Tuesday, 3 March 2009

6 monthly blood test confusion...or is it just me ?

Ok, enough posts that are simply links to other websites or current news articles, this time I have a concern that i would like to discuss with you relating to my 6 monthly blood tests.

Going back to 2006 (no, i am not Dr Who !) when I was first diagnosed with CLL (Chronic Leukaemia), i was asked to attend Grantham hospital every 4 months so that i could have a blood test and then have a chat to my consultant about the results of said test.
Almost immediately I found that "my consultant" was never actually at the hospital when i had an appointment, and sadly when the lady left some 2 years later i had not had the chance to even meet her to say hello !.
The next issue is that after my tests (which i had done at Grantham hospital) were moved onto a 6 monthly footing (i was asked if i wanted to stop having them completely, but declined the offer....how i love needles !) i found that having the blood taken at a different venue (my GP's surgery or the hospital that i work at during the week) seemed to be something that caused a severe breakdown of the "system", when A) it took ages to get the results, and B) If i did not ask for the results, no one ever took the initiative and called with them. The most recent example of this was when, during a period of feeling "wiped out" just before Christmas, i visited my GP and was advised to go and get my (then due) blood test done.The surgery could not get the bloods taken there as they were busy until the 29th December, and as i was due to return to work at the hospital on the same day, i arranged to have the bloods taken at King's Mill (to save me having to miss half a day by having it done at the surgery). The sample was taken in the morning at around 9.30 am, and i remember asking if the results would be passed on to me via my GP to which the answer was in the affirmative.......yes ! :-).
This seemed like a logical answer as the surgery address was on the sample request form......but apparently this was not so !. I also asked if the surgery would contact me if there was a problem that needed to be addressed, and again the lady advised me that she would expect this to be the case, which again seemed to be the expected procedure.How wrong can you be ?

Fast forward to today, 3rd March 2009 and I am at the GP's again, this time due to a chest infection. Before leaving i enquire as to the results of the test on the 29th (i explained that i had assumed up until this point that"No news is good news", yet again...wrong!).

My GP then explains that they do not have any results on record. "Who did the tests ?" i was asked , "The hospital that i work in in Nottinghamshire" i replied. "Ah, well then we will have to request them to send us the results via fax then" she continues and promptly writes down the surgeries fax number for me to pass on to the hospital.
Quarter of an hour later i am on to phone to the hospital explaining the situation to one of the staff members of the Phlebotomy dept, but when i ask her to fax the results to my GP i am told that it is against hospital policy to fax results, and instead i will need to get the GP to phone them and speak to them in person to find out the results.
After the chat with the hospital i then call the surgery again and pass on this information to the receptionist asking if she can get the doctor to do this.

Now i work for the health service, and believe it to be an excellent service, but i can't help but feel that somewhere along the way things have got a little "over complicated", and that it appears that the process of communicating results to patients (i.e me !) seems to be lacking any sort of structure.

So, is it just me, or have other people had similar experiences in regard to finding out the results of their blood tests ?

By the way, all through my consultations with my "consultants" (about 3 different ones so far!), never have they really sat me down and explained what all of the markers that are highlighted in my test results mean....so i assume that it's going to be a case of "go away and we will see you in 6 more months" if everything is "behaving itself", or "We need to put you on medication" if its not. Having been on other leukaemia forums on the net, it strikes me that many sufferers (most notably in the US) appear to have a much greater understanding of their illness, because someone has bothered to explain it to them in great detail.......then again it appears that as is common with a lot of hospital patients in the UK...they are the one of the last people to know anything.......but good for sorting out result requests !


Pat said...

Oh what trouble we have.......I have been waiting for 3 months for an ophthamologist to send my full records on to the new guy....... another thing I've learned is that there is a LOT to learn about CLL. In fact, I think it more the norm that patients are educating their physicians because not all of us have access to world class docs......

Anonymous said...

As a fellow CLLer, and somebody who commented on the second ever post on your blog (I think it was the second anyway) I have never had this problem.

I get my bloods taken at the local surgery, and the results are faxed to my consultant at the hospital. A copy of the results are ready for me to collect in a plain brown envelope within a week, and I always take them with me to see Dr Strangelove. He tells me that the results I bring are always more prompt than the faxed ones, which do arrive eventually.

I find that this way I'm sure to get the latest situation to my consultant, and my GP. Perhaps you could get your tests done locally to prevent this difficulty coming up, though if you have them done where you work, it shouldn't be too difficult to get a copy for yourself.

I used to live in Rabat, Morocco, and I was very sad when you stopped at the ferry to Tangiers. Morocco is a wonderful place.

Andy said...

Hi Chemobrain.

What you have told me is very interesting, and i will be making enquiries into the possibility of arranging something along those lines for my own tests, so many thanks for the suggestion :-).
Regarding the crossing to Morocco.Myself and Glen worked on a VERY tight budget for this event, and to be honest had we payed the £400 asking price for the trip over to Morocco, we would not have had enough cash left over to buy fuel for the trip home !.People have asked why we did not arrange the ferry in advance.The answer to that is that had we done so, we would have had to pay the full cost in advance, and had we broken down en-route, this would not be refunded...catch 22 really.We had emailed a company twice with details about our challenge,asking if they could offer any discount, but we never got a response to either message :-(.
We were both gutted at having to stop at Gibraltar, but unless you are celeb's who have a large expenses package, you have to be realistic and objective about what your heart wants...but your wallet can't provide :-).Take care my friend :-)