So I will try and keep this brief. I had some time sensitive immunology bloods and methotrexate monitoring bloods done last week 10th October.
I rang GP’s today to get the usual run around how the mtx monitoring isn’t looked at by GP’s etc etc so as usual I had to spout freedom of information act.
Well it turns out not that I was told by GP’s took another 3 phone calls to rheumatology department that the blood bottles were discarded. So I had to get them redone. This put me in a bit of a panic as I only have one injection left and know my prescription won’t be done unless blood test results are in. On top of that what about my immunology bloods they were time sensitive were they discarded too ?
It took me 3 hours there and back on public transport which I haven’t dared use for almost three years, to get the bloods done in the first place and two Phlebo’s six attempts to get blood and I’m still black and blue.
I had to ring immunology but thankfully their sample was ok phew 😥
my question to you all is how do you monitor your bloods when you have no access to results and no one you ever speak to is medically trained and won’t give them out over the phone ? I’m VERY concerned as the reason I have severe hypogammaglobulaemia is that I wasn’t monitored whilst on RTX and as a result my immune system won’t ever recover. I’ve made a complaint to my rheumy secretary and I appreciate it isn’t her fault but wanted to make my consultant aware I wasn’t happy at all that I’m once again not being monitored.
what a cocked up system I’m furious have to get up tomorrow at stupid o’clock for a repeat test and god only knows whether I will get my new prescription in time once again this has been missed by everyone and it’s only because I’m vigilant that I know about it. Anyone else having the same issues ? How on earth do I monitor myself ? I’m not stupid enough to take matters in my own hands but if something is deranged I can at least bring it to someone’s attention as I had to last year when sputum sample showed severe infection and I quote ‘patient needs to see a doctor’ comment on result which I also had to tell rheumatology about a week later coz no one had informed me.
Thanks for letting me vent feel a little calmer just for putting it out there. Hope you’re all having a better day than me haha.
Written by
Leics
To view profiles and participate in discussions please or .
yeah have the NHS app but they totally refuse to put results on it. I’ve asked a million times and rheumatology don’t use it or any other one that would give me access to them unless I ring about 6 times to different parts of the department to then be told they won’t send a copy and won’t give results over the phone and ring my GP and person giving results isn’t medically trained and will give me a paper copy if I beg. I made a complaint to rheumy consultant secretary and she wanted to fob me off too but had already admitted that they get copies and it had been missed. I haven’t been informed by person doing prescription for mtx at hospital either and I’ve got tonight’s injection and that’s it. So no doubt I will have to ring them again to get it done urgently after bloods tomorrow at stupid o’clock. Sorry still moaning haha. Thanks for the suggestion 👍
Sorry to say - I would contact my MP and get them to sort it out on my behalf. Some MPs are quite good at that sort of thing - I suppose equally yours could be as useless as your GP and hospital but fingers crossed.
What you’re having to put up with is really not good enough. You are legally entitled to have a copy of your blood test results!
Yeah had to see my MP about cancelled appointments at least 10 times a year and that was pre covid. I’m hoping it can sort it myself just by someone agreeing to a shared care or something. The admin person I spoke to at GP’s this morning said it was disgraceful that I didn’t have access and she would be speaking to practice manager. I just hope I haven’t shot myself in the foot.
that’s just awful, best of luck with it, hope you get a result. Wonder if your MP has figured out yet that there’s a problem with your hospital / doctor?
Good luck with it all, you can do without all this.
I hear you. 💗 I know of your severe hypogamma as we’ve talked before. Difficult often for us to get results but my rheumy nurse sends out my routine ones which include my Ig’s. Since being assigned an immunologist in August 2021 he usually sends out my B cells print outs/lab reports in detail and anything else he’s requested and phones me too with them. However, he’s been on sick leave for the past month so I haven’t had anything back from him. I am glad you got those bloods done again but you shouldn’t have had to.
I asked for my results by sending a letter and an email to the rheumy too when I started to become hypogamma and needed to check frequently. That was 4 years ago. They were in agreement. Before then my rheumy nurse would do a print out each time she saw me at Rtx clinic and then inbetween Rtx I got the secretary to send them. I email a reminder request after my bloods being done at my GP nurse and the rheumy sec posts out the results/print out in table form with the last 6-12 months results on too. I hope you can do something similar. Like myself and many others on Rtx or who were on it, and got hypogamma, we need to monitor the Ig’s closely if they’ve been severely depleted. (I know yours were totally wiped but I recall them coming back a bit last time you posted?)
Hope that’s still the case 🙏🏻 you’re improving, but I’m aware even at borderline hypogamma igG for example you can still be exhausted and have little resistance re infections as I have re chronic bronchitis. As soon as igG dropped <6 I was in a bad way with (chronic) bronchitis. I hope things go steadier and you can get your rheumy sec to help you re the results.
