[graham-cParticipant]

I think I’m correct in saying that I have it in writing that the hospital won’t inform me of results and, worse still, that was after I had submitted an SAR.

Once when I asked for a copy of my blood results I received a handwritten note with two figures on it ! Now I apply for blood results by SAR and specify exactly the four I want to know, leaving no wriggle room.

If they make me submit SAR’s then their obligation to notify me is a statutory legal obligation. To attempt to avoid escalation I have pointed out the missing result but I’m not sure that they understand.

[graham-cParticipant]

Paying £10 doesn’t bother me and, if it avoids a confrontation with a Doctor/Consultant, I’d prefer to do that. The benefit in doing it is that it activates a formal legal process. What alarms me is that the hospital don’t appear to recognise this and the ramifications if they don’t then comply.

I supplied a 24 hour urine collection last May, and I have the appointment card to evidence it, and now they deny it ever took place. I had some very bad experiences with the hospital when I had kidney cancer and my confidence is badly shaken when I see things going wrong already.

[graham-cParticipant]

That’s interesting to know Jill and does confuse my understanding of the illness, but we are all on separate paths determined by our own particular symptoms, reactions, health and results. I believe that FLC levels can also be raised by illnesses other than Myeloma and, having already received treatment, it may also be a factor in determining what course of action is taken.

As I’m sure you’re aware that level is awfully high and would set my anxiety levels rocketing but I’m a newcomer to this condition.

[graham-cParticipant]

I too have had the problem of getting blood test results out of LRI. I now make Subject Access Requests, which are quite simple to perform, and the hospital has to provide the results as my legal right. It’s a shame that I have to do this but it’s inevitable.

I’ve made a Subject Access Request in respect of my January tests and, though I should get them by mid-March, I expect that they won’t comply, in which case they’re breaking the law and I can leave their regulatory bodies to wring the information out of them. It’s much easier if they provide results in the first instance but they’re slow learners.

I’ll let you know how I progress.

• This reply was modified 10 years, 2 months ago by  graham-c.

[graham-cParticipant]

Welcome kendraw.

I can understand what you feel, though I have a more difficult time as my Haematology Department are always very reluctant to give me the results of my blood tests. I don’t understand why and it’s rather silly because it causes me to make formal legal demand on them. Let’s not discuss this.

My analogy is that abnormal blood results of the MM variety are like knowing that a visitor has been inside your house and the medical team investigate to see what the visitor has been doing there. Unless the results are extreme it is a mistake, and unnecessary, to begin any course of treatment until its known where the disease might be heading.

My results are similar to yours but how everyone is treated is different because any other health issues you have may be relevant and require earlier intervention. I can’t explain quite how I’m treated and I have an appointment with Neurology next week, though I’m not quite sure why. The foot that interested them works and doesn’t cause me pain, but he thought I should have the hernia treated that the hospital had failed to diagnose seven years ago.

I have four monthly blood tests. I believe that a FLC level above 100 is considered significant as, like some other measurements like eGFR, it is not specifically accurate, which is why they always track readings to measure the progress of the illness. Mine was 160 and lambda like yours. When it is combined with an out of range kappa/lambda ration then it is considered to be abnormal and also the result of a clonality. This is useful as FLC’s can be raised in other conditions.

I always get my FLC lambda level, kappa/lambda ratio, my eGFR and paraprotein level as I do have an M spike too. I have already lost a kidney to cancer and so I’m protective of my remaining one but my eGFR is 60 which is quite good. That is a measure of kidney efficiency.

I’m not alarmed by my readings but with a medically defined abnormal blood condition I was irritated when the Haematology Department claimed that my latest results were ‘okay’ when they were actually worse. The result of that is that I don’t trust their opinion.

I must say ‘rebeccaR’ that an FLC level of 1,000 and eGFR of 5 would scare me because FLC’s of that level will have a depressive effect on kidney efficiency.

I understand the frustration of being told you have MGUS with no clear understanding of what that means. My concern was that the next stage would be to be discharged with no explanation, which has been a common experience of mine (the hernia being an example). Now that I have established that I have a blood abnormality (by medical definition – FLC in excess of 100 and an abnormal kappa/lambda ratio) with worsening results, I can await the illness to show its hand.

You should have no problem getting your results and indeed you are entitled to know them. I have to do it the difficult way which is also awkward for the hospital, having to look up and post me results retrospectively that is how I uniquely have to do it.

In a sense it’s fortunate to detect the disease early and having been left with a hernia for seven years it’s only because the hospital was seeking to find the source of my symptoms, which they knew about all along, that my abnormal results came to light. It’s now a waiting game.

I provided a 24 hour sample for a urine electrophoresis but they lost it (honestly) and I haven’t had any tests for amyloidosis.

My next blood test is in May.

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