Guest Blog: How an annual review showed I'd made no progress

After my last post on the need to clean up the dirty language sometimes used by HCPs I was contacted by someone who asked if I'd allow an anonymous guest post and I was more than happy to do so. I hope, like me, you think it's worth sharing.

Diabetes, eating disorders and my annual review

Type 1 diabetes changed my relationship with food.

I developed an eating disorder but I didn't tell anyone. When I lost weight everyone told me how great I looked and how well I was doing, so I carried on. It was about control and I was very good at it! Everybody wanted to know my secret so they could lose weight just like me.

Eventually I couldn't carry on doing what I was doing. I'd controlled my eating so much that I could hardly eat. I tried to fix things on my own because I didn't want to admit what I'd done or what I was doing. At first I made progress and I was pleased with myself. I ate food and things didn't go wrong like I thought they would. When things happened that I didn't like I stopped until I got my confidence back and then I tried again. I wanted to have a normal relationship with food. But I wasn't addressing the cause of the problem, I was just trying to control it differently.

I'd traded one eating disorder for another. Now I struggle with a binge eating disorder. I'm putting on weight and people now comment on that. Eating disorders have been my secret for a long time. I don't like what I do but it doesn't stop me doing it.

I finally managed to tell my diabetes nurse (the one I see at hospital) what I was doing and I was referred to a psychologist. It seemed to take forever to see them even though it was only a couple of months. I'd unravelled my problem but had no help to put the genie back in the bottle whilst I waited.

Eventually I had my first meeting. Nothing really changed. Same with the next and the next and then something changed. Talking and thinking about what I was doing started to help me and the binge eating started to become less regular. The gaps between binge sessions stated to become bigger. I still had them, I still found it hard, but I was starting to deal with them better. I knew I wasn't better but I felt I'd finally started to make progress.

When I had my diabetic annual review with the practice nurse I realised I wasn't as far on as I thought I was.

She checked by blood pressure, told me my hba1c (7.6%) and then asked me if I wanted to be weighed.

I told her I'd just seen my diabetes nurse at hospital and had been weighed there. She seemed put out that I was seeing someone else about my diabetes but I carried on and told her my weight anyway. Then she commented that my weight had increased significantly since the last time I'd seen her. ARGGH! Tell me something I don't know! I have to see myself in the mirror every day! I thought they knew I had an eating disorder and so I mentioned that I was seeing a psychologist for my binge eating and then it got worse. She decided to lecture me, er, give me some advice.

"Well you know the difference between those who are over weight and those that are not? It's that they stop eating when they've had enough. They don't eat when they aren't hungry or bored."

WHAT???!!! That's not it? You really don't understand, you don't understand what I'm going through and you REALLY, REALLY aren't helping with your advice!!! If you asked me about what is going on rather than assuming then maybe I wouldn't be shutting down whilst sat in this room with you!

I just said "yes".

Thankfully she had no further advice to give and didn't want to check anything else.

I was going to ask why she hasn't checked my feet; what my urine results were, ask about all those other things you are supposed to check. Instead I just wanted to leave and that's what I did. Kicking myself.

I went home and binged. I hadn't done it for three weeks but this pushed me back to the bad place I've lived in for so long. In the evening I did it again. I've never binged twice in one day before. I feel like I've gone back to square one, no, to square zero.

The following day I woke with a bg over 22.
The first thought that drifted through my head was that it would minimise the weight gain.

So thank you to the practice nurse who gave their advice. It helped me realise I've made no progress at all.

I'm not sure if I'm more annoyed with what the nurse said or how I dealt with it afterwards.

I think I hate myself more for what I did.

The dirty language used in diabetes

It's been interesting watching the discussions about language coming from those attending the Diabetes Professional Conference this week. The use of the word "non-compliant" being a particular annoyance for both patients and HCPs alike. You can look back over the tweets from the conference by looking at the hash tag #dpc15 - there are lots of interesting tweets sharing information from the various sessions - well worth a read!

