Cancer communication

Hi Coussant,

You aren't being paranoid - they really are out to get you . It's a patient confidentiality thing, and sometimes the patient is the last to know anything. But there are a few things you can do about it.

Your hospital should be keeping your GP in the loop on your treatment. That's an NHS thing so it should be already happening. Tell the hospital and your GP surgery that you need to be copied in on the letters.

If you get signed up to Patients Know Best at my.patientsknowbest.com/ you'll see the communications between hospital and GP that currently bypass you. Blood tests, scans, the lot. Medical techno-babble I call it. Scans can take 4 weeks before the report is available but there will be an entry saying when it's due to appear.

Also get a login to My DrDoctor at my.drdoctor.co.uk/login where there will be appointment details and letters, mostly already sent to you so not much new there but every little helps.

That's about it. Sign up to those and you'll know everything.

kind regards
Steve

Hi, they are good links, but I have a file at home with copies of all my investigations and clinic/GP letters, plus all biopsies, CT and PET scans etc. 

I requested all these at no cost from the hospital, all free. I can now see on my laptop what the Clinicians see on their computers in clinic, i.e. CT/PET scan images etc., several of the images from my lung biopsy even shows the biopsy needle going through the chest wall into the lung and taking the tissue sample, also I have copies of the radiology reports from said procedures, which are very informative. I appreciate not many people would like to see these things, but from day one of my diagnosis I have wanted to know every detail from initial diagnosis to investigations and following treatment.

All hospital websites have a link for "Access to Health Records", where there is an online request form to fill in, and everything is done via secure encrypted email with the link to patient records. As I said, this is all free. I had breast cancer 34 year's ago and have a file at home of all of the above that I have for lung cancer, although in those days there was a cost involved.

Best wishes, Ann

Thank you Ann. I’ve been bugging the lung cancer nurses waiting for last weeks CT scan . So I can register and see that myself ? I have the NHS app but it dies not have that level of detail? 
im the same I want to know everything . The default is say nothing unless asked ? 
I’ll check out the hospital website now . Thank you 

Hi Ann,

Aha! You've found out how to take things to another level - many thanks. I went onto my hospital's website, searched for "Access to Health Records" and sure enough there was a list of links.

First one was "My records" - turned out to be the "Patients Know Best" site. After that it was forms to download and fill in, none of which I've come across before. Yay!

Thanks again,
Steve