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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?

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SammyWhammy85 · 14/03/2018 14:28

Get evidence that it has been shared. Take a copy of the computer screen with your phone or something.

SammyWhammy85 · 14/03/2018 14:30

You'll need to complain about the doctors who have looked at it, as they are supposed to ask for consent before looking. They have obviously not followed protocol. Contact PALS (in writing or email, not by phone) of the hospital that the doctors looking at your records work at, and contact PALS of the CCG that your GP comes under. You can obtain an audit trail of who has looked at your records too.

SammyWhammy85 · 14/03/2018 14:32

Have you kept a record of the correspondence received when you opted out of sharing your records? This is why opt-in consent should be the norm, but the NHS just ignores the rules every other business has to adhere to

Musicaltheatremum · 14/03/2018 14:43

Find out how it happened. Have you changed surgeries? I find with our patients it's more likely to not share it than the other way round and it's quite a few clicks to make it share.The summary care record does just share your medications and diagnoses(illnesses) with a 1or 2,priority on them so cancer, heart attacks etc. It doesn't share any of the "free text" that your gp may have coded.
Not saying it's right what has happened but it is highly likely the sensitive stuff will not have been shared. Hope you get it sorted.

Original poster
CableKnitHuman · 14/03/2018 14:45

Thank you - i don’t have a screenshot I have been told (including once by my practice manager); i gave them the third Form after this.

A hospital doctor said “I’ve read all your medical records, I know everything about you” and that was a few days afterwards. Just this week and last another hospital doctor confirmed they could still access it.

I am pissed off with my GP practice - would the form have had to be checked by a GP to be opted out or would it be a receptionist?

I asked the last time around for the list of doctors but the practice wouldn’t give them to me and said they’d check if there were any anomalies. They also told me it was just a brief record - it’s bloody huge actually!

Am I allowed to know who has accessed and when? I think at least one of these doctors will have accessed it after I was no longer in their care.

OP posts:
Original poster
CableKnitHuman · 14/03/2018 14:46

My free text has been shared (as well as CRE which is family history and things). I think this may depend on which system your gp is on?

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Original poster
CableKnitHuman · 14/03/2018 14:48

I know originally I was definitely opted out as a GP sent me with the print out of it.

I’m still in the same surgery and need to stay there due accessing tertiary care that’s linked to surgery post codes rather than home post codes...

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Musicaltheatremum · 14/03/2018 14:53

It will be the reception staff who deal with it but they are employed by the GPs usually so ultimately they are responsible. Even with the summary care record the doctor viewing at the other end has to ask your permission. So even if it has been shared they should not look at it.
The records will have a log against them to show who has accessed them. They should not have accessed them at the other end without your permission and yes you should be able to access that info but possibly through PALS as the GP practice won't be able to see who has accessed them "downline"
Sounds like you have 2 problems.

  1. They have been shared and shouldn't have been
  2. Someone has looked at the other end who shouldn't have looked.
I don't understand how they have been re-shared. Certainly where I am you have to physically go into a part of the registration part of your record and "tick or untick" the consent box and I wouldn't understand why people would do that unless it's some sort of IT glitch during an upgrade which they don't know about.
Musicaltheatremum · 14/03/2018 14:58

Sorry you're posting as I do too. I am in Scotland so systems do vary and it would hard to do accidentally.
We have a KIS (key information summary) which shares more info but again, not the whole record. Only specific things. We use it for palliative patients who need info sharing but that is explicit opt in not out.
I've just looked at our records and it's quite hard to find the sharing bit. I can find it as I'm pretty IT savvy but my other GP colleagues who don't have reason to access it wouldn't have a clue.

SammyWhammy85 · 14/03/2018 18:43

I can find it as I'm pretty IT savvy but my other GP colleagues who don't have reason to access it wouldn't have a clue.
Another reason why sharing should be opt-in. Most of the staff in the NHS haven't got a clue about how the records they create share confidential information

SammyWhammy85 · 14/03/2018 19:36

Are you sure it's the Summary Care Record that's been accessed, rather than your full record? Because the Summary Care Record doesn't contain free text

Lifeisabeach09 · 14/03/2018 20:24

When the hospital doctor said he/she had read your medical records, they were likely talking about your full medical records that are kept by your local hospital trust. This isn't your SCR and any hospital doctor investigating/treating you can access this file. Hospital doctors don't need your permission to view this and it may or may not contain a print out of your SCR or any other letters/notes from your GP, speaking generally.

