[Anonymous]

Hello,

An issue has arisen for me regarding getting timely access to my blood test results, and I’m wondering if this has been the experience of anyone else.

I was diagnosed with Light Chain Myeloma (Lambda) in August 2013. I am a Padimac trial patient and have been in complete remission since the end of my treatment in December. I now attend hospital every 4 weeks, have my bloods taken, and then visit my Consultant, or a Registrar, to discuss

At these meetings, the results for my light chains and M-protein are not available as the hospital Lab takes 2 days to report on them. For the past 9 months, I have been able to telephone the hospital Trials Nurse 2 days after my appointments, and either been given the results over the phone, or had a printout left at the reception in a sealed envelope.

Earlier this week I rang as normal to get these results following my latest consultant appointment, but was told that although the latest results are available, one of the consultants had ordered that patients needed to wait until their next consultant appointment to receive results. For me this will be in 4 weeks’ time.

Monitoring my condition using these results has helped me cope with what has happened, and is happening to me.  Knowing that I may no longer be able to get them timely is causing me stress and upset. In the past I have asked if I could have my bloods taken a few days before my consultant appointment so that all results would be available, but I was told that this is not how the service works. I have also been told that most people with Myeloma do not have a need for timely access to test results.

I have spoken to the very helpful Myeloma UK info line who suggested I contact the Patient Advisory and Liaison Service (Complaints Handling at my hospital). Firstly however, I decided to ask my Consultant by telephoning his secretary. The feedback from this is that my consultant seems happy to provide the results, but because there has been an objection by another consultant, he feels he has needed to contact the hospital Board to find out if results should be provided outside of consultation time. So I now await their decision.

I’m very disappointed that an issue has been made of this. I’ve read a lot about “informed care”, encouraging patients to take an interest in their care, but in my experience, I certainly do not feel I am encouraged to do so.

I’d love to know how other hospitals deal with this situation. I attend Belfast City Hospital.

Kind Regards,

Jan

• This topic was modified 10 years, 4 months ago by  webteam.

[FrancesParticipant]

Do they send the results to your GP? You might be able to sidestep the process that way if they do. My consultant often forgets to send me the results.

[CarolsymonsParticipant]

I have to fight to get my results between appointments at Ealing Hospital, west London. I have been told they cannot give them over the phone, but when I do go in to collect them there is still a reluctance to print them out. 4 weeks is too long to have to wait when you are anxious about this bloody cancer returning……after all it is my body, my blood and MY results! Soooooo annoying!

Carol

[duskParticipant]

Fortunately I have had no trouble getting my results- except once when a one nurse said they could not be given – but another  I asked soon afterwards happily printed them out.

What I have discovered is some doctors/ hospitals use a clause n the Data Protection Legislation that relates to subject access (i.e. your records) to decide whether they are too sensitive to allow you to see them. in some cases this might be because some people could be psychologically affected.

I do not think by law without a formal DPA request the consulant /hospital is obliged to give you printout of results. I have been fortunate (and persistent).

I think everything hinges on hospital / departmental policy. I get copies of letters to GP so I get important results from this too.

Dusk

[graham-cParticipant]

Hello JanT

I have previously had a lot of trouble getting hold of results and I have created a lot of fuss about it. There is history to this as I was treated deplorably when I had kidney cancer and neither I nor my employer were told I had cancer, which I only discovered was known to the hospital when I got my notes. I only mention that to explain why for me I’m particularly sensitive about seeing my medical notes.

So that you don’t think I live on the brink of hysteria I would mention that a registrar at Haematology described me as a ‘charming gentleman’ in a letter and having had one brush with cancer I’m quite blasé about it, but I resent being fobbed off or not being given facts when I know that the information is available.