What really surprised me was how quickly the "non-compliant" word was used. Twitter was already talking about it at 8:52am on day one of the conference and exhibition only opened at 7:45!

Why is "non-compliant" such a dirty word?

Its definition in the Oxford Dictionaries is:

"Failing to act in accordance with a wish or command"

Ok, that's a loaded word!

In this debate about appropriate usage of words I have already used another contested word in this post. Have you spotted it?

Patient

What? Why? I hear you cry. Well in many ways it's linked with the non-compliance definition. Many see it as reinforcing the old view of the HCP-Patient relationship were a HCP gives "commands" and the patient duly "complies" - or "should" comply, otherwise they will be deemed "non-compliant" and poor outcomes will lie firmly at the patients feet.

Suggested replacements for the word patient include citizen or person. I remain to be convinced by these suggestions but I can understand why people are grappling with words.

Language and words evolve, times change, words take on new meanings and new words get picked up and spread so far they become part of the ever changing lexicon of the English language. As Laurie Anderson said: Language is a virus!

So the patient-HCP relationship should be one of equals rather than the paternalistic relationship of the past and "non-compliant" isn't a helpful phrase because it essentially puts the blame on the patient for less than ideal outcomes, without understanding the underlying cause for a patient not following the "commands" of the HCP.

Thankfully there are plenty who are thoughtful in their language and want to stop others from using unhelpful words and phrases, including Partha Kar who spoke about it in a conference session later in the week.

But "non-compliant" isn't the only dirty word used in diabetes healthcare.

Some will no doubt consider this discussion to be overly PC, but language is important. It can and does have an impact on the emotional well-being of people and so conveying the wrong meaning can leave lasting damage to a relationship and result in less than ideal outcomes. We have all heard the rhyme "Sticks and stones will break my bones but, words will never hurt me". Unfortunately judgemental words repeated over and over again do hurt no matter how much you try to ignore them and in turn they alter outcomes for the worse. So maybe it's time to be vocal about all of the language that isn't helpful.


What other dirty words exist?

I'm offering these as a starting point for discussion and I'd encourage you to share the words you believe are dirty or if you disagree with the ones listed here, please share your thoughts. If we don't have the conversation on how words are interpreted, how will people find out the true impact of the words they speak?

For the avoidance of doubt, the team I work with currently are most definitely in the enlightened camp and are very considerate when it comes to language (I wouldn't want to change them for the world and I'm not just saying that, I travel over 100 miles from my home because I believe they're worth it!) but unfortunately it hasn't always been the case.

Dirty Word	Suggested Word	Reason
control good/bad/poor	management	Usage: Do you have good control? Your control isn't as good as it could be. When it comes to bg management there are lots of things outside of my control: illness, stress, hormones etc, but I can manage my bg levels. If you think about it, if I don't have good control then I must have bad control - it's judgemental and leads to guilt and frustration. ...and whilst I'm using phrases like "good" and "bad" (or "poor") control in this explanation, these are very judgemental words too... it is much better to talk about target ranges, high and low bgs etc
diabetic	The persons name	Usage: The diabetic in room A/bed 1 Please don't dehumanise me! Don't name people by the condition they live with, they have a name and they are human.
normal	living without	Usage: A normal person would have bgs in this range Hang on, I'm normal too! Well as normal as anyone else is. If you call people without diabetes "normal" that makes me "abnormal", is that really what you are trying to say? A person living without diabetes is a better way to say it.
sufferer	living with	Usage: diabetic sufferer raises awareness Usually the newspapers are the biggest offenders of this usage but unfortunately I see more and more healthcare organisations using the term too. One NHS diabetes service recently tweeted: "IS THERE A CURE TO STOP PEOPLE SUFFERING FROM DIABETES?!" Sufferer implies a very negative situation, do I really suffer with my diabetes? Suffering sounds like I can do nothing about it. Yes, at times it can be tough but, I live with diabetes I'm not a "diabetic sufferer"!

A day in Parliament

The All Party Parliamentary Group for Diabetes held a meeting today (4th March) to launch a report on diabetes education and peer support, something they have been looking at over the past year. If you want to learn more about this work you can read my blog: A year on diabetes education.

