Access to Medical Records

There was an interesting thread a little while ago concerning access to healthcare records.

This appeared in the Times a few days ago, written by Natalie Haynes.

"If you are registered with a GP in any 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. […}

If, like me, you develop an eye spasm when privacy issues arise, you might want to opt out of having your health records stored online. If you have no continuing medical conditions (besides the eye tic) and are capable of speaking and listening to doctors, you might think you don’t need your records to be computerised. And opting out means that when the laptop of private information is inevitably left in a pub somewhere in Berkshire, you won’t have to grind your teeth in impotent rage.

The leaflet explains that if you want to opt out, you can do so at 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 by clicking on each available link, not 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 yield nothing, other than the occasional derisive hoot when they are called “HealthSpace Troubleshooting”.

You will have need to refer to your glossy leaflet, ignore it and try the covering letter again. Eventually you will discover that you must type nhscarerecords.nhs.uk/patients/info to gain access to the list of “early adopter PCTs”. 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 first went to. The patient page is the internet equivalent of being 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. Because when they tell you that they value your privacy, what they are actually telling you is that they will take advantage of people being too busy to track things down or too polite to bother their GP’s practice manager during a pandemic.

Douglas Adams’s Arthur Dent once sighed that 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. The form can be accessed from here".

The link to the full article (plus comments from readers, which are also interesting) is:

timesonline.co.uk/tol/comment/columnists/guest_contributors/article6802497.ece

I don’t know if she (Natalie Haynes) is 100% correct, as I had thought it was already possible to write to your GP/hospital and request that your details were not uploaded at any time in any current or future computerisation project - if that’s what you want.

Still, an interesting read, I thought.

X

S

Hi S

Thanks for raising this again – I live in one of the “early adopters” PCTs, but my GP practice doesn’t seem to have “gone live” with this latest plan, so I haven’t had the letter (sample on our PCT’s website dated May 2007) inviting me to take part or opt out.

My GP practice has everything on computer already, so that their evening/weekend services can access our records if needed. Ha! The only time this might have been useful was when I developed cellulitis in my lymphoedema arm, and ended up at the weekend GP service attached to my practice. Hmmmm, what a surprise – their computers weren’t working. Fortunately I was able to tell the doc (who looked terrified at my arm) about all the meds I’m on for bone & liver mets, he gave me the correct anti-b’s and the cellulitis was history.

Doesn’t exactly fill me with confidence about the new information service . . .

Marilyn x

What is it with terrified looking doctors? My skin held up all the way through rads then broke down and started weeping about 5 days after finishing. I went to see one of my practice nurses, but she got the on duty GP to take a look. I told him it was starting to smell a bit offensive and he just looked startled and said “I’ll take your word for it as I don’t want to smell it”. He also didn’t seem to have any idea that this could happen after radiotherapy. I often wonder if some GPs slept through their training!