Always get copies of your hospital notes

Towards the end of last October I contacted four different local hospitals asking for my medical notes from the last two years of assessments and treatments. This was prompted by my upcoming consultant appointment in London as the specialist nurse had advised me over the phone that any information I could forward for the consultant would be very helpful. I then received my first big form/booklet to fill in with regard to the disability benefits changes in the UK and realised that medical back-up would be very sensible for that, too. Though the notes did not arrive in time for the Incapacity Benefit to Employment Support Allowance application and, as it turns out, my only contact thus far in London has been two days of tests.

I received my final tome of medical notes this morning, so the scores are finally in…

Local Cardiology hospital: 10/10 for posting my medical notes to me within a couple of days of asking, and for no charge at all. 🙂

General hospital about 40 minutes away (Respiratory consultant & specialist respiratory physio’): -2/10 for eventually posting my medical notes at an upfront cost of £10… to a completely different house! (Super-sleuth postie managed to get it to me eventually). 😦

Local General hospital (Pain management, and respiratory physio’ including auriculotherapy & acupuncture): 4/10 for sending me very comprehensive notes also at a cost of £10 (I’ve just scanned in aaaall 56 pages!), but it took them from near the end of October until today to actually get them to me. :-/

Specialist hospital’s neuro department up in the Big Smoke (London): not yet entered for scoring as contact is ongoing, I’ll ask for copies of the notes once there’s more to ask for (I’m still awaiting an appointment to see the consultant after those two days of tests, y’see. Hopefully I’ll get a letter soon with an appointment date for this month or next month. I hope).

Gee whizz, after all that excitement I need a cuppa!

If you get can copies of your notes you can have assistance at your fingertips when seeing other medical practitioners. I have lost count of the times practitioners have said “And who diagnosed you with CRPS….?” because they need to double check that the information I’m giving them is correct. So I find that a copy of my diagnosis letter in my handbag saves a lot of time, and since asking for my notes I also now have various medical letters and scribblings with the magical words “autonomic nervous system problems” and similar. Very helpful! That way I can bypass the doubt and cut to the chase.

Here’s wishing you all a positive 2013, I hope you get all of the appointments and support that you need this year. And on that note, here’s a little video from the RSDSA (Reflex Sympathetic Dystrophy Syndrome Association) in the USA about the importance of us becoming our own advocates to keep our health on track. In my experience, becoming my own active health advocate is the best thing I ever did.

Lots of love from me,


4 thoughts on “Always get copies of your hospital notes

  1. Excellent work!

    I used to be a qualified nurse/RN so I’m exquisitely aware of the importance of documentation. Having this awful rare disease has been a stunning reality check about the value of complete, coherent doc.

    I’ve got everything in soft copy and organized by date and practitioner name. I can cross reference against the 8-page tabulated timeline I started in Year 2, with major events, tests, legal milestones and diagnoses picked out. I try to update my documentation every year.

    Here’s an invaluable tip for badly handled cases: the Red Pen Technique. Hardcopy in hand, get hold of a non-black pen and go over the documentation yourself. Where something is wrong, note that its wrong and what the reality was. If something is fuzzy, say so. If you don’t understand something, underscore it, look it up, and write in the meaning.

    This is an incredibly enlightening experience. Everyone who’s tried it that I’ve discussed this with has found that, by the end, they felt incredibly powerful in relation to the management of their disease, whether or not real problems came up. Not a few were furious and were — with uncharacteristic energy — chasing down the most egregious problems to get them corrected. The transition from flailing catspaw to capable and informed self-advocate is breathtaking in every case.

    The value of collecting, commanding and correcting your own doc is beyond rubies 🙂 xo

    • Yes! I second that, the red pen technique is superb! Give it a whirl, people – feeling more empowered and getting more involved in our own healthcare from assessment through discussion to treatment is the best thing we can do to help ourselves. Rock on! Thanks for this addition, Super-Isy, xxx

  2. Pingback: Happy 1st Birthday to the Elle and the Auto Gnome blog! | Elle and the Auto Gnome

  3. Pingback: My Health Activist Weblog | Elle and the Auto Gnome

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