The great and the good were in attendance and it was a privilege to be allowed to speak before ministers responded to the report's launch.

This is what I said:

The value of structured education and the wider value of peer support

I’d like to tell you a story.

Four years ago, on the 9th March I stumbled into a doctors surgery to be told I needed to go to hospital, it was serious, it was life threatening.

I was told I had type 1 diabetes and would need to inject insulin for the rest of my life.

A week later I was discharged with a diagnosis of type 2, handed a bag full of medication and two words of advice:

“Eat Healthy”

I went home with a condition I knew little about, no knowledge of what I needed to do beyond taking the pills and I needed to eat healthy. I felt very alone!

The following day I rang my GP surgery and because of an amazing practice nurse I started to feel supported. She spent time educating me and arranged a one day course on type 2 management. When I got my correct diagnosis of type 1 she arranged a half day carbohydrate counting course.

DAFNE

When my diabetes care moved to Sheffield, I was offered a 5 day DAFNE course. It was a significant improvement on the education I’d received at Doncaster.

DAFNE is a life changing course.

Without it, I wouldn’t have known what to do when I was ill - I’d have been hospitalised at least three times due to illness without this knowledge.

Without it, I wouldn’t know how to alter my insulin doses to enjoy hiking activities.
Without it, I wouldn’t know how to safely manage my condition when having a drink at the local pub.
Without it, I would never have spoken to some else with diabetes.
Without it, my reliance on the NHS would be significantly more and
Without it, I suspect my risk of life impacting complications would be much higher.

Peer Support and Our Diabetes

But despite the value DAFNE has brought to my self care management there are gaps and a significant one is how to deal with the emotional side. DAFNE provided me with the tools and knowledge to manage the treatment but it totally missed how to manage the emotional.

In light of this I founded (with another person with type 1) an online support community called Our Diabetes. We come together every Tuesday on Twitter, a social media platform, to discuss diabetes and each chat is hosted by a member of the community. The vast majority of chats run by people with diabetes relate to emotional well-being, titles such as.

• Accepting Your Diabetes
• Psychological Support – The emotional side of life with diabetes
• Mental Health and Diabetes control
• Diabetes and me
• and many more

It has allowed people in the community, like Diane Moran, to re-engage with their diabetes self-care. Diane explained after attending a DAFNE course, and I quote:

"I had heard so much about DAFNE from getting involved with the diabetic on line community [...] and was really in a ‘muddling along phase’ with my type 1 diabetes and getting nowhere fast. It was much easier than I thought to put my name down (via my hcp [...]) and I was exceptionally lucky to be able to attend the [...] course"

Throughout the week the community share tips, provides encouragement, share experiences and sometimes it’s just there to say “me too!”. As Scott Benner (a parent of someone with type 1) put it in his blog:

“You haven’t been hugged until you’ve been hugged virtually by a stranger whose only desire is for you to not feel alone. Now that’s support!”

Our Diabetes isn’t just for those living with the condition but for everyone with an interest in it. We actively encourage healthcare professionals, charities, partners and even (dare I say it) politicians to be involved too!

In fact one chat was hosted by the chair, Adrian Sanders, and was used to obtain evidence for the report launched today. I’m very grateful to the APPG for looking at this important subject and for reaching out to the community for their thoughts, some of which you can see on the monitor currently.

The Education Act

But I’d like to end with a bit of history.

On January 19th 1944 Rab Butler's Education Act cleared its second reading in the House of Commons. It paved the way for free secondary education for all.

People wanted to believe that after the war Britain would be a better place - a New Jerusalem was the phrase of the time - a country worth fighting for.

It’s time that diabetes education should to be provided to all. It shouldn’t be for the “lucky” few.

It changes lives for the better.
It will save the NHS money.
It’s definately worth fighting for.

Thank you.


The Report

You can read the APPG for Diabetes report: Taking Control: Supporting people to self-manage their diabetes here.

The JDRF UK news article about the report and the Diabetes UK news article.