My NHS App only has some of the white and red cell results and not even CRP! Sometimes thyroid is on but nothing additional for the last few years. Too busy I guess. Good luck getting your results. 💗
Thanks Neonkittie, as a matter of fact I don’t get immunology results either so have asked numerous times for those too but they won’t share. Not even my GP gets to see them. The thing I’m most worried about is how many patients end up in hospital because of antiquated outdated systems. I’m not withholding meds and not self medicating but if they won’t monitor me then I have to for my own health and all I will do with the information is bring it to their attention so I’m not shipped off to A&E again due to a cock up. I used to work in pathology and the reference ranges are always with results so it doesn’t take Einstein to see if they’re deranged. Makes sense to at least have a look or am I being unreasonable? I’ve no idea what my IGg’s or anything else are doing and all I get it we aren’t medically trained so won’t read out results !! Email requests aren’t permitted at the Leicester royal infirmary they have absolutely no system in place for anything like that hence I made a complaint this morning as they’re withholding mtx until I get my bloods done at 7.40am tomorrow 🙄
It seems bonkers, Leics that someome with hypogamma like yours isn’t being allowed to know their Ig’s. 🤬 Would the GP be able to support you and write to the rheumy and immunologist saying this is exactly how you got into the situation you’re in as you weren’t monitored properly? My rheumy sec prefers emails now as it got too crazy for her with so many calls from patients.
yeah definitely think I need to either see the practice manager or the head GP to sort something out. I realise that the NHS is so under pressure and understaffed so if someone like me wants to be proactive and try and stay healthy and do to some extent what they’re told then why make it so difficult. I’m more stable with regards to my RA than I have been for 15 years and for that I’m extremely grateful (but mostly my suggestion to give Mtx another go) I’m not going to darken their doors as often as I have been if I manage to get to remission and I’m really hoping I’m getting there. But if they stop meds for something that isn’t technically their fault but definitely not mine then come on give me a break they get copies look at them or let me do it.
I hope you or the GP can persuade rheumatology and immunology to let you have access. The results are emboldened and asterisked if they are out of range on my print outs. The results should not be some sort of secret you can’t access. It’s your blood! Was it the rheumy who told you originally the Ig’s were hypogamma? In fact it makes me wonder how they missed those out of range immunoglobulins on their screens in your results. They are often highlighted in red too on screen. I do hope you can resolve this soon.
Only if a doctor/consultant thinks a patient knowing a result would have a really adverse effect on them should a blood test result be withheld I was told by a GP once. Didn’t apply to me but he was just talking about getting results back.
When I went for last Rtx infusion the doc I saw who was just checking I was ok to have it said ‘I think I need to speak to your consultant as I’m concerned about your results and toddled off, my consultant at that time was never there so infusion went ahead. I should have put my coat on and left but didn’t coz I figured that someone had spoken to someone else apparently not. Anyway about six months later my GP rang me out of the blue and said she was sending me to haematology for a spinal tap coz of my immunoglobulins and she was very worried about them and I needed to have them looked at. Eventually haematology discharged me as they realised it was a immuno / rheumy problem and I said well how about a referral to immuno before you discharge me. I’ve had no treatment from immunology except blood tests and a suggestion of prophylactic antibiotics every day but by some miracle I’ve managed to stay healthy until a couple of years ago when I got an infection and last year when I had a terrible antibiotic resistant infection of the chest only managed to have two months this year without coughing and every slight cold goes to my chest too. I always take a sneak peak at screen when I see immuno which is only every six months and the IgG have been in the red zone and all the other ones too until this year they’re now yellow haha. Rheumy won’t take responsibility for hypogamma they try and persuade me they were low before but I have print outs and they were fine so not having that whether the Rtx has sparked up a predisposition for low immunoglobulins I won’t ever know but there’s no family history of it.
HI, I don't need to know blood results because they will contact me if things not right. So you really don't need to chase results. No news is good news
Yeah you’re right and I wouldn’t if there weren’t serious consequences before. This time they’re withholding meds because bloods weren’t ‘done’ but had they bothered to check them they’d have seen that they were discarded by the lab as they weren’t labelled by the phlebo’s. I’ve had more than one very serious event before and I’m not willing to risk them again. I already have a life long condition through lack of monitoring so yeah you’re right no news is good news but there has to be some trust in there too and I’ve learned the hard way I’m afraid.
I feel for you Leics because when you’ve been burned more than once, you do have trust issues. I would agree that I find it hard to believed that no news is good news when I’ve had serious issues slip through the net.
There has to be a better mechanism in place for more complex patients who are under the care of multiple specialists. I’ve lost all faith in any joint up heath care, so I’m doing a 3 hour round trip for a quick blood test in immunology next week which is ridiculous when my GP surgery is half a mile from my house.
I don’t have any magic answers but it’s certainly a system wide problem.
