Blood results

Hi I've noticed on here that people seem to know their specific blood test results. I am wondering how this happens? I have tests every two weeks and never know the results. The only hint is when I see the rheumy nurse stare at her screen at the dmard clinic and say 'your bloods are ok'. I am never told specifics.

I did ask at the start to have copies of test results and letters about me - since I am the one living with this body I think I should be fully informed- but was told this was not standard practice and I would need to make a special request. I should add I am in the NHS in the UK - i.e. even lucky to be getting any appointments.

I have no named consultant as several left when I was diagnosed and I only ever see a nurse who I do not really feel comfortable with.

The NRAS video about the patient Jane being asked by a Rheumatologist how she feels is good but I can never imagine this happening here (in my experience) - there is no space for it, and presupposes you actually see someone enough to feel you can trust them. I just feel like a non allocated patient who is less important than ones who actually have a doctor they see.

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  • When I was in the UK I insisted on getting print outs of my blood test results. Depending on the practice I was with it was automatic, easy, or a major battle. For a period I got them from GP but they changed 20p a time for the photocopy, sometimes they would get automatically sent to me in the post from the hospital (!) and the rest of the time I asked the nurse - politely but firmly. It's my body, my blood and my right to have the results.

    I forget if you are still on MTX? IF so you could print out a copy of the patient held monitoring booklet and thrust it at your nurse with a firm expression ...... here it is

    npsa.nhs.uk/EasysiteWeb/get...

    (It is a positive of the French system that I now get a 4 page report handed to me by the lab every time... makes the cost of each blood test more acceptable)

  • This is such a helpful booklet with the blood test info in it! I have had warning sheets about MTX but not this as far as I can tell. Thanks

  • Shocking! Who takes your bloods and why so often? You should be getting copies of everything...it's called 'shared care'.

    My bloods are taken at the GP surgery and then the idea is that they get written onto a little yellow card which I'm supposed to take to the hospital.

    What actually happens is that the results are emailed to me, and the hospital has electronic access to them. But I transfer them to the little yellow card so I can see the trends.

    I also always get copies of any letters written by hospital consultants to my GP, although interestingly I don't get copies of the letters my GP writes...must ask her about that!

    After many years of not trusting any of the local rheumatologists, I have at last found one I can talk to. Makes such a difference! And I do ask to see her every time.

    Hope this is helpful and that you feel able to be confidently assertive in future.

  • If there's a Rheumatology clinic there must be a consultant in charge.

    If you're on MTX or whatever you should know your blood results - and have a copy in your MTX record card (not that I have, but I like a bit of ignorance and trust the staff. I would get a print out anytime I asked)

    It's supposed to be standard practice for all letters about patients to GPs to be copied to patients -(for the doc's protection as much as anything else). I certainly get copies without asking even if I just pop in to the nurse clinic to have a grizzle about a flare up.

    Perhaps a letter to the consultant in charge of rheum to ask how the hospital protocol compares to good practice guidelines - as a first resort anyway.

    good luck

  • Hi thanks for replies. I'm on 2 week blood tests since starting MTX in April. Told to keep going. Otherwise you don't get prescription.

    I go to a hospital clinic for blood tests and results go on electronic system to hospital and presumably GP. This system alerts hospital if you don't have regular tests and you get called.

    I don't have an MTX record card and have never been offered one. Or a yellow record card. I only get told DAS scores if I press for them. I feel totally disempowered and infantilised by the hospital- they can know everything, but I am not in the loop. I questioned this at an OT appointment when OT refused to let me read Rheumatology letter about my latest situation and told me I had to make a special application. I pointed out it is my data and my life it is about so why do I need permission to read it? She acted like I was a difficult patient and didn't bring my notes into room at subsequent appointments. I actually got that letter by asking my GP and it said nothing that needed to be hidden from me.

    I am reluctant to complain as feel I will just get pushed down the list in an over stretched service.

  • Sometimes polite assertion (aka complaining) brings respect and consideration....look at Helzbell's post about the miraculously positive effect of her complaint to PALs.

    And the truism that those that shout the loudest get heard also applies. This is stressing you, so taking action may help you feel less disempowered too.

  • I have a login to my GP computer and can look them all up. Their computer is commonly used by many GP practices and is called System One. Could be worth asking them.

  • I only started getting blood test results when I changed GP surgeries and was put on "shared care". Prior to that all tests were done at the hospital and they never gave me the results. I did always get a copy of the letters sent by the consultant to my GP but these didn't include blood rest results anyway. Now the nurse at the GP Surgery who does the blood tests adds the previous appointments results each time. Officially these are for the benefit of the hospital, have to take the results booklet each appointment, however since the hospital changed its computer system (or more accurately two hospitals merged into one), the Rheumy department have access to the results anyway but have continued having the booklet updated for my own benefit. I think you'll find this is often the case where shared care with a GP surgery isn't involved and they just advise the GP of the overall details of the appointment only.

  • My GP doesn't even get my results. I can get them posted to me from hospital if I actually ring the rheumatology dept. Bloods are done at GP surgery. It is ridiculous. How can they share care if they don't know results? I am told to trust hospital. They only check results on random occasion or if I have an appointment with hospital. I have been told my white blood count is low 2 months after blood test when I have already had the next test! It is fairly random if I get letters when NHS but always do if I pay.

  • Hi Blighty

    I'm so sorry you are feeling like this.

    I get all my blood test results through patient access online at my GP.

    I see comments from all consultations with my GP and copies of all hospital letters.

