Do you enjoy your job?

Do you enjoy your job? Do you think what you do influences the attitude you adopt to your condition(s)?

For the last 35 or so years I’ve been planning things. Think party planning but without the sex, drugs and booze. To be precise I’ve been planning projects ranging in size from small construction jobs, offshore wind farms, MoD contracts and the mega Channel Tunnel. The last few years have been spent planning a major upgrade to the London Tube and the introduction of the air-conditioned, walk-through trains on the District, Circle and Metropolitan Lines. (If you use them I hope you enjoy the experience).
The job has been challenging, especially when tackling new areas where you need to quickly learn a myriad of acronyms, technical terms and understand the new processes needed to deliver a successful outcome. The standard planning tool is the bar chart, or Gantt chart to give it its fancy name, but the key is always communication. That’s where my love of diagrams comes from. If you can encapsulate on a single page the message you are trying to get across it is so much easier for others to understand than using reams of words.
In 2010, maybe it was 2011, it dawned on me that my health could be considered a “project” and the techniques I had been using for years could be effectively employed. I was faced with multiple outpatient appointments, procedures and a growing number of health conditions. The follow-up letters or medical reports often contained acronyms or very long, very unfamiliar medical terms and when I obtained copies of all my medical records I reached information overload. It then became a labour of love to condense the “story” into an easy to follow narrative.
The “project” approach (and starting a blog) has enabled me to become very objective about my health issues. I see my consultants/NHS as a set of expert resources that will help to achieve a successful outcome. But, of course, there lies a problem. What is a successful outcome? For a conventional project there is a clearly defined point at which it can be declared finished but for a chronic condition, such as Crohn’s, there is at present no end in sight. That makes me uneasy as I’m used to completing a project and then moving on to the next one. (My wife would not agree when it comes to home DIY but that’s just a man thing).
Maybe this isn’t just a chronic illness issue but also age related. When you reach a certain point in your life mortality surfaces as an issue. You start to realise that there’s more behind you than in front. If you’re an actuary then you may have already calculated when your use of the term “midlife crisis” is valid. For the rest of us, without access to the actuarial tables, we can only guess and ask our consultants that question that they can’t answer to – “will Crohn’s shorten my life?”
Returning to the original question – do you think your job influences your attitude? Maybe I’ve got this completely the wrong way round and the question should be – do you think your attitude to your condition influences the job that you do?

Medical Records

This post has been prompted by the topics for #patientchat discussion on Twitter, “Medical Records” (#Tweetchat – Friday 4th August 2017 13:00 EST 18:00 BST).

I have touched on this subject before but it’s always worth revisiting. These are my experiences within three UK NHS Hospital Trusts and span 40 years.

These are the topics set for the #patientchat discussion

T1: Do you have access to your Electronic Health Records (EHRs)? If so, does that info help you actively share in your healthcare decision making?

T2: What are benefits to patients being able to view the notes that doctors, nurses and other clinicians write after a visit?

T3a: Do you sometimes find the amount and type of info available in your EHRs overwhelming and/or incomprehensible?

T3b: If so, what are some ways to make it easier to decipher and use in your decision making?

T4: What are your tips for keeping your healthcare records organized? Do you use any resources?

T5: Is it important to request past medical records from your doctors and keep copies for yourself?

T6: What do you think some of the barriers are to implementing EHRs? How can we work together to overcome them?

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 reults. 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 nothing. 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 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 OsiriX which opens and views the files. (The Lite version of the software is available as a free download). 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 are 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. There are a couple of examples below :

In Practice

In February I ended up in our local A&E (ER) Department as I had turned yellow. The first person I saw was a triage nurse who asked lots of questions about health conditions, history  and medications. When we had finished running through the various ailments she complimented me on my knowledge. (Definitely a result of researching and tabulating my health records)

Next I saw an A&E Registrar. Who asked the same questions but what would he have concluded if I hadn’t been able 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 platelet count was around 60. Valuable time could have been lost trying to investigate the wrong problems.

Do It Yourself

As a result of my A&E visit I wondered – is there was a standard, minimum set of data that should be available? Is there a standard format for the data? I searched the internet and could find nothing. I suppose a good starting point would be the questions the triage nurse had asked – personal details; current medication; current medical conditions; and any known allergies.

There are, of course, the likes of SOS Talisman bracelets which have some very basic information engraved on, or contained within, them. 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 appear to be US based only and the data held was not in sufficient detail.  How feasible would it be to produce a standalone, wearable device?

I had a go at making one using a USB bracelet. I settled upon two top level documents – i) a simple, overall summary plus ii) a detailed table that recorded each appointment or procedure. These documents are stored as pdf files and linked to various back-up documents such as laboratory or histological reports.

USB Bracelet

There is one problem. Security. Does an NHS computer allow the reading of an external USB stick or is access restricted to protect from viruses etc? (Particulary relevant since the recent cyber attack). I have a feeling this is a non-runner so I’m favouring storing the files on a secure server and potentially accessing them via a QR code on a dog tag (or even a wrist tattoo)

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…..