Summary Care Records! CARE?

Back in March I blogged on the introduction of the NHS Summary Care Record, and made it clear that I thought not asking people to ‘Opt In’ was a catch all for getting as many records on the datasbase as possible.     Read that posting by clicking HERE.       Clients were of course given an option of ‘Opting Out’ of the scheme, however to do that you had to return a form to the NHS requesting that they send you an ‘Opt Out’ form for you to complete and then return to them, what a load of messing about that is.

Anyway I made it clear I was going to ‘Opt Out’ and promptly returned my request for an ‘Opt out form’ to the NHS, this I did on the 26th March, then I waited and waited and waited and waited, until finally today over 16 weeks later I receive a slip telling me that ‘ I Recently Requested….  16 weeks, recent, I don’t think so?  and also that the forms are out of stock!  (see pic above).    Is it that the demand for ‘Opting Out’ is so high, or is it simply another ruse by the NHS to make it as difficult as possible to ‘Opt Out’ of this scheme?    Whatever the reason it is totally unacceptable.

Strangley, for some reason I thought this would happen, so I have downloaded the form and sent it to my GP.        If you want to download an ‘Opt Out form’ you can get one by clicking Here

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9 thoughts on “Summary Care Records! CARE?

  1. I like this bit:

    If you decide after we have created your SCR that you do not want it, we will ‘hide’ your record to make sure that health-care staff who try to access it will not be able to see it.
    […]
    It is possible to apply to have your record deleted rather than hidden, but that will be difficult if the record has already been used to give you care.

    I doubt that a “hidden” record would remain hidden for long from someone who isn’t healthcare staff – ie someone who has unauthourized access to the database anyway – which I would think is the concern people have.

    The moral of the story would seem to be not to let them create the record in the first place.

  2. Chris: Due to a software malfunction at the mailing centre dealing with information/opt-out form requests, people got sent late and/or the wrong documentation, or got missed out altogether. Apparently this problem has now been rectified.

    Forms were not included in the packs in the first place because in order to record a patient’s opt-out decision the form needs returning to the patient’s GP practice. If the opt-out forms were included in the information packs there would have been a danger that people would have posted them to the ‘request more information’ address, which would have resulted the in opt-out request being completely overlooked.

    John: ‘Hidden’ records are inaccessible by medical staff, authorised or otherwise. They are archived for auditing purposes, for access in the event of legal action for instance. This only applies if the record in question has been accessed in a medical setting; if the record has been created but never accessed it will be deleted altogether.

  3. Goodness me Chris, what cynicism! Despite the prevailing views in the national press and, unfortunately, amongst some GPs (who are supposed to have our health as their priority, not management of our personal details), there is no national government conspiracy to sneak everybody’s medical information online.

    The presumed consent model has been chosen, as it has been in the successful implementation of every other national care record worldwide, to ensure maximum coverage amongst patient groups most likely to benefit from it, and who would be least likely to opt-in if the consent model was the other way around. It is left to people like you and I who might not require, or want it, to choose not to participate.

    There are clearly implications surrounding privacy, the government’s ability to keep our confidential information safe and not to leave it on a bus or lose it in the post, but these should be offset against the equally valid health benefits to groups like the elderly, before discarding the SCR outright as another wasteful initiative of the ‘nanny state’.

  4. Cynicism, never! I just recognise the sneaky back door way the NHS are using to gather information. Remember the ‘Little Blue Card’ a couple of years ago, dumped because of opposition, now this ruse is just a back door way of trying to achieve the same outcome. If the NHS were not afraid of the outcome they would have given people the option to ‘Opt In’. Clearly that would not have worked so we have to go down the tortuous route of opting out, a route made very difficult and complicated and then delayed by malfunctions! Fact not cynicism! I am opting out and I urge millions of others to do the same

  5. Your point about the presumed consent model is correct – as I mentioned above, an opt-in model would result in large numbers of people, quite possibly those who would benefit most from the scheme, uninvolved, leaving the whole scheme largely pointless.

    The point we come down to is, do the medical benefits of the scheme to the public as a whole outweigh the liberties taken by the government in implementing the scheme on behalf of the whole population, minus those of us savvy enough to opt out?

    This point has yet to be answered fully – the latest UCL report, whilst coming to conclusions far from complimentary in a lot of areas, admits itself that its results are based on an analysis at the earliest stages of the project. The anticipated health benefits of the SCR will only be fully registered when access to it becomes widespread on a national basis in a range of care settings, a scenario which still lies some way into the future.

    In the meantime, while your efforts to raise awareness of the project amongst ‘millions’ of people is certainly commendable, I would suggest urging people to look into the options properly and come to their own decision about whether having an SCR is right for them, rather than opting out without proper consideration.

  6. I do not have a problem with people making their own choices, sadly though it seems the NHS do. We could debate this for a long time, however it is clear that we are not going to agree. I have opted out despite the obstacles put in my way, what other people do is entirely their choice.

  7. I would agree that we would probably never agree! What is important though, is that debates like this take place.

    This, and other similar issues, are all too often polarised by extreme views on both sides of the argument. The SCR is a classic case in point – by failing to acknowledge the weaknesses of the scheme, Connecting for Health and others have undermined their own position and opened themselves up to justified criticism of their methods. And on the other hand, many opponents of the scheme fail to acknowledge any positives at all, despite there being clear health benefits to certain patient groups.

    Unfortunately, it’s the public that loses out in these circumstances – here’s to more informative, non-sensationalist debate!

    And good luck with your quest to opt out…

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