Originally this blog post was going to be about my experiences of getting a pump and the huge difference this has made to my life with diabetes - and maybe at some point I will post about that, but not today.
Why? Because, whenever I sat down to think about what I would write, there has always been another thought in my head that seemed more important to share and when I thought about it more and more... I realised it was the most important thing.
A bit of background
Over the past couple of years I've been struggling with my diagnosis.
For some of that time I've not even realised this myself.
Indeed, withdrawing from the running of Our Diabetes (something I do feel bad about) was in part to give me space to resolve the challenges I've been dealing with.
In the days Before Pump (BP) my diabetes regimen was ridiculous. I was seeing the DSN at the hospital every month (sometimes more!) in an attempt to gain insight into how to manage my glucose levels. Yet no matter what tweaks to the ratios were made; no matter what new "rules" were test driven; no matter what basal rate changes where made; or indeed what different insulins were explored, nothing would get me to where I needed to be.
To give you a little example of the regimen I was following I will share the "rules" around having my evening meal:
If eating between before 7pm use a ratio of 1.5 units per 10g of carbs
If eating between 7pm and 8pm use a ratio of 2 units per 10g of carbs
If eating after 8pm then use a ratio of 2.5 units per 10g of carbs
UNLESS the food has a high fat content in which case add 0.5 units to each of the ratios
UNLESS going for a walk after the meal in which case complete the calculation above and reduce by 20%
Correction ratios should remain consistent across all time bands at 1 unit per 3mmol/L UNLESS...
You get the idea. Breakfast and dealing with exercise wasn't much better either! Only lunch was easy to deal with - 1 unit per 10g of carbs. FULL STOP.
All this effort would be made just to get me to a good bg number I could go to sleep on and in the main it did. However, pretty much without fail, I would wake in the 20s (even if I woke in the night to do a correction dose) and I'd spend most of the day chasing my numbers down to something more reasonable.
My bg diary notebooks would resemble the workings out for an A level maths test and sometimes I'd make mistakes - because running so high all day, day after day was extremely tiring.
The arrival of the pump changing things immediately. After Pump (AP) it was like being on a diabetes holiday. All my ratios returned to 1 unit per 10g of carbs and all of a sudden my numbers would spend most of the time under 10mmol/L without any effort required - not where I want to be but a significant improvement on where they had been. The notebooks were ditched and every meal was a simple carbohydrate count.
The "holiday" is now over and I'm looking to get my hba1c back to where it used to be and what's great is I'm enjoying the challenge. When my basal requirements change it's not a feeling of disappointment and despair, it's a feeling of "let's do this!"
You lied! The pump is the thing you value most!
No doubt about it, the pump has changed my life - my numbers are more in target, my ability to exercise has been reclaimed, but it's not the thing I value most.
It's not because I don't value it... far from it! It has been one of the best interventions in my diabetes management to date.
But the fact it's not top of the list really puts into perspective just how much I value this other thing. The thing that knocks the pump from the top pedestal.
So what could it be?
Simple. It's PEOPLE
What's really got me through my diabetes journey isn't technology, it's the people around me!
My wife. She's "put up" with me being miserable, grumpy, tired, irritable, no doubt impossible to live with at times and throughout all this she has been there for me.
My friends on social media and work, some of whom I've shared some of my challenges with. The ones who have just listened, have understood, have offered support and ideas and never judged. You know who you are - thank you.
...and.... as equally important, my healthcare team. A team I know would move heaven and earth for me if required so they could get me the care and results I need. Over this period of time they have been patient, they've listened, they've offered advice, they've never given up, they've invested in me and believed in me and all of that has paid off. The care and compassion shown is truly outstanding. I consider them my extended family and I'm truly blessed to have them by my side. I leave clinic with a smile on my face knowing just how much they want me to succeed.
It might be raining outside whilst I write this blog but inside I'm full of sunshine.
So this post is dedicated to you - my friends, my family, my extended (healthcare) family - it's you I value the most!
That was pretty much the question I was asked by a medical design and development company.
Well they asked me quite a few questions actually, they asked me to make a model representing my diabetes and to take some photos of what was important to me in managing my condition too. It was fun and interesting!
It was interesting because despite learning everything I can about my condition, learnt the processes of managing it, I've never really explored about how I actually feel about diabetes itself - a part of my diabetes journey I'd never really explored.
So I took up the offer to share some thoughts. I'm sharing my responses here and maybe it will get you thinking and sharing what diabetes means to you too.
So what where the questions I answered?
What does being T1D mean to you?
It means I have a second full time job. One with no holidays or time off and one were I have to work harder whenever I'm sick. Although it is only a small part of me, it's something I can never forget about.
What is your ritual for managing your condition (if you have one)?
Timings and testing.
My fitbit alarm goes off every day at 11pm and I stop whatever I'm doing to inject my basal insulin.
When hypo I refuse to treat until I have a bg test completed - much to the frustration of everyone around me (and indeed sometimes myself!) who can see I am clearly low and need to treat.
Is there a worst thing about having T1D, and if so what is it?
Dealing with the other health issues generated by it, the list continues to grow!
The hard days such as waking with a high bg - getting out of bed and out to work requires a huge amount of mental effort to overcome the physical impacts while the insulin works its magic.
Is there a best thing about having T1D, and if so what is it?
The people I've met because of it (both in real life and virtually on twitter).
The opportunities I would never had had without it: working with the parliamentary outreach team; speaking at parliament about diabetes education; creating (with the help of others) an online community of patients & HCPs around diabetes. Opportunities that hopefully contribute to making a difference in diabetes care.
