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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

Summary Care Record

50 replies

CableKnitHuman · 14/03/2018 14:03

I opted out. For several reasons and have had to opt out three further times because i keep being told that it's being shared. I've just found out again, that my GP clinic are sharing my GP records.

I'm really upset (there's really sensitive information that I've shared with my GP); I now know this information has been shared with doctors who i have met for less than five minutes.

Need advice on how to go forwards please?

OP posts:
Original poster
CableKnitHuman · 15/03/2018 06:11

"The data included in the SCR consists of coded items from the GP system together with any supporting free text. The codes are translated to SNOMED terminology1 and presented to the SCR viewer. Some of the primary care terminology may not be familiar to emergency and other secondary care clinicians – see 3.22 below. There is no standard for the recording of supporting free text and its quality will vary, but when present in the SCR it generally provides additional useful detail to supplement the coded information. This may also include information that may be considered sensitive or relate to un-necessary third party information – see sensitive information below "

From here : digital.nhs.uk/summary-care-records/viewing-SCR

Note the bit about free text please in the paragraph above.

OP posts:
Original poster
CableKnitHuman · 15/03/2018 06:12

Also, it does say that the unless the patient is unconscious then the viewer should ask their permission.

OP posts:
SammyWhammy85 · 15/03/2018 06:24

The opt out page does actually say that any doctor will ask your permission before accessing it as well - are you all saying this is lie?
Basically, yes, it is a lie. They just say this to get it past the regulators.

Oldsu · 15/03/2018 06:24

Tistheseason17 that's a load of rubbish, if I am brought into hospital unconscious with no one with me and no ID the hospital wont know if I am Oldsu, Jane Doe or Sweet Fanny Adams so just whose medical records will the medics be accessing, if I have something with my name on but no DOB or address, then which Oldsu out of hundreds am ? I live in a tourist area, so am I the only Oldsu who lives in my town or the Oldsu on holiday from Liverpool without a DOB or address just how will the medics know.

People who have allergies can always wear a medi alert bracelet or necklace to alert anyone who needs to know at the time

SammyWhammy85 · 15/03/2018 06:28

Consent is assumed until you you opt out.
This is the biggest misnomer. How can you assume consent? How can someone consent to something if you haven't asked them?

SammyWhammy85 · 15/03/2018 06:30

I still query why people aren't keen to share their data to receive the way care?
May be because people don't trust the NHS with their personal information?

Original poster
CableKnitHuman · 15/03/2018 06:47

May be because people don't trust the NHS with their personal information?

This. I do trust my GP a lot more than I trust hospital doctors who I may or may not see again.

I've had zero sleep worrying about who may have seen really intimate details of my life. Tried to speak to my GP surgery yesterday but they told me it was for a doctor to deal with and the next appointment is four weeks away.

OP posts:
SammyWhammy85 · 15/03/2018 06:50

Tried to speak to my GP surgery yesterday but they told me it was for a doctor to deal with
I would suggest speak to the Practice Manager. Go via PALS - that should speed things up.

SammyWhammy85 · 15/03/2018 06:51

And do all communication in writing. Don't do it via appointments - you won't have a record of what's been said

Original poster
CableKnitHuman · 15/03/2018 07:38

THabk you - good point about writing.

There’s a doctor (involved in another part of care) who’s having a think about the best way forward - they may contact them first I think.

OP posts:
FluffyWhiteTowels · 15/03/2018 07:51

I'm confused. So, OP, you want doctors to provide the correct treatment without them having access to your records ?

They won't be ogling anything that is not relevant. You sound a little paranoid about this. Do you think every nurse and doctor sits reading the whole of everyone's records like a novel?

Are you aware of how very overworked the NHS system is ?

BlueUggs · 15/03/2018 07:55

As someone who accesses summary care records with consent for my job, the ones I have seen have basic information - allergies, medication you take regularly and medication you have taken in the last 12 months. That's it. No notes.

blobatina · 15/03/2018 07:58

Have you been part of a scheme like the admissions avoidance care plans? I think that records sharing is part of that template which would be filled in during or after the consultation.

gussyfinknottle · 15/03/2018 07:59

It's my understanding that the opt-out isn't available for all info sharing.

Original poster
CableKnitHuman · 15/03/2018 08:10

So, OP, you want doctors to provide the correct treatment without them having access to your records ?

They managed just fine until 2015. There was no SCR before than.

Do you think every nurse and doctor sits reading the whole of everyone's records like a novel?

No but I know my ex's new partner probably would. Regardless, I opted out, they shouldn't have been shared.

@blobatina Nope. I hate hospitals, they have to fight to get me in there, then keep me calm enough to stay.

@gussyfinknottle What's all info sharing? And when would it happen please?

Thank you for the helpful comments.

OP posts:
AnnaMagnani · 15/03/2018 08:13

My best guess is they have referred you in to hospital and sent you in with a print out summary of your notes.

