back to article 'Press pose danger' to health record introduction

Managing the media is a key part of introducing Summary Care Records (SCRs) successfully, according to NHS Connecting for Health. "The programme comes under intense media scrutiny," Siobhan Roberts, a communications lead for CfH, told a session at Assist's annual conference at the NEC in Birmingham on 4 June 2009. During the …

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  1. Badg3r
    Black Helicopters

    Again

    So rather than fix the problem, they would much rather spin it.

  2. Maurice Shakeshaft
    Unhappy

    Hang on a minute...

    I don't want my records on the NHS Spine available to all & sundry - regardles of whether it is a summary care reord or not - and have written to my GP requiring that they do not transfer it. In a recent article in "Private Eye" a patient was advised - if I understand correctly - that "No Summary Care Record = No NHS treatment"...

    What's going on here.

    I have nothing to hide so I have nothing to fear but will my choice not to be involved - if my GP acceeds to my request - raise a flag in the future with, for example, an insurance company or other (later permitted) Database accessor and thus give me a cause for genuine fear??

    I want to be told, please...

  3. NB

    @badg3r

    no surprises there then eh?

  4. James
    Thumb Up

    Agree with Badg3r

    ... get the system working as it should, on time, on budget and secure and the publicity will be positive.

  5. h4rm0ny
    Paris Hilton

    You know what we used...

    ...to call Connecting for Health (CfH) in our PCT (Primary Care Trust): "Cretins from Hell."

    I was one of the people raising the issues with the original system. And they were some big issues. The system allowed access to some very sensitive personal information. Their response was that "only approved personnel who have signed confidentiality agreements have access". Approved personnel translated to practically every doctor and medical secretary (and not a few receptionists) at every GP practice in the country. And having signed an agreement saying they wouldn't abuse their newfound access? Well that summed up their mindset nicely! They didn't care about effect, only about responsibility. They were effectively trying to get away with the argument that if you take all the locks off all the houses in a city, and then someone gets burgled, that it's the burglar's fault. Well yes, it is, kind of. But it's dodging the real point which is that the person who took off all the locks was a fucking idiot.

    We went through a few iterations of this. There was supposed to be auditing of who accessed what record initially (oh that's useful - because nobody who ever got hold of their ex-partner's address from a computer system forgot to ask themselves if they might get caught before going round their and assaulting them and their new partner). But apparently the audit trail feature was actually suspended due to, I have it on discreet but good authority, the problem that it recorded when MI5 or the police looked up your records.

    I've left the NHS now so I don't know what the current situation is completely, but having been fairly closely involved in this I wouldn't trust it and have written to my own practice explaining that they do not have my consent to upload or share my personal information with these parties. Furthermore, from my time at a surgery I know of two cases where a patient didn't share medical information with their GP because of privacy concerns. Fortunately, this didn't have negative outcomes that I am aware of, but if patients don't feel they can trust their GPs anymore (and however nice their GP is, if the data is on this system it's out of their hands), then it's a problem.

    Paris, because we can't have all our journalists out there covering weighty matters and having positive effects on our lives.

  6. Guy Herbert
    Pirate

    Still presumed consent, not real

    "In response to this, CfH changed its process, so every patient above the age of 15 and three quarters receives a letter telling them about the transfer, is pointed to sources of further information and is given 12 weeks to refuse."

    Is sent a letter. No guarantee that they receive it, or read it - or that it doesn't mislead.

    If your doctor is going to do something to you that might have significant consequences, medical ethics usually require informed consent, which is actual consent, not failure to answer, in circumstances where he is satisfied you know what you are able to understand about what is about to happen. The Department of Health couldn't care less about ethics.

  7. Dave Southgate

    Care records & treatement

    In a recent article in "Private Eye" a patient was advised - if I understand correctly - that "No Summary Care Record = No NHS treatment"...

    Anyone that tells you that you must have an SCR to recieve treatment on the NHS is lying and should thery refuse any treatment you should get a lawyer involved and prosecute/sue them for all they have and certainly take both the criminal & civil routes to court ;)

    You do NOT need any records or registrations with the NHS to recieve emergency treatment of any kind. To recieve non-emergency treatment most GPs will require you are registered with them but again that does NOT require a SCR or that you have one created upon registration.

    It is up to you to control your medical data, if you dont they will ride roughshod over your rights and privacy. I would suggest that everyone writes to their GP demanding a copy of thier medical records and also state in the letter that if any data is withheld you want to know why data was withheld (so you have a basis for challenging any decision made on your behalf by a doctor)

    And remember doctors have no right to make any decisions or choices about your life unless you are putting others at harm. Only then can they force a decision upon you.

  8. h4rm0ny
    Alert

    @Dave Southgate

    Gah! Please don't everyone request a full copy of their medical history. It's actually quite a bit of work potentially and believe me - the people who have to do it are usually very busy just keeping the place running what with all the extra forms and bureaucracy Labour heaped upon us during Tony Blair's Reign of Error.