How in control do you feel of your diabetes and how do you try to keep in control?
I wouldn't use the word control. I prefer the word manage. Lots of things sit outside of my control such as illness, stress, hormones - but I can try and manage my bg levels. (See my blog The dirty language used in diabetes for more details on the distinction).
I manage as best I can with the tools I've been given. I am currently struggling to maintain a sensible range whilst awaiting a funding decision on an insulin pump that should allow me to manage better.
I try to manage my bg targets by good record keeping, replacing needles and lancets after each use, rotating sites, regular reviews with my DSN and consultant and simplifying things when times get difficult ie. eating lower carb meals, reducing unplanned exercise etc
What about the model?
I'm no artist (as you will see!) but I had great fun using the Sugru modelling glue provided to make my model. You might think he looks cute but diabetes is definitely not cute - far from it!
What name or title would you give the character or object in your model?
How does your model represent your relationship with T1D?
ERNIE reflects how cheeky and random diabetes can be
Please explain why you have modelled your condition in this way and give details about any specific elements of your creation e.g. colours, shapes, additional props etc. and what they represent?
The blue represents diabetes. It's a part of me, but not all of me and it can't be taken out of me.
The dice represents the bg readings he gives me. Sometimes it can feel like luck (or bad luck) with no logic or reason for the number given (hence his name).
The rule book - the pages are blank because sometimes he seems to like to change the rules, usually just as you feel like you've finally mastered them.
He looks at you with needy eyes and the more you pander to him the more he behaves... you hope!
What do each of your photos represent to you and your condition?
DAFNE and Diaries
Structured education has made a huge difference to me in managing my condition.
Without it I wouldn't have the knowledge to manage a whole range of issues such as sickness, drinking, exercise etc
The diaries (not all shown here obviously!) record every meal, bg test, insulin dose and time injected since starting on insulin and allows me, my DSN and consultant to reflect on what changes would help to improve my bg management.
Without the needles, lancets, test strips, glucose tablets, ketostixs, etc I wouldn't be here - I guess that makes them important, so important an entire cupboard in the kitchen is dedicated to storing them.
Medical requirements fill the cupboards
...and the fridge! No eggs here!
...and of course insulin can be found in the fridge where the eggs should be.
I guess the photos here show how diabetes takes over the kitchen and is a physical impact on not just my life but those who I live with too.
Peer support. Hugely important to me... so much so I created a community with the help of another PWD!
DAFNE can give you the knowledge, HCPs can give you the technical support, peer support gives you the emotional support, removes a sense of loneliness that can come with the condition and helps educate you on new and best practices.
Peer support
Want to see what someone else thinks about diabetes? Diabetes is an arse
What about you? What do you think?
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!
"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"!
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.
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.
"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"
“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.
The All-Party Parliamentary Group (APPG) for Diabetes has spent the last year investigating the state of diabetes education. They've collected evidence from a wide variety of sources including HCPs, academics, commissioners, providers of education courses and patients to better understand the different types of learning and support available, the gaps in service and to identify reasons for low uptake when structured education is offered to individuals.
Part of the evidence presented to the APPG came from the Our Diabetes tweet chat back in August hosted by Adrian Sanders MP (chair of the APPG) with the help of JDRF UK.
Four questions were asked:
Question 1: Where do you currently look for advice & support to help you self-manage your diabetes?
Question 2: What gaps are there in the current provision of education? What other training & support would you or your family find useful?
Question 3: How should education and support best be delivered and by who?
Question 4: How confident do you feel that you know what diabetes education and support is available to you – both locally and nationally?
The evidence collected has been written into a report which will be submitted to the Department for Health and disseminated among Clinical Commissioning Groups.
So why am I telling you all this?
The report will be launched by the APPG on the 4th March at 12:20-2:30pm in the House of Commons and if you believe (like I do) that diabetes education is an important part of self-care and should be available to all, I would urge you to contact your local MP and ask if they could attend the launch. The more MPs we can educate on the dire situation diabetes education finds itself in the more chance things can and will be changed for the better. I'll give some you pointers on how you could do this at the end of the blog.
After the launch, a copy of the report will be made available to download from the JDRF website and I will update this blog with a link to it once it's available. I'm also hoping to tweet throughout the event using the #APPGdiabetes hashtag to give you a flavour of what's being discussed.
I've been asked to speak at the launch and I feel very privileged to be allowed to speak about something I care so passionately about. I would like to thank JDRF and the APPG for giving me this opportunity.
I'll be sharing some of my own thoughts and experiences on diabetes education: how it has impacted me; why I believe it's important and; why it shouldn't be something limited to the "lucky" few.
Thank you for helping put diabetes education on the agenda and thank you to Diabetes UK, JDRF UK and the APPG for all the hard work they've put in over the past year!
Contacting Your MP
For some, the first thing to do is find out who your MP is! Thankfully finding your MP is easy, you just need to visit the parliament website, enter your post code in the keyword search box and click the "go" button. You will then be presented with all the contact details of your local MP.
Many have Twitter and Facebook accounts providing an easy way to contact them, some have websites with a contact page or email address you can use to get in touch and if all else fails they will have a telephone number you can call.
Ideally it's worth contacting them via email or telephone so you can provide more detail on why it's important to you that they attend. If they can make time to attend the launch please thank them for supporting your request and if you mention them on Twitter please include the #APPGdiabetes hashtag so everyone can see who's supporting and attending.