Thank you crashdoll it’s the pits isn’t it. I had to use public transport to go to the hospital as I was told the immunology bloods were time sensitive and had to be done exactly four weeks after pneumonia vaccination and only at the hospital as they had to be same day. It took me three hours to get there and back (which was a big risk for me in the first place). Two phlebo’s six attempts to get blood so I’m black and blue only to find out 8 days later that the rheumy bloods I had at the same time were discarded as they were incorrectly labelled. After speaking with immuno in a bit of a panic to check their sample was ok they rang me back and it’s still sitting in the lab and hasn’t been sent off yet ???? So where is the ‘time sensitive’ bit then. You can bet your life that I could have had bloods done at GP’s and probably you could too but we do occasionally do as we are told. And yeah I don’t trust them much unfortunately been burned too many times and had to put up with the consequences. Stay safe crashdoll hope there’s not a massive queue when you go to have yours done there was when I went.
My GP doesn’t even look at mine and results line is manned by someone who isn’t medically trained and very resistant to looking and printing copies. They won’t give me results over the phone, won’t upload them to NHS app. I will have to try and sort something out so I don’t have the battle every month I am supposed to be monitored for mtx and GP supplies my folic acid so doesn’t that make it shared care ? I dunno I’d like to think that I was taking some of the pressure off the NHS staff but apparently not. The admin assistant I spoke to today was mortified that I didn’t have access and wasn’t monitored but that’s perhaps coz she saw that bloods had been discarded lol and no one had told me.
If you ask for your results they must have a mechanism for reporting back to you. Perhaps contact the practice manager, by email so that you have a copy too. Written requests in my experience always get better action.
Sometimes playing a bit daft workst too. Ask how you should access your results ?
But don't give up until you get a result. Good luck.
Thanks Mmrr I will do that great suggestion. Don’t really care about rheumy results as they’re usually fine but no meds when I’ve battled so hard to get this RA a little more controlled just made me spit the dummy out. I was very concerned about time sensitive immuno bloods but dodged a bullet this time with that one. I will get over it I’m very glad of your suggestion and support though.
I am so sorry to hear you have been needlessly going through the mill and sometimes wonder if we didn't keep abreast of our health, monitoring it and our medication who would. I know this is not the case for all, but for others it is or has become a constant battle. So I am glad you brought this to someones attention.
its just crazy its your blood so you should be able to get your results you would have thought. i have a slightly different problem. I can get the blood results on NhS App but not a urine test result which is bonkers as its a Renal page for a kidney problem, you couldn't make it up 🤪
You’re right that’s a needlessly annoying and stupid situation. I just don’t get it. If you can’t monitor yourself and bring problems to peoples attention when they constantly miss it then who can. So frustrating isn’t it 🤦♀️
i have my bloods taken at the doctors every month at present, they fill in a yellow card that consultant at the hospital give me with my results each time I go. Any problems in my bloods I get a phone call from the doctors to tell me what to do. Good luck sorting it all out.
Yeah I usually have my bloods done at GP’s with my own form. I always write ‘copy to GP’ on it and the surgery details so I know they should have a copy of it. But they say ‘they’re hospital bloods ring the hospital, and they won’t give me the results over the phone as they’re not medically trained 🤷♀️ I always have a fight with GP and virtually beg for a copy and my god they’re so resistant to do it. I just don’t want to be taking up valuable appointments for repeat bloods etc etc for the sake of having a copy. Been this AM for repeat rheumy bloods which have had to go urgently as I’m out of meds now and prescription for mtx won’t be done until results are in. Hospital should have picked it up and so should the GP but they only knew when I fought for the results again. Asked to see the practice manager this morning and they’ll get back to me or so they said. No doubt another ‘it’s not our problem’ conversation but if they won’t help or can’t I will put it in writing to whoever will do something about it.
Sorry to hear that you are getting so much trouble. I am under shared health care with my consultant for RA and consultant for bronciactsis and Asthma, all results to from them both to each other and my GP. My doctor can ring for help if I have a problem. I hope you can get sorted out very soon. Good luck, take care and sta safe.
firstly check if you are under the shqred care protocol. If so go shoukd monitor and review bloods. If script comes from the hospital you should be monitored there. I would have a chat with yr rheum nurse. Finally all blood results should be written in the purple mtx booklet. Get on that phone love!
I’ve asked to see practice manager this morning to see about shared care. All I’ve got so far is the hospital supply the meds they should be monitoring you. Like I don’t know that haha. Got my stubborn boots on now coz GP doesn’t get my immunology results either and that’s another really big issue. Thanks though.
So practice manager has just rang from GP’s all they’ve done is give me a number for patient liaison service at the hospital and more or less said it’s not our problem. You couldn’t make it up could you ? 🤦♀️🤯
Good Morning. Sorry to read about your fiasco. I was directed by my Health Team to use the "Patients Know Best" Web site. I am under 2 health Authorities for my care. ( EAST and West Sussex) All my results come into this site whatever they are including Consultant letters, Hospital visits etc. Hope this helps.
