Rheumatoid results booklet

[lifeboatann58]

Hi. I moved town almost 2 years ago and went to a new hospital and got a new Rheumatologist. But I haven't been given a booklet to keep my blood test results in, I had one at my previous hospital, so asked my Rheumatologist and he says he doesn't do it that way. I liked my booklet as I could see how my blood test results were from each appointment. Does anyone else have a booklet or it normal not to be able to see your results? X

[Hidden]

I used to use one so that I could show my practice nurse/gp my results from Rheumatology and vice versa. But technology has moved on and now my professionals can see my results online even though I go out of area. Might be worth asking one of the nurses at your clinic because they may have one stored somewhere.

Otherwise make your own.

[14penny in reply to Hidden]

Hi I haver never heard or had one it does seem like a good idea but I could not see my one doing that as mine seems to do as least as possible the lovely rheumy I had moved and I really miss him as he done every thing to help.

[Hidden in reply to 14penny]

Can you follow him? I travel 85 miles to mine.

[Hidden]

I’ve never had one

[Boxerlady]

I've never had one either. I've never seen blood test results (or anything really) from my rheumy clinic but can see all my records and results that go through the GP online - shame it's not all linked.

[Ruth12345]

Never had one and didnt know there was such a thing. Suppose you could make your own if you want. My rheumy shows me mine on screen when I see him. 🌈

[springcross]

I had one given me last year but I will be needing another fairly soon. I am going to ring my Rheumy nurse and ask if she can put one in the post to me.

[lifeboatann58]

Thanks Everyone. It seems that every area is different. I'll ask my GP about logging in online to see mine, then I can print them off. Anytime I ask I just get told everything is fine(even my knees), then I get told I need a knee replacement as it's bone on bone. Makes me wonder what else there not telling me. Probably nothing but makes me paranoid, especially when I get told from the Rheumatologist that the pains in my feet, knees are my osteoarthritis and then my Dr tells me that it's my RA that's the problem. Grr

[Jillyanne in reply to lifeboatann58]

To be perfectly honest, I never believe my GP about RA , that’s why we see a specialist consultant.

My GP asked me once which joints are effected by RA 🤔🤔🤔

[lifeboatann58 in reply to Jillyanne]

It took me 2 years to be diagnosed with RA at my previous Dr. It took a young girl just out of medical school to listen to what I was saying and send me for blood tests. She said it sounded like Ra but hoped she was wrong. Unfortunately it was. 😟

[Jillyanne in reply to lifeboatann58]

Unfortunately some GPS have no idea about the drugs, have to get there little book out and read up , I think the younger ones are more up to date 👍

When I first got RA, I knew I had because my Dad had it , my GP kept saying I had a virus , it got to the point where I literally went every day to see him , untill he gave in and sent me for a blood test , which my consultant said proved I had RA a few months later, but my GP still said that I didn’t have it 🤬🤬🤬never went back to him

[Hidden in reply to Jillyanne]

Your right Jillya older GPS don’t have a clue 15 years I suffered and I was told I was depressed I could see them roll their eyes and throw up their hands when I refused to take antidepressants. I thought I was going mental in the end a young placement doctor referred me I find younger doctors much more sympathetic and understanding of our disease.

[Gnarli in reply to lifeboatann58]

Well if you're paranoid then so am I. No book, cannot check test results (on-line system closed to patients due to Covid), never told anything even when I ask. I only discovered I'd had pneumonia when checking my travel insurance. What else is lurking?

[lifeboatann58 in reply to Gnarli]

Hi Gnarli. That's terrible. We rely on our Drs to look after us, so not telling you when you have pneumonia is crazy. 🙁

[Gnarli in reply to lifeboatann58]

Well, I did know it was serious, obviously, admitted to hospital struggling to breathe. It gets better. Admitted to hospital on another occasion with excruciating chest pain, a doctor came to my bedside and said 'has anyone ever mentioned heart failure to you?' Shocked, I said something like 'no they haven't' at which he seemed to collect himself and bumbled off. Later records state it was costochondritis. It wasn't because it felt totally different from when I'd had it before. Following it up later the incident was denied.

[lifeboatann58 in reply to Gnarli]

Wow. Just goes to show, makes you wonder why they don't keep you better informed. X

[happytulip]

I used to have one when I was on DMARDs. To help you keep track could you ask your GP receptionist to print off your blood results? That's what I did for a while?

