[graham-cParticipant]

There are only four figures that interest me but giving me the print out is probably easier than isolating those individual results.

The minute I am forced to submit an ‘SAR’ it’s a whole new ‘ball game’, so to speak, and they are legally obliged to provide exactly what I ask for within a set time limit. It is therefore best they do it the easy way in the first place, especially as the results will be to hand.

I will also submit a complaint to the Information Commissioner as they are ‘custodians’ of the Act under which I make the Subject Access Request.

As I’m ‘flying’ on one kidney, my eGFR is relevant and that’s what I’m missing. If it’s ‘okay’ that may be deteriorating too and my GP and I should know.

[graham-cParticipant]

It’s a very strange situation in Leicester but I’m not going to back down in wanting to know the results of medical tests because it is my legal right to know them. In fact every NHS hospital has a published policy on the matter.

I have blood tests three times a year and an appointment once a year, so that unless I use the formal process of a Subject Access Request I am in the dark for a year. This process is open to anyone and the right is enshrined in law for payment of a small fee. Unless I do this the best I can expect to be told is ‘okay’ which isn’t very helpful or informative.

Unfortunately I have significant physical symptoms and I have no way of knowing whether or not they are related to this condition. I know that there are a lot of people in a worse situation than me and I’m happy to avoid unnecessary treatment that could worsen my symptoms. Having previously had kidney cancer then FLC levels and my eGFR are always going to be of interest to me.

Having raised the matter on ‘Patient Opinion’ I have now received a letter from the hospital stating “I will need to clarify what type of result this as part of the process to deal with your application. ” which isn’t entirely intelligible but my application couldn’t have been more specific. Previous eGFR figures have been fine, though bad results aren’t grounds for withholding them.

The convoluted detail of this matter is probably of little interest other than to demonstrate that, as a patient, you are entitled to access to your medical records and the results of any tests. It’s not sensible to be difficult or obstructive but, in a worsening condition, wanting to know the value of ‘marker’ results isn’t unreasonable.

[CarolsymonsParticipant]

Graham you are so right. I carefully monitor all of my blood test results and become really annoyed when obstacles are put in my way. These are my results, my cancer and I want to know. I had an accidental win last Wednesday. I was unaware that Hammrsmith was monitoring my iga, paraprotein and free light chains since transplant, so had not asked (and of course was not told) these results. Actually I had been told previously that all would be checked at day 100, along with a biopsy and basically told to wait till then. But….on Wednesday they mucked up my appointment, then couldn’t locate my file, so the consultant accessed my information on the computer. He then casually mentioned that my paraprotein was undetectable on a blood test 2 weeks previously, so of course I questioned him to find out that they have been doing these tests since transplant! (22 January). So that is how I accidentally discovered that after 11 months, I finally have a normal free light chain ratio (courtesy of the lethal melphalan) He did print out the results when I requested them though. So my problem in this case, is not even knowing (or being misinformed) about what the hell they are doing with all this blood they suck from me! Frustrated much!

Carol

[eveParticipant]

Hi

Well I can only think it must vary around the country.

Never had any problems getting any results bloods or diagnostic test,if fact on the odd occasion like this morning doctors have asked me can they photostat results they have not had!!!!.
I do carry a large red file,up to date and in order,so if Slim has an emergency admission,or like today local hospital did not have a copy of MRI report!!!
It’s peace of mind for the patient,plus knowing the doctor you are dealing with is fully informed.
I do think there must be a breakdown in communications!!! Mistakes do happen,we had a slight mix up last week,so communication is so important without blame for a good relationship.Eve

[graham-cParticipant]

It’s great to hear that you’ve got good news to report after treatment and in some ways, discovering good news by accident is a nice bonus, though I agree that it would be preferable that you know what’s going on. I know the sensation of feeling that there is something existing within your body with the potential to kill you that you should know what it is and what it’s doing. You own it as much as you wish you didn’t.

