I used to be able to get results from my GPs surgery on my account on my phone but not the test results requested by my hospital consultant. I used to find this irritating enough but now I can’t get any.
Has anyone experienced the same and what should I be doing about this?
Ask your hosp consultant or hospital PALS team about accessing your results. We have a system here (UK) that works well. But still needs your hospital team to manage their side. They will need to check all results before releasing to you.
Also all blood tests, taken at your GP surgery or Hospital should be sent to both. Easy for the Lab to do thar.
Its something your GP can arrange too.
Jig
Thanks for your quick response. The test results are being sent to both but not to me. When I ask for them they say “what do you want those for”. When I insist they tell me to contact the specialist nurse and ask for a print out. Which is met with a being a nuisance tone. As far as GP is concern is it the practice manager that I need to speak to?
I am in UK too.
I am sorry for your hassle. These are your results.
I would encourage all with CLL, and other conditions, to take an active interest in their results.
You should not need to have to hassle to get them.
I can access the hosp results by one method - unsure if this is local or a nation system.
And I can access the same results at the GP surgery.
Both Haem and GP will be looking at their results and then they are acted on - or filed. Once filed - you should be able to simply access them on line with out involving anyone. You get a password etc of course.
I would speak to you GP, at first. Your care and medical welfare is the concern of the GP. Explain the situation and ask for a solution.
The CNurse Specialist should be helpful. Mine is.
For sure - if I have bloods done - like tomorrow (!) I email my Haematologist and GP and say blood has been takem - please will they check them and "release" them. It can be a hassle - simply cos they are busy. I have to attend another small hosp regularly (non CLL issue) 1 hours drive - but the visit need is determined by the result. I manage that - saving me a wasted visit and them a wasted appointment.
You are not making an unreasonable request.
Many wont be interested. GPs etc are busy. There is a worry perhaps that if patients get a result - misinterprets and then seeks urgent reassurance. It is a "fuzzy" area that exists twixt patient and doctor.
I would start with the GP. Every practice in the UK has them means to make results available to patients.
Jig
It's intermittent depending where bloods were taken.Sometimes I can see full bloods on system online that I access GP notes from and for ordering prescription etc.
These bloods would have been taken at the surgery using consultant blood cards.
GP requested bloods the same but all blood results go off system after a month.
I often have to say can the nurse at GP copy bloods to GP from hospital consultant requested ones.
It's so hit and miss.
If I've asked consultant for bloods to be copied with the letter from consultation sometimes they only list a few results not the whole test!!
Dave
Me too. It’s so frustrating.
Yes...... I had my CLL bloods done at Guy's Cancer Centre on April 13th......Still no results.... I used to get a letter, with the results, before.... But nothing as yet. Maybe they are snowed under...
If l get bloods done in the main part of the hospital..... I can get the results through the Patient Access App.
Yes my Haematologist said they are going paperless so I guess that’s why l haven’t received any letter since January.
I'm going to give it another week, and then, I'll email my CLL nurse..... I'll let you know what happens...
I think it's vital we are kept in the loop...... It's OUR health! Not knowing the results, may cause distress.....
I was denied mine at the hospital on the grounds of data protection (by sister in day unit where I was getting my Obinutumazab) it certainly isn't universal NHS access sadly
If l was being cynical, l might say the NHS were keeping quiet about the stage of our condition, to save money..... by denying us treatment, when we need it..... I hope that's not the case.
I have emailed my CLL nurse, requesting my recent results....... Let's see what happens.
I'm now known as MistyMountainHop2......I'm not sure what happened, but l was locked out of my last account, and had sign up to a new account..
MMH2, You should have been able to do a password reset at the login page.
Have you emailed HU Support for assistance at support@healthunlocked.com ?
Neil
I did try to reset my password.... without success. I didn't contact HU...... I just signed up for a new account....
I have a VPN on my phone..... That may have something to do with it... They can be a pain...
Thanks for the reply and information👍
Hello Neil,
It seems, there was a cookie problem on Chrome.... It appears to be ok now.
I received an email with my results, from my CLL nurse......
Email/phone your Haematology department for your results... Ask them to email your results to you.