So no electronic record sharing happened - which you have opted out of - but somebody has pressed print and the whole record has printed and that is what has been handed over.

SammyWhammy85 · 15/03/2018 08:34

It's my understanding that the opt-out isn't available for all info sharing.
Do you mean its opt-in only?

riddles26 · 15/03/2018 09:05

Hospital doctor here. The all info section of SCR is opt in only - as a patient, you would have to specifically sign and give consent for the information to be available on SCR. The basic info - which is very basic and usually used to find out what medicines you are prescribed - is opt out.

Our information governance rules around her of SCR are extremely strict. We are only allowed to access it with your explicit consent unless you are deemed not to have capacity to consent (ie are unconscious). I find it impossible to believe the doctor accessed it without asking you as the consequences for us in doing so are severe.

However, we do not need your permission to contact your gp and request your medical notes as that is considered to be 'sharing of information by HCPs'. I imagine this is the most likely way they obtained your history. I would advise you see your gp/practice manager and request the relevant part of your history is not shared with other HCPs. Individuals are able to do that and some with sensitive conditions such as HIV have this info on their files.

Original poster
CableKnitHuman · 15/03/2018 09:41

I find it impossible to believe the doctor accessed it without asking you as the consequences for us in doing so are severe.

That's how i understood but the practice sort of brushed me off a bit and all I know (from several months ago) is it's been accessed by several doctors at different hospitals. This was the day before I submitted the form for the third time.

My GP has phoned another hospital - they phoned and told them I was shit scared of hospitals and had just had a bad experience. They also confirmed my medication in my bag was my prescribed medication (as I had taken it out of the boxes to make it less bulky). I don't think the doctors in this hospital did access my SCR because they asked me if it was Ok every time they phoned someone to discuss my care. They never asked me if they could and they were very pro consent. They were also transparent and let me read through my medical notes (I had nearly died due to a mistake someone made and was trying to piece everything together in my head). Maybe they accessed the SCR whilst I was unconscious? I don't know. Im obviously not going to have an issue with them if they did, if it has been shared, how were they to know I had opted out. They were the most lovely and caring people.

OP posts:
gussyfinknottle · 15/03/2018 11:57

If you are concerned about a person who has access to health records accessing yours and using them for personal reasons, that person would be committing a criminal offence. If you are concerned about that person you should tell their employer. It is a sackable offence to do this as well as a criminal offence.

riddles26 · 15/03/2018 12:18

From what you are describing, it doesn't sound like they've got the information you are concerned about through SCR. The most information they will have gained from SCR is your medication history and basic details. It sounds like the remainder of your history has been shared by the GP. If a hospital doctor requests a full history from the GP, they surgery will share it unless there are specific instructions not to.

I would discuss with your GP what parts of your history you would not like shared in future and follow it up with a request in writing.

Tistheseason17 · 15/03/2018 18:28

@Oldsu
It's usually very easy to find out who an unconscious person is. Majority of people carry a mobile phone, wallet, purse. Very few people don't carry any of these items at all. If you were in a vehicle, the police will trace owner etc. Naturally, time may be an issue, but again only when they cannot be identified.

You are highlighting rare circumstances about identifying someone, not the norm. But, thanks for your "polite" and "respectful" response. Have a great night.

Tistheseason17 · 15/03/2018 18:35

@SammyWhammy85

Take a look at the ICO page on GDPR. Consent is one of many lawful reasons to process personal data but it is not necessary - although you should be able to opt out. NHS is likely to use a different lawful reason - likely (e) below :

What are the lawful bases for processing?
The lawful bases for processing are set out in Article 6 of the GDPR. At least one of these must apply whenever you process personal data:

(a) Consent: the individual has given clear consent for you to process their personal data for a specific purpose.

(b) Contract: the processing is necessary for a contract you have with the individual, or because they have asked you to take specific steps before entering into a contract.

(c) Legal obligation: the processing is necessary for you to comply with the law (not including contractual obligations).

(d) Vital interests: the processing is necessary to protect someone’s life.

(e) Public task: the processing is necessary for you to perform a task in the public interest or for your official functions, and the task or function has a clear basis in law.

(f) Legitimate interests: the processing is necessary for your legitimate interests or the legitimate interests of a third party unless there is a good reason to protect the individual’s personal data which overrides those legitimate interests. (This cannot apply if you are a public authority processing data to perform your official tasks.)

Letsgetreadytorumbleagain · 15/03/2018 18:49

If you think your records have been accessed by someone without consent you need to contact the Caldicott Guardian for that trust and ask them to investigate what (if anything) was accessed and what permissions they had

Every person accessing your electronic records is logged and has to have a valid reason for doing so

Tistheseason17 · 15/03/2018 18:53

@Letsgetreadytorumbleagain
Absolutely correct. (I am a Caldicott Guardian)

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