Oh that would be brilliant but the hospital and my GP’s don’t subscribe to anything like that. I have got the odd result on my NHS app but they’ve not been uploaded without a fight so someone is able to do it. They’re only routine monitoring bloods and are usually fine but if samples are discarded then I need to be informed and once again I wasn’t.
It might be worth inquiring if your health authority do subscribe to this or whether you can subscribe yourself.. I have just looked up PKB and you can opt into site via the NHS app without having an invite from your NHS team.
I will have a look thanks but I’ve been told by immuno, rheumatology and GP’s they don’t allow patients access to results god knows why. I totally understand that the hospital should be monitoring me for Mtx but they’re not or they would have told me that my bloods had been discarded and needed to repeat them before I ran out of meds. Whilst everyone is sympathetic no one so far is helpful and I really don’t want to make a complaint.
unfortunately there’s no way for me to monitor my bloods either . I did put in a request for a print off of all my bloods for the last two years before I went to see a private rheumatologist and they had to honour that . Maybe if we all do that regularly, they will see how time consuming it is and start giving us access online 🙏 We all think how lucky we are to have ‘ free ‘ healthcare , but in view of what we are all paying for this ‘ service’ it’s just not good enough
I totally agree with you. I don’t want to take up their valuable time and have to get urgent appointments when stuff like this is missed. The thing that does worry me is how many people are seriously ill and don’t know about it ? I’m lucky I’m not in that situation but this is 2022 not the 1800’s. Some of it is that the hospital use a different system to the GP and someone has to look at it unless they get a paper copy (and in my case I know they do) but they don’t look at that either unless they’re nagged usually coz I’ve picked up a problem.
Yeah me too it drags you down doesn’t it. I don’t enjoy complaining and I detest having to go and see my GP when I’m ill because they don’t know me from Adam even though I’ve been with the practice for 30 years that shows how often I go. Once in a blue moon when I absolutely have to. Same with rheumy and immunology. They’re lovely but overworked with too many patients so I minimise contact if I can. Apart from that my husband has to take annual leave from work to take me there and back and I’m hoping if I get to a resemblance of remission we can use his annual leave for something better.
I only get bloods done at the hospital as they issue prescription for tocilizumab. The only way I can get my results is to ring rheumatology line and leave a message asking for them to send them out to me by,post. Until recently the GPs couldn’t access them online so I used to then have to take a copy round to the GPs for them to scan onto my notes! They can at least see them online now. I always get a call from rheumatology nurses if there’s something not right, which happens often as I always have low neutrophils/white cell count but I do ask for a copy myself every few months just for my own knowledge. I live in hope that one day soon I will be able to view them online myself!
My god that’s more antiquated than my system. What a joke that is. I’m sorry you have to go through all that but also know you understand where I’m coming from. My rheumy team totally and utterly refuse to send copies out to patients but if I had access they wouldn’t need to and neither would my GP therefore saving time valuable resources and urgent appointments. Only been on mtx 12 weeks and this is the 3rd time there has been a cock up. Hopefully I will get the practice manager to sort something out, I’ve asked this morning so 🤞
poor u….we have enough to contend with, without fighting to get help/info. I have a blood test done before my infusions, which they check, and I get an email from hospital so I can view my results. Not that i understand them fully but can see if things are out of range
That’s what I want to do. Not rocket science is it ? Unfortunately my immune system was knocked completely out in 2013 and that was down to not being monitored. So I’m sorry but I don’t need any life long issues for the sake of trying to keep myself healthy. I’m sure someone will see sense and I’m also pretty sure that it’s possible to do. I’ve signed every form known to man on several occasions giving everyone access to my records so why not me ? Obviously they think I’m going to take matters in my own hands or something but all I’m going to do is keep an eye on things and basically make their job easier if they’ll let me. I never cause any problems never see GP or consultant unless I absolutely have to, I just don’t get it. One day the freedom of information act will also include the patient haha.
very frustrating. I get my blood tests done at hospital, my consultant puts note to send result to GP , I can see results on the NHS app within 48 hours or call the nurse advise line at hospital the following day for results. If I get blood test done at surgery it takes 7 working days for the result.
Yeah GP’s like to tell you that it takes 7 working days but that’s not true they get the results the same time as the consultant (I know this for a fact after working for 10 years in pathology). It’s electronically available to GP and they also get a paper copy sent to them within 24 hours. That does sometimes depend on the tests requested but if they standard U&E’s, LFT, CRP and FBC then absolutely 2 days max and that’s coz there’s been a problem with a backlog in the lab for some reason usually computer going down. I have the NHS app and would love to be able to see them. Getting an appointment for a blood test is another thing haha.