Last year the hospital lost a 24 hour urine specimen for which they were going to perform a urine electrophoresis and then they denied they ever took it. As the only comment they are ever willing to make is ‘okay’ I wasn’t then pleased to learn that my light chains had increased by 20%. I’m not receiving treatment and nor am I banging on the door to have anything done, but I do have a lot of inexplicable symptoms. I could ask my GP for the results but I don’t want to risk getting her involved in what seems to be a problem area as we appear to have a decent relationship.

I therefore make Subject Access Requests to the hospital and they are legally obliged to provide the information requested within 40 days which costs £10. They could refuse on the grounds that it might affect you psychologically but I think that some hospitals are introducing it as a policy which they can’t do. A hospital cannot introduce a policy that overrides an Act of Parliament unless they have a regiment of tanks or can form a quorum of the crowned heads of Europe.

If you look up your hospital website and ‘Subject Access Request’  it will tell you how to go about it. Previously I have still had trouble but, if they had let me down this time, I know an inexpensive way to take them to court. This may sound extreme but the frustration of having something withheld to which you are legally entitled is a ‘red rag to a bull to me’.

I’m sure that it’s more inconvenient and costly for them to have to retrospectively look up results and go through the Subject Access procedure than give the results at the time. The nurses always presume that I will get the results almost immediately when they take the blood and with some devilment I was looking forward to telling them I was taking the hospital to court over the previous set, but I got them promptly this time, and I sent an email ‘thank you’ message.

I have never found PALS to be very helpful. Your GP is the best bet and mention that you are legally entitled to them using a Subject Access Request if he/she can’t help. Being polite and firm helps.

• This reply was modified 10 years, 4 months ago by  graham-c.

[Anonymous]

Hello,

I am so indebted to you all for your responses. It is sadly good to know that I’m not alone. I will take the advice on-board, especially regarding using my GP. Carol, your sentiments describe my feelings precisely!

At this moment I’m waiting to hear what my consultant feeds back from the hospital board, in terms of what is right regarding the passing on of information outside of consultation time. I’m concerned however [I used to work for a Health Trust] that it may take some time for a decision, as these Boards usually meet monthy with pretty full agendas, and where would this issue be placed when they are dealing with real issues. It isn’t that this issue isn’t important, but that I don’t believe it should be an issue. For my case I have been refused, it seems, as my request was giving a nurse extra work. So instead of putting a different process in place to provide the results, the Consultant concerned instructed to withdraw the provision of results altogether! I work in business, and if I treated my Customers and Clients in this way, I wouldn’t have many. But I am a cancer patient who has no choice but to take what’s given to me … at least that is how I’m made feel.

If the hospital board say “do it”, then great, but there would still remain an issue that needs to be resolved so that people cannot be refused access to their personal test results in a timely manner.
For information: my Lambda free light chains dropped following treatment from 6200 to 7.5 over 5 months. Over the following 5 months they have been bouncing about under 15.8. The last reading I have is of 23rd May. So 2 months later, do they remain in the normal range of under 26? I have no idea! But the information is there, recorded in my hospital records. The situation is so maddening and frustrating, annoying and worrying!

The Freedom of Information legislation could be used to gain access, as Dusk and Graham-C have referred to, but I’d need to do this monthly, and by the time I would be given access, I’d be a few days away from my next consultation meeting, so think, what’s the point! With all that we Myeloma sufferers have to deal with [and people with other conditions], why can’t professionalism be displayed by our hospitals? Don’t we have enough to contend with without added grief? Is it possible that there could be some central pressure put on hospitals to act in a caring manner over this issue? Via political means? Myeloma UK? … help?!

JanT

P.S. Graham-C, I also have had a 24 hour urine sample lost by my hospital. This has bemused me as, being a Myeloma patient, I’m told to drink 3+ litres of water a day, so the sample isn’t small! So how do they lose it?? It sure is a bother to collect!

