The idea of an ongoing single "Blood Book" in which all hospitals and GPs providing care for an MPN patient can record blood test results and medication over the long term is getting some traction. Forum members here whose hospitals and GPs share that sort of system have said here how useful they find it. Just a simple paper based system with the relevant dates and numbers in it. Because the blood results and medication changes are recorded by the health team as they happen they are a reliable source of information, not just for patients, but also for other doctors treating them.
I was contacted by a researcher at Guys who is looking at ways of improving the patient experience, and she was very interested in the idea of a Blood Book (thanks for the name, Bruddery!) I'd given her info about the two examples people had shared with me here (Cork and ?Lancashire ) but she'd welcome input and experiences (and ideally where she can get actual physical copies of the books that the various hospitals use -so a contact in a Haem department would be helpful to her) .
Maz, I'm not sure what the etiquette is about my putting her contact email on as part of this message - she is happy for me to do that, and it would be the simplest from my point of view. If that is OK, her email address is Melanie.Dalby@gstt.nhs.uk and she would welcome any suggestions . If that's not OK then people can message me and I can pass their emails on.
All the best
Rachel
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Same idea. Bruddery has a book from Cork University Hospital she calls her Blood Book which has had all the results put in it for years. I sent the researcher Melanie Dalby info about the existence of Cork system ( which Bruddery calks her Blood Book) and the Leicestershire system you use. ( I called it ?Lancashire today which might have confused you but I sent her the image that you’d posted here).
I know from speaking to Melanie today that she would really appreciate it if you could contact her directly at melanie.dalby@gstt.nhs.uk
Her project is funded by Prof Harrison.
Any probs with the email address let me know and I’ll repost it. I also have a physical ddress for Melanie that I’ll put up here when I can retrieve it from my paper strewn desk. She’d welcome actual physical examples of any of the record books that people are actually already using. And contact details
This is a great chance for everyone to benefit from spreading good practice that already exists elsewhere.
I have a A4 sheet of paper from the doctor I take every time I got to the hospital. They write down all my results and medications, so I can look back at them as well as the doctors. It’s a great idea.
Hi Wyebird. Many thanks for your offer, but It isn't a question of using anyone's results: just of having people give examples of existing straightforward paper systems they use that they can carry with them and hospitals and gps can use to record blood results.
Guys doesn't currently do that. I’m hoping that they will. Seeing what is in use successfully elsewhere will help . No need to reinvent the wheel
Since my diagnosis last year I have used a simple A4 sheet with 9 columns for the main results. As I have ET, that's platelets, RBC, WBC, Haemoglobin, lymphocytes etc, plus Tryptase as I have mastocytosis. I also record dates, medication.
The only problem is when one of the normally stable ones, not recorded, start to change, so then have to go back and create new columns.
My Haemo finds my summary useful as well.
A Blood Book would be really useful, especially with other spaces to record changes to medication, other illnesses which occur from time to time, general state - fatigue, pains etc.
Hi Rachel - after the post by shiftzz (many thanks to him for the photo of his book) I hit the shops + found a notebook I can make into something similar - it seems so logical to have the results info to hand in a clear format ( I am utterly frustrated most of the time trying to even get results - including on line which I was told absolutely would not be happening) I will trot back to the haem after crimble + take my home made version of a blood book.
Would much rather have an ‘official’ NHS type version - if anything comes of these posts + the ‘powers that be’ to maybe get something available to either purchase (or get popped into our sticky mitts) please let us know!!! x
I use an excel spreadsheet with the columns for the various tests that I track. I also have my own analysis, if you can call it that, where I track every HgB level and the date when I go for my phlebotomy, sometimes I'm under the magic #15 for me and they don't do a draw. Other times I am over and then out goes 500 ml. What I do is track the days between being over 15 and under 15 so I can start to anticipate when I need a draw. My hope is that I can start to predict when I might start to feel yucky as a result of my HgB being too high. Right now it runs about 4 weeks between draws and I'm on 500 mg of Hydroxyurea. I also track my ferritin and iron levels. Not that I can do much about them and only get tested at most once a qtr.
I would be glad to share the spreadsheet with anyone who wants a copy. It is very basic.
I have exactly the same thing and have used it since Steve was diagnosed with MF. Mine changes colour for low or high counts and the head of the bone marrow team stole the copy I took for our first consult with the words, if we had one of these for everyone it would be fantastic.
We now have a fantastic booklet that shows the main blood results in one section, the mineral results in another, treatment given in another and, finally hospital appointments. This was provided by Cardiff University hospital. I'll screen shot some pages and email them to Melanie.
Anyone else who would like a copy please msg me. if you want a blank copy of the s/sheet to use please let me know and I'll be happy to forward it.
I would love to see what you did. john@frontrangecoaching.com
Mine changes color based on the ranges of the various factors as well.
I am also adding in a daily journal section. I have noticed that for some reason when I do my blood sugar checks and use my right hand some days I can't any blood out and that the phlebotomist has trouble with the right one as well that my levels are high I need to be drained. I am also thinking that my fatigue follows this same pattern. But, I need the data to prove it to myself.
Not sure if the booklet actually became part of the system at Guy’s - I’m now being treated at Oxford where its a bit easier to get hold of my results.
There were two distinct issues :one was me as a patient automatically being given my own results, and the other was having them in a portable format for other health care prividers to see.
A blood book aimed to do both.
For possible content and format see the other replies in this string. The Guy’s one was a bit of a compromise - I just wanted blood data, but the Guys person at the end wanted medication etc. as well, which made it more cramped.
Dunno if I'm late to the party here but my hospital (Princess Royal, Bromley - South London NHS Trust) supplied me with a pre-printed 'Hydroxycarbamide Patient Held Record Card' (actually a printed sheet of A4 paper, folded in half) that has name, address, hospital number, NHS Number & diagnosis on front cover and hospital nurse/departmental contact numbers on the rear. Inside are eight columns headed; Date, WCC, Neut, Hb, Haematocrit, Plt, Hydroxy. dosage & comments. Does the job nicely. Has even made for 'good' reading in the past but not just at the moment but that's another story......
Thanks for the info , Kevin. I do think that patient held records are the way to go. I’m sorry that yours doesn't make for good reading at present: I hope that there is a way forward
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