When you contact your MP here are some facts you might like to share:
Diabetes costs the NHS £9.8 billion a year in direct costs, in large part due to complications that are mostly preventable. With approximately 98 per cent of diabetes care falling to self-care, education and support are key to the successful day to day self-management of diabetes and have been shown to reduce the risk of complications, improve quality of life and reduce the costs of long term care. However, less than two per cent of people with diabetes were recorded as having attended structured education in the last National Diabetes Audit.
If you are having trouble working out how to contact your MP I'm more than happy to help, either leave a comment here or tweet me (@davidcragg) with the problem you're having.
Two topics in one blog post? Well, they are kind of related and I'm in a cost and time saving mood...
Why measure?
Recently I've (unfortunately) been going to the hospital and my new GP practice a lot more than normal. Sometimes I've had hospital visits twice in one week and although the observation I'm about to make has struck me as odd before, these regular visits have made me question what is going on even more.
Every time I've had an out-patient visit something happens and yet, nothing happens.
What happens? I get weighed and my height is measured.
Now I'm being a bit harsh when I say nothing happens because in reality the results get recorded on the system but, after that, nothing happens.
If I were to visit the hospital today, my weight and height would be recorded. If I visited tomorrow, I would (once again) be weighed and my height measured.
No one stops and thinks "Oh, this was recorded yesterday, no need to do it today". It seems to "just be the procedure". It seems a waste of time and effort.
What's worse is that no one seems to look at these measurements or, if they do, they see no reason to discuss them with me - yet they should. My weight has increased by over 50% in the last year and my BMI wasn't in the green zone to start with!
So why is this procedure blindly followed every time I visit hospital or visit my GP practice?
If the data isn't used, why collect it in the first place?
If I refuse to be weighed or have my height measured I suspect I'd be deemed a non-compliant patient, which nicely leads on to part two of this blog post...
Is it waste or non-compliance?
I have a new GP!
I have no idea who they are. I don't know their name as it could be any one of the GPs at the practice I've registered at, but I'm sure the system knows who I've been nominally assigned to.
If it's anything like the last two practices I've been registered with, I suspect I will never see them. Instead I'm always seen by the practice nurse, because I'm "special"... I have type one diabetes... which is fine my me - being seen by the practice nurse, not so much the diabetes bit!
When I initially registered I was told that they no longer do "new patient assessments" - fantastic. I always found them to be annoying time wasting activities imposed on me so I'd be allowed to order a repeat prescription. I asked how my repeats would be setup and (unfortunately), whilst casting their eye over my last repeat prescription, they back tracked a bit and said "well the GP might want to see you before setting all this up".
I realised, the following week, that I hadn't asked about sharps bins. Unlike my previous two addresses, were the council both took away and replaced sharps bins, my current council only takes sharps bins away.
I went back to ask how I could get a replacement sharps bin. Apparently I need a sharps bin to be added to my prescription (which to this day still hasn't been done). The council will come and collect my bins on the 8th so it might be an interesting challenge to store my medical waste soon!
Anyway, whilst this was being discussed I was told that I needed to be booked in to see the practice nurse to discuss my diabetes and get my repeats setup etc... sounds like a new patient assessment to me! As a "compliant" patient I set up the appointment, after all, if I didn't get my repeat of insulin I'd be putting myself at risk of dying - no small incentive.
Unfortunately the practice nurse was ill on the day I was meant to see her and the GP practice rang to rearrange for the following week.
The day arrived. I go with my urine sample, all of my notes and a list of issues and questions I'd like to discuss - I always go prepared.
Some of the numerous forms I filled in to register at my current GP practice.
Including key questions: Do I smoke? Do I drink? Do I exercise?
I get weighed; they measure my height; they do my blood pressure; ask if I drink?; do I smoke?
...and a couple of surprise statements/questions: You have type two diabetes. What other conditions do you have?
At registration I'd provided a printout from my previous GP listing everything about me. I'd also filled in numerous forms to register with practice too (one of which asked if I smoked, how much I drank and the amount of exercise I do). I also knew that (because they'd taken so long registering me) my previous GP had managed to send through everything they had about me. Heck I even knew (via the EMIS patient portal) that my repeats had been setup and so this meeting was a complete waste of my time - I didn't need to be here to get my repeats setup as I'd previously been told! So why was I being asked all this stuff - again?
The NHS love to record when and how much I drink & smoke.
Just like weight and height - it's an obsession.
Even when I was admitted to hospital on the verge of coma I was asked! Yes, I know, there is good reason for this... but I must always disappoint them when they get the same response:
"only for celebrations and no, never"
How boring! ...but every time it's as though they're asking these questions for the first time. No one has ever said "We've recorded on the system that you don't smoke, is that still the case?". Why bother recording the information if it's never going to be looked at again?
Then the question (spoken as a fact), that always annoys me, was made:
"You have type two diabetes."
I interject, "No I don't. I was mis-diagnosed with type two diabetes. I actually have type one."
"Oh. What other conditions do you have?"
I mention Raynauds.
"How do you spell that?"
The system shows three different options for Raynauds and I point out they all describe the same condition. She selects one and then asks me a question about it that makes no sense what-so-ever. She decides not to explain, presumably because she doesn't know what the question means either.
I sit there wondering why I'm being asked all this when they have all of my medical notes already. Maybe they're doing this to check the information is right? Well if I didn't have type one diabetes I wouldn't be here, so it can't be that... besides, she's typing this stuff into the system whilst I'm here. Why hasn't it all been imported electronically already?
...and then it is back to discussing my diabetes...
