Can't get access to my ca125 blood results

Hi there. I'm a 46 year old with a history of endometriosis, infertility and fibroids. Had a routine blood screening end of July and ca125 came back elevated, so was referred for an ultrasound which seemed normal but Iwith signs if ovarian cysts. 've been asked to attend a 3 month recall. My GP referred me to gynaecologist, saw them 16th Aug and had ca125 repeated.  It's now been 3 weeks and although my blood results are back and on the system,  I've been told by mu GP that they can't share them with me and I don't have access to them via the NHS portal (nothing showing)- they wont give a reason for not telling me. The gynaecologist who ordered the test is on annual leave until end of this month (Sept). I've rang the secretary repeatedly to ask that they share the results with me and have been told not possible.  Has anyone experienced similar with trying to get access to their blood results? If so, is there anything I can do to find out? I feel so frustrated! It's my health data and no-one will share the results with me.

  • Hi Yew, your not the only one. I was speaking to one of the gp nurses I see to have my bloods taken for Afp, LDH and HCG as part of my remission screening frim testicular cancer 3yrs ago. I haven't been able to see my results from them, yet my u&e I had done separate before a recent CT scan I could see the results. I was told by the nurse because when I phoned to book my appointment they hadn't heard anything from the oncologist that she put the request through the gp system. This meant that I had the results of my lastest bloods taken. I'm glad I was so quick as I got told the previous CT scan was possibly showing a problem so seeing the results of the bloods has put me at ease before my next scan in 3weeks time although the LDH was high it was still within the acceptable limits. If the hospital has requested them the results don't appear on the app as it's designed for gp information. It doesn't even state I had cancer 3 years ago. 

    In regards to your question you can try speaking with your gp surgery. You have the right to request full access to your health records as the app initially gives only the gp side you have to asked for your "coded records" alternatively there should be a contact within your NHS hospital trust who can give you access to your health records. It might not be a instant response however. It's frustrating, especially with something as difficult to deal with and it certainly doesn't help the worry.

  • Hi Jezzer1189 thanks for taking the time to reply to me - I really appreciate it. I'll ask my GP for access to my coded record and see if that helps, but I already have access to my health record via the NHS app and all the historical info, so I think I may already have that in place. I hope your latest scan comes back positive, all the best. I contacted my GP already, who (after I was persistent admitted they have the result, but they flatly refused to share it with me as 'we didn't order the test'. I really don't understand the rationale or logic behind this. I just want to know the number I'm told the only way I'll get the result is when the consultant returns from annal leave and has chance to pick the work up. I've even asked if another consultant can report them is his absence and have been told 'they don't work like that'. I've now made a request to access to health data via an online form, which I'm pretty sure is going to be ignored as it asks for proof of ID but gives nowacility to attach it nor any direct email address to send it. Ve spent hours on the phone trying to get somewhere and feel I'm running out of time and energy already although I've barely started