London wide NHS spine upload - ACT NOW
Monday, 1 March, 2010
The Department of Health is currently sending mailshots to people in London and 4 other strategic health authorities, informing them of 'changes to your health records'. These changes are presented as necessary and inevitable but they are not. They shift control of health information from medical professionals to the state and will result in YOUR private details being uploaded onto a centralised system accessible to hundreds of thousands of people - not just doctors.
The changes are presented as being for your own good but they undermine the fundamental basis of the patient-doctor relationship - medical confidentiality - that is absolutely essential if people are to disclose things about themselves for their own treatment and well-being, and for the
wider public health.
Doctors oppose this. Professional bodies oppose it; the BMA believes everyone should be asked for their explicit consent before anything is uploaded ('opt in'). Unfortunately, you are only being given a limited right to opt out and the Department is making that as difficult as it can - for example, it fails to include a copy of the opt out form with the letter!
If you do nothing or fail to respond within the deadline, the government simply presumes your consent. Your personal details and some sensitive
medical information, including your last six months' prescriptions, will be uploaded onto a 'Summary Care Record' (SCR). Once your SCR has been accessed, it will never be deleted from the system. And over time, more and more of your health records will be added to it. As the Prime Minister has already discovered on the Scottish version of the system, the so-called 'protections' bolted on are ineffective - his and others' medical records have already been compromised.
Over two years' independent research shows little evidence of the claimed benefits. But the government is spending millions of pounds bribing Health Authorities to send out these letters before the general election. Maybe because the opposition parties have both said they'll scrap SCR, and build something more localised and patient-focussed instead...
WHAT SHOULD I DO?
People with serious medical conditions might consider having an SCR, but many already do sensible things like wearing a MedicAid bracelet or carrying a recent prescription. At the very least, talk to your GP at your next regular appointment.
If you want your medical records to stay confidential to your current GP practice, just OPT OUT.
If you are at all unsure, e.g. if you're worried about the security of your health information or you simply want more time to think about it, just OPT
OUT - you can always opt in later if you change your mind.
Please also tell other people - your family, your friends and co-workers. Forward a link to this page. We just don't know how many thousands of people will have their medical information uploaded without their knowledge or consent, but you can help prevent it by spreading the word.
HOW DO I OPT OUT?
1) If you live in London, the Londonwide Local Medical Committees (LMCs) have produced their own information sheet and a simplified opt-out form:
THIS WILL ONLY WORK FOR GP PRACTICES IN LONDON. If you are registered with a GP practice anywhere else in England, please use one of the following options.
2) You can ask your GP to put a 'stop order' on your record using the opt out letter produced by TheBigOptOut.org (TBOO):
If you haven't received the NHS mailshot yet, this will ensure that your record is marked 'patient refused consent for upload'. We encourage you to
read the rest of the TBOO website, which explains more about other NHS IT systems and how they affect your privacy.
3) If you receive the NHS mailshot, it won't contain an opt out form and the web address given doesn't point at the form either. You don't need to waste your money calling the 0845 number. Be aware that this PDF is heavily biased against opting out, but the opt out form is on page 3: