I was diagnosed with RA in January this year and started on methotrexate in early March. I am on 15mg a week and have been having regular calls with the rheumatology nurse and bloods ((3 x every 2 weeks, then 3 x monthly). I am due to have my next phone consultation with my rheumatology nurse on Tuesday but have received a copy of a letter she has sent to my GP saying that my indicators are all now normal and I can be passed to the care of my GP and move to three-monthly blood tests, which all sounds very positive. I spoke to my GP practice and they say that unless I request the results of my hospital blood tests and take them in to the practice, they won’t be able to see them. I don’t see how they can monitor me effectively unless they can see how I have been since diagnosis and starting on methotrexate! I will ask the rheumatology nurse on Tuesday, but wonder if anyone else has experience of this? Do you think putting a request in in writing is the best thing for me to do? I have another 2.5 months before my first GP blood test is due so plenty of time (I hope!) to get the test results back. Any advice from anyone who has been through this will be very helpful.
Blood test results: I was diagnosed with RA in January... - NRAS
Blood test results
My RA team email them to me and I pop them on email or drop them into the Doctors
Oh and when I moved my new GP said he would do the same tests as Ra team as add ons so I don’t have to keep chasing for the forms. So it depends on how efficient the Gp surgery you have or ra team!
I don’t understand why your hospital and GP surgery are not linked up in order to send results back and forward to each other……….Are you in the same area as your hospital because they will be sending all sorts of results to your surgery including digital letters etc.
It sounds very odd that you, the patient, have to do the leg work in what is such an easy process! I’d query that with your rheumatology team as in all the years I was a Practice nurse (now retired) we just had blood results sent to our surgery as a matter of course.
I now get my results sent from an entirely different area as I’m not treated at my local hospital and have never had a problem with transfer. If you’re not happy about it or get fobbed off do write to both your GP and the hospital team. We need our results to be seen asap by the treating physicians!
My GP and hospital are in the same area. The results from my first blood tests done by the hospital/rheumy team were sent to the GP, but this was because the GP referred me. Since then I have had six blood tests all booked by the rheumy team at the hospital and they, apparently, don't share them with my GP.
I despair! It’s all crackers and we have to negotiate our way through it so we’re informed enough to make some decisions for ourselves.
I love the NHS and have worked in it for over 40 years but the disjointedness of it has frustrated so many of us and it very often slows things up for patients and staff alike.
Same
It’s a pain isn’t it - mine don’t share automatically, but my GP will login to the hospital system to get them for me, but it can take up to 3 weeks for the hospital to upload them. I do always leave a message on the Rheumatology Helpline though on the day I have the tests done, they will call back after 48 hours, but only if the tests are abnormal. I do like to have a copy of the whole thing for my records though, but I do have to wait.
Same for me. If I have bloods done via GP I can see results online. If hospital Rheumatology do them I can't. They are not 'joined up'!
Yep I have the same problem. Ludicrous isn't it?!
I have a similar situation. Staggeringly idiotic. When things crop up in blood tests done by GP, they don't get forwarded to rheumatology and when I have a rheumatology appointment they apparetnly don't have automatic access to those GP blood results. So the last 2 lots I asked to have them printed out so I will take them with me.
It sounds like now you are settled on the right medication , your rheumatologist is setting up a shared care agreement with your GP …whereby he the rheumatologist - will monitor your blood tests and will pass on to your GP, any changes in your medication. GPs don’t prescribe RA meds..they just issue the prescription as instructed by the consultant.
Ask your Rheumatology Nurses if that is the case , at your next appointment on Tuesday.
And yes the medication seems to be settled and working. I feel pretty much human again which is a huge relief 😀
Oh yes…at the beginning of this unwanted RA journey we were all convinced we would be in pain forever & never walk normally again.
But once you accept life does go on…& see the light that Meds do work….it’s a breeze…well -sometimes!
Hope you continue to do well.
I'm on shared care. My bloods are taken at my GP surgery sent for testing and the results show up after a day at the surgery and can be seen by the hospital as well. If your GP does them for you then I would have thought that makes it work. I live in Sheffield.
My GP did my tests when they took over
if you get the NHS app, all your hospital blood tests are accessible. It is strange how it’s not ‘joined up’.
I have the NHS app but cannot see my hospital blood test results. Only my Gp's. They are rolling this out in certain areas but not all yet. I asked my GP surgery but they are not 'joined up' in the system yet.