"Have you had a retinal screening this year?"
"Yes, 8th of May" (I know this because I blogged about it: Eyes Wide Open)
"Was it ok?"
"Yup, no problems."
"Ok, we'll get you added to the system to have one later then."
Then came the shocker.
"We need to set you up with a couple more appointments. One to have a fasting blood test and the other to see the diabetes nurse at the practice."
What started as not requiring any appointments has turned into three!
So I'm booked in next week for blood tests (let's hope I don't go hypo before that one!) and the following month to see the diabetes nurse to discuss whatever it is she wants to discuss - assuming I go. At some point someone needs to re-test my potassium levels... I seem to be the only one concerned about this, hopefully I can convince them to do that next week otherwise I'll cancel the appointment with the nurse because I don't see any value to it.
As the practice nurse starts to send me on my way I say I have a few concerns and questions I'd like to ask. It turns out she can't help with any of them, only the diabetes nurse can deal with these when I see her next month. I guess I'll just plod on by myself then.
So I leave in the knowledge that my time has been wasted, but I'm sure they found it useful as they've managed to collect some QOF points along the way.
Eye Screening Invitation
Then to my surprise I receive an invitation in the post to book a retinal screening! It's not even been 3 months since my last one and they know it!
It would seem the cost of providing this service is about £25, but the cost and inconvenience to me is a lot more. Every location available is a car journey away, but once they've put the drops in my eyes I won't be able to drive for up to 6 hours. That means I either have to ask my wife to take time off work (as well as myself) in order to take me or a rather expensive taxi ride each way.
So I have a choice. Either:
Waste NHS time and money as well as my own (and mess my employer about by taking time off work) and have another retinal screening, despite the fact my screening in May didn't even have signs of background retinopathy, or
refuse to go on the basis that it is less than three months since my last one and then I have a GP practice thinking I am an awkward, non-compliant patient.
I guess I'm going to be a non-compliant patient, but why do I feel bad about saving the NHS time and money? Why do I feel like I'm being used rather than getting care?
Unfortuntely I have very little choice over who I can register with, I just hope they don't hold me to ransom like my previous GP when it comes to ordering a repeat prescription.
Earlier this year I was asked if I would be involved with a small (but growing!) group of people talking with the Parliament Outreach team about the use of social media. Since then I have attended a number of #ParliTeaCamp meetings at Portcullis House discussing a wide range of topics and, if you follow me on Twitter, I'm sure you would have seen a few tweets from me whilst attending these meetings!
These meetings have been extremely interesting and rewarding. By getting involved I've personally learnt a lot about Parliament, social media and how communities work and grow and I hope my own contributions have been useful to others too. Through this involvement I have also had the opportunity to meet some amazing people who do amazing work!
So, when the Parliament Outreach team asked if I'd be interested in Our Diabetes doing the a live tweetchat, using the "Melbourne Declaration on Diabetes" debate at Westminster Hall, I jumped at the chance.
What actually happened
Being the first to attempt something like this envitably means you hit a few barriers. We successfully managed to negotiate them with the help of the Outreach team and run the first live #ParliChat tweetchat during the debate.
The initial idea was to tweet directly from within the debating hall but unfortunately security at Parliament put the first roadblock in our way... members of the public aren't (currently) allowed to take electronic devices in the debating chamber!
Hopefully this policy will change in the future. I feel it's a great way to get people involved in (and understand) the workings of Parliament, sharing with a wider community what is being discussed there directly with the people it relates to. When filtered through mainstream media most of what Parliament does seems to gets lost...
...After all, how many people saw anything in the media about this debate? I didn't see anything mentioned and yet around 3.2 million people in the UK would have a direct interest (having either type 1 or type 2) in this debate!
Plan B involved watching the debate via a Parliament TV live stream and this worked for most, but a few people had problems accessing the stream. I'm sure lessons will be learnt from this and any issues identified will be resolved in time for future chats... and I certainly hope future chats take place.
In preparation for the Tuesday #ourD tweetchat I thought it would be interesting to take the Hansard transcript and create a word cloud to highlight the most common words used during the debate. I found it very heartening that after the word diabetes the most common word was people - after all this condition is all about people!
The debate as a word cloud - click to enlarge
Who got involved in #ParliChat
Given the time of day, I wasn't sure how much engagement we would get
during the debate itself, but I was pleasantly surprised to see the number of people joining rise as the debate continued: from diabetes consultants and diabetic specialist nurses to patients with diabetes and parents of those with diabetes; from Cardiff and Vale UHB (who are one of the largest NHS organisations in Wales - a pleasant surprise given health is a devolved power!) to JDRF UK (the largest type 1 diabetes charity in the UK); to diabetes device manufacturers and everything inbetween. We also had
Jamie Reed MP (Shadow Health Minister) and Adrain Sanders MP (who moved the debate) engage in the chat.
In total 55 people got involved, creating 315 tweets reaching an estimated audience of nearly 375,000 people and approaching one million impacts on Twitter timelines. A fuller breakdown of these analytics can be found in this pdf document.
What did I take away from the debate?
Overall I came away with a much greater understanding of how many MPs are "blessed" (as Jamie Reed MP put it) by diabetes who have a real passion and commitment to tackling the issues around diabetes as well as how much work goes unnoticed by the public.
I wouldn't consider myself a political animal and I certainly wouldn't want this blog to become one, but I do have to confess I was somewhat disappointed by the response from the government given by Jane Ellison (The Parliamentary Under-Secretary of State for Health) and I felt those in the debating chamber felt this way too as she gave way several times to MPs.