GoldenBlue · 14/03/2018 20:42

I agree with lifeisabeach the summary care record holds little detail. Most hospitals can not see any of your GP record. They get a referral letter from your GP and can access everything that forms part of the hospital record but to access the summary care record they need your permission or need to record a legitimate reason (such as you being unable to consent for example being unconscious).

Tistheseason17 · 14/03/2018 21:22

Under GDPR regs you will find there is no requirement for consent. There is a regulation regarding it being reasonable to expect that clinicians share data about your care to give you care.
My question to you would be, "why don't you want to get the best care?"
I'd understand if your data is being sold but under SCR it is for YOU to get the best continuity of care.

AnnaMagnani · 14/03/2018 21:32

When the hospital doctor said 'I've read your record' do you know what he/she had read?

I only ask because I am a hospital doctor and I haven't a bloody clue how to access a SCR, I'd just be reading the hospital notes.

I do have access to my patients' GP records, if they are on the right IT system and they agree to record sharing but this is v unusual (relates to my specialty) and TBH, they are v dull and one would only read the last couple of entries and most recent letters. Nobody ever reads the whole thing.

Musicaltheatremum · 14/03/2018 22:07

Sammywhammy, when I say they haven't a clue that's a bit unfair on my colleagues. They are aware that the summary record is opt out and the higher detail sharing is opt in but because our admin staff deal with the registrations and ask about opting out then the GP would need to ask the admin staff or me how to change the preference. It is really not necessary for a GP to know the finer details of the system. The summary care record is really very little information. Just drugs and one line coding for diagnoses. Nothing else

NorthernLurker · 14/03/2018 22:12

I think the hospital doctor probably meant they had seen the hospital records. Your records really aren't that interesting to them btw. They will have looked at whatever they felt they needed to access to inform their care for you.

SammyWhammy85 · 14/03/2018 22:27

Under GDPR regs you will find there is no requirement for consent.*
No, but there is a requirement for people to know how their data is being used. And there is also a requirement for a legal basis for the use of data. If you ask for consent, that will kill those two birds with one stone. But, the NHS being the NHS, will come up with a convoluted way of having a legal basis without needing consent, and not bothering to tell patients in the process.

BloodyWorried · 14/03/2018 22:41

Could the GP have sent a referral to the hospital? In which case the referral may have included further detailing. Though the detailing sent must relate to the care given rather than your complete history. SCR is is exactly as others say: current meds, diagnosis and allergies.

LifeBeginsAtGin · 14/03/2018 22:54

Consent is assumed until you you opt out.

As tis said above why wouldn't you want the best care? If you go to A and E with a broken leg the staff don't have a good nosey at your record, they will view specific parts (like allergies blood group) to provide the best care for the broken leg. They really haven't the time to be invested in you. I think they mean your hospital record not your GP record.

And as above, your GP has to specifically share your record with individual departments, that share has to be purposeful or it should end.

Tistheseason17 · 14/03/2018 22:59

"@SammyWhammy85"
You are correct. They already have the legal basis for sharing (to do their job in treating you!) and all they need to do is ensure people are advised how their data is processed and told they can discuss this with someone.
I still query why people aren't keen to share their data to receive the way care? People would soon complain if they arrived in A&E unconscious and the medic was unaware of an allergy to medication they were about to give because they had not shared their record....

Tistheseason17 · 14/03/2018 22:59

Darn auto correct - not way care, best care!

userlotsanumbers · 14/03/2018 23:07

Well I thought that the summary care record was brief, not 'huge' - are you not confusing this with your medical case notes in the hospitals?

I echo the pp's - cutting off medics from large parts of what may be relevant information, then expecting them to treat you with only half a tale is risking unintentionally poor care.

Original poster
CableKnitHuman · 15/03/2018 04:52

Wasn’t my hospital record. And free text has been shared (including the profession of the person who raped me). Which is why I’m furious.

I have opted out. Several times. This really isn’t a case of an SCR giving me better care, it’s a case of a huge breech in trust and confidentiality.

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?

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Original poster
CableKnitHuman · 15/03/2018 05:06

People deserve to be able to have conversations with a trusted GP which aren’t then shared with doctors who may only see them for five minutes.

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