Active discussions

Meet the Other Phone. A phone that grows with your child.

Meet the Other Phone.
A phone that grows with your child.

Buy now

Please or to access all these features

Talk
AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

... to opt out of the NHS summary care record?

42 replies

WillbeanChariot · 30/06/2010 15:26

I have been undecided and the time limit at my practice expires this week, so I'm going to opt out for me and DS.

I am concerned about privacy, the number of people who will have access and possible future use by the government. I can opt in later if I want but if a record is made now my understanding is it can't be deleted in full.

So, AIBU?

OP posts:
BreastmilkDoesAFabLatte · 30/06/2010 15:28

YANBU. I work in public health and I'm definately opting out. The potential for security 'lapses' is quite frightening...

Greenshadow · 30/06/2010 15:33

But surely for the 'average' (wo)man in the street, it doesn't really matter if someone who shouldn't accesses your health records. So what if some one finds out I have (eg) diabetes/heart condition etc.

I personally would much rather risk that than find myself in hospital following an accident and the health professionals being unable to find out what existing conditions I have which could affect my treatment. Same goes for my children.

BMDAFL - Quite prepared to be told I am wrong, so please tell me exactly what I should be worrying about.

ImSoNotTelling · 30/06/2010 15:38

I thought that they were only putting conditions/medications on it at the moment? Rather than any actual notes IYSWIM.

On that basis I have OK'd it.

BreastmilkDoesAFabLatte · 30/06/2010 15:41

Your SCR will be seen not only by health professionals but by IT people and admin staff. If you don't mind people knowing, then you've got nothing about which to worry. But I've got a particularly rare medical problem (which would be immediately obvious to any doctor in an emergency) that makes me the object of fascination and curiosity and panic and nosiness to everyone who hears about it.

And although I'd be covered by all anti-discrimination legislation, I'd hate a potential employer to discover something he/she doesn't need to know.

I just like my privacy, really. But if you're not bothered then it's not an issue...

BreastmilkDoesAFabLatte · 30/06/2010 15:42

ISNT, yes... only diagnosed conditions and medications.

enzed · 30/06/2010 15:43

YANBU, you are entitled to have control over who sees your health records, therefore whatever you decide is fine.

Personally, I didn't opt out and agree with greenshadow - i'm a health care professional and have looked after people who couldn't tell me anything about their medical history because of injury or illness, and it would have been really useful to be able to access at least basic information about at least what medication they take and their long term illnesses when their GP surgery is closed.

Nevertheless, I still believe that opting out is absolutely someones right, so YANBU.

gasman · 30/06/2010 15:50

YANBU

I'm a health care profesional and I totally respect your right to opt out.

Greenshadow · 30/06/2010 15:51

Agreed that opting out should always be an option but was actually amazed when I first heard about this, as I always assumed that the medical profession could access important information about my medical history already. Find it actually quite scarey that they can't!

Original poster
WillbeanChariot · 30/06/2010 15:53

I am interested to hear everyone's views, as I said I was undecided and I've opted out on the basis of a vague sense of unease and the fact I can opt in later.

I figure that if I'm rushed to A and E unconscious they won't know who I am anyway so it wouldn't help?

OP posts:
notcitrus · 30/06/2010 15:57

I've opted in, although I was planning on opting out.
Reason - I have a couple nasty allergies/bad reactions and medical issues that it would be very useful if hospitals could know about them all.
Plus my medical notes were all lost nearly 2 years ago. So any of the things I might not want all and sundry to know about just aren't there.

If the latter wasn't the case I might have still opted out.

Rocinante · 30/06/2010 16:02

YANBU.

I've opted out, based on the lack of trust I have with control over mega databases; as much as access is locked down, people will always circumvent security either by borrowing passwords, creating temporary IDs, hacking in etc. The more unauthorised access there is, the more chance of medical details being sold/leaked to insurance companies, potential employers, other interested parties to the detriment of the patient.