I will finish this blog by listing a few of the points raised that struck a cord with me. I would be interested to know what parts of the debate struck a cord with you by joining me on Tuesday 24th at 8pm BST in the #ourD tweetchat and/or by adding your comments at the bottom of this blog.
1. Statistics were discussed throughout the debate
Diabetes caused 5.1 million deaths in 2013 or to put it another way, "every six seconds a person dies from diabetes somewhere in the world".
Our annual intake of sugar is 33.7 kg per capita. To put that in perspective, it is equivalent to eating nearly 34 average-sized bags of sugar each year.
Up to 80% of type 2 diabetes could be delayed or prevented.
In the UK this year, 59,000 people will die unnecessarily from diabetes.
2. Many in the debate asked for a UK wide strategy
Jamie Reed: Diabetes UK [...] endorses the view that there is a clear need for a national action plan. It has identified five key areas that must be included. Those are: improvement in support for self-management; integration of care; improving safety; a focus on children and young people with diabetes; and prevention of type 2 diabetes. I am sure that if the Government introduced a comprehensive action plan built on those five principles, it would receive the support of the entire House.
The Parliamentary Under-Secretary of State for Health (Jane Ellison):
I accept that there is a challenge about the need for a national action plan.
[...] Nevertheless, I currently have no plan for a UK-wide strategy because health is a devolved matter.
Jim Shannon:[...] but we had a UK-wide strategy until 2013—last year—so we have shown that we can work together. All I am asking really is: why we do not initiate a similar plan to what was there before 2013—a 10-year plan that started in 2003—and have the four regions work together? That is exactly what the Melbourne initiative is about, and we could do it because we have done it before.
3. Education was also a strong theme (and one I have strong views on too!)
Jim Shannon:Only one in 10 people who are newly diagnosed with diabetes are offered education on how to manage their condition, despite strong evidence that education is a cost-effective way of giving people the knowledge that they need to manage their condition. On managing diabetes, after someone is diagnosed as diabetic, what help is given to them to ensure that
they manage that in a sensible way?
Mr Sanders: The point about education is interesting. According to the National Audit Office, the estimated amount that the NHS could save annually through people better understanding and managing diabetes is £170 million. That is just from improved awareness and education.
Jamie Reed: There is an issue with not just numeracy, but literacy, and there are also issues about social exclusion, which I am sure we are all aware of. We need to put some time and effort into understanding and resolving those issues if we are properly to increase self-management among diabetics.
4. Use of Data
Jamie Reed shared a vision of the future that I'm not sure is a "utopian world", but smarter use of data certainly has it's place. Ownership of data and privacy concerns will be important issues to resolve and a public dialogue needs to begin before this takes place.
Jamie Reed: "... the most important issue in managing my condition is having access to data about it, such as my blood glucose readings and my insulin ratios. We need a framework and a strategy for medical innovation that incorporates diabetes research—from not just a scientific point of view, but a patient’s point of view—in a profound way. How can we become the
best country in the world, in terms of medical companies and other pharma-based industries developing new and innovative ways of treating diabetes? [...]
I look forward to the day when my data can be
captured in real time and shared with my GP and my pharmacist, so that I do not have to phone up, text or e-mail to get my insulin prescription. My GP and my pharmacist will have the information and the algorithm, they will know when my prescription needs to be ready and how much I am using, and my doctor will know how I manage my condition. We can hothouse innovation—my office and I are doing an awful lot of work on this—but we need to make that innovation part of not only a national
diabetes strategy, but a biotech and medical innovation strategy."
5. Patient Empowerment
Jane Ellison: People cannot be empowered without information.
Jane Ellison:
I want to discuss another area in which we can make a difference by empowering patients. Colleagues might be interested to hear about the patient experience of diabetes services survey, part of the national diabetes audit, in which I know there is always great interest in the House—we regularly answer a number of parliamentary questions about it.
The survey measures the health care experiences of people with diabetes in England and Wales. It collects information online from people with diabetes by asking questions about their care using a short, validated questionnaire, and it is being tested.
Jane Ellison: Public Health England is developing a tool to drive improvements in diabetes care and iron out variation. It will be launched later this year, and although I am not able to give much detail now, I am sure that my hon. Friend the Member for Torbay will be interested when it is launched. It will provide a clear picture of how diabetes care and
outcomes vary across the country and among practices, which will support decisions on how to make improvements.
Having had sight of this tool ahead of its launch I can only agree with Mr Sanders comment:
One of the challenges of a bottom-up approach, as has been highlighted in this debate, is getting people to use the information that is out there to drive up standards. People need to be aware of where the information is and how they can best use it, which is a challenge not only for diabetes but across the health service.
The tool visualises data that has already been published for some time. It is all very well showing patients how good or bad their care is, but if you don't tell those same people how they can effect change to improve their care then it doesn't empower patients at all!
Jane Ellison: That body [NHS England] is implementing what it calls a customer service platform to allow patients with diabetes to self-manage, through booking their own appointments, managing their prescriptions, monitoring the care they have received and being able to view their personal health records.
Clearly my view of self-management is very different to that of the Parliamentary Under-Secretary of State for Health! Being able to book appointments and order repeat prescriptions are useful tools, being able to view my health record would be wonderful - in theory all of these things COULD be delivered now (and some areas do provide all of these tools) but even if they were universally available it's nowhere near what I would consider required for self management!
