Melissa Kite Melissa Kite

My medical embarrassments are my business and no one else’s

The sharing of patient records is nothing less than an NHS power grab

I don’t want my health issues, from my bunions upwards, guarded by a quango that sounds like a deodorant [Photo: Olya.Lutz / Alamy Stock Photo] 
issue 19 June 2021

While we were looking forward to Freedom Day, the National Health Service was busy planning something extra special to coincide with it almost exactly.

From 23 June, our medical records can be given by our GPs to other agencies and third parties for the purpose of that most ambiguous of all state activities, ‘planning’.

While you thought they were busy planning Freedom Day, they were, in fact, planning Freedom of Your Information Day, in which everything you have ever told your doctor would become only marginally more secure than the information about your shopping habits that your loyalty card is collecting for the supermarket giants.

Where your medical records are potentially going from next week I would love to tell you, but it remains a mystery to me, even though I have read all the blurb.

According to the NHS website, my health records contain ‘a certain kind of data called confidential patient information that can help with research and planning’. And there was me thinking the doctor was keeping notes on me in order to help treat me for illness or injury.

‘He’s a crocapoo.’

Apparently, I can choose whether to allow my information to be used for ‘research and planning’ but an informed choice seems unlikely because nowhere does it tell me who, specifically, gets to see my information if I don’t opt out.

All that seems to be known is that the medical histories of more than 55 million patients will be made available on a database to ‘support the planning and commissioning of health and care services, the development of health and care policy, public health monitoring and interventions (including Covid-19) and enable many different areas of research’.

This is being called an NHS data grab by those critical of it, but I wouldn’t make it sound so cosy. I would call it an NHS power grab. It comes hot on the heels of the NHS body snatch, because they own your corpse now, unless you’ve opted out of the mandatory organ donor rules.

I admit I was a party pooper on that occasion and decided to annoyingly stick to certain spiritual principles I hold dear and say no, the state couldn’t seize my body and dismantle it for parts like an old Ford Fiesta once I hop off this mortal coil.

Sorry to be a party pooper again, but I’m not making my private medical notes accessible to anyone so long as the individual or organisation involved in wanting to see them makes a successful application to something called the Independent Group Advising on the Release of Data or Igard.

I don’t want my various health issues, from my bunions upwards, guarded by a quango that sounds like a deodorant.

But that’s the position for all of us, unless we say no before 23 June by telling our GP or going on the NHS website and opting out.

I have no faith in my GP surgery’s ability to process anything so I’m not attempting to tell them.

They recently stopped my HRT prescription over the need for a blood pressure test, tried to take my blood pressure over the phone, then grudgingly took it in person, said it was too high, gave me half a stash of HRT to tide me over, but a few weeks later decided they wanted to forget the blood pressure issue, said it was actually fine, and issued all my HRT.

This week, the chemist rang me and said there was a third load of HRT waiting for me in a duplicate prescription that no one seems to understand. So I’ve gone from having no HRT to having two and a half times the usual amount of HRT. And the way I feel right now, unless they stop telling me I’m not free unless they announce ‘Freedom Day’, I might just take it all at once to see what happens to vary the boredom. Things can hardly get any more surreal.

As regards the exclusivity of my bunions, I thought it best to go online and opt out of them circulating my medical notes, because I want to retain the right to publicise my own medical embarrassments, here.

The only slightly shifty thing was the total lack of admission that there is a deadline to do this by. So if you hadn’t found out from elsewhere, you wouldn’t think to do it even when you’re on the website staring at the opt-out button.

Oh, one other shifty thing. Even if you opt out, your data ‘might still be used in some situations’.

Can you guess what those situations include? I think you can. Yes, that’s right. ‘In an emergency or in a situation when the safety of others is most important. For example, to help manage contagious diseases like coronavirus and stop them spreading.’

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