I’ll get what I want, though it’s bizarre that it’s proving so difficult. For a hospital to claim not to understand what eGFR is, is very silly. If they don’t understand eGFR, stating it in full won’t make it clearer.

In simple terms it’s the figure appearing next to the letters eGFR on my blood results.

I had presumed that it was okay, but now I’m beginning to wonder.

• This reply was modified 10 years, 1 month ago by  graham-c.

[jeff605Participant]

Hallo Graham, just had a thought, when I spent some three years smouldering, the consultants at the LRI quite happily swung the screen around for me to copy the results, or read them out to me. Since I started treatment I think this openness has changed. This might be my imagination,so at my next meeting ( about three weeks ) I shall ask to see the results and let you know what happens. I shall also do some work on finding out just what the figures mean as I admit to being a bit vague about about some of them. Jeff

• This reply was modified 10 years, 1 month ago by  jeff605.

[jmsmythParticipant]

Hi Jeff

Myeloma UK supply a diary (free) which gives lots of segments. Eg blood results. Theses are pre printed for you to fill in and at start of section gives you the normal range. You can see at a glance what the bloods are doing. There are different sections – questions to asker, appointment etc. I have been using these diaries for nearly 8 years and would be lost without it. (Frank smouldered for 7 years and diary was invaluable to watch what was happening

Jean

[jeff605Participant]

Hallo Jean, many thanks for the information about the diary, I have emailed Myeloma U.K.concerning obtaining a diary, sounds like just what I need. Thanks again, Jeff

[graham-cParticipant]

I think that for general purposes four figures give a decent overall picture – Paraprotein Level – Free Light Chain Level – Kappa/Lambda Ratio and eGFR. Of course the type of Paraprotein and Free Light Chain is relevant but I presume that the hospital can work that out for themselves. It’s not difficult.

If you have other health issues or after you have begun treatment then other levels may come in to play but I haven’t reached that stage.

The thing is that I have every confidence that my eGFR will be satisfactory, but that only raises the question of what will be disclosed if, at some future date, it isn’t satisfactory. The only outcome of withholding results is a loss of confidence in the hospital. Having lost a kidney to cancer and with raised FLC’s, eGFR is potentially the most relevant indicator of disease progression.

[graham-cParticipant]

In response to my comment on Patient Opinion I received an offer from the Haematology Department to investigate, and I used the email address provided in the response to make contact. I have heard nothing.

The only concern I have about my eGFR is that the hospital refuse to disclose what it is. Though Myeloma is a complex illness I use four figures to monitor its progress and, having raised FLC’s and the kidneys often being victim, it’s handy to know how they’re functioning. I cannot ascribe a motive for withholding that result as doing so contravenes NHS policy and their legal obligations.

I intend to issue a final warning this weekend and I will take advice on serving the hospital with court papers in early April.

[graham-cParticipant]

I did finally get the blood test results. i can only say that my attempts to uncover anything about my illness has been met with a complete shambles, indeed if I didn’t get my results, I would’t even know that I had the illness as all I’ve ever been told is I’m ‘okay’. Based purely on that I’d be expecting to be discharged, and the Consultant wrote to my GP saying that my results were ‘stable’, when in actual fact my FLC’s had risen by 20%.

The hospital should realise that refusing to disclose results merely fires a person’s curiosity.

Unfortunately I do have some quite severe symptoms that may or may not be related to the illness, but no one knows or has investigated and  I need test results to attempt to make sense of it all. I’m not banging on their door demanding treatment as I don’t know whether or not it would adversely affect my symptoms, but no one does.

[jeff605Participant]

Hallo All. Just had my meeting with one of the consultants at Leicester Royal Infirmary.Quite an important one as it was to decide where we go from a rising paraprotien ( 9 to 25 in 10 weeks). This time, once I showed an interest in my readings the consultant was quite happy to write them down for me and answer questions quite freely. Nice change, whether it was due to it being a Trial clinic with less pressure I don’t know. Jeff

[stanley-1960Participant]

Graham,

I am newly diagnosed and prior to my first official induction therapy session i made it very clear that i would require all my results for self evaluation and progress monitoring. I read and prepared prior to the consultation and the exact words of the consultant was you seem very well prepared. As promised i received a full set of results via print off only awaiting IFE and SPE from the lab. I am due to return for a follow up and will press for fish array as a matter of importance(don’t even know if its been carried out) but i will press in the strongest terms. I am sorry your have had such a torrid time getting what should be yours by right. I also find it incredulous that GFR which is fundamental to the disease was denied.