6 Working together
Jamie Reed: It would, therefore, be a tremendous gesture—not for its own sake, but from the point of view of those living with this condition—if Members who understand type 1 and type 2 diabetes were allowed to contribute their knowledge and experience to the production of a better plan that would better suit those with this condition.
Jane Ellison: ...I encourage Members to tell us of effective local initiatives, so that we can spread the word.
7. The Melbourne Declaration
Since the declaration was signed, over 100 parliamentarians have signed up as members and many more have declared themselves supporters. Two newsletters have been published and are hosted on the International Diabetes Federation website, a Twitter account is now active.
Following the declaration and events in Parliaments around the world, the ExPAND Policy Toolkit for Diabetes has gone live and will greatly assist the aims of the declaration. It is a practical guide to help diabetes advocates to challenge national Governments and to raise the profile of diabetes.
Each day diabetes bloggers around the world will be writing a blog post on the same topic. You will be able to see who is taking part and what the daily topic is at Bitter Sweet Diabetes.
This is the first year that I have taken part and I've found it extremely challenging. They certainly aren't topics that I would
normally choose to tackle, but sometimes it's good to be outside of your comfort zone!
Todays topic:What Brings Me Down
May is Mental Health Month so now seems like a great time to explore the emotional side of living with, or caring for someone with, diabetes. What things can make dealing with diabetes an emotional issue for you and / or your loved one, and how do you cope?
My response:
The dreaded buffet!
Many of my blog posts to date have covered some of the things that "get me down".
A recent example of this was when I attended a Christening and the obligatory buffet food that was served after the service.
Whilst everyone else went up to the table to fill their plate, I was sat trying to work out what my meal was going to be, how many carbohydrates it would equate to and what were the chances I'd go back for more.
By the time I had worked out the calculation and injected the appropriate dose of insulin, most people had already sat down and were engrossed in conversation... just as I left to fill my own plate. It can feel quite isolating (as well as stressful) when you are in social situations and have to work out carbohydrates for food you wouldn't normally eat.
Applications such as Carbs & Cals and MyFitnessPal help but it still takes time and energy. A growing number of coffee shops, fast food chains, restaurants and bars are now providing carbohydrate information too and I have tried to document them to help myself (and maybe others too) when out eating: Who helps you carb count when eating out?
The other main area that I find difficult is the lack of control, or perceived lack of control.
The repeated highs or lows, the hungry "hypo monster" and those "If I'm injecting, I may as well make it worthwhile" moments.
I won't dwell too much on these today as I'm sure you have all had these moments. They can all chip away at your positivity.
When you have to sit and wait in the passenger seat of your car for 45 minutes whilst you become road legal (just so you can drive the 20 minute journey home after work) it can be difficult to see the positives in the experience... BUT the #doc is great therapy... they are there when you are low (in both senses of the word), they are there when you are high and most importantly they understand what you are going through... then it's not so bad and you see all the amazing people you have come into contact with because of your diagnosis.
I had some gaps in my memory and I didn't understand how my diagnosis from type 1 diabetes on admission changed to type 2 diabetes on discharge.
I thought it would be interesting to find out if I could obtain information and gain answers to my questions by requesting all of the records detailing my stay in hospital.
Requesting access - challenge accepted!
Requesting copies of your medical files is a fairly straightforward process... once you know how to do it!
My stay in 2011 was at Doncaster Royal Infirmary and if you want to see how hard it is to find out the process, I suggest you spend a few minutes now trying to find details of the process from their website.
To make it easier I will give you a head start. This is the website for Doncaster Royal Infirmary and there is a lot of information detailing (for example) how Freedom of Information requests are dealt with. If you are interested in details around FoI requests you can find that here: Doncaster Royal Infirmary FoI request information.
When you have given up trying, please come back here and I'll share with you a secret :)
Gaining access to your records is not done via a Freedom of Information request.
To gain access to your records you need to send in what is known as an "application for subject access to health records", which for living individuals is covered under the Data Protection Act 1998.
Now that you know the mechanism for requesting medical records, you might want to try again to find details of the process on their website. Any joy? No? Me neither!
I still don't know how you obtain this information from their website without resorting to Mr Google. Mr Google is a friend of mine and helped me find this link to a document on their website: Processing Requests for Access to Health Records Procedure.
It was from this document that I worked out my first step was to fill in the form provided in appendix A and send it in to the Health Records Manager at the hospital.
You might want to see how easy your own hospital makes it to understand the process you would follow to obtain copies to your own records and share your successes and/or frustrations here.
Interesting Discoveries
Reading the documentation I found some interesting facts:
They can charge a fee of up to £50 to obtain copies of your medical notes and they can take up to 40 days from receipt of payment to provide them.
If you only want to view them at the hospital and you don't want or need your own copies, you can do so for £10.
If the Department of Work and Pensions ask for copies of your medical notes, they will be provided with them for free and within 10 working days of receiving the request!
Your request will be logged in your case notes: "ensure that a record is made in the health record that subject access has been allowed / limited to relevant sections of the notes. Hospital casenotes will be stamped on the front inside cover to indicate the date and scope of access".
and you might not get everything you requested if they judge it "might cause serious harm to the physical or mental health of the patient or any other individual, or where a third party might be identified." There is also no requirement for them to disclose that information is being withheld.
My Request
I rang up the department before filling in the form to double check I was doing the right thing and they were very helpful. They confirmed the process (and the fees!) and pointed out it would be much cheaper (£10) should I wish to review my records with a HCP at the hospital (who would be able to explain the records to me).
I wanted my own copies, so I filled in the form and sent it by first class post and then waited for a response.
