Patients handrd power to access own GP records

[Bouleversee]

When I handed in a repeat prescription request a couple of days ago, I took the opportunity to ask how I could access my record and was told to download the NHS app. which I could do on my tablet but would only be able to see things from the date I did that. I was told I didn't need any forms or permission. Haven't had time to try it yet.

I also discovered that there was a copy of a letter to me from my respiratory consultant on my record, dated Nov. 7, with the results of my Sept. 19 CT scan, which I have been chasing but have still not received myself. I did, however, receive a reminder of a hospital appointment in January which didn't say who it was with or what for and I knew nothing about till the notification letter arrived a couple of days later. Turns out it was an error.
The blessings of automation!

[bungeejumper]

When I handed in a repeat prescription request a couple of days ago, I took the opportunity to ask how I could access my record and was told to download the NHS app. which I could do on my tablet but would only be able to see things from the date I did that. I was told I didn't need any forms or permission. Haven't had time to try it yet.

Interesting. When my wife signed up to SystmOnline recently - which requires photo-identity and a few disclaimers but nothing much else - she got immediate access to all her GP's records for the last 15 years. Might be worth the extra trouble, if it's available from your surgery?

Mind you, private medicine isn't above a few bits of iffy information. When my wife saw a private hospital consultant a few years ago, about a dietary matter, the young chap asked her how much alcohol she drank? She replied that she used to drink the odd glass of white wine, maybe half a dozen times a year, but that she'd stopped doing even that because she preferred water.

Consultant's notes to her GP: "The patient has now stopped her drinking". Thanks, fella.

BJ

[Bouleversee]

I don't think it is available, BJ. The person I spoke to didn't even know that patients had a right to see their records. Not exactly up with events.

[XFool]

NHS England faces lawsuit over patient privacy fears linked to new data platform

https://www.theguardian.com/society/2023/nov/30/nhs-england-faces-lawsuit-patient-privacy-fears-new-data-fdp-platform

Four groups claim no legal basis exists for setting up the Federated Data Platform which facilitates information sharing

"Rosa Curling, director of Foxglove, a campaign group that monitors big tech and which is co-ordinating the lawsuit, said: “The government has gambled £330m on overhauling how NHS data is handled but bizarrely seems to have left off the bit where they make sure their system is lawful.

“You can’t just massively expand access to confidential patient data without making sure you also follow the law.”"

[XFool]

Another view:

You may balk at giving your health data to Palantir but it could save your life

https://www.theguardian.com/commentisfree/2023/dec/02/you-may-balk-at-giving-health-data-to-palantir-but-it-could-save-your-life

The NHS’s deal with the US tech company raises privacy concerns but a unified database could be a medical gamechanger

[XFool]

Was I previously logging in via a direct "NHS Account Information" link?

NHS Account

Confusing is this!

This: https://settings.login.nhs.uk
NHS login

This: https://www.nhsapp.service.nhs.uk/login
Access your NHS services

Yes. Because, unnoticed by me, I was logging in to my NHS Settings. From where it appears you cannot get directly to your NHS data account. That is, as above, via a separate login link.

So now there is:

GP surgery Text messaging
Patient Access
Triage by eConsult, via GP's website
NHS Text messaging
NHS email messaging
NHS Settings login
NHS Account login
Local NHS Trust Login (Access to "Your letters and documents")

And now, for something completely different...

There is (something I have never heard of before): '<Local Authority> Referral Support Service' complete with "Booking reference number" plus "Access code", rather in the manner of online voting with company AGMs.

Plus letters by post (I almost forgot!)

Should keep us all alert.

[XFool]

Um...

With the above in mind, I have just opted out of my local Health Trust's Portal messaging service.
What originally seemed like a good idea is now just proving to be confusing - far too many messages.

It is telling me I have an appointment tomorrow morning at 9.30am at a hospital quite some way from my home (possibly for a cancer diagnosis). I am currently thinking of just not attending as I am now too confused as to whether I have such an appointment or not - I thought I had originally rescheduled it - and I don't want to waste my time and money turning up to find I don't have an appointment and I cannot get through to the hospital by phone to find out.