    I mean yes, if you really want to see your records, then okay. But please don't use it as a means of protest. It's just going to stuff us up while we're trying to organize nurse cover or flu vaccination sessions for 6,000 elderly people. Note also, that at our surgery we would normally invite someone in to view their records rather than just send a copy out. Legally that's all that is required I'm fairly sure, but it's also to the benefit of the patient as they can be taken through the notes which are, being written by and for clinical staff, sometimes more usefully accompanied by explanations. Unless you're confident you understand the significant difference between an entry of "High Blood Pressure" and "Raised Blood Pressure" etc.

    Run for the Hills icon at contemplation of hundreds of people descending on three over-worked computer operators demanding their records

  9. n
    Black Helicopters

    @Dave Southgate

    By Dave Southgate Posted Monday 8th June 2009 13:16 GMT

    "You do NOT need any records or registrations with the NHS to recieve emergency treatment of any kind."

    TRUE.

    You do NOT need any records or registrations with the NHS to recieve treatment of any kind.

    FALSE.

    Nice try though Mr Southgate, Nice try...

  10. Helen Molyneux

    puzzled

    still trying to work out why it was so very hard for them to remove details of those who want them removed? Are they seriously going to keep all the data in for those who die? That is quite some storage requirement!

  11. Dave Southgate
    Boffin

    uh-huh

    You dont need any kind of registration with the NHS to recieve immediate emercengy care or ongoing care related to emergency treatment.

    You dont even need a registration to go into a NHS doctors surgery & have them see you, although the doctor is under no requirement to do so and even if they do see you they are under no requirement to treat you, plus of course you can be billed for any costs incurred. But still no registration is required, it is preferred but not required.

    So in essence you dont need registrations, you only need a registration with a NHS GP if you need ongoing, repetative care and even then only if you dont want to pay the full costs of treatment and have the benefits that registration brings such as your GP having a medical record of your history.

    Oh & the suggestion that people get copies of their medical records (which GPs are legally required to provide if asked for) isnt for some sort of protest, but it is prudent. As if you ever have a problem with the police/security services or social services any notes even unproven ones in your medical records such 'subject may drink to excess' will be used against you as many have found out to their horror/disgust/shock&loss.

  12. Dave Southgate

    just to note as well

    Well done N by misquoting me, if you can find that second quote in my first post please do tell me, as its not there. Hopefully my second posting will illuminate things for you however i suspect not.

    Second H4rm0ny, really everyones records should be their own and not the property of the NHS which has no right to hold our medical data to ransom. So if that means you have to do more work to provide us with what is ours, well you should get onto your bosses to help make the change. Then you wouldnt have to worry about peoples medical records.

  13. h4rm0ny

    @Dave Southgate

    "We should get on to our bosses", eh? New Labour's policy is to make things as difficult as possible for General Practice, the reason being is that their friends the american medical industry sees the UK as a big wasted opportunity for cash extraction. They can't compete with socialised heatlh care because this is almost always inherently cheaper, so New Labour has done everything it can to hamstring common GP Practices. We've seen funding for normal enhanced services (such as diabetic retinopathy) withdrawn and to make up the shortfall, practices have to start taking up new "bonus" schemes such as payment for preparing their records for the national IT system, adopting new software (from a short list of approved suppliers friendly with the government - incidentally a very closed market due to the immense strain of migrating between systems in Primary Care). Bureaucracy has gone through the roof in the last eight years. You really wouldn't believe the amount of forms and monitoring the government now demands. I'm not using that as a figure of speech. It is absurd. School teachers would gasp at the amount of red tape involved!

    I, when I was there, did at least support the idea of people owning their own medical records. This is better. There is a country that has this as a common model (I forget which, it's EU), and there is in theory such a system available in the UK, but it's merely a copy of the records at the GPs surgery and means of synchronizing it. But don't expect many to get anywhere appealing to "our bosses". FIrstly, a GP practice is not directly answerable to the NHS - they are private practices, though the government alternates between portraying them as its employees (when things are good) and castigating them as greedy doctors (when it suits). Secondly, the very upper levels of the NHS, the people Tony Blair was appointing at the DoH are the source of the problem. It does little good appealing to your enemy to fix your problems. I said it many times when I was working in the NHS that keeping our problems in house would do no good and our best weapon was public opinion and public awareness. Believe me, I did a lot to raise awareness of the problems with the SPINE (centralised records) when I was there, earning reprimands from my bosses. But the only time I ever saw victories achieved were when there was publicity or the threat of publicity. So go ahead - shout and howl in protest at this. I'm WITH you. But please direct it appropriately. Many General Practices are at breaking point. I have friends who have pretty much had break downs trying to keep up the bureaucracy and organisation and tight budgets. A friend of a friend committed suicide from the pressures of the new targets she was expected to keep in her hospital (Secondary Care, but still). All I'm saying is direct your protest and your anger to the right place. Putting extra work on a practice because you think it's your right to do so and that it will feed back up the chain is not going to help at all. The uppers at the DoH want us to fail so they can bring in the Virgin Health Centres et al. (No I'm not kidding - Virgin has been one of the big bidders behind all this).

  14. Ascylto

    Confidential - my arse!

    I know a senior consultant at a large British hospital. He says patient records confidentiality is a laugh ... just about anyone, including the cleaners, can get to see patient records in his hospital.

    Still ... the bigger the lie ...

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