A view from the other side - how one line hurt

Given I've been very vocal about my dislike of how care.data was being implemented, you might think it odd that I'm releasing all of my medical notes about my hospital admission in 2011 on my blog today, but there is good reason:

1. I'm in control - I'm the one that has decided how and what is being shared.
2. I believe things can be learnt from what is written in these documents and I'd like to explore them further with you.

If you haven't read my diagnosis story and how I went about getting hold of my medical records you might want to take a look at those now to get some context for this blog post.

When my hospital notes came through there wasn't any real order or structure to them, so I have tried to group them together into four roughly themed areas:

• Clinical notes
• Daily plan of care
• Assessments
• Results, Monitoring and Referrals

You can view them all in one folder using the link here if you prefer: All my medical records

I have redacted them to ensure any names and signatures (other than my own) aren't visible and that the medical history of others in my family are blanked out - I'm sharing my history, no one else's!

The main reason for requesting my notes was to understand the reasoning behind the change in my diagnosis whilst in hospital from type 1 diabetes to type 2 diabetes. Unfortunately I don't have any insight into that, but I have gained insight into many other things about my care at the time.

Some of the most notable things (from a people/process point of view) that I've learnt are:

1. Most of the paperwork doesn't support what HCPs want or need to record.
2. I feel there must be a lack of education on how HCPs are expected to fill out these forms.
3. Shorthand and legibility issues are rife within my notes!
4. Communication was extremely poor.
5. The healthcare system still hasn't got its head around the idea that patients might want to see their own medical records.

In later posts I will "unpack" my thoughts around those areas, but maybe, if you take a look at the records yourself you might understand what I'm getting at before I post about them :)

Instead, in this post, I want to highlight something I found in my notes that made my extremely angry and upset. As I have already stated, I purchased my medical notes to find out the reason for the change in diagnosis. The notes do not give me that reason, but that is not the reason for my anger or the reason for me being upset. It was what I found written on page 14 of the clinical notes grouping...

The comment that angered and upset me

"11th March 2011: Refer to GP on discharge as possible change to insulin if diagnosed as DT1."

That one line, buried in all my notes, hurt.

If the individual who wrote that note knew the cost of not checking my diagnosis whilst I was in hospital, I would hope they would never do it again.

If they knew how many nights I sat at home not eating...

If they knew how I became fearful of food...

If they knew how, even now, I still have issues with certain foods...

If they knew...

If they knew a simple and cheap GAD test would have changed my post-diagnosis life significantly.

Instead, I left hospital with a 100% categorical diagnosis of type 2 diabetes. I was given absolutely no doubt what-so-ever and unsurprisingly I failed to manage my true condition on Metformin, Gliclazade, exercise and... not eating.

Until that note was written by the DSN, everything in my notes said I had type 1 diabetes.

Both my wife and I were told I had type 1 diabetes and that I would require insulin for the rest of my life.

Everything written after that note said I had type 2 diabetes.

...and so I sit here thinking "Why?" and "What if...?"