Greetings both seasonal and personal to one and all.
When I lurk here, I often wish I could post a message of hope and encouragement, that would fire up positive vibes in each reader. Ha! instead I end up taking comfort from the posts celebrating a step forward and sharing empathy for those enduring a step backwards.
Me? The only excitement I’ve had recently is a disappointing Dr. Who episodes. If I could summon the energy, I would wallow in self pity every day. All that effort? Yuk! I’ll settle for hum-drum.
Monthly consultations during the most of this year are now bi-monthly. So, that’s one in the eye for CLL. Huh, I rambled on a bit before I got to that bit.
Oh, I’m going into gimme mode now. Do any CLL’ers in ‘Norn Iron’ have access to their health records online? If you do please share the site with me.
Regards,
John
Written by
Bribin
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Yess, I do via my online link to my doctors surgery , what the company is I do not know but guessing its to do with the NHS.
The NHS app gives the GP record in some detail and some hospitals give access via the My Chart app.
The only haematology records I can access are my blood test results and letters to me and the GP after a haematology consultation.
The My Chart app if your hospital operates is useful to give appointment dates and cuts down postage etc but you can also message the consultants secretary if needed.
We have the MyChart app at Kings College Hospital - also Guys, and UCLH which I go to on occasions. I checked with MyChart support and they said that potentially anything could be shared but the hospitals set limits. I was enquiring for bone marrow biopsy, MRI and CT reports. So, while it’s possible, the only thing I continue to see are blood test results, next appointments, and letters to the GP from the consultant.
I once asked many years ago why the blood test results taken at the hospital were not available until after the consultation. The reply; people will self diagnose and worry. If there is an immediate problem they would phone. However, blood tests taken at the GP appear unhindered on the apps. An ultrasound I got the report on My Chart but not the image.
First you need to download the NHS app. You will then need to contact your local GP surgery to get your records onto the app. I had to provide photo id for this stage of the process and I assume this is standard
Happened to catch "The Giggle" recently, one of the Dr Who anniversary episodes. Liked it a lotI think my favourite Doctor of all was Christopher Ecclestone. He brought real power to the part.
I was tempted to open my response with "hello Sweetie" but despite the Dr Who reference, felt it a little too familiar! Totally agree that Christopher Ecclestone was a great Doctor and his tenure far too short. Personally I love Matt Smith, Pond, Rory, River Song, fish fingers and custard, geronimo! etc.. and who can resist a weeping angel (literally)?I seldom reply to posts but a Dr Who thread is worthy of careful consideration. I enjoyed seeing Donna and the Doctor back together in the recent episodes. It will be interesting to see how Ncuti's Doctor pans out. Hopefully, the quintessential, British quirkiness won't be Disneyfied....😊
I'm.not such a devotee as you. But I'also loved Dr Who when I was a child.. The baddies were so memorable-the Daleks, the Master, the Cybermen. Unforgettable!I wish you a very Happy New Year!
So I've got 3 online things going on. NHS App, Patient Access and Patients Know Best.
NHS App is GP, it has GP messages like book a vaccination, GP health record and view and manage prescriptions. It links to Patients Know Best for hospital messages (ha ha ha!). The prescriptions in GP health record are garbage. Says I'm on 50mg Venetoclax since May, no mention of other 20mg/100mg/200mg ramp up doses, everything is 50mg. I've been on 400mg/day since 24th May. The total number of doses of Obin is 8 which is correct but the dates don't match. Apparently prescribed 1g of Obin on 2nd/3rd/16th/23rd/30th of May, actual dates of administration are 3rd and 31st but no record of initial 3 doses 6th/13th/20th of April. Also claims I was prescribed Obin on 17th October, last Obin IV was 23rd August. Test results are very incomplete, I've had umpteen blood tests, just two on record, one prior to treatment, the other after first dose of Obin. Biopsy results just say "significant" for aspirate and trephine, worthless as no detail at all. CT scan results "significant" in April and "complete remission" in October ( scan was July!). No mention of enlarged prostate or "ground glass" lungs that I have seen as consultant scrolled through it. It's like they are playing Chinese whispers with the expected results of that game. The GP can't put it on the record if they aren't told about medications and complete results. Then it needs a data clerk to enter it accurately.
Patient Access. Doesn't have any records that aren't on the NHS App. It does have some "useful reads". If the GP allowed it, it would have online appointment booking but mine doesn't so it's really useless.
Patients Know Best. One hospital haematology dept sent letters for video appointments and bone marrow biopsy using this but other departments like CT, dental and ultrasound guided node biopsy didn't. Actually stood reading the PKB poster on the wall while waiting for one appointment letter to be printed. Courtesy copies of letters to GP came by post. 2nd hospital sent courtesy copies of letters to GP on PKB but not appointments. A conglomeration of lymph nodes has gone from a reported size of 14x1cm to 14x21cm due to fat finger error. It's supposed to have test and imaging records but they have ghosted me.
The core problem is NHS patients are not the customer so don't get results. The NHS is the customer and results are only notified to the doctor ordering the test.
Happy New Year Bribin! I’m in the US and we have MyChart for both of us. Partner just got his CLL diagnosis. While in the ER the doctor told him that patients get test results back before hospital staff. Fortunately his daughter is a doctor and interprets the raw data before he gets anxious. Sometimes with chronic conditions we don’t need to know everything immediately.
thank you all for taking the time to point me in the right direction. Alas; as ever is the case, the NHS app Allows access to postcodes in England. Northern Ireland (Norn Iron) has its own system called Encompass. But like everything else here it’s not functioning, for patients, yet.
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SHINGRIX
Oxford update
when to begin treatment
Zanubrutinib, Obinutuzumab and Venetoclax. Front line Clinical Trial.
