Blood book update -ready on Thursday 17th May

[Rachelthepotter]

Hi

Just to update you on progress with the "blood book" - the development at Guy's of a (paper based) system for patients to have their blood results and medication recorded in at each visit. So that all the blood results will be in one place, and can be carried with you.

I've been told by the person at Guys (Melanie Dalby) who has carried the project forward that the first batch of books will be arriving at Guys this Thursday 17th May 2018, and that the clinical team seem to be well on board.

I haven't seen any recent drafts nor the final version, and its possible (or even likely ) that it won't be exactly what we want. My initial concern is that it might be too flimsy to stand up to being carried around, but at least if there is a first edition in place we can get it tweaked. Obviously it'll be there in Guys for patients to use, but I don't know what arrangements are being made for others to get hold of it -Maz, any ideas?

Someone on the forum said, when I first floated the idea of trying to get a uniform, official system for recording our blood results, that he was the only person who had all the hematological information about him, and that that was concerning. I thought so too. And potentially dangerous.

For those of you who think a paper booklet is old fashioned, once we have a system for capturing the data on paper then it would be relatively easy for a simple, uniform spreadsheet based electronic system to be developed that we can carry on our phones if we want to. That would make it easy to see trends over time. Me, I wouldn't underestimate the robustness, cheapness and reliability of paper.

I'm tired and fed up and have just had a blood transfusion (earlier today) - it hasn't (yet) had the immediate lifting of fatigue effect that the earlier ones had. But it did produce an immediate and measurable increase in my O2 sats. Up from 93 to 98. I'll get an early night, and see how things go in the morning. Pottery class tomorrow, which is fun. I came across a great logo on a T shirt I saw on a potters website "Keep Calm and Throw Something" .

All the best

Rachel

[susieq75]

Hi Rachael,

Thank you so much for the update, itmis a fantastic idea, and hoplefully will be replicated across all hospitals! And I agree I wouldn't u derestimate to robustness of paper!

I hope the transfusion gives you relief and enjoy the class!

Susieq

[shiftzz]

Déjà vu here. Leicester NHS Trust did this, I posted it on here, and I produced the spreadsheet which I distributed freely to a large number of members..

No mention of the above...'Blood book' a term that I 1st used...

[Rachelthepotter in reply to shiftzz]

Hi. Apologies for not giving your name and crediting you with the title. IT not my best subject and I loose track easily. .At the time I did pass the info about Leicestershire on to Melanie at Guys. Also info about similar records in Cork. Don’t know how much use was made of it. My battle was to keep plugging on till Guys produced something.

We’ll see what it looks like.

R

[shiftzz]

healthunlocked.com/mpnvoice...

[EleanorPV in reply to shiftzz]

Yes I do the same. My hospital isn’t interested as their hospital software give them similar (but I don’t have access to that).

[shiftzz]

healthunlocked.com/mpnvoice...

[shiftzz]

Rachelthepotterin reply to bruddery

6 months ago

Brilliant. It makes so much sense. I’ve passed fhe idea on to the hospitals I use. I’ll see what happens. Many thanks. I like the name “blood book”.

[Roger41]

My name team consultant liked my idea.I use an account book and keep the records in it.

He told me about your project and he thought it was good.

When I went away to Malta in March I took a letter with me that was on my husband's phone for ICE purposes.

Technology moves forward...

One can always be hopeful.

I throw old pots when I get emotional.

I can feel a need to get a tee shirt with this on.

Messing about on boats is my stress release.

Good luck.

[Mazcd Partner MPNVoice]

Hi Rachel, I will have copies of the book to send out to people. Maz

[Rachelthepotter in reply to Mazcd]

Great

[scousesbird in reply to Mazcd]

Hi Maz would it be possible for my husband to have one once they are available. He's under Maidstone and TunbridgeNHS trust though. But we never get the results from haematology. If he had one that may be more forthcoming with them. Thank. you

[Mazcd Partner MPNVoice in reply to scousesbird]

yes of course, but I haven't got them yet, they need to be checked and printed, so once I have them I will let everyone know and will give details of how to get one or two. Maz

[Superwoman]

with my paper booklet I have to keep in a plastic folder otherwise it starts to rip and fray and is looking very messy and tired and a bit on the big side, so will be interesting to see.

On another note I was at hospital today and platelets are all in the normal range so back in four months. Enjoy your pottery class.

Enjoy your

Regards Jean

[nodmeister]

I've been getting copies of all info sent to me right from the start in 3012 so a book would cut down on paper, postage etc and be more manageable. Hope we can all get one😁💋

[Rachelthepotter in reply to nodmeister]

Looks as tho Maz will be making it available. I haven’t seen the final version so it may not be quite right but it’ll be a start.

[nodmeister]

Blimey, moved on a millenium there!!!!! So it was really 2012!!!!!

[Inca]

I am given my test results from lab,to my specialist and my G P.I have now 8 yrs of monthly test sheets in a large folder!!!! I have it with me when we visit family in U K......just in case !!!