I haven’t had much luck with blood test results since I changed consultants. When we were still attending clinics I asked for them to be printed out, but the printer wasn’t working or they'd run out of paper, so I left a message with the secretary to send them to me - but that only happened a couple of times. Since we have gone on to telephone calls they reel them off if I ask, but can’t get it all down, and no one seemed to know about the availability online.Given up now.
Chrisx
Thanks for your comments. It’s good to know that it’s not just me that expects to get my blood results. I end up feeling I’m being demanding. I’ll keep on trying though as it’s the thing that helps me feel I have some control over this awful disease.
There is a site called Patientsknowbest which all the hospitals I go to post all the results of anything. Also appointments etc etc. Its great to go through blood results after your appointment. Maybe ask you CNS if they use this at the hospital you are at. My GP results are held at my GP surgery, but hospitals seem to be able to access those. I can access them too.
This is what I use too - it's embedded in the NHS app - there's no need to ask for test results here (West Sussex) - within 90 minutes all blood results and charts are available - I even get a text telling me that the data is there to see. I didn't see it at first on the app until I realised that it was under the tab "Your Health" then select "Test results and imaging". It's unacceptable for this information to be withheld from you.
Yes exactly. I used to receive mine in that way. Couldn’t believe how efficient it was. No anxious waiting for results. But now all gone and can’t get it back.
Although I am going to try Walkingtall62’s suggestion of going on ‘patientsknowbest’ site when I get a moment. I’ll keep you informed.
Good luck with patientsknowbest.com/ This is what should happen.
Once you're registered (store your password as an update to any previous logins) you will be taken to my.patientsknowbest.com/login.jsp
Click on Health then Tests to get a calendar plot of your test results with the measured value and normal range. Doctor's comments are minimal.
I had the same issue with my last consultation. I said to the haematologist it was important to me to get a copy of my bloods but he just said he put a few of the results in text in the letter to my GP and copied me in.
I’m in Scotland so there is no app that I can access my health records or blood results and don’t have Clinical Nurse Specialist. It seems our region is a bit behind with the times.
Some general feedback per your replies and for others reading your post:-
1) Test results are yours and generally, we have the right to our results, no matter where we live
2) There's usually a vetting process, whereby your doctor/specialist/clinical nurse first sees the results before they are available to you
3) It is TRENDS that are important with CLL; in general we shouldn't get concerned about sudden changes, particularly if we feel about the same health wise
4) It pays to learn about the relevance and importance of various key blood test results to CLL and any other comorbidities you may have. One advantage of having CLL is having regular blood tests, whereby you can keep a better eye on your general health
5) Further to points 3 and 4, it's not uncommon for members to become very concerned about changes in their blood test results. Mostly those concerns are unwarranted. Sharing them with the community is an excellent way to allay those concerns, or to be better prepared to discuss them with your doctor/specialist
6) Having a look at your blood test results prior to your appointment with your specialist can be an excellent means of focusing the limited appointment time on matters of concern to you
7) This post references some spreadsheet templates for tracking trends in your blood test results and learning more about the importance of specific results: healthunlocked.com/cllsuppo...
8) Dr Susan Leclair has provided quite a few easy to understand video presentations about understanding your blood test results, per this search result: healthunlocked.com/cllsuppo...
Other references:
healthunlocked.com/cllsuppo...
healthunlocked.com/cllsuppo...
healthunlocked.com/cllsuppo...
healthunlocked.com/cllsuppo...
Neil
Thanks Neil you hep me feel I have the right to ask at least.
I am 2 months away from finishing O&V & have a consultation by phone with the specialist nurse, before they approve the next month's issue of Ventoclax. After the conversation I ask for a screenshot of the results, which has not proved a problem (Univ of Stoke) What is awful is that about 6 weeks later, after another consultation has already happened, I get a copy of a letter which has been sent to my GP, which is pretty damn useless in its lack of detailed content & its timeliness.
Ring your GP surgery and ask them to access the results for you. At my surgery the secretary knows how to do it. They will then print them out for you
My surgery told me that they would only do it the once as it all took time and if they had to do that for every patient...... I wasn’t asking for a gold bar or a real diamond.
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