[avantrompParticipant]

Hallo to JanT, Frances, CarolSymons, Dusk and Graham-C
I find your descriptions of trying to get access to results outrageous. I am being treated in Holland and get a printout of every blood test. When I see my consultant he turns his computer screen to show me his graphs of my progress etc. and takes time to answer any questions I may have. The NHS is a wonderful institution but I suspect there are also drawbacks. Everyone here has to have private health insurance and I think that very fact gives a different attitude towards provision. On most occasions that I see him (under the protocol of the international study that I am taking part in he has to see me every month) I usually wait a max. of 15min.
I am British and benefited from the NHS until our family moved to Holland in 1973, and therefore know from experience how great it is, but my feeling at the moment is “glad to be in Holland”.

[graham-cParticipant]

All I’ve ever been told is that my results are ‘okay’. If I hadn’t had copies of my blood test results I wouldn’t even be aware that I have a malignant condition and I would expect to be discharged in due course. Understanding myeloma in all its manifestations is difficult and I have your variation Jan T but at a much less advanced stage. I can quite appreciate that those who have the greatest risk of bone degradation are a priority, and similarly those with obvious symptoms of organ failure and, though I have many rather non-specific symptoms, it’s case of waiting and seeing where the disease manifests itself.

To a large extent and in simple terms a person may have the illness, but where it’s affecting you is the aim, and treatment will deal with that unless your results become so great it has to be addressed. I’m happy to go along with that as I presume that treatment won’t make me feel any better than I do now.

<span style=”font-family: Arial, Oswald, ‘Helvetica Neue’, Helvetica, Helvetica, Arial, sans-serif; line-height: 27px;”>…</span><span style=”font-family: Arial, Oswald, ‘Helvetica Neue’, Helvetica, Helvetica, Arial, sans-serif; line-height: 23px;”>.. the Consultant concerned instructed to withdraw the provision of results altogether</span>

Quite simply the Consultant doesn’t posses that authority. The right of a patient to be informed of the the results of medical tests and treatment is embodied in the NHS Charter (in slightly vague terms) and also more directly under Data Protection Legislation. All I require is four figures – paraprotein level – free light chain level (which ever flavour is relevant) – kappa/lambda ratio – eGFR.

Your GP is the most diplomatic means to get the information being withheld from you, but the Consultant could have made it inaccessible to your GP too, in which case you have to go the way of an SAR.

It’s interesting to hear about your similar experience with the 24 hour urine collection JanT. NHS protocols appear to be governed and set by the International Myeloma Working Group and I presume that this test forms a part of that, but I noticed that the first time I provided one it went straight to the ‘sluice’ which seemed peculiar. I have read that the blood tests provide better and more accurate results in all instances apart from testing for amyloidosis.

I did actually discover (by unofficial means) that the test was referred to in my records, though the official response was to ignore me, and I discovered that it stated that the specimen was ‘mislabelled’  which I imagine is French for it being poured down the sluice. I didn’t pursue the matter on that occasion but it’s very risky practice and one that no medical team should countenance.

 

[jillsParticipant]

Just to pitch in here, in my Mum’s case we have the blood test two weeks before the appointment, then the consultant has all the information ready for the day. He is happy to share the information with us and answers questions I may have. He follows up each appointment with a letter to Mum’s GP, and she gets a copy with the key results included. So the NHS can certainly do it right if they want to!
Jill

[Anonymous]

The way the service is delivered at your hospital Jill sounds very sensible. I did ask some time ago if separate appointments could be given for taking blood and consultations, but was told no. On that occasion I asked a Nurse but I might try asking my consultant, but it would mean significant change to how appointments are scheduled so I am dubious if it would be accepted. I will also check with my GP and if they have the information then I’ll be satisfied. However I still believe there’s something wrong with results being withheld. Jill, could I ask what hospital your Mother attends? I would use it as a reference of good practice in any discussions I have.