[helixhelix]

NRAS have a downloadable version on their website, here:

nras.org.uk/publications/me...

[Boxerlady in reply to helixhelix]

Ahh - I've got that looks like that but they only use it to record my dosage, not my blood test results; I'll have to ask them about it next time. They've started a portal system called "Patients Know Best" but so far have only used it to send me appointments letters. I'm hoping that eventually I'll be able to access all my records through that - something else to ask about...

[Zoppy89 in reply to Boxerlady]

Hi! I have a patients know best portal as well. And after the appointments and letters they have moved to blood test results coming through there as well, which is great to keep track. Fingers crossed yours moves to that level soon!

[Boxerlady in reply to Zoppy89]

Ooh that's good 🤞that happens for me too. I like being able to see my GP records - it's great being able to check back when I can't remember things from a while ago 🙄 As I'm now on Methotrexate injections, my blood tests will always be through the clinic rather than the GP because my health authority doesn't allow shared care for that.

[mohammadPKB in reply to Boxerlady]

Hi Boxerlady could I ask which hospital has started using PKB with you? Every hospital using PKB will eventually switch on lab results - it's a proven and obvious benefit to patients - so I might be able to come back to your with their plans. In the meantime sharing this thread with them is another reminder that they should hurry up as patients are waiting!

Declaration: I work for Patients Know Best

[bpeal1]

I’ve never had one. Both the hospital and GPs can access results on their systems. If I want to know results I call them or occasionally I ask the GP receptionist to print them for me.

[sylvi]

No i don't have a booklet either.xxx

[nomoreheels]

As you attended the same Rheumy clinic as me you'll know I have one Ann. In Spain I didn’t but my Consultant used to print off my results at our meets to discuss them & then give me that printout with any relevant notes written on it &/or circled anomalies in the values. Perhaps you could ask for a printout when you see yours & put them in a file as a history of your results?

[lifeboatann58 in reply to nomoreheels]

Hi nomoreheels. I had one while I was in Blackpool, it's only since I moved that I don't have access to my results, going to speak to my Rheumatologist and ask for print outs. ☺️

[Hidden]

I have always had one. I have all my blood test results since diagnosed in 2009. I find it really useful and just ask at rheumatology when I need a new book. I get my results from my GPs on line service and record them myself. I have often had problems with low neutrophils and I need to track results myself. I’m not trusting enough to accept just being told things are fine.

[KittyJ]

I used to have one then they stopped using them and now my results are online. I still write them up in my book though, just for me but will probably stop that when the book is full.

[Hidden]

I’ve always had one. I like to check my blood results myself. I leave the booklet at my surgery after I have had my blood taken, nurse fills the results in during the week and I collect the booklet later. Very useful.

[lifeboatann58 in reply to Hidden]

Hi Magnolia25 That's how it worked at my previous Hospital. I liked being able to monitor my results. Will speak to the Hospital and DR so I can get a upto date record. ☺️

[Pabbiecaughey]

I can get access to all my blood test results through the Patient’s Access site which is linked to your doctor’s surgery. It depends on how much info they put on there. Mine are fab. They put everything blood tests, phone calls, letters from consultants and much more.

[barbieg in reply to Pabbiecaughey]

Can you tell me what the patient access site is please? My surgery uses system on line which works well for repeat prescriptions but I can’t get access to my blood test results from it. I’ve given up asking the surgery why I can’t.

[KittyJ in reply to barbieg]

My surgery uses systmonline and I can see my test results and summary of appointments, I did have to sign a different form to get this access though 😊

[barbieg in reply to KittyJ]

Mine uses system on line too but I cannot see my blood test Results. I’ve asked why so many times but I never seem to get anywhere. What was the form you had to fill in?

[KittyJ in reply to barbieg]

It was like the first one for prescriptions and appointments but requesting them to give access to results and consults. It’s so long ago I can’t remember exactly.

[Gnarli in reply to barbieg]

I think our GPs use System on line. We can access teat results but it's been so long since we used it I've forgotten how. I'll see if Himself can remember and get back to you

[barbieg in reply to Gnarli]

Thank you.

[lifeboatann58 in reply to Pabbiecaughey]

Hi. Pabbiecaughey. Thanks. I'll ask my GP about the online access. ☺️

[Prunes]

I can access my GP results online. With my hospital bloods I get them printed out when I go to the clinic.

