post V&O

[Farleytiff]

I finished treatment in September 2024.

I could only take 100g of venetoclax because of my neutropenia.

The only follow up I am receiving is 3 monthly blood tests plus consultation. My first consultation in December was telephone consultation lasting 4 minutes saying my blood results were fine.

My next consultation is face to face when I hope to get a copy of my blood results.

My main problems post treatment were pain in my legs now gone and a persistent cough and cold lasting about 10 weeks with a comment from my GP about leukaemia treatment can leave scaring on the lungs? I am awaiting the results of my chest x ray.

So no CT or biopsy.

Not sure whether I should be chasing up for more tests but the consultant seems very relaxed about the results.

[Dawson21]

You should have access to your detail blood tests on the NHS app. I get mine within 60-90 minutes of a test (at the hospital). It's important to see both the results and the trend over time (you can see this too as a set of charts)

[SevernBeach in reply to Dawson21]

How do you get access to blood tests on NHS app? I always ask for details but can’t see results on the app.

[jillybird13 in reply to SevernBeach]

My hospital doesn’t put the results of any tests onto the NHS app stating it hasn’t the staff to update the system to allow this . However , I phone my doctor and the office staff download it from the hospital system and email it to me . I realise I am very lucky to have such a good doctors as a lot would refuse to do it .

Might be worth a try .

Oo

[Farleytiff in reply to jillybird13]

Thanks

[Skyshark in reply to SevernBeach]

Some you do, some you don't.

A few of mine have turned up on the NHS app. As they don't have the full record it seems the doctor's staff have transcribed them from consultants letters. I've got 2 out of 4 sets of results for 2024, the 2nd set doesn't have ALC. There are 3 out of around 50 for 2023.

Nothing on Patients Know Best either.

Doctors at hospital seem to be unable to print the results off, everything has to be copied to a sheet I prepared.

As for blood test results in 60-90 minutes, that's just a dream. During TLS ramp-up the blood test request sheets were marked URGENT! Most took 2 hours, one the blood was taken an hour late 3pm took 2 and a half hours, then as it was after 5pm they spent half an hour frantically trying to find a doctor that could approve me going home, locked the doors as I left. Tablets taken at 7am so I was well outside the 6-8 hour windows for TLS testing. The Combined Triage Assessment Unit (CTAU) next door apparently had a dedicated blood test facility that could run tests in 45 minutes and I would have been sent there if TLS had been detected, also the place that receives patients with neutropenia/sepsis.

[Dawson21 in reply to Dawson21]

Tests at my surgery don't come through for a week or more. If I go direct to the haematology unit at the hospital (having made an online appointment and with the hospital blood test form to hand) then the tests are automatically added to my record and never take more than 90 minutes - no human intervention. Maybe we have state of the art analysis machine here in Chichester! Here's how I see my entire history of tests: Log into the NHS APP - click on Your Health - then select Test results and Imaging - then on Hospital Ordered Test Results - Service then provided by Patients Know Best - Continue - then select Test results Latest or Trend and there they all are. Out of interest I just clicked on GP Ordered Test results and up came a screen with years listed - selected 2024 and additional results from surgery tests appeared. Sorry to hear that some of you can't see this as it's really useful and interesting (!). Sounds as if different Health Authorities have invested more or less in this information area.

[Farleytiff in reply to Dawson21]

I can only see my GP notes. My wife cannot see her results on the NHS app.

My results have only become available recently. Helps with the travel insurance form though.