Best regards,

Stanley

[rebeccaRParticipant]

Hi Stanley, I believe it is essential to understand results/mm etc as we are mnoreoften than not in positions of little control. In the US – I use the myeloma beacon site a lot for info – patients seem so clued up about everything which I believe is because they choose their centre of treatment, consultant, their approach to treatment and treatment itself via their insurance package. In the Uk we don’t really have this luxury and unless on trials our route is pretty much standardised and laid down. When I was first diagnosed it took me a long time to gain answers as I only asked questions when I felt prepared mentally/strong enough to deal with the answers. In particular, I now have mixed views on knowing an individuals cytogenics – unless its bog standard MM – I say this because MM is very much a mind game and its crushing to know poor cytogenics with no way of influencing it or being treated differently for it. As I was an extremely fit and healthy 50 yr old pre diagnosis (them were the days!) I was convinced I had the most aggressive form etc it took me about 4 months to ask about my cytogenics (they are usually done on your 1st BMB) and I was told no, I was standard. The relief, joy, positivity I got from this lifted me throughout my treatment – a big Hope. I was already battling just above dialysis kidneys and had I been told otherwise I’m not sure how my outlook may have changed but I know it would have been a huge negative. Anyway, kidneys got enough for 2 transplant centres to debate SCT and Leeds took me. At one of my consults the Dr was away so the nurse decided to read the Leeds acceptance letter out to me and the reasoning to SCT me was poor cytogenics! Obviously the nurse could no elaborate further etc so I went home with all the old demons creeping back but then I decided it didn’t matter what my cytogenics were as I couldn’t do anything about it them but worry and that was pointless so I decided to remember we are all individuals and there have been cases of people with aggressive MM that have bucked the trend etc. I had other opportunities to ask my Dr after this but chose not to as the specifics didn’t matter to me. My consultant is a lovely, gentle, compassionate man and I figured he’s been around cancer long enough to know what is helpful or not. When I went to Leeds they went through it all with me and I am not all “high risk” as the jury is out on my translocation tho’ it is one that is associated with kidney damage which ultimately affects prognosis. Anyway, sorry to rattle on about this but sometimes I think you have to think carefully how the results will affect you. I believe the longer you are down this road the less you will get hung up on numbers but go by how well you feel and your quality of life as a marker of the disease. MM can so easily mess unnecessarily with the head sometimes its often better not to give it further ammunition. Obviously I wouldn’t think this if I felt how the MM was approached was influenced by individual factors. Guess all I’m saying is be careful what you ask for and know what you are going to do with the info you want/ how it may impact on you.

[eveParticipant]

Hi

I would agree with Rebecca,I think it is very important to know at least the basics in terms of bloods and results of test,so this has been my job as a carer,but saying that I do not always tell Slim the whole facts unless he ask me.

As time goes on other factors come in to play,that may effect your body,in Slims case it was a blocked artery and although successfully treated,it has added to his problems,so some times it’s best not to be too honest with replies and try to look on the positive side of test!! What is not showing on scans!!!! Can be more positive to a patient,for example not having a bleed !
So I can understand a consultant not being as factual as time goes on,or as the Myeloma causes extra problems to the patient,but they do forget that some times a carer does know what is good or bad information.

To give the doctors some praise it must be hard for them to decide how much information should be passed on,by law I suppose they have to deal with a patient,and what is in there best interest,but at Slims stage it is more important that I know and can check things are being attended too,as no matter how good,mistakes are made,and being the carer can save a patients life.

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