Why would a different hospital trust want access ... - LUPUS UK

LUPUS UK

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Why would a different hospital trust want access to my records?

DaftCat profile image
DaftCat

My normal hospital trust has an online service that tells you when appointments are changed or notes added. Things like that... Today I’ve had an email to say that the patient records service at a totally different hospital trust has been granted access to my records. I have no idea why. Has anyone else had something similar?

I’m thinking the last time I went to see my rheumy he did some more major blood work and a chest X-ray in preparation for going on azathioprine. When I say major I mean looking for hepatitis and HIV!! Ive had a letter back saying those tests were satisfactory.

My mind has gone in overdrive and now I’m expecting a letter to say to attend this other hospital with no idea why.

17 Replies

Lots of trusts are linking up in different ways.

Perhaps more concerning is when data is then accessed by tech companies such as Google.

True! True!

Hidden profile image
Hidden

Hi DaftCat,

1.Make sure this email request is genuine. There are so many scams out there dressed up as something else.

2.Go back to the source of the email ie the originator and get reasons for this request. Your hospital data, records, diagnoses etc are precious and CONFIDENTIAL to you and your genuine carers. Surely permission should be sought from you first?

3.Who was responsible for granting access to your data?

4.Normal courtesy and protocol should be to ask your permission FIRST?

Regards

DaftCat profile image
DaftCat in reply to Hidden

Thank you. I intend to make some phone calls tomorrow as this has got me quite worried. If it’s data sharing I haven’t been asked for my permission. Equally if it’s for an appointment, why? What else aren’t I being told?

Lizziequink profile image
Lizziequink in reply to DaftCat

Hi DaftCat. My experience has been exactly the opposite. Pre-op bloods that were done at my local hospital prior to an operation that was being done at a different hospital (in a different Health Trust) weren't passed on so had to be done again, delaying the operation. The second lot of bloods showed that I had Lupus Anticoagulant, although it was pointed out at the time that doesn't necessarily mean Lupus is present but that my rheumatologist needed to be made aware of the fact. When I told him, his response was that nobody had told him and ignored it despite the fact that I was by that time showing all the symptoms of Lupus and my GP was expressing concern about my symptoms.

DaftCat profile image
DaftCat in reply to Lizziequink

That’s very worrying! Ive phoned the ‘other’ trust and they have no record of me. It’s all very odd.

Lizziequink profile image
Lizziequink in reply to DaftCat

Now that does sound a bit suspicious!

DaftCat profile image
DaftCat in reply to Lizziequink

Yes. It’s being looked into.

Lizziequink profile image
Lizziequink in reply to DaftCat

Hope you get some answers.

DaftCat profile image
DaftCat in reply to Lizziequink

Thank you.

baba profile image
baba in reply to Lizziequink

I hope you have been retested for Lupus Anticoagulant..

Further information here:

ghic.world/

healthunlocked.com/hughes-s...

DaftCat profile image
DaftCat in reply to baba

Hi Baba, my concern is that my medical records may have been accessed unauthorised.

baba profile image
baba in reply to DaftCat

I understand, my previous reply was to Lizziequink.

DaftCat profile image
DaftCat in reply to baba

Sorry! I just realised.

Lizziequink profile image
Lizziequink in reply to baba

No I haven't Baba. I'm currently waiting to see a new rheumatologist and have an appointment in December. The guy I was seeing just wasn't interested at all. When I saw him around September of last year he said he wanted to see me again in a year. Following my op in November I contacted his department to report what the blood tests had shown and that was followed up by a letter from him cancelling the 12 month appointment and pushing it back to next May which would have been 19 months since my previous appointment.

When my GP contacted him about her concerns he blamed the new appointment on the appointments clerk saying it had been changed without his authorisation. The appointment was then pulled back to 12 months as originally agreed. He was very defensive when I saw him saying I'd never mentioned the symptoms my GP has highlighted and wouldn't listen when I said they were symptoms that had developed since I'd last seen him. Every time I tried to say anything, he stopped me. He then asked me to hold out my arms, and gently stroked my wrists and elbows asking if it hurt when he touched them. When I said it diddn't he told me I didn't have Lupus I had Fibromyalgia and said I obviously had no faith in him and it might be better if I saw someone else, which I'm more than happy to do.

Many thanks for the link you included in your reply. From experience I can certainly understand why people get so frustrated trying to find out what's wring with them.

Ive got an update. It was a technical error. The new trust were being added to that system and for some reason everyone got an email about it. Even if you didn’t belong to that trust. Ive aired my concerns and they’ve taken it seriously. I’m happy with that.

I received this also it was genuine and iveouldnt mind but I went to this hospital referred from my local and there they referred me to neurologist but back at local it’s crazy.

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