Now you can demand that your records are deleted. Good news.
This is the statement direct from NHS Connecting for Health:
Change to the position on deleting Summary Care Records
Following recent discussions with the Information Commissioner, it has now been agreed with NHS Connecting for Health that a patient’s Summary Care Record (SCR) can be deleted – if asked by a patient, unless the SCR has been used by a healthcare professional in the course of treatment or should have been used.
A Department of Health spokesperson said:
“Our early adopter programme was set up precisely so we can learn from emerging issues such as this one.
“Our priority is to ensure that the information provided to patients is accurate. As soon as we realised that one of our early adopters had inadvertently suggested the Summary Care Record could be deleted, if a patient changed their mind, we took immediate steps to update the website and information leaflet.
“Following discussions with the Information Commissioner we have now agreed that anyone can now request that their record is deleted. In the event that a record was accessed as part of someone’s healthcare, a record of that access needs to be kept in case there was a subsequent investigation of the performance of a clinician or a dispute about the facts – this is in the best interests of both patients and clinicians.”
What this means is very clear.
If you accept healthcare from the NHS, then they will retain your records. They need to do this in case you sue them for malpractice. You can delete your records at any time between now and before they treat you, but once you are treated by them you can kiss your privacy good bye.
Like I said before, only the rich will have privacy in the UK (July 10 2004). Anyone who has a private doctor and who never uses NHS services will never have their private medical details violated.
It seems to me to be outrageous that the state should steal money from you to provide healthcare for everyone, and then provide a healthcare that mandates that you give up your dignity. Is dignity too now only for the rich?
Since there are almost no accident and emergency rooms that are private, going to one and revealing everything medical about yourself to them so that you do not get killed by a shot of penicillin being allergic to it, will mean that this information will be on the Spine forever, and you will not have the right to remove it, since the NHS has to indemnify themselves. If you are going for a home birth and are forced to decamp to hospital, all the records of that birth and you will be on the Spine with no option open to you for deletion.
That’s not right.
Clearly you should be able to delete your records no matter when or how they are created, and the NHS performance and liability excuse is nonsense. If you sign a waiver giving up your rights so sue the NHS, then that should be enough to allow them to delete your records without any fear of repercussions.
In any case, here is how you go about deleting your Summary Care Records. Or not.
I telephoned the friendly people at Connecting For Health on 0845 603 8510, and got put through to a nice man, who I will call Dave. Dave told me that, “you have to go to your GP’s surgery and ask for an opt out form.”
He then told me that once you fill out this form and your records are processed, “your records will still be on the spine, but will not be available to other computers”. I informed Dave (who trained in November 2008) that in fact this is not what I was asking about, and that Connecting For Health has put out a statement that Spine records are now to be DELETED COMPLETELY from the system on demand, and not just ‘shielded’ from other computers.
He claimed that he knew nothing about this. I asked wether or not he was on the internet there; he said that he was. I directed him to the news article above, and he was surprised by its contents. He said that he would speak to his supervisor to see what it was all about.
Clearly they do not have a system in place so that you can have your records deleted. Perhaps they have no intention of allowing you to delete them at all, and they are going to keep them on ‘The Spine’ for your doctor, but ‘shield’ them from users other than your GP. Maybe they need time to set up a system to manage deletion. Lets hope its that.