I like to keep track of my results and analyse them for trends! I also take my latest set of blood results with me when I go on holiday in case I get ill so I can use them as evidence to ensure that someone takes me seriously if I say I'm unwell.

[Hidden in reply to Prunes]

I too c like to keep an eye on my results and could check with Gp online but since last September they have not updated the results.. understaffed once checked they should be uploaded onto your Gp file now rte have got rid of the reception staff who were in charge of this the nurses can’t keep on top of the work

[medway-lady]

It is a good idea but I've not got one. But I could keep track as always on the letter that goes to GP I just never bother to look.

[Hessie5]

Hi - this is very frustrating as I never had one, it was on the system for the consultant to see - so if my blood appeared off-kilter, he would phone and let me know. I asked so many times for access it became stressful as when I went to see a private haematologist she needed this info! I had to try and mock up a spreadsheet it was annoying.

I have given up asking now and try not to focus too much on these markings. I tend to look at what I am eating, doing, taking to keep my markers down. I presume if I have a flare not doing too well.

I agree it would be great to have access to such results. Hessie 😌

[Braecoon]

When I had to change GP surgery 5 years ago, I asked the nurse that does my bloods for a photocopy of my previous results. Well that set up a major panic, letter from the practice manager and telephone call. Explained that I was a nurse and wanted to know my results. Once they established it was not for any nefarious purposes, this was allowed but I had to pay 2p per page (6p in total), which the practice nurse has never taken off me (she thought it was absurd). Ask for a print out, do not be fobbed off - just tell them you want to be more involved in your care (they cannot argue with that)! Good luck.

[lifeboatann58 in reply to Braecoon]

Hi. Braecoon. Definitely going to get it sorted, I want to see how my markers are, as sometimes I feel really bad, so assume that I am having a flare, only to be told everything is fine. 🤔🤔

[jbzm]

All different! I was shown a booklet at one of the RA education sessions our hospital runs for patients newly diagnosed with RA. However, they actually use a system called myhealth (all one word) which allows us to view all clinic letters, appointments and blood results (understandably not CT, MRI etc) online. I will have bloods one day and see all of the relevant RA results the next day. I love numbers (taught 11 - 16 maths for 24 years before stopping to care for my mum), and really enjoy stats (my lads are both maths bods but both hate stats with a vengeance!) so find it really interesting. I've made myself a sheet and printed it out to record all of my results each time.

My GP's on the other hand don't have results to view. Quite frustrating when I can see my hospital ones. Sometimes I manage to get a print-out, but it's hard work depending on who is on the front desk that day.

[Carol41]

Hi, when I have my monthly Methotrexate and other drugs blood test at the surgery the nurse writes the previous results in my booklet. My G.P. has the results soon after the tests and lets me know if anything is wrong. I can ring the surgery if I want to know as soon as the results are there. wishing you well Carol xxx

[Jonitheis]

You pay for your bloodwork you own the results! My doctor has a patient portal I can log into to see and print any results I would like to. Or the company that runs the tests has the same for me. My memory isn’t what it used to be! I must have Accurate access to my numbers! You should too!

[rab1874]

I have one got it when I started methotrexate 5 years ago onto my 4th one now,they give me them at GPs now as I like to keep an eye on my blood results

[Paula-C]

When I went on mtx and given the booklet I was told that a pharmacist would ask to see it t make sure I was having my bloods done before I would be handed my tablets (it's only happened once), was also told to carry it with me at all times incase I took ill so who ever saw me would have up to date bloods. I started mtx in 2010.

[Boxerlady in reply to Paula-C]

The pharmacist asks to see mine to check that I've been given the right dose but has only asked if I'm having regular blood tests not to see the results; just as well considering that I don't have/don't see them!

[Matilda_1922]

I've never had a booklet for blood test results but would like to know my results. Would feel more in control

[embroy]

I haven't had one.

[NanaFifi]

I had a booklet years ago but kept forgetting to take it with me when I went for my blood tests!! I don’t have one now, if there’s something up with my bloods my GP surgery let me know. X

[Diane004]

Never been issued with a book, I don’t see a GP though, I’m under the hospital and see a specialist. If there is a problem with my bloods the specialist rings me

[munchkin]

Had a booklet for my methotrexate, but not my blood test results.

[gillpalmer]

I have a book which I hand in at drs then they write results in but they will not do it at the moment because of covid.

[Vivienham]

My pharmacist gave me a booklet and the nurse who takes the bloods fills it in.