Information sharing ?

[wheezyof]

Twice recently I've needed to see medical professionals who have had no access to my medical records.

Firstly, the respiratory nurse at the medical centre where I see my doctor. As she only had records of my initial lung function test from over two years ago (I've had several test at the hospital since that one) she might as well have been wearing a blind fold. She was lovely but I had to tell her about my lung conditions, the progress of my illness etc. I've seen my consultant since and requested copies of any future tests to be sent to her.

Secondly, this weekend I had to visit A&E with a possibly cracked rib.(Another long story). Again the staff were lovely and treated me very well. (Fortunately the rib shows no sign of fracture but is causing a lot of pain,) I had taken with me a list of my medication and a copy of the consultant's letter stating my two lung conditions. I'm glad I did as A & E can only access A&E records.

The last time I visited them was four years ago before being diagnosed with lung problems and osteoporosis. So again they were working in the dark.

I think it would be a good idea if those of us with chronic conditions could opt in to a note sharing scheme. If we did, signing forms to say we want our notes about our chronic conditions open to any NHS doctor, I'm sure it could be made possible on the computer records. It would save a lot of time for us and the doctors. I am able to explain my condition but not everyone can. What if my rib had been broken and caused a collapsed lung? Maybe I would not be so able.

What do others here think?

[stone-UK]

Hi

It’s all about permissions, your GP will have access to all your records, others may only be allowed to add to but not see your full record.

You may allow a care worker to add information but not necessarily allow them to access your full record.

Similar with other health care personal.

I have always agreed to information sharing when ask, if it Benefits me.

There is information which can not readily be shared due to data protection.

Hospitals general have access.

I rember many years ago to agree record sharing, not sure if it is still the case.

[wheezyof in reply to stone-UK]

That's why I'd like an opt in share scheme as it would benefit me. The main hospital may be able to see my records but A & E? Many people taken in there are in a state where they are unable to speak up.

[knitter in reply to stone-UK]

Hi stone I remember a leaflet being put through the letterbox about record sharing some time ago.

[googeymac1 in reply to stone-UK]

hi stone, ive just picked up my fostair inhailer from the pharmacy and they added an attachment saying this patient may be eligible for targeted mur have you any idea what this means

[stone-UK in reply to googeymac1]

Hi

nhsemployers.org/~/media/Em...

It’s a more advanced Medicine Use Review (MUR)

Ask your pharmacy for a more detailed explanation.

[Katinka46]

Tell me about.... it is all computerised, no paper in sight during the ten days I have been here. But can they access anything from elsewhere? Can they heckers...... Just been moaning to the consultant about it. He can’t access GP notes, stuff from St James’s in Leeds, Sheffield or the Royal Brompton. Luckily I have everything, and am the only one who has the whole picture of this eight year saga. Most of it I photo and keep on my phone. But it really shouldn’t be down to the patient. I was amused by a sentence in the referral letter to RBH from consultant in Leeds. “I am sending all the stuff we have here, but I am aware that there are gaps. But Kate will fill you in.”

And I did.

Kx

[wheezyof in reply to Katinka46]

Oh dear! Again it's a good job you are able to speak up. If there was an opt in for note sharing I bet you and your doctors would like it too.

My consultant from Basingstoke asked my permission to show my ct scans etc to RBH to help diagnose the OB. Of course I said yes. If they can ask and share once then surely we can be asked to a blanket agreement to share.

Data protection is important but we're not asking them to share with the butcher, baker, hairdresser or our neighbours. Let's face it for a person who is computer savvy, has our dob, ni number and a few other details they can find out more about us than a doctor who is treating us!

[SquirrelsHolt in reply to Katinka46]

Well done you! Its quite laughable that all the clinics/consultants/doctors/hospitals dont "share" valuable information. There was me thinking we had most certainly entered into the world of I.T. and yet for the thousands of pounds of tax payers money,its still very reliant on a telephone,written and patient input. Absurd. How can our hospitals that are meant to be "Centres of Excellence", function without the cooperation of so many other departments?

I can feel a " tut,tut,tut!"coming on. Hopefully you are out if hospital now and recuperating. Best wishes.

[Robin77 in reply to Katinka46]

This thread is all very instructive! I have not paid much attention to my records hitherto but now in this new phase I think I will do.

[knitter]

Just had a text from my Health Centre asking me if I still wanted to receive messages about my appointments etc by text ....there was an option of in or out.

New data protection I think .

[clematis5932]

We attend four different hospitals, three of the four can communicate with each other the main hospital we attend can not communicate with the other three.

[wheezyof in reply to clematis5932]

How odd. (The A & E is part of the local hospital where I see my consultant so I would expect them to share.) It leaves me puzzled as to how someone decides who can/cannot share.

[Carnival567]

Try the Welsh-English border thrown into the mix! Welsh GP and Welsh hospitals fine, but Welsh GP and English hospital, hopeless. Care is excellent wherever you go. I have taken to telling everyone in the Bristol Hospitals to give me the details so I can pass it on to gp and the respiratory nurse. I have never spent so much time on the phone to hospitals.

[katieoxo60]

Upto date as I understand it total record sharing is still not happening in the NHS to spite many patients agreeing to it. I presume from a recent letter that this may happen in the near future due to new Data protection regulations, it would save time for staff and patients if main health issues were on all computers that way they would also know about things like allergies, drugs prescribed ect. It takes around an hour to relate health and drug history especially if you have more than one chronic illness.