I received a letter (within the timeframe allowed) telling me that it would cost £26.25 to obtain copies of my records and that I could pay by sending them a cheque or by card or cash if I paid in person at the cashiers office. I decided to ring up and see if I could pay by card over the telephone and it turned out that I could.
They said they would transfer me to the cashiers office and then check 15 minutes later to see if payment had been made. If it had, they would send the notes out to me by 1st class post.
The following day I had my hospital notes!
Did they answer my questions? No and possibily created more questions than answers.
Did they help me remember certain things? Yes they did.
Did I learn anything new? Most definitely!
In my next post I'll show you some of the things I learnt and some of those observations "from the other side".
In part two of my diagnosis story I'd been living my life as someone with type 2 diabetes and made big changes to my diet and exercise patterns. I'd lost a lot of weight and continued to do so. At my quarterly appointments I'd been encouraged by the progress I'd made, but the requirement for pills hadn't gone away. Slowly but surely it was getting harder and harder for me to keep control of my blood glucose levels and with my motivation based around working towards a no pill solution, it was upsetting to see myself failing and requiring more and more medication.
In an attempt to minimise the tablets (and ideally remove the need) I looked at the two things that really were in my control - exercise and food. I had already increased my exercise levels and I was regularly going on 10+ mile hikes at the weekends, at work I was using the stairs rather than the lift to get to the twelfth floor etc and so that left the only other variable - food.
This is how the gamification of my condition led to some "interesting" choices.
I understood that eating carbohydrates increased my blood glucose levels and that the medicine was getting less and less effective at bringing my levels back into range. Therefore, if I eliminated or reduced the carbohydrates from my diet then I'd minimise the blood glucose highs.
Foods started disappearing from my diet...
All fruit except berries (raspberry and strawberry) caused bg highs - REMOVED!
Pizza would cause bgs to run high for days - REMOVED!
Pasta - REMOVED!
Eventually it would be the same for rice - REMOVED!
... you get the idea, a lot of foods disappeared from my diet!
In the end I was eating three small meals a day with no snacks inbetween.
If I was really hungry in the evening I would sometimes relent and have something from my choice of three "cheat foods":
Cheese and two crackers (4.5g of carbs per cracker)
50g salted peanuts (9.8g per 100g of peanuts)
Options Hot Chocolate drink (5.4g of carbs per sachet)
In the morning I would weigh 30g of All Bran and 40g of semi-skimmed milk (17g carbs), I had a small ham salad sandwich for lunch (40g carbs) and then a small meal at night which had to be less than 70g of carbohydrates but ideally much less (c30g).
Towards the end of my time as "Type 2" I was eating less than 1,000 calories per day and less than 100g of carbohydrates, but I was getting lots of praise for how much weight I had lost.
At the end of March 2012 I knew something was very wrong but I didn't know what. I felt a complete and utter failure. My medication was being increased, my carbohydrate intake was being reduced and yet I still couldn't control my blood glucose levels.
The most disturbing thing was that I was started to feel tired and not wanting to do things - exactly the same feelings I had before being hospitalised in 2011, but this time I knew why I felt this way and that scared me. It felt like I was on a path back to hospital and no matter how many constraints I placed around my food, no matter how much exercise I did, diabetes was going to win.
I started to do my own research, to try and understand what was happening to me. I made slow progress because I didn't have the energy to do much after work.
Carb free eating in Iceland
Can you tell what it is?
Before going on holiday to Iceland I rang Helen (the nurse at the GP practice) to talk about my numbers going adrift and what I should do given I was out of the country for the next couple of weeks. I told her I thought the gliclazide wasn't providing any benefit and asked if should stop taking it, but it was suggested that maybe I was coming down with a cold or something and I should leave it a bit longer. If my numbers continued to drift up I should increase my gliclazide up to the maximum allowed, 160g in the morning and 160g at night. Unhappy at this prospect I went on holiday.
Needless to say, despite the increased physical activity, the walking in the mountains, the hiking up volcanic craters etc my numbers did continue to rise and so did my tablet taking.
On my return from Iceland the research continued and I read something that made me sit up.
I immediately went and dug out my discharge letter and read it again - there it was "urine +ve for ketones/glucose" - was I type one and presented in DKA back in 2011? I recalled the initial assessment of Type 1 on arrival at the hospital. I continued to read and came to the conclusion I needed to ask for a GAD and c-peptide test in order to settle it.
I went in to see Helen and she agreed to the GAD test but said they didn't do c-peptide tests. It was a start and might be enough. Easter was coming and I was warned it could take a bit of time for the results to come back. A HbA1c test was done at the same time and obviously that result came back much quicker. My HbA1c results since hospital were as follows:
HbA1c in 2011: March(diagnosed) 11.8%, June 6.4%, September 5.7%
HbA1c in 2012: January 5.8%, April 7.8%
About three weeks on and I still hadn't heard anything about the GAD results. I was told I should find out on the Monday 23rd...
Needless to say the 23rd came and went with no information.
One benefit of losing so much weight was that I believed my sleep apnoea was no longer a problem. I asked for an overnight test to be performed. On the 27th April I picked up a pulse oximeter machine and over the weekend stopped using the CPAP machine and instead recorded my oxygen and pulse levels with this...
A Pulse Oximeter unit for overnight tests
The blue thing in the bottom left of the picture goes on your finger and sends light through your fingernail to measure oxygen levels and sends the information to the machine in the top right of the picture which you wear on your wrist.
The waiting continued...
