Category Archives: managing consultants and appointments

Medical Records

A subject I’ve written about before but always worth revisiting. These are my experiences within three UK NHS Hospital Trusts and span 40 years.

Ideal World vs. Reality

In an ideal world each of us would have our full medical record available in a universally readable format that could be easily accessed by any medical professional that is treating us.

Now let’s look at the real world. If you are a relatively new patient who hasn’t moved hospital and not had an in-patient stay then you may indeed have a complete record, held electronically, on an IT system. If, however, you are a long term patient who has moved between GPs and hospitals and spent time as an in-patient then the situation is far more complicated. You are likely to have a mixture of hand written notes and observations, type written letters and, more recently, computer generated letters and test results. There are also x-rays and scans to consider.

The above does not address the issue of universal access. The last attempt in the UK to implement a system was NpFIT (The National Programme for IT in the NHS), a project initiated by the Labour government in 2002 and cancelled some years later having spent in the region of £12bn and having delivered very little. Government backed IT projects are notorious for being disaster areas.

Patient Rights

Where does that leave the patient?

In the UK you have a right to access your medical records. Since 2000 onwards I have received copies of the follow-up letters from outpatient appointments  that the consultant sends to my GP. This may be sufficient for your needs but I needed to fill in a lot of missing detail for the book I was writing. For the payment of a fee you can obtain copies of all your medical records . Requests forms are available online for each Healthcare Trust and as I had been treated by 3 different Trusts I filled in 3 different forms and sent them off with the relevant payments (between £20 and £50 depending upon whether you just require medical notes or want copies of x-rays and scans as well).

A series of packets duly arrived and I was amazed to find they really  did contain ALL my medical notes from October 1977 to the present. Two Trusts chose to send hard copies whilst the third had scanned the notes to a pdf file of over 700 pages. I also had loadable files for CT, MRI and US scans. The only things missing were certain early x-rays.

Information Overload?

My initial reaction was “information overload” but over the space of a few nights I sorted the documents by type and date order and picked out the “juicy bits”. Those bits that explained some long, unanswered questions about my treatment. Probably the most fascinating were the ward notes from the times I spent in hospital. These are not usually documents that you get to read.
The discs containing CT and MRI scans looked a bigger challenge but I found a great piece of software called Horos which opens and views the files.. Hours of fun looking at 3D visualisations of your innards.

What use are they?

What can you do with, potentially, a huge amount of very detailed medical notes? Whilst they might be of academic interest to the patient and provide a fascinating insight into how you arrived at your current state they are not a lot of use to your medical professionals due to the sheer bulk of the information. This is especially true if you are seeing a new consultant who needs a succinct overview of your medical history and current issues or if you end up in A&E (ER) where they need to start treatment as soon as possible.

It gets considerably more complex if you are suffering from multiple conditions. Initially I put together all the major events into a spreadsheet table. Going through the process certainly gave me a good grasp of my overall health and I have ended up a much better informed patient. This helps greatly when you need to take decisions about the course of future treatment. It helps clarify the most important issues.

If you still find it difficult to work out how your health threads come together then draw a diagram. I’ve tried a number of different format. Here’s my chosen format :

Future Developments

There are more references appearing where patients are recording their consultant appointments or having consultations via Skype. Would these audio and video files need to be kept as part of your medical record? Do medical professionals expect to have access to any recordings you make?

Watch this space…..

In Case of Emergency

A few months back I ended up in our local A&E (ER) Department as I had turned yellow. The first person I saw was the triage nurse who asked me lots of questions about health conditions, history  and medications. When we had finished running through the various ailments she complimented me on my knowledge but it struck me that it would have been a different story if I had been admitted unconscious or in a confused state.

Next I saw an A&E Registrar. What would he have concluded if I had been unable to fill in the details? He would have been confronted with a patient with a large scar up the midline and an appendectomy incision. He wouldn’t have been aware why the large scar was there and would have assumed my appendix had been taken out. He would be unaware that I had Crohn’s disease, that there were additional veins growing in my esophagus (varices), that my spleen was enarged or that my platelets would show up around 60, rather than 150+. Valuable time could have been lost trying to solve the wrong problems.

What actually happened it that I handed him a copy of a chart I had drawn up showing the key events in my medical history over the last 7 years. The doctor thanked me and used it as the basis for the questions he then asked.  He then added it to my medical notes. Here’s the diagram :

In the ideal world the NHS would have a comprehensive medical record for each patient, held on a central system, that could be accessed by any doctor when required. A patient’s unique identifier, probably their NHS number, could be used as the reference code. The NHS tried to implement such as system (NpFIT). It didn’t work and there’s a link to the 2014 Report at the bottom of this post.

There are, of course, the likes of SOS Talisman bracelets which have some very basic information engraved on or contained within them. Then there are several subscription services which will hold your medical information and can then be accessed via a unique code you wear on a bracelet or dog tag, but these all appear to be based in the US.  What I wanted was a standalone device that would be easily wearable and accessible. A bracelet with built-in USB memory seemed to be the ideal solution. The next challenge would be how to record the information.

I searched to see if there was a proposed standard data set for NHS use but could find nothing that displayed more than the most basic data. Certainly nothing that was suitable for a patient with long term, multiple conditions. There was nothing for it but to produce my own format. I settled upon two documents – i) a simple, overall summary plus ii) a very detailed table that recorded each appointment/follow-up letter; each procedure undergone and associated report; and any other relevant items such as emails.

Key Medical Details (with links)

I had already obtained hard copies of all the medical records from the three health authorities I have been treated under and had started the task of entering the relevant sections onto a computer. The thought of entering 40 years worth of notes from scratch would have been just too daunting.

The detail (geeky) bit : initially the bulk of the data was put into a spreadsheet (Excel) using a combination of a simple scanner and text recognition software. As the task neared completion it made sense to convert from Excel to Word as this would allow me to save the document as an html file that could be read by any web browser. The external documents (reports, emails) were scanned or saved as either jpg or pdf files and then linked back to the main document.

Detailed Medical Record

Job done. I can now wear all the relevant my medical details on a simple, universally accessible wristband, rather like a tortoise carrying everything with them wherever they go.

USB Bracelet

There are issues that I haven’t addressed :

Privacy – I don’t have any issues with allowing access to my medical records confidential (if I did I wouldn’t write a blog) but I can understand that some patients would want some type of password or lock on the files.

Security – does an NHS computer allow the reading of an external USB stick or is access restricted to protect from viruses etc?

Since originally publishing this post a fellow patient suggested using a QR code to link to a remotely held copy of relevant medical details. The QR could be engraved on a pendant or bracelet but would it be obvious to medical staff how to use it? How about a QR tattoo in a prominent position? More thinking to be done…..

The 2014 Report on NpFIT failure :

*NpFIT – this proposal has been around for several years but proved impossible to implement. The link below will take you to the report outlining why the £6billion project failed.”

https://www.cl.cam.ac.uk/~rja14/Papers/npfit-mpp-2014-case-history.pdf