Thank you unfortunately not neither the hospital nor GP will subscribe to that as I’ve asked a million times. Our NHS trust don’t do anything like that and I’ve asked why the hell not haha. Would be so much easier for everyone if they did or use the NHS app which once in a blue moon I get results on so I know it’s possible.
it’s utterly ridiculous that you can’t access them. I get mine both through the nhs app and patient access app. I agree it’s imperative that we can monitor ourselves. I’ve had several incidents where they haven’t picked up issues. I’ve also had my GP panic at slightly raised WCC despite that being the normal for me, and rheumatologist not being concerned. It was only by me knowing my own results that I was able to point this out to her. Do you have shared care?, if so your GP should make them available to you. I would put a request in writing, even potentially cc the CQC in on it.
Most GPs would be grateful in todays busy times, that patients can assist in monitoring. I have a list of what warrants stopping MTX, so I know when to escalate. Hope you can resolve it soon.
Well it seems I’m going to have to rattle some cages. Asked to see GP practice manager and she rang me back a little while ago. They’re not interested gave me a number for patient liaison service at the hospital. GP’s practice are going to do nothing and I said at the end of the day all I’m trying to do is save your resources and valuable time. What I don’t need or want again is to be shipped off to A&E and spend 7 hours waiting with a compromised immune system due to an error (I had someone else’s blood results) the bottles had been mixed up, I took a week for GP to inform me I had to go ASAP so some poor sod had very deranged results and they wouldn’t have ever known. I’m a bit dejected this morning I guess I will have to make an official complaint which I don’t want to do.
that’s absurd. Why are they so resistant to doing what most practices are already doing. That’s shocking re mixing up of bloods, I was a nurse for 34yrs, and fail to comprehend how they can mix up bottles if following protocol.
I recently had an extremely painful throat, with lots of white at the very back of throat. I’ve previously had fungal oesophagitis so didn’t want a repeat. I’d been off my MTX for a few weeks due to a UTI I had been dealing with. The urgent care centre Dr went into panic mode when I mentioned my sore throat and that I usuu it ally took MTX. He insisted I go immediately to A&E as I was potentially neutropenic, and the sore throat was concerning. I tried to explain this throat issue has appeared whilst off MTX, with no joy. I’m on 5 immunosuppressants, so like you wasn’t relishing sitting in a busy A&E dept. The Dr I seen agreed with me, that it wasn’t related to my MTX which I had been stable on for years, and had omitted for the previous 2 weeks. Thankfully because it was recorded as ? Neutropenic l was rushed through the system and out 1.5hrs later once bloods confirmed no issues. I’m sorry you are having to fight the system. Is it worth getting your mp involved?
I’m beginning to wonder. Just spoken to PILs they’ve said that the hospital doesn’t allow and hasn’t got a system for patients to have any access to their test results but apparently they’re working on it. Said I could make a complaint but what for ? GP practice manager won’t help either she was the one who gave me the number for PILs. So told by rheumy to ring my GP and get them to give me a copy (which they won’t do coz they’re hospital bloods) and are always livid that hospital aren’t monitoring me. I sooo get it that I need someone to monitor me and it’s technically not a GP problem but they’re the ones who have to pick the pieces up after cock ups. My hubby had skin cancer and it took them a month before they checked the results and got him referred for further surgery. How many more people is this happening to ? I’m so lucky that atm my bloods seem ok but it’s taken me 15 excruciating years to stabilise my RA and now I have no meds again coz of a blunder. So the rest of my week will consist of ringing the world and his wife if they bother to answer the phone to get it organised before Tuesday next week.
the only other suggestion I can think of, is to contact your local CCG who your GPS answer to, and who lay down the rules they follow. From what I recall if emailing you have to give your full postal address to prove you are in their catchment area.
have just seen that CCGs ceased to exist from July this year. They have been superseded by what they called Integrated Care Partnership (ICP). They may still be able to help as they are dealing with inequalities in care. Here’s a link explaining their role, it may help.
Thank you for the link I’ve had a read but to be honest although I’m frustrated I’m pretty sure there are others who are in much more need of care packages than me. Although I’d like to be a champion to make things like this available to all that want it I don’t think I would have that much fight in me. I really appreciate all your advice with this though and thank you wholeheartedly. Bless you, I will get over it until next time haha.
YEs I've had a similar thing. My white cell count and neutrophils are always low but the rheumy consultant is ok with it as long as neutrophils don't drop below one. Had a blood test for something at the GPs a few months ago, next day, panicked phone call from GP about the results. I asked him was it the neutrophils and he said yes so I explained what the consultant had said. It's only because I know my own results that I was able to tell the GP the situation.