My hospital blood tests aren't on that, my GP blood tests are. GP can see hospital tests, I can't. Go figure! Planning to ask consultant about it on Thursday but last year, no one in the rhuemy team knew anything about it 🙄
I remember I had to do something to get them - can’t remember what! It was as enabling some permission. I will check and see if I can remember what I did. I can’t see my GP blood tests. Have to log into my medical records in the surgery to get them.
Oh yes, that's how I see the surgery ones which I'm happy with; just wish that I could see the hospital ones as the regular ones are ordered by my rheumy team. I had to have some others done for the GP surgery as well as the rheumatology ones last week and the nurse commented that she had to take different tubes for each as they couldn't "share" - luckily I'm am "easy stick" so no problem giving lots! 😂
So, in the App - go to the Health tab and go to Test Results and Imaging. It says provided by Patients Know Best. I think the first time I had to give them permission. Then go to test results and all my blood tests are there. Might work for you?
On the NHS app I can only see my repeat prescription (I can't even request a repeat for the ones under shared care). The test results are available both to the hospital and the GP, but not to me. The GP practice say that they just don't have the staff or time to set up any more information on the app. If I want the results of blood tests I have to request and get a print out each time. I've been trying to change the system for YEARS, pointing out how much time they would save in the long-term.
I live in one area and see Rheumatology in another but Rheumatology can now view my results this past year. Before that I got a copy of results from Gp surgery and copied to Rheumatology team. This worked for over 15 years. If you are now having bloods taken at surgery they should get results sent back to them. They provide the blood forms. Then you can ask for a paper copy of results and email to your RA team who should provide an email address. You then will need to provide your hospital unit number and date of birth as a header. Hope this helps.
Oh goodness me I’ve had this same battle for years. When I have hospital bloods done at my GP surgery I have to write ‘copy to GP’ on the form and also if I have them done at the hospital. I’ve made complaints with the practice manager and asked to be on a shared care agreement) I’m also with immunology) I’ve never yet seen my immuno results. They always say at rheumatology if there’s a problem we will be in touch but I’ve been missed plenty of times so like to monitor my own results, it’s a ridiculous system and totally doesn’t work at all. I hope you have more joy than me 🙈.
Whoever told you that is talking absolute rubbish, the NHS IT spine can be seen by all doctors and surgeries nationwide, the idea is so any Healthcare person can check your record easily and see what meds or illness you suffer from, it saves time and could save your life, probably the person who told you was untrained or just stupid.
I moved area from Enfield to Herts 6 years ago but kept with my original rheumy at Enfield,so understand the problem with blood tests for me.I ask for copies to be sent from one to the other if needed and had no problems with this so far.They both seen quite happy with this arrangement,and have in fact just entered into a shared agreement for my osteoporosis jabs which means I don’t have to go back to Enfield from now on,which is good.I think I am just lucky with their cooperation.Good luck to work something out long term.
Hi, I would double check that with your GP as I believe it’s normal practise for every hospital to “cc” your GP with every letter/ results they send to the patient. I certainly have always seen on my copy that my GP had been copied in too. Good luck and good news your levels are all normal, may they continue to be x
First of all, every area, which used to be called the Clinical Commission Groups but have been rebranded as Integrated Care Boards (ICB) have their own systems. All GP surgeries, which are private businesses and are not run by the NHS, have their own electronic health records, the two main systems being Systmone and EMIS, but there are others. These systems have no interoperability.
Some hospital trusts, which are commissioned by the ICB, not run by the ICB, have electronic systems, others are still based on paper. There are several different ones, the company that provides Systmone also does a hospital version, but there are others. Community hospitals and mental health trusts also have different systems.
The NHS Spine is something different again. There is only limited data uploaded to the Spine, mainly to do with demographics, electronic prescribing and what is known as the Summary Care Record (SCR). That only contains basic important information, such as allergies, medication, and your name and address and demographic information. Additional information can be included such as diagnosis, significant medical history and specific communication needs, but if patient have previously told the NHS that they didn't want this uploaded to the spine, it won't be there. The Spine is also used for e-referrals.
So where does this leave patients? In a mess! None of these systems are interoperable, that is the computers don't talk to each other to share information. The only way that information can be shared is if there is a bridge between them. Some areas do have bridges, others don't. Bridges can move information from one system to another. The other way to see information is to have access to the system.
For instance where I live in Gloucestershire GPs can sign into a system called ICE where all the pathology results go from the path labs. People working in the hospitals can see those results by having sign-in permissions. GPs can also see those results if their surgeries have arranged with the path laps to be able to sign in. Once they do they can choose to download the results into the patients' GP records, but they don't have to, and it isn't automatic.
