Currently tapering down on meds. On RTX infusion , Methotrexate and Prednisolone. There is the need to monitor bloods and every three months get a ANCA reading. Thought I would look on the NHS App for results, but none are visible. On call to get the results, queried and was told its political, if from Dr Surgery then they will show, if hospital they wont
That seems bonkers. am in Leicester
I'm in the US and have to tell you that after reading so many posts on here regarding the NHS, I hope we never go to socialized medicine. I hear the same sort of complaints coming from Canadians. My doctors (GP and Nephrologist) give me a lab request which I take to one of the large lab companies (Quest or LabCorp), get my blood drawn, then within a week, I can log in to my patient portal and see all my lab results. I had commercial insurance when myself and my wife were still working and now we have Medicare. In either case, we could call and make an appointment at pretty much any doctor's office including specialists. And it doesn't take forever to get in there. I know a lot in the UK are frustrated and I am too. I was DX in 2017 with Anca GPA and I know from experience that if you don't get treatment quickly, it can do a lot of damage. I feel the frustration.
We might moan about the NHS, but it's bloody brilliant!To be sure it could be much better and there are many issues caused by deliberate and callous under-funding by 13 years of conservative government. At the end of the day you will never hear of someone going bankrupt to pay for their medical care or someone who does not have insurance being refused medical care.
To be clear i was being critical of the app NOT the NHS. Am sure there are a good many people around the world without money, who would love to have our system of free to everyone . The NHS have been wonderful in my diagnosis and treatment
I’m in the US and my specialists take forever. One of my daughter’s specialists is booked nearly a year out. Mine are a routine wait of many months except, thankfully, for the wonderful rheumatologist who treats my GPA, but of course that’s an ornery disease that can make some quick moves.
Thankfully Medicare is still covering telehealth so I can quickly get a video appointment with my rheumatologist to review test results. He’s also super responsive to messages through the portal I’ve gotten replies at night and weekends but that’s not because of a better system he’s just a great doc.
I do appreciate that my lab tests are easy to schedule online and and that my test results often arrive in my online records by the same evening.
I can’t even see my primary doc in a timely way. Only nurse practitioners. And there are few if any sick appointments. I’m told to go to urgent care instead since my ENT doc never has availability.
One of the biggest problems in the US healthcare system is that there are not enough doctors for the population. In theory, it would work flawlessly with commercial insurance, Medicare, or Obamacare, if there were enough facilities and staff. It's gotten to where doctors are booked out for months, aren't taking new patients, and don't spend as much time with patients as they should. My son is a second year resident at a major hospital in Florida and he is working 80 hours a week. All I can say is that socialized (free) medicine is not free. If you would like that here in the US, be prepared to give up another 25% of your paycheck.
Of course socialized medicine isn’t free. But in some countries what you get in exchange for your taxes can be significant.
I view our system as badly broken (which is also something every one of my doctors and nurses have said to me) and I’m not optimistic that it’s going to improve.
You must be very proud of your son. I think medicine is a noble calling.
curious...what is your source for an uplift of an extra 25% in everyones pay check
Don’t know about it being political but I was told the same. GP’s put results on app for any bloods organised by them. I always ring my Rheumatologist’s medical secretary the day after hospital bloods and get the results from him.
I'm under NGH, and this is how it works for me. Whether I go to blood taking at the hospital or in my GP surgery, if the tests are requested by the hospital I ask for a copy of the results to go to my GP. If I forget to ask then they don't. When my Surgery gets the results they text me, saying whether they are normal or whatever. The full results appear on my NHS app, as well as my SystmOnline account, and my Airmid app. The Airmid app gives Progress charts, so I can see the graphs as well. It's all very comprehensive information so long as I remind the nurse or Phlebotomist to request a copy to my GP Surgery. So annoyingly, I have a few gaps. I hope this helps.
