Has anyone here got access to their medical records through the Patient Access app? I just got mine, and noticed some peculiarities. It did show me some of the correspondence between my consultant and my GP , and loads of trivia, for example, apparently I have shrunk by 1 inch in the last year 6ft to 5ft 11", without measuring me😕😕😕, how does that work? ( If I lived for another 71 years, I would disappear completely🤣🤣🤣, and save them the bother 😁😁😁) The most annoying thing is that my pathology results are deemed not to be a part of my records, so I still have to go through the rigmarole of asking a GP for permission to get a copy of my blood tests. Really annoying 👿👿👿. What does the team think?
David ( Official NHS Nuisance)
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davianne
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It's a pain, but since I've had my liver probs I have insisted on a copy of all blood results. Whilst I dont profess to understand them, I know my particular dodgy ones that I need to keep an eye on. This situation (and the loss of a dear friend to liver Cancer {secondary breast cancer}) has made me stand up a bit more for myself. If in doubt ask, and if you're not satisfied, politely keep asking. Its easy to assume someone else has 'got your back', but actually, it's your back, and if there are any hiccups/oversights, it's not the Consultant/medical team whose health will suffer. My only rule is to 'be polite, and be fair'. Trust me, you're not the only NHS nuisance 😉, but as long as youre polite, it doesn't count anyway 😘
Hi Erica, when I had my first LFT, some readings were through the roof. My GGT for example was 1364, practically in orbit, and a lot of other reading were very high, except my platelets which were very low, and continue to be today. So, like you I need to see the actual results for comparison. I agree that you have to fight your corner, 'cause no one cares more about your health than you and your loved ones. The benefit of being a thorn in their sides, is they don't take you for granted 😁😁😁.
Blimey! And I was panicking about my GGT of 59! That's incredible!! Do you feel OK? On the height front, in my younger years I was quite pleased to be a willowy 5'11 and a couple of years ago I had my height checked, and I asked for it to be double checked, as it was 5'8"! That was quite a difference between 35 and 55 I thought! At least I can get trousers that are long enough now!! 😊
Yes Erica that was really serious then. But after stopping drinking in Oct 2016, most of my blood tests are at or near normal, except very low platelets, which means I have frequent nose bleeds and bleeding takes longer to clot. I was 6'2 when I was 15, and stocky, which is why I took up Rugby. I feel OK most of the time, but have the usual side effects, the worst is painful joints and constant tiredness.
I'm pleased you're 'under control' and everything is 'normalising'. On the achy joints front, I'm right there with you 😩 it's miserable. I've arthritis in my spine, but since my liver problems manifested this year, I stopped all pain relief (and booze). I've been 'leaning on' co-codamol, naproxen, amitryptyline & Omeprazole for way too many years, and feared that all those meds plus alcohol (not excessive) have wreaked havoc. Without the meds I've been in real agony for a couple of months, but it's surprising how you adapt to pain tolerance when you absolutely have to. The pain from my back travels down to my left hip, which really is spiteful most of the time, but the upside is my AFP is starting to decrease and my GGT is under 25! I'm probably a nightmare to live with but my dogs don't seem to mind! Have you had any physio?? Might that help? It was suggested to me, but I've not got an appt yet, take care, Erica
Hi Erica. yes the pain is a problem, with limited choice of pain relief available to cirrhosis sufferers. I have seen a chiropractor in the past for a trapped sciatic nerve I sustained playing rugby when I was 25, and suffered with ever since ( stopped my amateur rugby career) I have a lot of joint pain,particularly my knees and shoulders and pain in my upper chest, under the rib cage.That's why I go to bed at 8pm as the pain is much reduced. I too have amitriptyline & Omeprazole, and just paracetamol for pain relief. My GP will not put me on any opiate based painkillers, but then he's not the one in constant pain. I also use an electric heat pad, ice packs and a tens machine, all help a bit. I have not been offered physio, I've got enough pain now without it 🤣🤣🤣,
I too have very painful joints and extreme tiredness. Hap appt with consultant who doesn't know what thus could be or how to deal with it. Don't like taking too much paracetamol for obvious reasons. What advice have you been given... If any?
Hi Annie, my consultant told me categorically that my ribcage pain was not liver related, but angina. My heart has been thoroughly checked by Cardiology 3 years ago, I even have a heart monitor inserted in my chest, so I know it's not that. No advice was given about pain relief except keep away from Ibuprofen. My GP won't prescribe any opiate based painkillers because of their addictive nature. I went to see him to get Tramadol, and came away with paracetamol. As I replied to Erica, I also use an electric heat pad, ice packs and a tens machine, all help a bit. I even tried horse liniment once ( no jokes please😁😁) which helped a bit, but it's smell could clear a GP's waiting room in seconds🤣🤣🤣.
