Notebook

If you're registered with a GP in one of six Primary Care Trusts - Bolton, Bradford and Airedale, Bury, Dorset, South Birmingham and South West Essex - you will, in the past week, have received a leaflet about new Summary Care Records. It comes with a letter explaining what's in the leaflet, and a form to order another leaflet in one of 12 different formats, ranging from the sensible (Braille) via the surprising (Farsi) to the faintly depressing (Easy Read Picture Version).

If you are also the kind of person, as I am, who develops an eye spasm when privacy issues arise, you might have chosen to opt out of having your health records stored online. Since you have no ongoing medical conditions (besides the eye tic), and are reasonably capable of speaking and listening to doctors, you don't think you need your records computerized. And opting out means that when the inevitable laptop of crucial private information is left in a pub somewhere in Berkshire, you won't have to grind your teeth in impotent rage.

The leaflet explains that if you wish to opt out, you can do so at www.nhscarerecords.nhs.uk. But go to that site, and you will search in vain for any mention of opting out. And when I say search in vain, I mean you will be clicking individually on each available link, not speedily using a search box. There is no search box. Once you've clicked on all the links, you will be no wiser. Many of the links have sub-links, which you are welcome to try. They also will yield nothing, other than the occasional derisive hoot when they are called 'HealthSpace Troubleshooting'.

You will then need to refer to your glossy leaflet, ignore it, and try the covering letter again. You will eventually uncover the fact that you need to type in www.nhscarerecords.nhs.uk/patients/info to gain access to the list of Early Adopter PCTs. Once you click on your area, only then can you download the opt-out form. There is no link to a 'patients' or 'info' page on the site you initially went to. The patient page is, in internet terms, behind the fake door covered in books that leads to the secret room.

This, you will recall, is exactly why you are incensed about privacy issues. Because when a government spokesperson tells you they value your privacy, what they are actually telling you is that they have every intention of taking advantage of people being too busy to track things down or too polite to bother their GP's over-worked Practice Manager during a pandemic.

Douglas Adams' Arthur Dent once sighed that the plans to demolish his home were ‘on display in the bottom of a locked filing cabinet stuck in a disused lavatory with a sign on the door saying 'Beware of the Leopard'’. Do not fear the leopard. Print here: https://www.sbpct.nhs.uk/yourservices/technologyandyourcare/nhscarerecords.aspx.