Yeah shame you have to inform your GP about yourself I’m sure if they’d bothered to check your previous results would have shown the trend. Hey ho that’s a result really as at least they’ve got your back so to speak and I wouldn’t personally be upset about them checking they can do that if they want to when they want to but might be waiting a while for that to happen 😂. My last really serious derangement of bloods only took a week for GP to notice so dutifully shipped off to A&E but they weren’t my results and I was told I had to go again the next day to have them done again just in case don’t know who’s results they were but I think they would have been really poorly. I did ask them to investigate but I doubt they ever found out which makes me sad. For me it was just 7 hours in A&E and then another 4 hours the next day to make sure so better late than never and at least they were checking so I can’t have it all ways can I ? and GP was doing a good job in my book.
Yeah I think so too and I feel absolutely awful about it. But who knows where the mistake was GP’s or lab although I’m doubting it’s the lab too many safeguards in place.
yes I’m sure if it had been my gp she would have understood. The urgent care centre is run by a GP not connected to my surgery. It just seemed crazy putting me at risk of covid sitting in a busy waiting room, knowing my bloods ids were going to be the usual.
My gp did call a few days later insisting I don’t restart MTX as WCC was slightly raised. I explained to her I’d spoken with the rheumatology nurse that day, and they were happy to resume, as I’d completed antibiotics, and she said it would stop slowly over time. So she accepted that. She does panic though, I’ve had 2 phone calls, 1 panicking telling me my heart was enlarged, the 2nd was to say my CT of lungs had come back showing pulmonary fibrosis. Quite a shock when your not expecting it. I now understand that is her manner and ask for the reports to be printed for me to read and research. Thankfully it turned out not to be pulmonary fibrosis, but gir 7 months I was told I had a 2-5yr life expectancy, and I was 55 at the time. Just as well I cope with anything thrown at me 😂🤗
I know I’m strong and can cope with a lot and have had to but being told your life expectancy is only a couple of years must have been tough for you. Thankfully they were wrong and you’ve lived to tell the tale. Even if you’ve got awful problems to cope with on a daily basis. How does the saying go ‘what doesn’t kill you makes you stronger’. We have to deal with the cards we are dealt I suppose, my best friend who is younger than me has a heart defect that could kill her at anytime and on top of that she has the worst kind of MS you wouldn’t know it though she tries to live every day to the fullest and always puts others before herself.
yes it certainly does make you stronger 🤪👍. Thankfully although my lung is damaged from aspirating acid, it shouldn’t progress as long as I don’t aspirate more. It’s being monitored as it can turn into pulmonary fibrosis, but I don’t stress about that as it’s being monitored closely. Take care of yourself and hope you sort things out 🤗
Thank you I will try. You too it seems that my issues are ridiculous compared to what you and others have to endure. I should think myself lucky I suppose. Hope you stay well.
Yeah I can’t and they won’t put them on although I know they can because I’ve seen some of them before. Under medical records ‘test results’ I check them after each blood test but they’re never there for me to see and GP isn’t interested in shared care allowing me access coz I’ve asked again today. So well and truly stuck.
I have always either had my bloods done at the local GP or hospital. My previous surgery gave me a readout of my results each time I went for the next lot. Unfortunately my current surgery does not. and I have to remember to ask them to print the results out for me pick up. I usually forget these days I have to say. My GP is also supposed to email copies to my rheumatology team which is in a different area so they can't see them on their computer system. They do not and I have to hope that whoever checks the results at the GP's know what they're doing.
Oh that’s a bad situation for you and a pretty dangerous one too if you ask me. I’ve found lack of communication between departments astounding at times. My GP has to be made aware that I have severe hypogammaglobulaemia because they don’t get results from immuno and aren’t aware of my conditions or meds or lack there of unless I tell them. My records are incorrect too I’ve noticed they’ve said I’m allergic to certain antibiotics when I’m not given the wrong dates for previous surgeries etc etc. This is the reason I want to be able to monitor myself because I’m well aware of the dates I had cancer surgery and more than aware what I’m allergic to and not as an ambulance ride and a 7 hour fit is not something you forget. I will keep everything crossed for you that they’re looking after you properly.
sorry to hear about your difficulty in obtaining the results of your blood tests. where I live, we have access to an NHS app called mycare. It's monitored by our hospital. Every test's we have either from the hospital or our GP gets put on it. We are informed by email or text that we have new test results or appointments. I know I am very lucky to have this system available. I used to live in Leicester and know that they are far behind other NHS trusts.
The NHS shouldn't be a postcode lottery, and everyone should be able to have access the same information.
Please keep asking your GP for these results, you could try writing to Edward Argar MP for Charnwood for help. He used to be a junior help minister.
Yeah Leicester is still in the dark ages. I’ve been informed by PILS this morning that they don’t and won’t probably for the foreseeable future have a system for monitoring of test results or patient access to them via NHS or any other APP. So the fight goes on for me it seems I will have to beg and fight my corner every month with the admin assistants who look at results but aren’t medically trained so won’t give them out over the phone and will then have to beg for a copy. What a waste of their time and mine.
never had blood results! Just told your bloods are okay from consultation! At my hospital each dept works independently they do not talk to each other about results. I had an eye issue in the next room to RA. A nd they did not discuss me as a whole!!