So what works for one person to get their blood test results won't work for another in another area. Not only that, not all NHS workers will know how to use all these systems or even have permission to sign into them. And don't get me started with private companies providing services to the NHS!
The second issue is shared care. Every ICB will have a shared care agreement and it should be available on the internet. You should also be given a copy of it because there will be a section that lays out what the patient's responsibilities are, as well as what the GP and consultant's responsibilities are.
I used the cared care agreement to tell the GP surgery what blood tests they should be doing and when. For instance they kept refusing to renew the prescription after I went from monthly to three monthly blood tests, and each time I had a receptionist on the phone trying to make an appointment for my 'over due blood test' and each time I had to explain it to her. She explained she was only doing what the surgery pharmacist was telling her to do. Finally I got so fed up I told the receptionist to ask the pharmacist to read the shared care agreement and look at the dates of my last blood tests. That must have worked as I stopped getting those calls.
So, get a copy of the shared care agreement that is specific for your ICB. Find out how the pathology reporting works in your area, you might need to contact PALS for this. And then hold everyone to account!
This is both fascinating and appalling. Do you know whether there have been any attempts to improve the situation by anyone at any time....?
There have been many attempts to improve the situation, but many failures too. for instance in my area hospitals have only just started using electronic records, but are still not using electronic prescribing. Yep, when I go to my rheumatologist and she prescribes something she writes it on a green slip, which means I have to physically go to a community chemist to have it filled, I can't even go to the hospital pharmacy. She then writes to the GP to ask them to take over prescribing. So I just wait until the GP does that so that I can use my online pharmacy. I live in a rural area where there are no community pharmacies.
In Gloucestershire they have been trying to get something called Joining Up Your Information (JUYI) going for years. About five years ago they said they were going to get the patient portal up and running next year. We are still waiting.
One of the problems is that the NHS hires unexperienced and untrained people to do IT. They get young kids that like to code, not realising that there a way more to computing than coding. In fact it is the coding that is done last after the systems are developed. Every year new ones arrive, realise that it is harder than they thought and leave again, and nothing ever changes.
I say this from the position of doing a PhD in computing and being an Expert by Experience, so I see the behind the scenes from both sides!
Gosh. So is the root of the problem the way in which the different organisations that make up the NHS have all been allowed to make individual choices in a system that really needs to be compatible? Is it strategic direction that is lacking, because it sounds as if there is alot of duplication of effort?
It seems a shame you have to have a work around when we were able to send people to the moon in the sixties.
Brilliantly explained! Thanks. Utter madness - but has been for all the years I’ve spent in the NHS attempting to get a joined up system for our patients. There are as many variations of ‘shared care’ as there are GP Practices and as is usual, the responsibility for efficient IT has never been grasped by anyone in power.
It is almost as if the biggest IT failure in NHS history was just the start, and it has been downhill every since! I blame the idea that competition for contracts makes things more efficient.
For anyone that is not aware of the big failure and how much it cost, here is an old newspaper article that explains it.
theguardian.com/society/201...
Thank you for the link. The sums wasted are eye watering. I suppose if you do not have an expert contracting team you may be at the mercy of large companies.
I have requested my rheumatology records since 2018 to current
I am in much the same position as you with methotrexate - sometimes the hospital does blood tests which are not forwarded to the GP. But the GP can, and does, make a request to the hospital for the results for his own record.
This is normal practce. The hospital should monitor the tests done at the phlebotomy dept; the doctor will monitor his own tests. If the GP requests a test, any test, he will be sent the results directly.
Have you registered on-line to be able to see your results? That way you can see how the results vary from test to test and also have your own record. I used to get print-outs of my results from the surgery but that method ended some while ago - it's now all done digitally.
Good Luck with the methotrexate - I've been taking it for 25 years and have never regretted it.
I can see all tests that the GP requested online, but none that rheumatology requested and the GP tells me that they can't see those either. I am going to ask the rheumatology nurse to send me copies of all the tests they have carried out and will give copies of those to my GP when I get them. Here's hoping!
I do find that puzzling - I was told by my GP that he could request any test done at the hospital. And when he has done so he lets me know if he has any comments. The hospital won't send results directly to me but, in any case, I can get them on-line from my records at any time via the nhs web site - as with GP tests.