    Along with all my blood tests comes graphs where each entry is plotted so I can visibly see trends. It's a fantastic way of showing my friends and family in a visual sense what was happening pre drugs / on steroids/ DMARDS /Biologics.

    My GP comments on each set of blood results for example when it comes to white blood cell count the GP writes ' normal for Biologics'

    I have mine done every eight weeks. It was fascinating to see my liver results spike on Mthx and Leflunomide, a tangible thing to see exactly why I couldn't tolerate them.

    You seem to be having yours done with great regularity but I absolutely think you have every right to see any result every time.

    When is your next consultants appointment? You must be seeing someone every 6 months surely?

    Mx

  • Crumbs! I must say I'm amazed (and impressed) reading these posts - and not in the way you might think. My gp and consultant share care in that bloods are taken at the surgery and the results sent to the hospital - though I have to ring the rheum nurse's answerphone to tell them they've been done. I have never received the results of the tests although did once ask at gps and receptionist printed that month's off for me. I have also been shown them on the screen at hospital apps.

    Neither have I ever ( in 18 months since diagnosis) been offered any sort of record card to record results and take to appointments. I guess I just assume that if there is a problem they will let me know! The Meds are reviewed at the gps once a year and I was told that my blood results are also checked every month at the surgery. I recently spoke to the rheum nurse having reduced Hydroxychloroquine due to side effects and she confirmed that my inflammation levels had remained ' good'. My disease does seem well controlled atm but it just shows how different areas seem to work differently.

    On a slightly different matter, I have also never received patient information for the methotrexate that I take. It either comes in a pharmacy bottle with just a dosage label or in a blister pack inside a blank cardboard sleeve with my dosage on. I was warned by the pharmacist the first time to keep it away from children and it's always in the 'poisons cupboard' at the pharmacy which makes the lack of patient info even more worrying! I probably could have asked for one but just printed it off the internet instead.

    I do feel slightly guilty now that I haven't followed these things up.

  • I think this is against the law! Every prescribed drug should come with a PIL. If you've been having it for a long time they might presume you've already seen it, but even if they fill blank boxes with drugs, they should still copy the PIL for you - especially for drugs like MTX! Mention it to the pharmacist - they'll jump to attention....

  • I think you're right. It certainly should be illegal.

    Will chase it up.

  • After reading of other people's experiences of the NHS I'm beginning of to realise how lucky I have been for the last 14 years. I have seen the same consultant 2 or 3 times a year during that time. I have my blood tests done at my gp's surgery. I ring them for the results, which are then written in my blood book on my next visit.

  • Thanks for the replies. We have patient access online at GP but there are no records or results shown on it, you can only see your repeat prescriptions to request. I think it depends what each practice decides to show to its patients.

    I am going to either contact PALS or write to head of dept. I have a review in September but have already been told I won't see a consultant, possibly a new registrar. I definitely feel I am low priority for some reason as other people have been allocated to new consultants.

  • I initially had patient access only for ordering medication, but if you look on the home page there should be a link to request access to medical records and test results. I got a message from surgery to let me know when it was done. It took a week then I could see everything, even letters between doctors and hospital. X

  • Ok I will take a look! Is it the patientemis system?

  • No it's called Systm one

  • We have a lab here in Canada that offers electronic results via app. It's called Dynacare. We don't use hospitals to do our blood work. It costs $20 for the whole year. Not sure if you have something similar in the UK

  • I cannot imagine how stressful that would be. I am in a private clinic in Canada 🇨🇦. Not to say there are not issues(nurse Ratchet ). But what I do appreciate is my Rheumatologist. She is quite unique. I will be 57 on Friday. I have seen a lot of doctors but none as personable and caring as her. In fact, I would not have continued meds except that I do not want to give her up.

    I was so devastated by this RD in 2015. I lost two businesses and went from fourteen hour days to a dead stop.

    She even hugged me at one point. I certainly hope that you have support at home. I would contact your association and see if they can intervene.

    NHS I assume means National Health Services ? Which suggests a tax payers program. If it works like Medical Services Plan here, this is a plan you all pay for. I am in a remission currently so I am joining a program called Patient Voices Network. Patient partners work on a policy committees.

    This is after two years of non stop doctors, tests and drugs. This is when you are feeling a little better. Please call someone to help you.

  • It's good to see your own blood results as you'll spot a change much quicker than anyone else. In my case there are about 3 results which cause problems, sometimes they're picked up, sometimes not.

    I live on a county border and my GP is one side, the rheumy the other. The results often don't arrive at the hospital, and even if they do, the rhuemy never has them there at the appt (can you believe that?)

    So I fill in a book, just started to do it on a spreadsheet on my phone, and take it to appts where they have a look (really!)

    But the good thing about transcribing them is that you spot problems quickly - you get used to the names of the tests and what the results mean. In short it empowers you, and you do become more knowledgeable about your disease.

    At first my GP practice did make a fuss about giving me the results, but we worked out a system. The deal is this...after the blood test I email the medical sec. at the practice requesting the results. She then sends them to me (encrypted) which I can view (not copy!) with a password. It mostly works OK!

    You probably have the same set of blood tests each time. You can download the booklet yourself from the link someone posted below and start filling it in. Good luck X

  • Very helpful advice, thank you. I have discovered a new GP who is supportive and am going to see her about all this.

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    Every time I have them drawn, I keep a copy so I can compare. I would think that if it is your body/results that should give you those results each time you request. I live in a suburb of Chicago and get them every time. My hospital puts them in a program they supply called my chart, so every test I take, I can read. I know things are s different in different countries, but they should let you have them. Then you can keep a log on how you are doing. Good Luck

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