the personal demographic – the opt-out I have exercised, is based in this reality.

        IMO, if anyone is being high-minded and theoretical, it is you. Yes, in a perfect world my records (or anyone else’s) would only be accessed and viewed by clinicians and other care-givers directly involved with me, with whom I do have a direct relationship. People for whom I am not just a dataset, to whom I am an individual, and in whom I believe I can rely upon to preserve my patient confidentiality. Who, should my confidentiality be breached, can relatively easily be identified.

        If I could convince myself that this would, indeed, be the case if my records were uploaded to the CRS, I would not have any problem at all with it. However, the lack of proper safeguarding within the system to ensure that this *is* the case means that I do not trust the NHS to properly protect my data from unauthorised access – whether accidental or intentional. The NHS employs some 2 million people, and I am sure that the vast majority of them are honest, decent people and I wouldn’t dream of questioning their professionalism or integrity. However, even if only 1% of those people are not honest, that’s still c.20,000 people who potentially could access and misuse my data. That could be anything from a widespread identity fraud down through a group or individual targeting those of particular sexual orientation, religious affiliation, ethnicity or medical condition (HIV springs to mind), even down to something as simple as a senior consultant giving his password to junior admin staff because he ‘doesn’t do admin’. (Believe me, I have seen this happen in any number of organisations – the unwillingness of senior figures to embrace the use of computer systems is endemic. I think it’s a status thing). And this is why I have opted out – not because I’m worried about your Dr Foster in Sunderland, or Gloucester, or wherever (I am not so ‘precious’ or paranoid or full of hubris to suppose I am of the remotest interest to him), but more because I am concerned that my data is not properly protected from the criminal or malicious minority within the NHS itself who could gain access to it with relatively little difficulty.

        As to your argument that this system is necessary to ensure that the NHS operates efficiently and effectively in the future …. well, I’ll have to beg to differ. My background is in IT project management, and having implemented my fair share of systems of different kinds into vastly different organisations, both in terms of size and culture, I have to say that the computer system that has a truly transformational effect on the organisation within which it is implemented is a rare – if not mythical – beast indeed. Computer systems do not, broadly, shape organisations – rather, they support and reflect existing organisational structures, cultures and aims. Where new computer systems have sought to change cultures and procedures on the grand scale, I have seen (in many cases) the organisation adapt around them and largely carry on what it was doing before, unless there is massive support, involvement and pressure to change from the very top of the organisation, through all levels of management and bought-into by frontline staff. I am not close enough to the NHS to say whether or not this is the case, but there appears to be little evidence of this from the outside. Call me cynical, if you will, but I’m reserving judgement on this one.

        Until such time as the CRS is proved to be as secure and effective as it is claimed to be, I prefer to err on the side of caution and avoid the risk to myself and my family that my data – demographic as well as medical – is not misused. Maybe I am being a bit paranoid about this, but in *this* world I’ve found – the hard way – it pays not to be too trusting and wait to see how agendas, systems and the like play out.


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