Having been misinformed recently (and in the past) about my blood results I am trying to get copies. Scan results I have to request through medical records, they can charge a fee of £10 but haven’t so far. They cannot “release” my blood results as they were taken at the GP surgery so counts as a GP request. My Oncologist’s secretary is not allowed to give me the results, ditto Oncology nurses. So, I am denied access to information about ME and am in a right tizz.
I am a nurse and understand blood results. I understand that sometimes things are out of the normal range and are insignificant.I spent much of my career checking and discussing blood results with my patients, printing off a copy if they requested it. My Oncologist won’t do this, the HCA who works with him is not allowed to write down any results. But I want to know figures not “up a bit, down a bit, ok etc”. I especially think is is inappropriate for a Health Care Assistant to be informing me and handing over my chemo prescription on my visits when I don’t see the Oncologist. No proper check up, no how are you, no writing down of important info like white cell count.
What happens with others I’d be interested to know, how do you get copies of your results? Sometimes I phone the BCN and she will send them to me but really this is “not allowed” data protection and all that. I just want some control over my body. Grrr, rant over.
why won’t this post???
This might not help… but I believe there is the Freedom of Information Act (if you are UK based) which covers medical departments too. If the information is about you and held by a Government body, you have a right to receive copies of it. But, I accept that might put some backs up if you start quoting it.
When my surgery does blood tests, the receptionist seldom tells me actual results - more often, ‘all was clear’ is the kind of answer I get… and I have to ask for more information. Maybe a letter to your doctor requesting you be included in full result information would settle things?
I did use the Freedom of Information Act once when an optician refused to give me certain pupil measurements as he said I could use it to buy cheaper glasses elsewhere! I quoted the act and my rights, and he suddenly supplied the information I requested.
At the hospital where the breast clinic was held, I signed a form and ticked the box to receive copies of all the letters from the Breast Clinic registrar to my Dr.
I have not received one copy. When I questioned this, excuses were made - maybe they haven’t gone out yet!!! (They were faxed to my Dr the morning following my tests, so of course they have gone out.)
I made sure my Oncology consultant was clear that I wanted to receive copies of the letters, and so far, they have been happy to copy me in.
Good luck at getting the information you wish to receive without having to fight for it.
June22
Happyfeet, Have you treid making an appointment with your GP and asking him face to face about your blood test results. I do that with my GP and he is happy to give me answers to my questions such as What is my Hb? or Are my Tumour markers up or down since we last did them 3 months ago? He has always given me the answers. You could ask for a printout if he has his computer in front of him. I have never been refused the results and it he says for example “your bloods are fine” he is happy to enlarge his answer when I specificallly ask about my potassium or whatever. Hope you get the answers you want from him/her. I cannot imagine what the secrecy is. They are your blood test results after all. Val
Please let us know how it goes.
Thanks June and Val. The thing is, I’m having blood tests every 3 weeks the day before my Oncology appt so don’t want to spend more appts at the GP. My Oncologist just won’t print off my results, he just won’t and says “not to worry” about them!!! When I had iV chemo in 2009, the Oncology nurses would fill in my results in my book and chat about any side effects etc. Now having Capecitabine so don’t see a trained nurse, HCA assists Oncologist and are not trained to interpret or write anything down. The BCNs, Mac Nurse and Oncology nurses all want a trained nurse working with the Oncologist to see patients such as myself but get quoted the old funding issues. Blood tests taken at the GP surgery are deemed to be the property of the GP, despite being requested by the Oncologist, so Medical Records won’t release them. Secretaries and nurses are “not allowed” to print off results to give to me, they have kindly done so in the past, but then it gives them more to do and not in their remit anyway and it is “not allowed” anyway. Whose damn body is this??
I have made an official complaint about being given wrong results and being dispensed my next lot of chemo last week. Another blood test on Wednesday to see if white count has come up so I can restart. I just don’t trust my Oncologist so what am I to do? Had second opinion at The Marsden but would mean a 4 hour journey by car then train and tube. Not up to it really.
Like others on here, coping is easier at some times than others. We maybe forget that we are all in the same leaky boat and support is given so generously by those who have been dealing with it for much longer. It is that which gives me hope and courage to face whatever comes next but scares me too when others have a set-back. I sometimes feel selfish for “lurking” too much and not contributing as others do, but have had my fingers burned on this site albeit some time ago now, when messages were written about me (on facebook)for being a “moanarse”. Nice. At that time (2009) I was going through chemo for BC and my young son was going through chemo for Non-Hodgekins lymphoma. It was a tough time and support came (and was reciprocated I hope) by cyber-buddies, some of whom turned out to have a nasty streak. It affected me deeply so am very wary of these sites.