Crackers isn’t it. Lack of communication between departments etc is shocking. I have to say my rheumy consultant is excellent and I definitely don’t have any complaints about his care but lack of monitoring due to staff shortages probably and antiquated computer systems that aren’t cohesive are a pain in the bum. Doesn’t anyone realise that the pressure would be reduced for them if patients could have some access to their own healthcare and not wait until it’s too late. I’m so jealous of those lucky people who have some say in their healthcare whether it’s by seeing their own results or being informed if there’s issues. But then again I have a great consultant so suppose I can’t have it all haha.
my issue is relying on hospital to send prescription to health at home and then they deliver baricitinib. Every time my tablets are low I panic and prescription is not ready! I prefer being in control of my meds
Yeah had similar issues before when I was on Baricitanib so I’m with you on that one. I suppose I should be grateful that my meds are supplied by the hospital but unfortunately the system isn’t working and I keep having to chase things up which I don’t want to do. I really don’t want to be a pain and have to try and ring rheumy staff because I’ve ran out of meds again but it keeps happening. I don’t ever darken GP or consultants doors unless I’m absolutely at my wits end and can bare the pain no longer. My RA is just starting to be a little more controlled after 15 long years of hell and I’m very positive that at long last I may have a future. Hence the frustration I’m feeling atm.
I will try but I’ve hit all the brick walls. GP practice manager says no, Pils say No, Rheumy says can’t do it don’t have the system in place same with immuno so I give up I think.
Oh if I could afford it I so would without doubt. I am a tax payer and also pay national insurance so doesn’t that mean I pay towards the NHS ? I’m not complaining I’m trying to make things easier for the over worked under paid staff by looking after myself. I don’t want to make life difficult or have this rotten disease but I have it and there’s nothing I can do about that. I just needed to let off steam and see if anyone had any solution that may be helpful to me wouldn’t want to offend anyone.
yes, most people do, however at the end of the day you are not paying for it, health care is very expensive and it’s very heavily subsidised. Would you prefer to have no subsidy at all?
Well I paid for my cancer treatment by insurance as I had a policy through work. I’m afraid I’m finding your comments unhelpful. You don’t have to read my posts.
I don't know if this helps. I had a similar problem with the GP and the hospital not communicating about blood tests. I complained to the rheumy department and they agreed to do my bloods and get my prescription from the hospital pharmacy. It's gone smoother since then even though the hospital are not too happy about it.
oooh I will ask. I’ve informed rheumy consultant I’m not happy but I’m not sure there’s much he can do. He’s stuck with the system he’s not happy about either. I don’t want to be a difficult patient quite the contrary. I just want to take the pressure off them if I can. The hospital supply my meds to pharmacy the other side of the city and they close at 5.30 and my hubby doesn’t finish work until 5. So rush hour traffic isn’t easy. A taxi to pick them up would cost me £60+ and I can’t afford that. On this occasion if it hadn’t been for me chasing results I wouldn’t have known the bloods were discarded not that they are deranged this time with any luck but I’m out of meds and although I can get them delivered I have to ring the pharmacy at the hospital and arrange it and they have two members of staff to do it all but prescription isn’t done so the chances of getting it sorted before next week is remote.
I had this constantly for about 2 years. I feel your pain. Thankfully I drive and the hospital is 10 minutes away from my work. I often say to people that having RA is like a full time admin job in itself. It's okay for some folk to say they don't worry about things but they have obviously not had anything go wrong. I learned the hard way not to have blind trust.
Unfortunately me too this time just a frustrating error that’s left me chasing around again. But worse things have happened and I’m still here to moan about it once in a while. I sooo feel for the staff that are tied up with phone calls from patients asking where their meds are or why didn’t anyone tell them their tests were deranged. Just a simple solution to fix if patients want to be proactive and just keep track of themselves without bothering over worked staff. I was very proud to work for the NHS until I was robbed of it by RA I always went above and beyond what I was paid to do and thought about the patient waiting for results and how important it is to know them as I was and am 1 after all. I don’t think anyone can tell me how difficult it is to work in the NHS which is why I don’t make formal complaints and try if I can to take the pressure off them as far as I’m concerned. As I’ve said before I haven’t ever withheld meds without being told to, all I’ve done is politely bought it to someone’s attention when I’ve had an issue with mistakes or oversights.
when I go to the gp surgery for my blood tests I ask for a copy of the previous results to be printed for me, initially I had to sign a form requesting for this to happen which had a start date & end date on it, I wrote indefinitely, I still get asked occasionally to sign one if its not the regular phlebotomist taking my blood.
