Not exactly AIBU, but ... the NHS should have, and use, my medical records, right?

[SarahAndQuack]

I've just had a phone appointment with a NHS consultant. My GP referred me, but apparently the consultant couldn't see anything on my medical history. This isn't the first time I've been told this. I've moved GP twice in the past few years and both times the new GP didn't seem to have anything on my medical records (one time they had nothing at all, the other time great big chunks were missing).

I've had various tests and procedures on the NHS, and they're just not recorded.

Is this a concern? I get that obviously I can just tell them the details, but would you not expect them to type my medical number into a box and see it all pop up?

(Just so I don't drip feed, my previous GP had awful form for confusing me and my partner and got us mixed up more than once, so I do wonder if her record is about nine miles long and full of two people's histories?!)

Were you under a different NHS district? They often have seperate databases (which I think is pretty stupid tbh.)

Ah, that must be it - thank you!

I don't understand why the notes don't transfer from GP to GP, though? Wouldn't it be a risk, because they're basically relying on me to know my own medical history. I do mostly know it, but there were a couple of questions I couldn't answer and it just seems a bit strange to assume people would remember accurately.

So this experience is at least 5 years old, but my understanding is the new surgery has to request info from the old surgery, everything isn't linked up and, say, out of hours walk-in centres won't have access to your records even if they're online in your GPs.

I had this experience because I went to an out of hours GP while visiting my partner (other end of the country) and I knew I had a bad reaction to an antibiotic but wanted them to check which one. They couldn't access it, and I said oh right is that because its a different trust, and they said no stuff the GPs could see wasn't automatically available. I then moved and was told they need to email them to the new surgery. All this may have changed but certainly at a time when I assumed it would all be connected (as it was all in an online database) there was no linking up and I had to ring the practice manager myself to get it sent on.

That's a really weirdly inefficient system! But does make sense.

(And thank you!) Sorry, this is clearly the most boring AIBU ever, but very useful for me. You'd think the GP might say this stuff.

Hi, I'm a GP. Records should transfer between GP practices. However beyond that it's a nightmare. It's all to do with data sharing. So before any information can be shared we have to be certain there's no 3rd party info.. Eg Sarahand Quack's son is ill so she is stressed.... There are such strict laws on data which is why its so restricted but I completely agree its a clinical nightmare as lots of specialities don't have access to the full picture (although a brief summary goes with every referral) I think there was a project about 12 years ago to try and link up systems, the government spent silly amounts and for whatever reason it wasn't fit for purpose.

I'm not sure if I've read your OP correctly, but (in our NHS Trust, at least), the GPs notes are entirely separate from the hospital's notes.

They're still paper based, too! Some information is digital, but our Trust stores about 1.5 million files and employs about 50 people to get them from one place to another.

You say you've moved GPs twice, but are you still being treated within the same NHS Trust, i.e. the same group of hospitals?

Sorry I made it sound like it was all about 3rd party info. Its not just that; it's the data laws that do not allow any sharing of info.

NHS data systems (and social care systems) are extremely crap. They often don't speak to other surgeries or trusts so yes, there are gaps, inconsistencies and safeguarding concerns.

It's really rubbish. Some will request files but many don't. YANBU to find it unacceptable as in this day and age it really is unacceptable.

The consultant in the hospital will have access to your hospital records from that hospital, ( often large volumes of paper notes). They will not have access to your GP records ( other than whet the GP has stated in your referral). Different GP practices use different systems too my local one uses systm1 but another down the road uses EMIS if I was to change practice a printout might be sent but i believe it would then need inputting to the new system with the correct codes ( it could have been improved in recent years?)

It may be Daft but it’s how the system works.

Ds had a joint appointment between camhs nurse and psychiatrist last year - both work from the same building but both are different trusts. Both had access to different parts of his records!

Thanks @WillowSummerSloth, that's so helpful! It must be very frustrating for you to deal with.

@MsVestibule - no, I moved hospital groups as well. The last one I was with had a digitised system, but it was awful - when DP was in hospital it kept freezing so they backed it up by hand anyway!

This has been really useful, thanks everyone. I guess the records are there somewhere, just piecemeal across different systems. But reassuring to know they probably could be found if we really need to check things.

I think there was a project about 12 years ago to try and link up systems, the government spent silly amounts and for whatever reason it wasn't fit for purpose
It actually started out way back in 2002 and by the time it was abandoned it had cost GBP10 billion +. You know that Groucho Marx quote that he wouldn’t want to be a member of any club that would have him? Well successive governments really should learn not to give public service IT contracts to companies that process to want them. Disastrous. Anyway, do you have a copy of your own medical records? Maybe requesting them for yourself is a good idea if you’re unsure of what’s in them (not that it would resolve the situation I suppose)

[wow]

That is terrifying about the money.

And no, I don't have my records - that's a really good idea, thank you!

The last time there was an attempt to properly create a patients NHS database it collapsed in failure, with legal wrangling about compensation still rumbling on.
The main cause of failure was ineptitude by the NHS/Government in stating what they wanted, and even when they did come up with requirements they kept changing them. It was rather like asking a builder to construct a house and then constantly changing specifications, some with such fundamental impacts that the whole structure had to be torn-down. Add to that some woeful contract negotiations that left the contractors in a position to demand unexpected costs, a change in government that wilfully wanted the project to fail, and the outcome was inevitable.

From NHS Digital:
"Summary Care Records (SCR) are an electronic record of important patient information, created from GP medical records. They can be seen and used by authorised staff in other areas of the health and care system involved in the patient's direct care."

The SCR only holds info like allergies and long term conditions. It doesn't hold all your medical history, unfortunately.

It’s frustrating. Every hospital and GP have different records which can’t talk to each other. Where I work I can access some GP records which is very helpful but I have no idea if they have seen a consultant at St Elsewhere 10 miles down the road.

Notes will be transferred, or should be, but there are all kinds of limitations due to privacy laws. We need those privacy laws in a computer age where data regularly goes astray, sometimes into criminal hands and sharing is misused by those who have financial interests. An optimum strategy has not been achieved yet.

When I moved GP, I had a booking in appointment. This included a medical history form to complete beforehand and was discussed at the booking in appt. as a result certain things were discovered not to be in my NHS record on line but my GP got records then from my old GP

Thankfully also resulted I certain tests being done that last GP didn’t think we’re necessary (one reason we left that GP).

So it is also somewhat down to you too when you change GP to ensure your own medical history is complete and passed on, even just a cursory verification.

I had a booking-in appointment with both GPs, so I don't think it's that.

I think, as others have said, that the issue here is the consultant not having access to the GP's records.

It is a nightmare for doctors too. But as others have said it is about IT systems not being able to talk to each other. They can differ between hospitals, counties etc.

YY, I can see it must be such a pain for doctors. I hope I didn't come across as complaining - that wasn't my intention. Just wanted to know if it was something that I should expect, or a problem I needed to sort.

No it didn't come across as that at all! It's a pain for everyone involved x

Good!

This thread has been really helpful, thanks everyone.

They all use different IT systems that can’t communicate. They are trying to fix it and spending a lotta money trying but it is a massive massive task.

My consultant asked me to photocopy his notes and give them to my GP as otherwise GP wouldn’t know what medication I was on.