[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, 8 months ago by  graham-c.

[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.

[graham-cParticipant]

Like you ‘relative’ I am aware of a GFR of 20 being a point at which dialysis becomes a potential outcome and though I use these snippets of information as a guide to when I must ask questions (being a FLC sufferer too) they aren’t necessarily fixed determinants of treatment because of the complexities of Myeloma, its treatment and health priorities.

The important fact is that your relative is in hospital and can be monitored and treated in a different manner. I suspect, but cannot know, that his doctors are trying to give his kidneys the chance to recover on their own. Balancing treatment priorities and what’s in the patients best interests are a matter of judgement and experience and it would be best f you raise any concerns with the medical team looking after him. I suspect that some courses of treatment may be a matter of judgement and you could raise your concern by asking ‘What are the drawbacks to starting dialysis now ?’

I do suspect that there is a good reason for their current course of action and I wouldn’t consider moving him before you’ve asked. Myeloma is a serious illness and it’s easy to leap to conclusions even for people like myself at an early stage of the illness.

I have no expertise or knowledge and know only what I’ve read, much of which isn’t always helpful.

[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]

I regret to say that PALS and the whole LRI complaints procedure is farcical. In simple terms at expiry of the statutory period to provide the information I have requested by SAR – they are breaking the law. PALS don’t understand this and they believe they can grant themselves extensions of time. They can’t. It’s easiest if I demonstrate the consequences of non-compliance.

Aside from the fact that UHL are effectively making me pay to see my results, even then, when they are legally obligated to provide them, they aren’t doing so.

Ultimately I will take the matter to my MP and the CQC which is utterly daft but my patience is exhausted.

My complaint to NHS England is just the first step.

Legally I don’t have to have a reason to apply to view my records. Obviously I have a very good reason, but when I issue an SAR the matter becomes a formal legal process. LRI appear not to have a very good understanding of this. If they tell me that my results are ‘okay’ when they’re deteriorating, what do they expect ?

• This reply was modified 10 years, 9 months ago by  graham-c.

[graham-cParticipant]

The point is that if I can’t trust them to give me the results of my tests, what can I trust them to do ?

I have discovered that their whimsical reports of ‘okay’ cannot be relied upon to have any connection with reality. Last time I was told everything was okay, my results were significantly worse.

I believe that I have it in writing that University Hospitals Leicester go against DoH and NHS policy in withholding  results and I’ll look up the letter as it did astonish me that an NHS hospital can do ‘its own thing’.

The point is that once I am forced to make Subject Access Requests to uncover my results it is a legal obligation for the hospital to disclose them, but even then UHL are blocking access, so now I have no alternative other than to take this all the way.

Today I am submitting a complaint to NHS England and I will go all the way to the CQC, the Information Commissioner and the Courts if necessary. I only ask for four figures and it isn’t an onerous request. Even if I were being awkward, which I’m not, it is a legal obligation for UHL to comply with my request, and even then I am ignored. This time I have received three out of four figures, which is an improvement, but it isn’t what I asked for.

[graham-cParticipant]

My own diagnosis came about as a result of what turns out to most likely have been the joint effect of what was a hernia and a prolapsed (slipped) disc neither of which I knew about, but this has resulted in the diagnosis of a blood abnormality indicative of a malignant process.

I’m not receiving treatment, though I would presume that I have a higher risk factor for progression having previously had kidney cancer. I guess that this is because the hospital would prefer to wait to know where the illness is likely to appear and, though this has never been discussed, I’m not against this tactic as long as my results don’t become too extreme.

So yes Julie, it seems a reasonable assumption that it’s the symptoms that are the cause for both seeking a diagnosis and perhaps even for starting treatment. I’m possibly less disturbed by a diagnosis of a malignancy than the hospital believes (being a second time) and, in the same way that the path of Myeloma can be very different for each person, everyone’s reaction will differ too. I’m not especially strong willed, I just feel lucky considering normal kidney cancer survival rates.

Even if it were possible for hospitals to screen everyone, doing so would probably blight many people’s lives needlessly with evidence of an illness that may never progress.

 

[graham-cParticipant]

I had a terrible experience over non-disclosure when I had kidney cancer. That’s history but I believe it affects how they deal with me now.

I only have appointments once a year which appears to confuse everyone but it ensures I’ll submit an SAR to keep up to date with my blood test results.

I have mentioned that it must be easier for them to tell me at the time.

[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, 9 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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