I had some tests recently at the hospital when I had a consultaion in rheumatology. They were not the usual 3 monthly tests for the methotrexate.
I requested the results via the nhs site. This was very useful as I had a query about the result of the Vitamin D test. I spoke to a specialist nurse on the rheumatology Helpline, who reassured me. Even this Helpline won't always comment on results saying I should wait until I see the consultant at the next appointment. They do pass on messages sometimes if I'm very worried about a result. All this does vary depending on the Hospital Trust. And they certainly do vary!
It can be a bit of a faff sometimes as doctors differ in their approach - and I believe they do have the right to refuse access to results for some patients. What the criteria is for refusal will depend on the patient, I suppose; although I don't know of anyone who has been refused.
Anyway, I do hope it all works out for you.
I have had the same issues. I was diagnosed with RA in March and I have had to go back to my surgery 9 or 10 times to get the blood test results added to my Patient Access record. There is someone within the practice (Oxfordshire) who knows how to do this but the other members of staff aren't able to. I am astounded that what seems to be a basic IT issue has not been resolved. It must waste so much valuable NHS time.
I think it is important to be able to monitor what is going on as my husband had an abnormal blood test result that was missed by the surgery and he had to follow it up.
I envy your regular contact with the rheumatology nurse. I was sent a questionnaire about how I was getting on with the methotrexate about 6 weeks in with a follow up call about a month later. I am glad to hear that things are under control for you.
For me the care has been excellent but the IT stuff doesn't work. I guess it's better that way round if something has to be disfunctional!
Yes, spartacus 101, you have rightly hit the nail on the head when you say it is important for the patient to be able to monitor what is happening.
This point is behind the policy of giving all patients the right of access to their records. It wasn't always so. Things have improved over the last 56 years that I have had rheumatoid disease; but the advent of modern technology has brought its own problems, as some members of this forum have mentioned.
The covid crisis didn't help, of course, but a smooth transfer of information between GP practices and hospital departments is essential. The idea of the rheumatology Helpline is for the rheumatology specialist nurses to answer patients' questions that might come up between consultations. Also , at least in my Trust, to prescribe medications taken by injection and book appointments for infusions. They also check that I have had the appropriate blood tests. The nurses are always very helpful - I've been lucky in that I've been dealing with the same nurses for a long time; they know their patients well. This is how it should be, but when there is a lot of chopping and changing of hospital staff and staff at GPs' surgeries (especially receptionists) it can be very frustrating.
Good Luck with your on-going treatment - that really has improved since 1967 when I was diagnosed.
It is good to hear you have a positive experience. I am still on a very steep learning curve and I do find it frustrating when I can see how things could be improved for alot of people. Onward and upward.....
Glad to see that it is possible to add the hospital blood test results to GP blood test results in patient access. My practice has said it is not possible . I will take this up again . Thank you.
That is a very positive outlook! I am a bit old school and am working on the basis that it shouldn't be disfunctional.
I completely agree with you. I think I am focusing my energy into me feeling better, fitter and enjoying life rather than expending it trying to change a system that doesn't work, although I know if people don't try to change it, it never will.
Yes, absolutely. I hope you manage to get access to your records.
Hi Im glad to hear you are doing well on Methotrexate. You have quite a mixed bag of responses here. I was diagnosed 24 years ago by a hospital 25 miles away from where I live. This is a different health authority & they are on a different system to my GP. This is still the case so I have been the go between for all this time with not only blood tests but other hospital letters which I have to print off & take to various appointments.
I think I would speak to your Rheumy nurse to ask her to sort out a system that works best for all of you. Ultimately they need to see your results so they can prescribe your Methotrexate. The GP cannot issue it to you without the prescription from them.
I hope they can get their heads together sooner rather than later. If not then speak to your Consultant’s secretary they are usually excellent at sorting things out. Good luck x
Is this what the My arthritis app is for? Or have I got it wrong?? 🌸
It is the same here and just problems with NHS computers don’t talk to each other. The shared care agreement just means GP prescribes based on hospital instruction. Ask if you get your bloods done by GP that they copy to themselves. Honestly it’s really common and here in Medway been an issue for years now we just get codes and pass to GP nurse and both hospital and GP can get the results. Apparently here now it’s all codes and no paper so fingers crossed it’ll work.
I have been having my bloods at the GP for 10 years, sometimes at the hospital, All results are shared, this I know as the hospital notified me before my GP to stop my biological and methotrexate when my white cell count was low. The rheumatology nurse should be contacting you surgery. Good luck
My GP does the same blood tests as the hospital so I don't worry about it. In fact, my GP pays more attention to my results than the hospital does.
