NHS - Summary Care Records. In or Out?

[Peckhamgatecrasher]

I've just received info telling me that unless I opt out, NHS will produce a record available nationwide holding personal, medical details.

On the face of it, this seems a sensible idea - in an emergency any health provider can access pertinent details (eg, allergies) but I'm more concerned about more sensitive stuff and the fact that once created, the record cannot apparently be deleted.

What do others think?

[Mick Mac]

Dont worry. It wont mention that you are a rangers fan. Rest easy PGC.

[Peckhamgatecrasher]

Underneath my blood is blue - I'm not bothered about that.

It's more the I have two heads and an incurable, embarrassing disease that worries me.

[Narnia]

I thought it was a very long letter that I didn't feel like reading. Thanks for the summary though!

[intexasatthe moment]

My concern would be with regard to the accuracy of the records.

[Sue]

My concern would be what an incredibly expensive exercise it's going to be - and also how accurate, yes.

PGC, what do you mean, the record can't be deleted? Suppose they make a mistake inputting the data?

I couldn't be arsed to read the letter either, apart from a sort of hurried skim. It has gone into my very enormous basket of "filing", into which once gone, nothing ever comes out (grammar?) :))

[Peckhamgatecrasher]

According to something I read after a random googling, the record cannot be deleted. Not to say it can't be amended.

May be scaremongering, maybe a software glitch. An American database I used to use, did not allow one to delete a record either - perhaps it's just to stop accidentally getting rid of material. Goodness knows what they do with all the records of deceased bods.

[brum]

As long as they get the security aspect right, I think it will be ok. I'm pleased that you have the option to opt out. I know of someone who's ex is a GP and she fears he could access her records and 'amend' them.

[HAL9000]

The design of most modern databases does not allow records to be deleted easily. This is often presented as a security feature. The usual solution is to mark a record as deleted rather than to remove the underlying information. The software ignores records marked as deleted.

From time to time, such databases can be compacted: a process that can remove deleted records or move specified records to an archive database.

[Ann]

I suppose it must be a good thing. I'm thinking examples of being hit in a road accident where one could be admitted to hospital in an unconscious state whereby your blood group can be instantly accessed or am alert to being allergic to penicillin would be useful?

To name but a few, I would have thought it was an excellent idea.

[????]

Cheers PGC - I got this and put it down in the 'too long to read now maybe at the weekend' pile, which my missus has since thrown away. Your post has relieved me from the very slight concern that I may have missed something important.

[Sue]

???? Wrote:

-------------------------------------------------------

> Cheers PGC - I got this and put it down in the

> 'too long to read now maybe at the weekend' pile,

> which my missus has since thrown away. Your post

> has relieved me from the very slight concern that

> I may have missed something important.

xxxxxxx

:))

[SteveT]

I had the same missive dropped through my letter box yesterday too but I have no need to worry, as the people at Kings have lost my medical history according to the last consultant I was interviewed by when he showed me the single A4 sheet which was supposed to be my lifetime medical record.

I do not know what I can do about it, when they are lost where do you start to search?

Any other forumista out there who has had the same experience of your medical history going missing/lost?

[PeckhamRose]

I am opting out.

This is all very important and it distresses me that so many of you are not bothering to read it all.

By not acting on it your records will be put on the summary care record.

It can not be deleted. Who knows if it can be amended.

And currently it will only be available to health professionals.

Currently.

In future I don't see why health professionals working for insurance companies will not be able to access the information and make judgements on your suitability to be insured because of some gene you possess which may in the future....

you see where I am going with this.

I am out of it. I am out of the national spine too, which I thought was the same thing but anyway I opeted out of that.

As for the lost file, SteveT - I too experienced Kings losing my file years ago. Allow human error, they maybe just filed it under SteveS or SteveU. It's inconvenient and maybe dangerous depending on the situation, but it is human error.

The summary care record could also have human error attached that can not be deleted (unlike your paper files which can be, if you then find you have to go to another department after the one you're in and they 'trust' you to take your own files with you.....and you need to go to the loo, etc etc)

Anyway, Summary Care Records: I have opted out, and to those of you who can't be arsed to even read this stuff, I hope everything goes well for you in the future!

[BeccaL]

I agree with you Peckham Rose, I read this carefully and while I can see the upside re immediate access to records in case of an emergency, I don't think that outweighs the potential for problems - the NHS's IT system isn't exactly inspiring, is it? As the letter said, you can always chose to opt in in future if you want to.

Interested to hear if anyone has discussed this with their GP or with Southwark - Southwark was presented as the preferred option for questions as they have up-to-date information, but surely they'll just be presenting the party line?

[????]

Soooo I'm rushed in with an emergency condition and no bugger can find my notes or an insurance company might in the future, unethically and almost certainly illegally, get hold of my records...I'm gonna sleep on this one.