I received an NHS hospital phone call earlier today when out but missed it, So... who knows?

Looks to me as if more integration is called for in these health systems, plus the ability for the patient to respond in some more effective way.

[the0ni0nking]

My app shows me as I'm awaiting to hear from 2 separate GP referrals to my hospital (one to ENT and one to Dermatology). This dates back over 2 years and the app recommends that I contact the hospital to find out what is going on.

As it is, I've been seen and discharged from dermatology and am awaiting a date for my operation in respect of the ENT referral having had a number of telephone appointments with dermatology and been seen in person about 4 times regarding ENT (with the conclusion that I needed an operation and which I'm waiting for).

So I'd concur - some of the integration is less than satisfactory.

[stevensfo]

Um...

With the above in mind, I have just opted out of my local Health Trust's Portal messaging service.
What originally seemed like a good idea is now just proving to be confusing - far too many messages.

It is telling me I have an appointment tomorrow morning at 9.30am at a hospital quite some way from my home (possibly for a cancer diagnosis). I am currently thinking of just not attending as I am now too confused as to whether I have such an appointment or not - I thought I had originally rescheduled it - and I don't want to waste my time and money turning up to find I don't have an appointment and I cannot get through to the hospital by phone to find out.

I received an NHS hospital phone call earlier today when out but missed it, So... who knows?

Looks to me as if more integration is called for in these health systems, plus the ability for the patient to respond in some more effective way.

plus the ability for the patient to respond in some more effective way.

Making it difficult or impossible for a client to respond seems to becoming more and more standard behaviour these days.

Last month I received a message from an online bank and to my surprise, it wasn't a 'Noreply' email address. I replied, asking a question and got an answer within a day! I guess their IT people will be sacked pretty soon.

That's why, apart from favouring communications by post, I save all email addresses I can find for certain companies/organisations.

I'm also thinking again about setting up my own 'Noreply' email address, just for the childish satisfaction it would give me.

Steve

[XFool]

Looks to me as if more integration is called for in these health systems, plus the ability for the patient to respond in some more effective way.

plus the ability for the patient to respond in some more effective way.

Yes. I was thinking just this myself last night. There is a communication problem. With appointment messages from the NHS PORTAL I can "CANCEL" or "RESCHEDULE" - but have no input beyond that via SMS, AFAICS. If I get an NHS appointment letter in my hand I can see the clinic's phone number, ring them up and discuss it with them, or they may in some cases ring me. That is what happened with my recent colonoscopy, I got it moved from the same remote hospital to a more readily accessible one. Now all I can do is go via the Trust's main switchboard and listen to music...

The 'message' I eventually sent today is "I'm not here".

This somewhat echoes my experience over the pandemic and lockdown (reported elsewhere on TLF) where my local hospital 'disappeared', never to return (at least its website did). Leaving me to think it was off limits, for things like blood tests, for about two years. One day, browsing the main health trust's hospital website I stumbled across the 'missing' login for blood test appointments and reconnected to the NHS!

Now even the Heath Trust's main hospital website has gone: all replaced by the NHS Portal.

The situation with GP's, which I am OK with now, was much the same. It all happened but nobody told us, we had to find out about it ourselves. I was helped by accidently hearing a woman GP on the radio discussing the new model. It seems to be the way the world works these days. I remember decimalisation: I feel, if that happened today, we'd hear various random comments about how "decimalisation is coming" and then one day, we'd go to bed on a Sunday night, wake up on Monday morning and find we had been decimalised overnight. A week of Confusion!

[XFool]

Sigh...

Attending another hospital appointment this afternoon (that's the way it is, nowadays), at my local hospital, while waiting I was scrolling through my messages and discovered one of the two messages about this morning's missed appointment was direct from the clinic concerned and had their landline number at the bottom, which I had overlooked.

If I had known I could have phoned them directly. Oh well!