Might Myeloma Infodays be good forums to raise this topic and to display how unhappy some of us are at how we are treated? I’ll be attending the Myeloma Infoday in Northern Ireland in October, and also the Amyloidosis day in London in September [Yes I have that too!]. I will raise this topic on both days as I think it would be good to do this in an open face-to-face forum. I’ll feedback here how the discussion goes and if there seems to be any hope of getting recommendations for change to be accepted by hospitals. I think it would be good too if Myeloma UK could make recommendations to hospital if at all possible so maybe that might come out of this.

Glad to hear too that Holland seems to have the right idea Annette!

Regards,

Jan

[jillsParticipant]

Jan,
My Mum is under Frimley Park Hospital in Surrey but she has her appointments at a outpatients unit near where she lives which is part of the same PCT. The have a separate blood test unit so her consultant gives us the blood test form at each appointment so we can get it done two weeks before the next one. It means we have an extra trip down to the unit for the blood test but we can go at a quite time and it is normally very quick. We are very lucky round her as the PCT is excellent and Frimley Park is a very good hospital.
All the best,
Jill

[tonyfParticipant]

Hi all, thought I would add my tale, like Jill, I visit my GP surgery 2 weeks before my clinic appointment, the hospital have already supplied me with the envelopes, nurse takes the blood, so 2 weeks later at the hospital appointment the detail is there ready for discussion. My GP receives a letter showing the current results and I recieve a copy through the post.
As I am on the myeloma XI trial but on three monthly clinic visits I have an interim blood test at 6 weeks which again is done at the GP, a confirmation letter showing the results is sent out to both the GP and to me from the hospital.
I attend the Leicester Royal Infirmary.
Odd how different hospitals operate!
Regards
Tony F

[graham-cParticipant]

The hospital tried to offload blood collection to my GP surgery but the surgery wasn’t set up to handle it and the hospital don’t support it, and so I no longer take any notice of that. I won’t list all the things that went wrong but the look on the nurses face when I handed her a container with a 24 hour urine collection was a picture, not that the surgery had supplies of the containers and neither had the hospital given me any.

Having noted that specimens for urine electrophoresis must be kept refrigerated I doubt that the surgery had appropriate facilities let alone the nurse in transporting it.

As long as I have the forms I can get my bloods taken any time I want without an appointment at the hospital and I know the details to put on my SAR. Previously I’ve had problems with SAR’s but the hospital appear to understand the implications of not handling them properly and I got results in two weeks last time, and I don’t mind paying £10 for a simple hassle free experience that doesn’t involve argument.

[jeff605Participant]

Hi all, I have blood tests taken at the local GP usually on a Monday for the meeting with the consultant on the Thursday. Up to the last couple of months this has worked well, the results have been available at the consultation and freely shown to me and discussed. The last two months, although most of the results have been there the p/p results haven’t arrived. Whether this is due to a hold-up in the analytical dept. I don’t know. I shall get my blood tests done a bit earlier to see if it improves matters. As said, the phycological effect of knowing how the p/p for one example is going is of some important to those of us with Myeloma. I do get a copy of the Doctor’s letter some two to three weeks later, and can now access my Medical records online. It does seem difficult and I have posted on this earlier to get detailed information from the consultants in answer to questions.
I seem to remember from the earlier posts on this subject, ( I think I started the earlier Post on getting information and please correct me if I am wrong ) that Graham attends the same clinic as me, and appears to have a lot more difficulty with the system there than I do, why, I have no idea. I have had no difficulty with urine sample bottle availability and return. No way am I denigrating Graham’s
problems with the system, it must be infuriating !! Jeff

• This reply was modified 10 years, 4 months ago by  jeff605.

[avantrompParticipant]

Hallo Everyone
Thought I would let you know how I get my blood results. At the last appointment I am given the blood test form with required tests ticked off. On the day of my appointment I go to the hospital an hour earlier for blood to be taken and am seen straightaway because my form has an “urgency” indication. When I then see the consultant he already has all information, with the possible exception of pp levels because the lab stores them up to work on several at the same time. In that case I ring up a few days later.
It is fantastic for people who live some distance from the hospital.

[Author]

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