I am not a “moanarse” any more than others on here, it is good to have a place to let it all out without being judged and I thank you all for everything you share. It’s a tough journey at times. Love to all x
Hi happyfeet
I used to phone the chemo unit and ask to speak to one of the doctors there. They usually phoned me back within a couple of hours and I then asked them to tell me my results over the phone. The nurses aren’t supposed to do this but sometimes they phoned back and did it anyway. If that didn’t work then I phoned my BCN and asked her to look my results up and read them out to me. I am having iv chemo at the moment and I can usually get someone to print them off for me now -i think that might be because I was being such a pain phoning for them every few weeks.
You might be able to get a print out if you go to the day chemo unit when you are collecting your capecitabine and ask them to print them off for you - one of the duty doctors will probably have to authorize it but I guess if you stand your ground and know your rights then you should be able to get them, it might be worth while asking your gp for a letter giving permission to release them to you if they start being funny about you having your bloods done at the surgery instead of at the hospital.
I have no idea why they are so awkward about giving out blood test results. I had to be really persistent, now they know me as the ‘one who always wants the printout’
Hugs
Tillycat x
Ps so sorry you have had a bad experience after posting on here, but glad to hear it was on Facebook, the mods would never let anyone say personal or mean things on this forum, that why we love them!
happy feet i used to phone the surgery and ask what my results were… i have a good relationship with my GP and the practice nurses and they all know i am a nurse too and are very accomodating. when i wanted my path reports my onc sent one of the nurses off to photocopy them all.
what he said was its very easy to give results as they are balck and white… if you HB 10.5 then its 10.5… what he said he couldnt do was give letters and clinic notes which may have been compiled by different docs… so may have opions such as things like this pleasant overwight woman… or referring to say psychological services… the patients is not coping etc etc.
hope that kinda makes sens… if your having problems why not contact PALS too and see if they can advise you… and also your BCN might be able to help too.
take care
Just to say that at my hospital Freeman in Newcastle cancer patients are given a book to keep in which nursing staff record all your blood tests each time you have treatment, in my case every 3 weeks. Therefore I am able to assess my own situation. I also ask for my bilirubin results and if I’ve had tumour markers done, they include that too…l.l I can’t understand why some doctors and hospitals can make life so difficult…
Best wishes, Jane
Liver and bone mets, on Capcitabine 23 sessions so far, doing all those things a 60 yr old shouldn’t be doing lol and giving my lovely onc the occasional heart attack!!
Dear All
I also have problems getting copies of both blood and scan results. I used to print these off myself but having retired from my job as a nurse I am unable to do so. My GP is lovely and has attached a note to my file for reception staff to print off bloods however they are not allowed to do so until they are reviewed by one of the GP’s. The GPs did not request the bloods and would not take any action as the results are required by my oncologist prior to my chemotherapy. I have no breast care nurse or specialist nurse of any description and feel that I have the ability to interpret both blood and scan reports and then feel that I have some control over treatment options. I feel that these results should be readily available to all patients should they require them. I experienced medical negligence in my diagnosis of primary breast cancer and in view of this I feel it is essential to have my blood and scan results for reassurance.
Hi Agraham, I have not been given any results of blood tests or been reasured that every is okay,I have had to assume its okay because the pills are prescribed again.I am 70 and live alone,there is a nurse at oncology,but there is little time to talk,as another patient is waiting the moment you leave the consultants room,I sometimes feel very alone in this crazy world.
Hi ozzie,
I agree, it can be a lonely thing going through this. Thank goodness for this forum and the advice available from their nurses. Do speak to them if you have concerns, I am sure they would give you the time that your oncology nurse seems unable to give.
I don’t get told my results either, until my white blood cell count was a bit off and I had to go back for another test before chemo could go ahead - then they told me my neutrophil count.I am sure if there was something wrong, they would discuss it with me, but otherwise I trust all is within limits and being monitored.
They take my bloods just before I see my consultant to discuss how I am getting on with each treatment, so I don’t think he has the results of the latest test when I see him… but he can see the last results if I ask him about them. Thankfully, I like my consultant, and feel he does listen and does explain things to me well. I know some others on the forum aren’t having such a good experience with their consultants.
The bloods taken when I see my consultant are what gives the go ahead/or request for another test, for my chemo session 3 days later.
The nurses when I have my chemo are very helpful and answer my questions if they can. One sits with me throughout the whole 2hr infusion.
I haven’t had contact with my BCN since moving on for the chemo, and whenever I phoned her for advice I was usually told to go see my GP… who in turn often used to say I should ask the specialist Breast Care Nurse who would know more about the treatments!
Keep connecting with people on this forum, and they can share their experiences and help support you. It doesn’t seem such a lonely journey then 
June22