Hi Mark,I've still got it, I might give it a try on Monday 🤣🤣🤣🤣
David
Bone shrinkage is common as we mature David. It's all about Bone being living tissue. As we age, the structure of bone changes and this results in loss of bone tissue. Low bone mass means bones are weaker and places people at risk of breaks from a sudden bump or fall.
Bones become less dense as we age for a number of reasons, including:
An inactive lifestyle causes bone wastage.
Hormonal changes – in women, menopause triggers the loss of minerals in bone tissue. In men, the gradual decline in sex hormones leads to the later development of osteoporosis.
Bones lose calcium and other minerals.
In a joint, bones do not directly contact each other. They are cushioned by cartilage that lines your joints (articular cartilage), synovial membranes around the joint and a lubricating fluid inside your joints (synovial fluid). As you age, joint movement becomes stiffer and less flexible because the amount of lubricating fluid inside your joints decreases and the cartilage becomes thinner. Ligaments also tend to shorten and lose some flexibility, making joints feel stiff.
Many of these age-related changes to joints are caused by lack of exercise. Movement of the joint, and the associated ‘stress’ of movement, helps keep the fluid moving. Being inactive causes the cartilage to shrink and stiffen, reducing joint mobility.
Look on the bright side, you'll save money on the coffin size.
Many thanks for that Richard. Yes I know about the body changes associated with ageing, my levity about my height was because I have never ever had my height measured medically. So just thought it was a strange thing to guess in my medical record. With pathology omitted from my records, the only useful things I gained, were the letters from my consultant to my GP.
Hi David. I have always received a posted copy of my consultants letters to my GP. It's been the same with my liver clinic too. My blood results are normally given to me verbally at the clinic, they send me the forms to have bloods taken at my local hospital usually 2 weeks before the clinic appointment. So I feel that I'm in the know about most things. I'm also weighed and measured at each clinic visit and also at my interim visits with my consultant. There seem to be big differences between health authorities! Alf.
Hi Alf, yes, I do get some letters, but not all. My consultant up until now sent me for bloods, gastroscopy and ultrasound before my 6 monthly appt, but that has all changed now, no pre-appt tests requested. Today I received an appt for an ultrasound, but he has now put me on yearly monitoring which concerns me.
I think your right about health authorities, I guess it's the luck of the draw.
That seems a long time between appointments. I'm not surprised that you're concerned. So if you have no pre appointment tests what is there to discuss at the meeting with the consultant? Other than he looks at you and asks you how you are and how you've been! Alf
That's absolutely right Alf, he just does small talk. I asked him at my appt, If the fibroscan machine standing next to me was there for me. He just said no, we already know you have cirrhosis, so there's no point. I think I will have to stir things up a bit, because I feel that i'm being sidelined.
Don't blame you David. I would do the same in those circumstances. There's a lot of thinking and worrying between one appointment and the next and that's when we're talking months!
Absolutely right Alf. I try not to think about it, but sometimes I just can't function properly because it's always there, nagging away in the background.
It's bound to be! Pre transplant ,even with 3 monthly checks, my mind worked overtime in between. I just can't imagine how I would have felt if my next appointment had been a year away!
I would ask for a second opinion. When my consultant put me forward for transplant he told me that I would only stand a 30% chance of getting on the list. My age was against me 68years 6 months. The fact that I had been diabetic (type 2) for over 20 years. I was very weak and muscle wasted when I went for assessment at Addenbrookes ,had oedema and also ascites coming on rapidly and I had entered liver failure. So if they were weighing me up for afterward recovery then I was hardly a model patient for transplant. I was accepted on the list and was transplanted 10 weeks later (and all that after spending 5 years being told that I was terminal!).
Wow Alf, what journey you've been on!!!!! It gives me a wee bit of hope. I am fairly active for my age, never had muscle wastage, but did have oedema, and mild HE. I am a bit overweight, because, after giving up drink, I developed a sweet tooth (never had one before) My constant upper chest pain, L&RH Side, is a real downer. I go to bed at 8, mainly because pain is much reduced when laying down, but also because I get so tired, even with normal daily chores. I too was told my cirrhosis was life shortening and possibly life threatening. Thanks for your advice, Alf
Morning David. I think that this site is brilliant. Not only can we all have a good moan at times with others that understand where we are coming from and a few laughs along the way to cheer us all up, but also we can read about the treatment that others are receiving and check if we think that our own treatment is falling short. If I had known about this site pre transplant then I certainly would have been asking a lot of questions. I was classed as terminal and on chemotherapy daily for 3 years meanwhile people on this site with worse health problems than me were actually on the transplant list. It's all history now in my case and luckily I am here to tell the tale but things could have turned out very different! It's just a great shame that when I was still strong 5 years ago and when I was diagnosed that I couldn't have been placed on the transplant list. Alf
Hi Alf, that is so true. This forum has been a godsend to me, not only for the support, help and advice for liver disease sufferers, but also the jokey banter that lifts your spirits. I was very depressed when first diagnosed, and had almost given up to be honest, but the wonderful people here have been a game changer for me.
