I have produced an Information Sheet, regarding my condition, that I can give to any 'new' Doctors/Consultants. It gives my full name, NHS & Hospital Numbers, my current Drug List, along with the names of my Consultants & Doctors. I have also included my Prognosis/Diagnosis along with all the relevant Hospital Telephone Numbers. I have to say that all of my consultants, old and new, have been very impressed and commented on how helpful/useful this information is.
As I have often found, when new Consultants 'take over', Hospital Notes, Papers, and so forth, can go missing-only to 'turn up' weeks later. In these cases to be able to produce all the relevant information yourself is, to say the least, somewhat helpful! If anybody wants any further advice, please do contact me, through this 'Forum'.
AndrewT
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AndrewT
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This is a great idea Andrew. Not only is it useful for the doctors and consultants but I think it also shows them you take an interest in your treatment and try to understand as much as you can about the disease, drugs, etc.
My local CCG has actually been talking about doing something similar for all patients with long term conditions. As yet they haven't managed to come up with anything so I think I'll have to follow you and sort something out myself !
Since my husband's illness started in Oct 10, I have kept a spreadsheet of all the appointments, operations, consultations which now amounts to about 15 pages. I have another sheet for all his medications and most importantly, when these medications changed and if doses changed. I keep another record of his prednisolone quantities as these have changed from being very high, to getting lower, having to increase them and slowly decrease. Now he's on 8 & 7mg alternate days, I wouldn't know what to put in his box without the list. There's no way these things can be remembered, when the doctor says 'when did this or that happen?' I upload all this info onto a tablet and this I take with us to be able to answer any questions.
So, yes, it's an extremely good idea to keep records.
I have a calendar that I pretty much did the same thing on. My husband, however, spent the last month of his life in the hospital. Twenty of those days in CCU. He was diagnosed July 23, 2015, but they caught it too late. He had symptoms for 6 1/2 months before a proper diagnoses was found.
Good luck with your husband. I pray he goes into remission for a long time.
Hi Andrew would you be able to send me a copy as i am getting very forgetful Thankyou
Sandie
Me, too, Andrew, many thanks in advance (of course, after you have used Sharply to mask your personal info!!) It would be much appreciated. What an excellent idea
What a brilliant idea, Andrew, I know many others who do this too, especially the younger ones diagnosed with Vasculitis.
We always keep a diary of John's appointments, medication, relapses, flares, doctors names, related consequences of the drugs and the disease etc etc
The RUDY study Group, for all the reasons you have said above, created the RUDY study so patients with Vasculitis and other rare diseases of the bone, joints and blood vessels could register and enter all their details, including how the disease affects them, medication, side effects, etc etc , on line, on their own individual page and share with any doctor/nurse, they see at any time. This information can then also be shared between doctors and research doctors to aid further research for vasculitis. ( with the patients permission) vasculitis.org.uk/news/rudy...
Andrew, have you ever thought of writing your story for the Vasculitis UK website this is the page on the website of other's who have written their story. if you would like to take a look. The youngest is Kira who was 9 years old when she wrote her story, she is 11 now. vasculitis.org.uk/living-wi...
It's a great idea Andrew, and I hope you don't mind, but I'll be pinching a few ideas for my sheet
I've currently got my medications, conditions, allergies, blood type, past procedures, GP info and emergency contacts.
One thing that I've found to be very handy is, I've installed Dropbox on my computer and smartphone. It's a program that syncs information between the two (as well as any other devices you install it on). Every time something changes, however small it may seem, I update the file on my computer, and Dropbox updates it on my phone too.
It also works the other way, so if I remember something I want to tell my doctor while I'm out, I update the file on my phone, and the changes are saved on my computer too. If anything happens to my computer or my phone, I've still got an up to date copy of the file.
You can get Dropbox from dropbox.com or Copy, which is not as popular but has more storage, from copy.com
Hi Andrew. Would love a copy/template of the info sheet please. Whether mine ends up as MS or Vasculitis it will be useful for both as my memory is so bad.
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