I've also asked about blood results requested by the hospital, again initially they said these were unavailable as they're held on the hospitals portal but, the phlebotomist was able & continues to print them for me now to.
when I went Monday & asked for the previous results & if they were OK, she said that I needed a telephone consultation with the gp & booked me one, my fear is if I hadn't asked would this have been picked up 🤔 I'm in South Wales.
wishing you the best with the battle as you shouldn't have to keep fighting
Sounds like no one has looked at your results either. That does put you at risk too. Sorry it’s not ideal for you either ☹️ Hope everything is ok and it’s just a glitch or a mistake and not worrying for you.
Hi Leics I can understand your frustration as monitoring is extremely important for you. I too have had trouble getting results in the past (general monitoring for being on DMARDS and biologics. I used to ask the medical secretaries for a copy of the blood tests but that seemed to be an issue. I now have "patient knows best nhs app" but everything now goes on it. I used to get hard copies of clinic letters but now have to print them out if I want them. At least I can see what my blood results are. In the past, the rheumy nurse would ask me to get a blood test and ask me to ring and leave a message on the helpline to let her know I had had it done and she would look out for the result! We need to get the results to see what's going on!
Going off topic a bit - I almost complained about one of the rhuemy nurses after I told her how much I was struggling (on a phone appointment) and asked if she could get me steroids. I didn't hear back from her, I even left a message with the medical secretary and she emailed her. A couple of days after speaking to her I went into an awful flare and was using a zimmer frame and in so much pain. Three day's after leaving the phone message another nurse on the helpline called back and I asked why hadn't they contacted a consultant or called me back. Anyway, she misunderstood and thought I was insisting I saw a consultant and she got me in the following week. By then I was even worse and went to the appointment with the zimmer frame - he said I was in a severe flare and gave me Prednisolone starting at 25mg. My GP had suggested I spoke to PALS which liaise between you and the hospital departments. I talked it over with them but in the end didn't do anything - still not sure this was the right decision ! It's hard complaining about the staff that are treating you! However, after seeing the consultant he kept me on and I have carried on seeing him rather than the nurses, and I am finally under much better control on Baricitinib.
Thank you I’ve tried PALS or PILS as it’s known in our NHS trust and they can’t help me either. They suggested I make a complaint but I don’t want to do that. I’ve given up I think I will just have to get over it and move on it seems. At least I understand better now that there isn’t a system in place for anyone in Leicester or Leicestershire to get a copy of their results unless their GP agree to it and mine won’t coz I’ve tried. So computer says no situation. Shared care what shared care ?
When I got covid and was chatting to the Dr at the CMD unit he said that the blood results are on a central database and that the GP can access them but not download them. He agreed it was a stupid system. Seems different all over the country. I'm in Leicester. I'd love to see my blood results. Dont know why it's so difficult for them to be put on the NHS app or something. My Dr wont use the NHS app anyway they use System Online but the info from that is all in the NHS app.
Yeah I use system online too but NHS app is better I think. Hey ho they’re not going to change it anytime soon I’ve been told. I don’t want people to think I’m complaining about the NHS far from it it’s second to non I’m really frustrated I can’t help myself and take the pressure off them.
Hi, Leics! Here in the US every doctor now has you log into their “patient portal” where you can see test results, leave questions to be answered, and check on appointments. See if your doctors have anything like this. That would help you a lot. It’s very annoying as each doctor requires you to set this up and each requires the same information but once set up you can get results more quickly.
Thank you for your suggestion however unfortunately in my area we don’t have anything so sensible. I’ve asked begged and pleaded with everyone I can think of and come to a grinding halt at every turn. I’m pleased you have the system though. I can order prescriptions from my GP and make appointments online but that’s it.
Hopefully, your system will change for the better soon. So much has changed here with healthcare, I don’t necessarily like it, but we adjust eventually. Best wishes for all good things!❤️
Thank you here’s hoping that we come in from the dark ages at some point. Can’t blame the staff and wouldn’t want too they’ve got enough to contend with. But unfortunately the antiquated system has left me with no medication again and no chance of getting it before my next injection which is due next week. Hey ho guess I will have to go and source a covid jab instead so swings and roundabouts I suppose. I don’t always agree with some changes either but mostly do as I’m told. I’m a bit bored though with having to chase bloods, having to inform them if there’s a problem, chasing for meds, chasing non existent appointments and then trying to get said medication delivered or available to pick up. End of moan not really like me I usually get on with it but this week has got me down that’s for sure.
it sure seems to be I shouldn’t complain really my RA is improving because of meds finally it’s been a long haul. Hopefully a pause won’t put me back to square one again 🤞have a good day. And thanks again.
yes it's a problem. I have to ask my gp for a print out of my blood test results. the gp does not monitor them properly because they assume stuff all over the place.
I did have a result ringing the hospital blood test department who emailed a copy of the results to me though.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Blood test fail. Sorry this is just a grumble!
Felt like Giving Up - Update 
Blood test results
What blood monitoring do I need with methotrexate?