Long may it continue. It's true, that when you read of other people's journeys, it put's your problems into perspective ( just as I have now, reading your journey)
I know, some of these mysteries still puzzle me. Even to day I went and saw my GP over my resent blood results. Not mentioning which test it was, but the normal range for this particular test was from 0-5. My score was 13.7. Doctor was rather non-plus. "Oh, that's alright, these scores can go up to 100, then we know we have a problem". Some doctors don't really inspire confidence in their patients, hence the reason why so many people turn to Dr Google for answers.
Recently I had an Fibroscan which recorded calcified gallstones in my gallbladder, I informed the QE that this was impossible as I am almost three years post. After about six weeks I got a letter of apology saying that this was in error. But thanked me for pointing it out. It can be a worry.
I got access to mine a while ago by accident. My surgery has removed them now. But there were a few things on mine I wasn’t happy about and I hounded my doctor and got them removed. Took a year though! Any information they hold about you should be completely open and honest. How can they say you’ve changed height without checking? Good luck with the blood tests
You are right Saffron, I was gobsmacked about the height thing. there was other info on there that was not accurate as well. Thanks, I will call my surgery on Monday. I just don't get why they withhold them, bloods are an important part of our medical records.
Hi I have access to my records via that site but I can see my results except the radiology. i havnt looked at mine for a while but I will now to see there are any peculiarities on my records Thanks for bringing this to our attention.
Hi Jackie, there not full medical records, just mainly letters between GP and Consultant. There is a section for test results on the app, but some test results are not there. Maybe they think we're too dumb to understand them.
Hi, Yes I think you are right. I did ask at the hospital why I couldnt see my scans etc and they said that patients may interpret them incorrectly and get over concerned
To be honest, I have lost my “ Cohanas”...that means balls since I have been living in Ireland. If we were in Texas, there absolutely would not be a problem of getting records. Thank you for putting a spark in our bums...Texas term...boodies.
Hi there I’d quite happily swap my medical notes for yours if that’s all I had to worry about.and I’m not saying that’s all you have to worry about but I wouldn’t mind having that as the only thing on mine (shrinking lol).paul
Thanks Paul, I'll put them in the post, signed for of course 😁😁 I was surprised by the omissions on my records. cirrhosis sufferers just want to see their blood and scan results, so it's very frustrating . I will go back to my old method of asking for a paper copy of them at my surgery. A waste of their time and mine, when the Patient Access app has a section for test results.
David
I can see all my blood results on my access along with all correspondence.
Thanks Osidge, for the heads up. Maybe you have to request for them to be included. I will investigate this on Monday, but it might be a postcode lottery.
My GP is on Patient Access. Each GP practice can decide what elements they enable, so what my GP has enabled may be different to what your GP has enabled. For example, I can see all my blood test results IF they have been requested by the GP, but not the blood test results requested by my specialist as his hospital is not on Patient Access and is in a different NHS trust area. Unlike you, I can't see any correspondence between my specialist and my GP via Patient Access as that hasnt been 'enabled. What i can see is medications, test results, consultations with my GP or other practice staff (including telephone consults) but not what was discussed just the date and a brief description ie 'oral thrush' when i needed antibiotics. Also immunisations and allergies. With the blood test results the clever thing is you can export them into a spread sheet, so you can track them over time. I can order prescriptions and make appointments. For some things you have to ask your GP reception to enable the function for you. I did ask my GP about whether they would ulitmately include correspondence and they decided not to, on the basis that some patients might be alarmed by the content (lets say a patient is being investigated for cancer but doesnt have a diagnosis, this might panic some patients unecessarily before the investigations were complete), or might mis-interperet medical jargon - most of us are guilty of 'googling' stuff and getting the wrong information, etc.
Thanks for your reply. Yes I thought it might be down to the individual practice as to what you can see. All of my blood tests are through the consultant, so maybe I have to request access to them. I appreciate that some patients might be alarmed by the content of some correspondence, but I personally always want to know the unfettered truth, no matter how bad it might be. I just want the blood test results for comparison with previous ones, rather than my consultants comment "your bloods are OK" I know I have a very low platelet count, which is why I bleed easily, so I know my bloods are not "OK". I said this to him, but he said "it was not of concern" I just don't trust him anymore. I'm way past the googling stuff, I now need more informed info.
