Goodness only knows how NHS England’s new junk mail leaflet, Better information means better care (2MB PDF) got its plain English Crystal Mark. It is one of the most disingenuous pieces of literature in the history of the NHS, full of ambiguity and misdirection – surpassed only perhaps its predecessor leaflet, How information about you helps us to provide better care (343KB PDF).
What these leaflets are talking about is care.data, a new scheme that will extract confidential medical information from the GP-held records of every man woman and child in England.
If you want to know more about care.data right now, you can read Hampshire GP, Dr Neil Bhatia’s comprehensive explanation at www.care-data.info or check out how care.data came about in our section called ‘What’s the story?’
The newer junk mail leaflet, which is being pushed through letterboxes across England throughout January 2014, is designed to make you think nothing extraordinary is going on. It is. The leaflet, which many patients may never actually see, is a study in evasion and omission, failing to mention rather significant pieces of information like the name of the scheme itself – ‘caredata’ appears just once in the leaflet as part of a URL at the bottom of the last page; it doesn’t appear at all in the first leaflet – and, more crucially, the new leaflet doesn’t contain an opt out form.
That’s because this is about consent. Or rather it’s about manufacturing consent.
For if you don’t act and opt out of care.data in the next 8 weeks, confidential information from your and your family’s medical records will be uploaded, and once it leaves their systems your GP will have no say in what is done with it. It will be presumed that you have consented for this to happen, and for your medical records to be passed on to companies and organisations outside the NHS – all on the basis of a leaflet which you may not even have received, noticed, read or understood.
After all, it’s being sent as junk mail, not to you directly as a patient.
But if you did get a leaflet, got the sense you’re not comfortable with the rather vague information you are being given and decide it would probably be safer to opt out – it is – you are instructed to… “speak to your GP practice”. Wrong! You don’t have to speak to your GP, and you certainly don’t have to book an appointment – you can opt out of care.data via letter or send in a form, copies of which we provide.
NHS England’s leaflet campaign is a deliberate and shameful attempt to make it as awkward for you to opt out as it can. And if this is how they are (begrudgingly) going about ‘informing’ the public about care.data, can the scheme really be trusted? If it can, then what have they got to hide?