Waiting for the GAD result...
Waiting for the Pulse Oximeter result....
Whilst I waited, the blood glucose control got harder and harder as did the food control.
On May 7th I shared this post online:
Apologies for the length of this post. Not sure really why I'm posting, I
know I just have to wait and see what happens and deal with whatever
the result is. I guess I just need somewhere to vent a little and
waiting isn't something I'm good at! lol.
Since diagnosis last year I thought I had this diabetes under control, but clearly not!
I have changed my diet and reduced my weight from 122.6Kg to 85Kg (6 stone) and still reducing.
My HbA1c results had been good, at just under 6% for the last few tests.
Until recently I was on just 80mg of Gliclazide and having regular lows
at around 5pm, so I was about to discuss a reduction in medication, but
then overnight something happened.
No longer were my results under control, despite no changes to my diet, drugs or exercise programme.
I waited a week to see if this was just a blip before ringing up to
discuss. I was told to wait a little longer in case I was coming down
with a cold or something, but that wasn't the case.
It was agreed to up my Gliclazide from 80mg in the evening to include a further 40g in the morning.
I tried that for about 10 days and then it was upped to 80g in the morning.
There was no positive impact on my numbers, in fact it was continuing to
creep up, so it was upped to 240g of Gliclazide a day. Still no impact,
so finally it was upped to the full 320g, 160g in the morning and 160g
in the evening.
So my numbers now fluctuate between 14 and 18mmol/L each day and are
pretty much stuck there. Whether I have 100g of carbs a day or 200g of
carbs, my numbers just won't get any lower. I've had a couple of days of
feeling really rough but my body seems more accepting now of running
with high blood sugars... although I know I'm still not doing as much as
I would normally, I have that "can't be bothered" feeling in me.
So the current thought is that I was mis-diagnosed and that maybe I am
Type 1 after all. When I was first admitted to hospital they thought I
was type 1, I had ketones in my urine and the sudden nature of it all
pointed in this direction, but by the time I left they had settled on
type 2 - no doubt due to my age and weight. So I went in for a HbA1c and
a GAD antibody test.
The results of the HbA1c came back at 7.8% (no surprise given that my
own readings each day had shown I was outside of the 4-7 mmol/L range)
and I am still awaiting the result of a GAD antibody test -
unfortunately it seems that for this test it takes several weeks for a
result to come through.
It seems odd to be hoping for a positive result but I'm starting to worry about it coming back negative.
I (kind of) understand what will happen if it comes back positive and I can deal with that... at least I think I can
If it comes back negative though, I'm not really sure. They could try
adding more drugs into my regime - although they haven't told me what
other drug options are available or give up on oral drugs and switch
over to insulin.
These options just seems shocking to me, one year into a T2 diagnosis
having lost (and continuing) to lose weight, to be in a situation where I
can't control it with diet and oral alone... that doesn't seem to bode
well for the future.
I can see myself getting close to coming of the rails completely,
thoughts like "have a biscuit, you're numbers are out of control anyway"
are starting to creep in to my head and (I think as a result of the
increased dose of Gliclazide) I'm feeling a lot more hungry between
meals than before. So far (in the main) I have resisted, but there have
been a couple of occasions already when I have given in and more
worryingly although I might have had a short term spike with these
"indulgences" they haven't really made much difference - by the time I
get to my pre-meal reading there is no indication of a slip up - making
it harder to stick to the regime.
I'm sure other people have been in this situation and I'm just looking
for a little bit of advice on how others coped with being in this
situation.
Many thanks (and sorry for the moan),
David
I rang up the following day to see if the results had come in, they hadn't but I was told to come in the following day and it would be sorted.
Waiting for the results...
That night I came home from work, shattered and hungry. I tested my bg level and saw it was in the 20s. I just sat in the kitchen staring at the meter reading until the screen switched off.
Do I eat now and possibly end up in hospital?
Do I not eat and go to bed hungry?
What if tomorrow they tell me I'm not type 1 and I really am type 2, because I can't live like this?
After sitting for what seemed like an eternity, on the verge of tears, I ate a piece of cheese and went to bed.
The following day I went to the surgery and, when I saw Helen, she told me that the results still hadn't arrived. She rang the lab whilst I was sat there. The GAD result was positive, I was type 1 after all!
finally!
I thought I was prepared for the news. It's was (bizarely) what I wanted to hear and yet it was still a shock to actually hear it.
Helen spent time teaching me how to inject, how I should tweak my background insulin doses, gave good advice on colour coding my pens, made sure I had a backup pen etc and that day, in the consulting room, I did my first background insulin injection in my leg.
I was so tired that I knew if I didn't write down some of these things I'd been told I would easily forget, so I recorded this:
A happy ending?
Well at this point things were looking up. I finally had a correct diagnosis. It meant new challenges ahead, but it also meant I could eat properly. With the weight loss it was confirmed that I no longer needed a CPAP machine for my sleep apnoea...
...the first set of tablets were removed...
...and I started to get better at injecting myself...
On the 14th I was introduced to one of the DSNs who could start me on my fast acting insulin (Apidra). The meeting didn't start well.... "Hi David, so you're type 2..." "Er, no!", but at least I had a full toolkit for living and things seemed to be going ok.
It was amazing how quickly my numbers came back into range.
My bg values before and after type one diagnosis
The relief was huge, but it wasn't quite a happy ending. To get the happy ending I was going to discharge myself from my consultants care - a story for another blog post!
Maybe this isn't the end of the story, maybe this is just the beginning!
