Dr. Hospital Notes

[mag123ben]

Just read other MPN patients in the UK can get results on line. I live in Wales... UK but not. If that makes sense. I have tried for over a year to get my notes from the Dr. On line. To see how long my bloods have been anemic. I do know I was put on iron tablets over 10 years ago, taken of and put on. Never had any Dr send of for proper tests until I moved then in two years told I had blood cancer. My other symptoms told me I had it for years. But they blamed it on my fibromyalgia and that was not believed by many. Sorry I'm in a brain mood again upsetting so many people with as my daughter says thinking of myself. But how to be positive never found it.

[hunter5582]

You have a legal and ethical right to all of your medical records. Unfortunately, some systems choose not to post your records in patient portals where you can easily access them. You may have to put in a written request for the records you wish to see. While the doctors notes in your chart can be helpful, copies of your labs and reports from testing are essential. Monitoring your status over the years is a critical part of managing your own health.

If you are having trouble accessing your records or having other issues, you may want to contact one of the advocacy organizations for assistance.

cavuhb.nhs.wales/patient-ad...

llaiswales.org/have-your-sa...

Wishing you success moving forward.

[mag123ben in reply to hunter5582]

Thanks for your reply will give it a go.!

[SUFCbaldy]

I can see my doctors notes via NHS app. However for some reason blood results can't be uploaded, so I ask for them to be sent to me. Which they duly do

[quanglewangle]

Same problem with records in Scotland.

We have Patient Hub and Patient Access but there is no joined up system (can get appointments on one and not the other for instance). I certainly cannot look at my records online.

I can ask my GP surgery by phone and get a copy of my blood results (showing the last 5 tests they have taken) but when I asked for the results of tests taken at the hospital when I recently had my pacemaker changed and a week later Gastroenterology, the GP said they could not access those test results - and I would have to ask the hospital. So I contacted the hospital and had to fill in a multi-page form online for the first test; then amazingly a copy of the form arrived in the post too and so I used it for the Gastro test as this was more thorough and would be of interest in understanding how my system is (not) working. One acknowledgement was received stating that it could take a month (unless it was complicated in which case they are allowed up to 3 months!) So two requests for just one blood test each sent in a week apart - and two months later I have got absolutely nothing.

Why can't the hospital tests be available to the GP (and me?)? The treatment I have had from multiple departments of NHS Scotland has been great BUT accessing records is hopeless and shows no evidence of joined-up thinking. As Hunter points out we need to be able to monitor our own health as an important part of managing it

[nellietheelephamt in reply to quanglewangle]

I'm in Scotland as well and the system is a nightmare. I got to see my records and found out my records were mixed up with someone else's. I pointed this out, the records were whisked away never to be seen by me again.

According to the hospital records I am male ( not last time I checked) and alcoholic ( I am teetotal).

Formal complaints go nowhere even when the SPSO are involved.

[quanglewangle in reply to nellietheelephamt]

Progress?

My request for (only) blood test results from two hospital visits in June (supposedly to be supplied in a month (but could take 3 months if complex!)) finally turned up yesterday. The first - taken when my pacemaker was being replaced - and form filled online, yielded highly redacted records from original PM installation + replacement PM + recent opthalmology referral and nothing else - not even the blood results that was all I had asked for and certainly no mention of cataract ops, Haematology reports, colonoscopy etc etc., so maybe huge chunks of my history are missing from hospital records......

The second request on a paper form sent by mail a week later was for results for test analysis from Gastroenterology - it arrived the same day (with an apology!) and was the full report 😀having also taken two months to supply.

Meantime my GP took bloods , rang me with results and supplied a copy same day.!!

I would send some glue to help joined-up thinking but suspect it would be futile!!!!

[hunter5582 in reply to quanglewangle]

Sorry to hear the travails continue. This sounds like a case where persistence must meet resistance. Redacting your record before sending it to you is unacceptable and I believe not consistent with the law in the UK. Those are your records. You own the information in them. It is your right to see all of your records anytime you wish to do so. It sounds like your GP understands that and is providing the access you deserve. They should be used as examples for the others.

Wishing you success moving forward.

[nellietheelephamt in reply to hunter5582]

Redaction of information is common. When questioned the reply is always along the lines of "disclosure in not in the patient's best interest" and a court Injunction is needed to obtain the full report. Been there and done that

[Plavers]

sorry you’ve had difficulty in getting blood results. The problem seems to me that everyone seems to have a different system. My GP has one my Haematologist has another and Guys hospital another (the best, clearest and most comprehensive of all) Ironically getting blood results can sometimes be like getting blood from a stone! Just keep on trying, you’ll get there in the end.

[ciye]

I use the NHS App I asked thegp surgery to aloow me access to my full medical history, it was just a matter of filling in a form at reception.My local hospital use Mymedicalrecord app and I can veiw all my hospital blood test on there.

[mag123ben in reply to ciye]

I live in Wales and it is a real problem. Tried a year ago and got no wear . Will be trying again . I just need in my mind to know how long my bloods have been cancerous.

[quanglewangle in reply to ciye]

It would be great if NHS Scotland could follow suit !!!

[DJK12 in reply to quanglewangle]

I'm afraid, from what I gather, that the computer systems used by NHS Scotland are very creaky and upgrading them is a massive undertaking.

[nellietheelephamt in reply to ciye]

Not available in Scotland nor by the looks of it Wales.

[Gipsy123]

I’m now bring treated in Scotland, Lothian Region and also cant get hold of my blood results online. Or even by email.

.

[Devilgirl]

I'm in Cumbria & have the same problem getting my blood results online. I'm signed up for access to my medical records on the NHS app but can only access results requested by the gp surgery not the hospital. I was once told that the surgery can access the results if they download /import?them onto their system from the hospital system but they only do it if they need to see the results.My haematologist now sends me paper copies.