My experience is there are very few hospitals in the UK that have patient electronic access to blood test (or any other) results. The lab in the hospital wont, I imagine, have any means of uploading test results onto your GP's Patient Access account. I've never seen my hospital blood test results, though they are visible on the computer screen during outpatient appointments. In my case I have all of my bloods done by my GP, as I have to have them done 3 monthly and only see my consultant at the hospital 6 monthly. Is your GP not involved in your liver care at all? Does the consultant send copies of the path lab printouts to your GP, or does the consultant just write a summary letter to your GP?
Hi, yes my GP has access to my blood results, as I asked for a copy last time. My consultant never gives me actual results, just saying they are OK, which I know they are not, as in my previous post, I thought all patient records were available across the NHS, bt GP's, Hospitals etc. My GP referred me to gastroenterology, but since then has not been involved. I did see him earlier this year about stronger pain medication suggested by my consultant, but refused to give me tramadol or any opiate based pain relief, because it is addictive. I got paracetamol instead even though I told him it doesn't work. Of course, Ibuprofen is a no no. I will probably just go back to requesting my blood results the way I used to before I had Patient Access. Thanks for your reply.
Difficult to understand why I can get all of my diabetic blood results on the Scottish website but no sign of liver results. Joined up thinking seems beyond NHS
If your hospital consultant is regularly sending paper (?) copies of your test results to your GP, its definitely worth asking your GP reception staff if your GP practice enables patients to see test results via Patient Access. Assuming, that is, someone at your GP practice is employed to physically upload the data to Patient Access. As you say, it would save them time and money and be really useful to you. Patient records, however, are not unified across the entire NHS, it varies considerably. There are 207 clinical commissioning groups within the NHS, they are the people that hold the purse strings, and over 130 different Trusts, each of which can contract out their IT systems to whoever they please. Which means hospital A's IT system isnt necessarily the same as hospital or GP practice B, which means data uploaded at one isnt automatically visible to another. Some GP's will give out test results on paper freely, some are reluctant, some charge for it. In fact the data belongs to the person who requested it and therefore paid for it, though one would assume its 'our' data and therefore 'ours'. The problem with allowing all patients to see all information is that the doctor has to make an initial judgement call as to who will cope with this level of information, and who might not. TBH, on the FB group I'm a member of for the liver condition I have, we have people posting their biopsy reports asking for them to be 'translated' from medspeak and laymen can get this wildly wrong! I know it's frustrating to have a doctor declare your results 'ok' (in my GP they label out of range results for me 'abnormal, no action), but probably what they mean is 'ok for your condition at the moment'. There's not a lot you can do about low platelets unfortunately, it probably means they are pooling in your spleen (if you have an ultrasound, ask the technician to measure your spleen, normal is around 10cm across I was told) due to your cirrhosis. We have members in our FB group with levels as low as 30 when normal is around 150-450 depending on the lab. They are still walking around ok, but do have enlarged spleens so have to be careful not to engage in impact sports etc so that their abdomen doesnt take a knock.
Many thanks for your very informative post. I will see if I can speak to the practice manager ( he was the one who enabled my medical records in the first place) to see if he can add add my test results for me to access. I always have my bloods taken at my local hospital, because my GP practice, although in Bucks, send their blood samples taken in the surgery, to Hillingdon, Middlesex, to be processed, so can't be seen by my consultant. Yes, my spleen is 19 cms, so very enlarged. They always tell me at my US scan how much it has enlarged from last time. The constant pain I get inside my rib cage on both sides, I am sure is due to the combination of enlarged liver and spleen, which gets worse after I have eaten, sometimes, giving me breathing difficulties. I guess it must be the Glissons capsule giving the pain as the liver has no nerves. Interestingly, my consultant said the pain is not caused by my liver, but is probably angina. I replied I have had a full heart investigation and tests, and have a heart monitor inserted in my chest working 24/7, but he wouldn't budge from his opinion. My wife was a Matron at High Wycombe and Stoke Mandeville Hospitals pre-retirement, so is very knowledgeable in all things medical, so i am always well informed. My platelet level was 28 on my last blood test. Once again, thank you for taking the time with your comprehensive reply.
Sorry to hear that NHS doesn't automatically post your blood work.
We are in the US and luckily we can go online to a patient account and not only see his current bloodwork values but past ones also, so we can compare them on one sheet. I print them so we can take the copies to his other doctors, rather than automatically having bloodwork at each & every doctor appt.
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