I need to do 2 lots of blood tests one for GP and one for the hospital that doesn’t always reach them.
They don’t call me with the results as I am also in an injection too. So you need to be vigilant and ensure the hospital and gp get the results otherwise they will stop providing your medication which happened to me recently
That’s rubbish. So sorry for you and thanks for the advice.
I would not be happy doing that. I’d askGP if the first rule of medicine is to do no harm why are you being forced to have the same blood test twice, because they can share the results. I have to have for GP, RA and Nephrologist and they are all shared. So. 3 separate disciplines which all need the same tests but I arranged for 1 lot of bloods every 3 months. It was the GP who said it wasn’t fair for a patient to get 3 lots of blood taken when 1 was enough.
I'm planning to have blood test with GP and send the results by email now I have this.
Apparently they don't share records was told this recently by the hospital
I’d urge you to talk to the GP or RA nurse this is not fair on you. If you have a shared care agreement then the GP issues a script based on hospital instruction and if you getting meds from your GP that would appear to be the case then it might be time to question why. You could talk to PALS or GP practice manager because it seems to be a problem that is common but resolvable. No joke to have unnecessary blood tests. It might be a good idea to write to them and ask about unnecessary procedures. I get forms from hospital for RA and Nephrology and the tests done at GP. It really shouldn’t be difficult and I’m sorry it is for you which is so unfair.
It is shared with GP/hospital but it doesn't appear to be though. My GP under the guidance from the hospital. They don't adjust anything. If there is a problem they always direct me to the hospital for advice
So sorry and very unfair. X
I get my blood forms from rheumy nurse not gp and always have blood test at the hospital.she sticks a label on the form for results also to be sent to gp.I find there is frequently a disconnect between hospital and gp and often despite the request on the form,my gp is not informed so I ask rheumy nurse to fwd to my gp which the in house pharmacist can then prescribe my meds,particularly methotrexate!
My results are never sent to GP
There is a box on the form for GP but they never receive them
I get blood forms from rheumatology but they don't share with my GP as out of the area but our local hospital and the one I am with for rheumatology are under one trust now. My local hospital can access my records from the rheumatology department I'm under but rheumatology department can't access records from my local hospital. They are only 10 miles apart.
It doesn't make sense
Thank you all for your replies. It seems like many struggle with a non-joined up system and whether results are shared with GPs depends on where you are!
I have had my phone review with the rheumatology nurse. It turns out that my rheumatology team / hospital won't routinely share blood test results with me or my GP unless that is specifically requested at the time of the test (which I didn't know then so couldn't request!) She is contacting the rheumatology secretary to ask for copies of my test results to be sent to me and hopes that works. Watch this space.....
In other news my last blood test showed everything back to normal, so the methotrexate is working, which is good news 😀 and I am going to get a face-to-face with the nurse in about 6 weeks time 😀
I have similar issues. Apparently the GP practice uses one system and the hospital another so results are on 2 different systems which do not communicate with each other. Since lockdown I have to have blood test at the hospital only. Copies are requested on the hospital form to send results to both the hospital and the practice. However I can only get hospital results by contacting the rheumatology secretary and it takes weeks to get them despite my GP having access. They take the same blood test.I am told to contact the hospital for hospital requested tests. So on what I can see on line there are large gaps. It drives me nuts. If only they were all in one place and accessible through patient access. I can see GP taken bloods but not both. Just writing this has put up my BP. I ask politely but firmly . Getting past receptionists is a nightmare.
This is the same here but the GP can access the results just have to look for them on line on hospital portalI I used to have the same so used to get messages about not having the blood test done etc. so I met with GP and practice manager and the GP admitted he just did not look unless the paper was put in front of him.He agreed doing unneeded procedure was causing harm and unfair to patient and I had 3 lots to be done every 3 months so they then took action. I’m under 2 hospitals and going 30 miles for a blood test was stupid and for same thing a full blood count, CRP etc, . So now as I said one lot taken and GP , the MMH and K and C hospitals all see same result. Around here we can’t get bloods done at the hospital but there is a clinic with outreach facilities for Medway although they just need the codes like GP and forms so share. I just go to GP as I know the nurse and it’s easier.
I had this situation used to pick up a print out of my blood test result from the surgery, because surgery and RA team in different NHS trusts and had no link to each other.
Then gave email addresses to each of them so they could communicate.
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