[graham-cParticipant]

I don’t understand why but in Leicester it appears to be general policy to refuse to give patients results. I had the same situation when I had kidney cancer and it makes you feel like a second class citizen when participating in forums like this where everyone else knows their results.

The silly thing is that by the patient making a Subject Access Request at a cost of £10 the hospital is legally obliged to provide the results and they are strictly bound to supply what is called for in permanent form (as a paper record). I would expect to be given the full results in response to an SAR but I specified the four results which I know relate specifically to my condition.

This morning I have received three of those results in the form of a copy of a letter to my GP – PP 5g/L, serum free lambda 161, serum kappa lambda ratio 0.03 omitting eGFR.

I’m chastened by my experience with kidney cancer and having information withheld. I am aware that my last eGFR was 60, and below that level I should be placed on the CKD register by my GP which won’t happen if they aren’t informed.

I’m not alarmed by those results at all, but I am disturbed when I am not given information to which I am entitled.

I will report on my ongoing saga to get my blood test results.

[MicheleParticipant]

Hi Graham.

Well, that sounds totally unacceptable to me. When I see my specialist every 4 months, she knows I’m interested in and understand the bloodtest results and always calls them up on her screen for me to see and discuss.

£10 for each SAR sounds like a bit of a scam to me. I’d certainly kick up a bit if I were you!

• This reply was modified 10 years, 9 months ago by  Michele.

[tonyfParticipant]

Hi Graham, I attend the Leicester Royal, obviously have the same consultants as you, attend the same clinics etc. i have found the opposite to you, it is not general policy to keep results from patients. Whichever consultant I see on my three month visits, they swing the computer screen round and freely discuss anything that I want to know, they answer any questions etc and it is always followed up in writing a few days later. I’ve never been asked to pay any monies. The same letter goes tony GP. I find your situation very strange! I think it needs questioning.
Regards
Tony F

[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.

[eveParticipant]

Hi Graham

I would be lost without having my husbands blood results,they give so much information to his general condition,and show improvements or any condition that needs to be watched.!!!
I also have results from any scans that have been done,I think personally it saves the consultants time,and you can ask questions on things you do not understand,which in it,s self saves a lot of worry!!!.

I usually ask the nurses for the blood results in clinic,but if you cannot get them,go to your GP,they can go into the hospital system and can print copy for you.hope this is helpful,also your GP should be fully informed of all procedures and results by letter.
Something has gone wrong with this procedure if you cannot get results.Eve

[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.

[AV8RParticipant]

Hi Graham

It’s disappointing to hear of your experiences. The comment from TonyF will no doubt give you some hope.

I wonder whether your experience has been with just one specific consultant and if so, maybe a change would be appropriate.

Like many others on this forum I’ve been able to get blood results when I’ve asked. Whilst I was receiving SCT I requested and received my blood results in printed form. I was thus able to track my progress and response to treatment. Everyone I see at clinic appreciates my preoccupation with Paraprotein results and are eager that I’m informed of the latest test. I also receive copies of the letters sent to my GP which contain other blood results.

The “Guidelines for the Diagnosis and Management of Multiple Myeloma” (published by the BCSH) state at paragraph 13 that “The provision of information and support for patients and their carers is essential if a patient is to come to terms with their diagnosis and make informed decisions about treatment options.” It would be difficult for your hospital authority to disagree with national guidelines.

Please don’t think that I’m lecturing you but a positive relationship between you and the health care professionals is most important. In your case, this seems absent. I wonder whether anyone attends appointments with you (such as a relative or your nurse specialist). Maybe the consultant would be more cooperative if you had a supporter!

Best wishes

Stephen

[jeff605Participant]

Hi, I attend L.R.I. and always get a copy of the consultant’s letter to my G.P., which contains the results,sometimes all, sometimes some ( haemoglobin,neutrofils,platelets,MCV,CRP,eGFR paraprotein, -some of which I recognise, some I haven’t a clue as to what they are – and a brief resume of our meeting.As to what influence I could have on treatment if I think any of these are wandering in the wrong direction I have no idea.I really just try to have faith in the ” experts ” and trust them to do the best for me.Am I wrong in taking this attitude? I have expressed in the past on the forum that I feel that information is not voluntarily given by the consultants, although they will give me result readings on particular items, and answer questions if I ask. The ” randomness” of this disease makes it so easy to become depressed and continue to fight to maintain a positive attitude, I am at present struggling to do so after my last consultant meeting, where I had news that wasn’t that bad but that I wasn’t expecting and was badly presented to me. Ahh well, I’ll just carry on day by day and get on with it ( Really compared to some of you out there I’ve not had it so bad) Best wishes to all Jeff

• This reply was modified 10 years, 9 months ago by  jeff605.

[PhilipandfionaParticipant]

Hi

I wonder if it is worth you asking a couple of questions:
Firstly why you can’t have the results and secondly if you can change consultants.

It sounds like you are getting an extremely raw deal compared to most here and that is simply unacceptable.

In my job – which is entirely non medical I have to give advice to people. I often know that whilst I know just as much as my colleagues, I will get in better with some clients than my colleagues and vice versa. Sometimes we click, sometimes we don’t and it is for the professional to be a grown up and accept when it is better for the client / patient to build a working relationship with someone else.

I hope you get answers. Perhaps speak to the head nurse or contact PALS in your hospital?
Good luck, you deserve it.

[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.

[BADGERParticipant]

HI GRAHAM
you are really unlucky I have CRF caused by MM but both the clinics I go to give me full information every time I thought this would be standard
Regards Jo

[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.

[eveParticipant]

It sounds a bit like a situation that has developed which is not in the best interest of patient or hospital !!!

Instead of possible making the situation a big issue,why not go to the patient service that is in the hospital PALS????
My understanding is you want the blood results that you are entitled to for your own peace of mind ????

[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.

[CarolsymonsParticipant]

I have to admit that when I was with Ealing Hospital I had to battle with the Macmillan nurse in charge of the day ward to get my blood test results. Either she would tell me they were not back (when another department had seen on the computer that they were) that she was too busy to print them; that I should wait till I come back in 3 weeks to get them; that she couldn’t tell me over the phone etc etc etc. Hammersmith Hospital print them out for me…no problem.

Carol

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