MPN Voice

Blood books : patient held haematology records. The story continues

Hi

Just thought I’d update on what’s happening with the project. The team at Guys are picking up the ball and running with it, and it does seem to be an idea whose time may have come. I’m hoping to meet up with Melanie Dalby on 23 rd Jan before my next clinic appointment, and make whatver input and help I can. They have a first version of a mock up, I think.

The aim is to have a durable book that we can carry around in which our blood test results can be recorded so that whatever hospital or GP practice we end up in knows what has been happening to us. Having needed medical help at Aberystwyth, Worthing , Redhill , Dorking and Denbigh (for starters) durng my first year with MF it would have been so useful, and would have made the encounters much less stressful for me, and for various baffled registrars in A and E and GPs.

New Year greetings to everyone.

Rachelthepotter ( who, sadly, hasn’t done much pottery recently, but lives in hope that she will do more in 2018)

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Hi Rachel. Great to hear the team are making progress with the blood book. Please keep us posted re developments and availability. I am a firm believer that we have to be our own advocates and be enabled to 'inform' health professionals about our condition and needs. As I said in one of my earlier posts, the only person that knows everything that is happening to me is me, so I need to be able to pass that knowledge on to those trying to treat me.

John

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I keep a running log.

It keeps me focused.

Each appointment is written down with outcomes.

I keep a diary of events too.

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That’s interesting. Do keep us posted. I find it somewhat ironic though that in this digital age when everything is moving away from paper recording an MPN record book is a notion whose time has come. 😁

I am totally for the idea that we have immediate access to a record of our counts, test results etc. I just wonder if this couldn’t be done electronically (or at least we could have the option). I always have my phone on me. I doubt I would remember to carry a book around (recollections of Red Book horrors when the kids were small!!). And I guess if you don’t always carry a handbag of some kind (men???) it’s more challenging. A digital response would seem more of the moment.

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I am given my blood test results (on paper) every month.When I come to UK or travel any where else ,I always have my folder of recent tests and medication with me .Nurse came this morning,all done and more papers,the French love paperwork!!!!!At least we are given everything including X-rays,scans,consultants letters......We have a mountain of stuff concerning my 8 yrs of P V.At least I can easily compare year to year!!!!!!!Have good health all this one !!

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It’s the paperwork mountain I’m trying to avoid!!!! 😂

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Hi Frank. I agree that ultimately having it all electronically on our portable devices might be the way to go.

BUT first we need to get the information in one place, and the hospitals and doctors we see who don’t know us have to be able to trust that information . Thats the beauty of having a single book that doctors and hospitals can write in, and initial. Its a reliable record of our blood data that we can carry with us. Once that is the norm, then we can take it from there.

All the bestfor the next year.

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When I was diagnosed with ET + CAL early last year I was provided with a booklet (called "Appointment Diary and Therapy Record") measuring 10 x 15 cm which is full of information and advice. It includes all my blood test results; details of medications each visit; date of next appointments; contact names and phone numbers for Consultants and Nurse Specialists. It advises me to take it with me on any/all medical appointments. I find it extremely useful as it is a concise and easy to read record of everything to do with my condition from day one onward. I find it very informative and would not be without it!

Frank

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Sounds like just what we need. Can you send me the name of your hospital ? And ideally a contact person there. Then I could ask them for a blank book .

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Hi Rachael, I cannot say that they will send you one but its worth the try!!

I attend the University Hospital here in Limerick Ireland.

One of the Clinical Nurse Specialists is Delma Hackett

Tel: 00 (353) 61-482064

Best luck with your efforts - you might let me know if you succeed!!

Frank

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Thanks, Frank. Heres hoping.

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That sounds good Frank. I am very aware that we need records of our maladie,I had an accident in U K 2 years ago ,which landed me in hospital,there was not one member of staff there who knew what an MP N was,without my bundle of info ....I dread to think ....Sally

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I think this is a great idea - theoretically everything should be linked electronically- however where I am -- Canada it doesn't seem to be. Printed records have been useful - as an example I had a bone marrow biopsy and was sent on to cancer care. They were going to schedule a biopsy-I said I've had one - they were a bit doubtful--had I really and I was able to hand them a copy of the results which they were delighted with and copied for their file. It saved time in getting a copy from the unit that did the biopsy.

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Hi Jean, Many thanks.

Where I am in SE England , the London hospitals aren’t even linked to each other electronically , let alone to other doctors and hospitals in the rest of the country. At my local hospital, I recently found out that the A and E department has its own computer system not linked to the rest of the hospital, and I think ( tho I’m not sure) that the haematology service has its own indvidual system too fir blood test results. The archaic software my GP practice uses couldn't routinely record the fact that I was on ruxolitinib ( because gps can’t prescribe it). And I have a strong suspicion that myelofibrosis gets mistaken for fibromyalgia.

Having a single reliable hard copy book of reliable results would be a great start. And potentially life saving.

Maybe the next step could be to have a uniform ap for personal devices that hospital systems can feed the our own results straight into. My data, my device. I can then carry that with me if I need to.

Happy New Year

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Rachel,

a few years ago when I was working as a business analyst with Guys & St.Thomas' I worked on a project to improve the care of patients with chronic diseases. We planned to use a system developed by a company called Patients Know Best (https://www.patientsknowbest.com/) and sought funding from the GSTT Charity (small world, isn't it!!). I left GSTT before the funding decision was made, so I'm not sure how far it got, but many other NHS Trusts and patients do use PKB to good effect. It might be overkill for MPN but it is worth looking at their website to get some ideas. It could be an effective way of storing medical history and sharing it with any clinician that we choose. At the time (about 5+ years ago) I was very impressed by its capabilities.

John

ps. PKB can now be accessed via a phone app, so no need for a pc. Also, I should state that I have no personal connection with PKB. I'm happy to help if I can.

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Wow. Thanks for this information. I wonder if anyone in Scotland have attempted to have their trust use ‘patient knows best’?

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I am one for hand held notes or supercomputer sticks.

In midwifery we have had these for some time.

With the sticks your information is secure and it means instant access.

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