I know that at the moment the information held is limited but this is the first stage and more will be added in the future.

I just don't like the idea of it I'm afraid.

TeaOneSugar · 30/06/2010 16:11

It's only a summary of your record, not your actual notes.

All your medical information is already stored electronically, at your GP practice, in off site data warehouses and at any hospitals and clinics you've attended.

wheelsonthebus · 30/06/2010 16:19

YANBU - I agree with Rocinante

Butterbur · 30/06/2010 16:25

YABU.

What do you think happens to paper records? They get trolleyed round hospitals by porters, lost regularly and never found (God know where they go then), and for some clinics they get left unattended in corridors, or maybe with a sheet over them for "security".

I like the idea that if I'm ambulanced to hospital, alone and unconscious, they will have access to my medical records.

And that they have critical information from my medical history at their fingertips, and don't have to rely on my imperfect memory.

TBH the sooner there is one universal system the better.

weirdbird · 30/06/2010 16:29

I opted out as I know how many innacurasies are on my notes (and how hard it can be to get the corrected!), how many people are going to check what is being put on the summary care record to see whether it is correct before allowing it?

SurreyDad · 08/08/2010 08:32

Just wondering - out of those of you who are opting out of the Summary Care Record, are you also having your Personal Demographic Record flagged as 'sensitive'? Cue - what's the PDS?!

breatheslowly · 08/08/2010 11:01

I've opted out, but if I had any issues which might be important when treated as an emergency then I might have stayed in. I will be opting my children out on the same basis - if they turn out to have reactions to medication etc then I will put them back in.

2rebecca · 08/08/2010 11:28

I've opted out. If I was immunosuppressed or on a long term drug like warfarin or prednisolone I'd go on it but there's nothing that will save my life on my summary care record so people will just have to ask me or my husband about my past illnesses.

LaundryLyne · 08/08/2010 12:48

YANBU.

Greenshadow, it's one thing to say there's currently nothing you don't mind the world knowing about, but you don't know what conditions you might get in the future that you'd prefer others not to have access to.

tokyonambu · 08/08/2010 16:51

"I like the idea that if I'm ambulanced to hospital, alone and unconscious, they will have access to my medical records."

How will they know who you are? And if the answer is "look in my wallet", why not just put a card in there listing the key facts, like diabetics do today?

And of course, SCR only works in England. If you're planning to be wild and travel to Glasgow or Cardiff, better buy a Medalert bracelet.

ButterpieBride · 08/08/2010 16:59

Up to last year, I didn't see why you would opt out of things like this. Until an aquaintance saw me when drunk and giggled about how she had looked up my family on the ss computer and told me some personal details that could have only been from there. (and some other stuff that I didn't think was on there myself). Nothing scary in our case, but it does make you think...

She was only an admin temp as well.

Haliborange · 08/08/2010 17:07

I forgot to opt out before our deadline but will be doing so now.

I think individuals should be responsible for their own records. Why can't they give people a memory stick they they keep about their person and take to medical appointments etc with them?

I am especially concerned about what wil happen if my records are wrong - I know from experience that you can contradict written notes as often as you like and some HCPs will treat you as though you have lost your marbles. Which makes me sound paranoid but having been on the receiving end of inappropriate treatment because my notes were wrong this bothers the hell out of me. The written word is king, even though it is not always right.

fedupofnamechanging · 08/08/2010 17:26

ButterpieBride - I hope you reported your aquaintance for doing this. That behaviour is so unprofessional and ought to have been dealt with by her employers. You may have had something really personal in your records. Can't believe some people think it is okay to do that

ButterpieBride · 08/08/2010 18:24

I ummed and ahhed about it, and now it is probably too late.

I used to work in a library, and I never so much as looked up what books my friends had borrowed! It is just not on!

2rebecca · 08/08/2010 22:29

Scotland has had its own data spine since 2006. It's not as well publicised but is now operational in much of Scotland.