thanks.. will try that . Its not really an issue, just seemed crazy and a waste of resource
Thanks for this advice May. My GP looked on the hospital data base to check my results this week but if I ask the hospital to send copies to my GP they will then upload? Our surgery has been taken over by a larger one. We had a few blips re getting appointments and the IT side of things but it’s all getting much better. The new surgery uses the Airmid app so I can see progress charts and it’s possible to ring both surgeries for appointments now. I was shocked when someone answered the phone immediately this week and I got an appointment the same day. Onwards and upwards…
Hi Bailey59, same here pal I am in North Yorkshire and if tested at the hospital no joy but if done by surgery they are on the system but my surgery are so bad the odd occasion I have had my bloods done their they have not done the ANCA because they don’t understand it. I have found a way round it though, I have two options I know the nurse that does my bloods, she has access to the ones done at hospital and she is able to upload the data don’t ask me how. Secondly or alternatively I get my Consultant to send the blood forms to me so I can then try and book in at the surgery to have them done there or go to a nearer hospital who do them there and are on the system. I like you am approaching my last treatment for now.
PS as you are in Leicester and I am in North Yorkshire you have one of our Kings buried in your cathedral. Can we have him back please? Nick 😀
Finders keepers.
Love Yorkshire, just got back from doing the Yorkshire Three Peaks
Your GP record is private, which is good and bad.
If I have bloods in renal clinic I can see results next day in patientsknowbest (was patientview). If I have GP bloods I am always told results in a week: they are available next day.
I think you should be able to get signed up for patientsknowbest, I don’t think it’s just for renal patients.
In Scotland we can’t get 3 monthly ANCA as the labs consider the interval to be too short despite consultants requesting it.
Interesting that you are on RTX, pred AND methotrexate. What’s the thinking there?
They upped my Methotrexate (10 on a Monday from 8 ) to taper steroids. Didn't work. They then did an RTX infusion ( just had one in June so far) to taper steroids, which is working. They didn't want to upset the applecart so to speak to much by reducing Methotrexate at the same time.
I think it the same everywhere. I told my GP that my hospital results were not coming through to the GP surgery. I could not view results on GP Patient Access.
I support LCFC🦊🏆⚽️, family from Leicester but I am now elsewhere.
Hopefully one day there might be a move to GP systems importing 'hospital done blood results'. I'm involved in a research project where I mentioned it. It would help GPs diagnose things too, eg following positive ANA or ANCA found by the hospital.
Things need better management, so crucial data are shared by all who are trying to help us and make decisions on our care. It is a basic requirement, as you say.
can you check if your hospital uses patients know best? I’m lucky I have a portal at my hospital which stores my results, letters and appointments. I have an app on my phone and can go via website. I’m get the blood results as soon as they are done so before consultant has seen them. I believe you have the right to request to see your GP records on the NHS app. I think you have to go through your surgery for this. It’s bonkers that you are unable to see your results when staff are pushed to the limit and may overlook something important. I’ve been told in the past ANCA testing isn’t available everywhere.
I had exactly the same response when i queried it. I used to get results as nurse at GP updated my records so i could self monitor. Sadly, she left the practice beggining of the year so i no longer see the rssults.
None of my bloods done at the hospital are visible on my records. Not even my GP can see them.
Access does seem to vary considerably. I talked to my surgery and the Health Boards about it - they have all the results both from hospital appointments and their own tests on the system, but they can't give patients access because they don't have the money or the staff time to set it up. The system software is there to be added but they just don't have the time/money.
So it varies from place/practice to practice.
Some practices are also worried about the number of queries, the misinterpretation of tests, and patient 'panic' when a result is a minor abnormality - this has been shown to be a small problem, but it does take up more time explaining (which they feel they don't have). I would like to see everyone have access to their own results - they are THEIR results after all, and patients with longterm illnesses rapidly beome as expert with their results as they become with managing their condition.
At my practice if you’ve signed the appropriate consent form, you can see all of your clinical letters and blood results from the local hospitals in the ICB area. This is because the practice has signed up to integrate with them.
My hospital care all takes place at a hospital outside of my local ICB area because I transferred my care to the hospital where my vasculitis consultant works, in another borough. They use a different computer system so the GP doesn’t get the results directly from them either, but we both get them on the bottom of my clinic letters, which I can see in the NHS or Patient app. Alternatively, I can email the clinic nurse address and ask for copies of my results.
I expect this varies a lot regionally, but this how it seems to work in London. (I used to live in east London and now live in west and it was the same in both cases).
(ICB areas are what replaced CCGs)
Weak Positive C-ANCA (A) ?
Awaiting Results for Vasculitis
Blood clots and urticarial vasculitis syndrome