[PeckhamRose]

Well quids what happens now?

You're rushed in unconscious with no ID.

They take a blood sample, they take a little time maybe with help of police but they get enoiugh info to get you safe whilst more info is gleaned from police or a witness, someone phones saying you've gone missing, you're IDd.

Sorted.

Hope it never happens.

SOOOO wear an ID tag with your name and NHS number Hospital Number blood group

DONOR CARD!!!!!!!!!!!!!!!!!

Am I allowed to say this? Carry a donor card. Write on it what you're allergic to.

It's not a signature you over eager moderators.

[JDR]

I have been on training just this week for the system that will eventually support this. To say that there are checks to find out who is looking at records is an understatement. Baring in mind that health care professionals will be able to access a shortened version of your files and there will be a record of who has viewed them, it seems to be very robust as a system (annoyingly time consuming from my perspective. Deleting records for those already on a very les detailed version of this is already something that only a very few poeple can do. There will be regional and national 'spines' and changes to these very often have to go through other departments of you wish to change info. Very thorough from what I've seen, and most details held will not be available to all, just the pertinent info that genuinely needs to be shared ie medical history, allergies etc

I'm happy to have it done for me, I guess thats the best recommendation i can give

[benjaminty]

PeckhamRose Wrote:

-------------------------------------------------------

> I am opting out.

> This is all very important and it distresses me

> that so many of you are not bothering to read it

> all.

> By not acting on it your records will be put on

> the summary care record.

> It can not be deleted. Who knows if it can be

> amended.

> And currently it will only be available to health

> professionals.

> Currently.

> In future I don't see why health professionals

> working for insurance companies will not be able

> to access the information and make judgements on

> your suitability to be insured because of some

> gene you possess which may in the future....

> you see where I am going with this.

>

> I am out of it. I am out of the national spine

> too, which I thought was the same thing but anyway

> I opeted out of that.

>

> As for the lost file, SteveT - I too experienced

> Kings losing my file years ago. Allow human

> error, they maybe just filed it under SteveS or

> SteveU. It's inconvenient and maybe dangerous

> depending on the situation, but it is human error.

>

>

> The summary care record could also have human

> error attached that can not be deleted (unlike

> your paper files which can be, if you then find

> you have to go to another department after the one

> you're in and they 'trust' you to take your own

> files with you.....and you need to go to the loo,

> etc etc)

>

> Anyway, Summary Care Records: I have opted out,

> and to those of you who can't be arsed to even

> read this stuff, I hope everything goes well for

> you in the future!

How on earth do you leave the house every day? You know humans like errr drive buses and stuff don't you?

[PeckhamRose]

I ride a motorcycle.

Your point is?

[benjaminty]

So you ride a motorcycle but you fear human error on a Health record?

Firstly this project will go some way to reduce the risk of human error on health records. The lost records that people have mentioned on this forum will hopefully be a thing of the past and there will be consistency in that data held.

Secondly you ride a bike and run the risk of any driver doing something silly at any point that could put you in hospital. It's ironic then that you have opportunity to have measures put in place that could better emergency care should you need. To think you would forego that opportunity just incase somewhere down the line an insurer states that you should not be entitled to insurance cover for some reason (potentially valid) is more than a little odd?

Granted this is a huge and expensive project but the benefits are there to see. Aren't they?

[intexasatthe moment]

I'm with Peckham Rose - carry a donor card and add details of allergies.

My experience of Kings is that they will not shift incorrect info entered on medical records

" your hearing problems are because you were exposed to gun fire in military " - never near the armed forces

Liver malfunction listed as result of alcohol abuse when in fact due to other medical conditions.

Inability to access toilet due to limited mobility listed as incontinence.

( these are examples from friends ,not me ! )

More record inputting = more errors ,which they will not change even when constantly asked to.

[siousxiesue]

I am opting out for sure. I received a recorded delivery letter which I had to pay excess on, from my doctor's surgery-thought it might be important. It was just a 'stop smoking' leaflet, along with a 'we see from our records you are a smoker' type generic letter. Never smoked in my life! It's still on my records though, crazy!

[benjaminty]

Ah I see so you're not happy with how things are at the moment? You're right lets all just sit on our hands...

[Huguenot]

There's something a leeeedle beet crazy about not having a newer better system simply because the current one doesn't work, no?

The only valid point I can see is that if it wasn't secure it could, possibly rather than probably, make it easier for poeple with access to discriminate against you on medical grounds.

But the correct approach to that isn't to stick your head in the sand, it's to assess both the security standards and associated legislation.

This is all a bit MMR scandal to me - old wives tales, gossip-mongers and conspiracy theorists trying to feck it all up for everyone else.