There's something deeply personal about my numbers

Have you ever been testing your bgs and someone has asked "What's your number?", maybe they have even tried to peer over and look at the meter reading to see the number for themselves?
I know they are asking for all the right reasons - they care about my health and well being.
They've taken an interest in my condition and want to be supportive ...yet, it can sometimes feel deeply intrusive.

I go to cover up the meter with my hand so I can see the number first. I want to be the one that knows (and be comfortable in sharing) that number with someone else. After I've seen the number I might reply with the exact number; I might even show the number displayed on my meter (if it's really good); give an "about" number if it's kind of "ok"; or declare "it's rubbish" if, well, it's rubbish - that usually garners a response to tease the exact number out of me - making me feel more uncomfortable in the process.

You can tell me there is no such thing as a good or bad number (and that's true!) but, the reality of the situation is, I can't help judging my performance on every bg reading.

Maybe it's me? Maybe I'm too self-critical? Maybe it's because I feel others will judge me on my numbers? It's a complex feeling, but mostly I think it's about being in control. My numbers, my responsibility, my business.

When I go to clinic they download the readings from my meter and the consultant looks over them with me. I can find it to be the most stressful part of the consultation. They focus on all the high and low readings, trying to find out what's going on as I frantically flick through my notebook to provide excuses, justifications... explanations. They rarely acknowledge my "in target" readings and why would they? They don't need to focus on those number, they're ok.

They ask about the highs and lows because that's where they can add most value. They're looking to help improve my self-management and give me the tools and knowledge I need to do that. Yet (as you can see from my language) it can sometimes feel like an assessment I'm failing in, with little recognition given for the hard work I put in day and night to get and maintain control. Most people don't go to work to do a bad job and so it is with diabetes management, yet sometimes it would be nice to be have a little bit recognition for the good work done - it would be a powerful motivator.

A page from my notebook

My notebooks record everything I've eaten each day since receiving my type 1 diagnosis, every blood test, every meal and carbohydrate count, every insulin dose, everything unusual I did on a particular day that could justify an unusual reading, every thought process. It is deeply personal to me. I have even created my own shorthand, my own code, to explain certain actions and activities I do. It is my most personal of diaries and yet those around me can thoughtlessly treat it like an open book:

"Let's see what your numbers have been like today" as they reach out to take the latest notebook from the "bag of life" I carry around with me.

Don't get me wrong, I can and do share this information at times - but I'm the one in control of sharing that data. People get to see it when I'm comfortable with sharing it.

People are usually surprised when they see I record all my data in paper format. They are confused about why I don't use a mobile phone application to store all the information, after all I'm a technology geek and the apps are "free". I usually joke that pen and paper doesn't require a battery to operate, but the real reason is much deeper than that. Let me explain...

At diagnosis I immediately looked for diabetes applications for my mobile. I found a huge collection of diabetes apps: most of them were absolute rubbish (either making it difficult and time consuming to enter data or impossible to extract or edit the data once entered, some clearly had absolutely no input from people with diabetes and completely missed the basic requirements someone with diabetes would need); a few showed promise with interesting ways to speed up data entry and some I ended up using for quite some time. I never found an app that was perfect for me and eventually I even got involved in helping a company create a diabetes app which helped to give me insight to the development process and some of the business models used when creating applications.

Many applications now like to store your data in "the cloud" and this can bring great benefits to those using these types applications as you can enter and view your data on a number of different devices. With the data held centrally it is available anywhere and everywhere and usually means you can share your data with other people (should you wish) more easily too.
It also allows the company providing the "free" application with more ways to make money. This isn't necessarily a bad thing. The cost of developing an application, marketing it, providing servers in the cloud to store and process your data etc all adds up and they need to find ways to recoup those costs (both development and ongoing storage and processing) as well as a profit. Until recently most applications relied on either in-application advertising; asking you to sign up with an email address to gain access to further features; or getting you to pay for additional features. In all these scenarios the amount of personal information given in exchange for using the application was minimal and there was a choice of what information you provided, but times change and now things are different.

Many of these "free" applications hold a lot more information about you, they know your name, your email address, your age, weight, what insulins you use, your account may even be linked to a facebook or twitter account profile providing even more demographic profiling and with every entry you make they build up a profile:

What are you eating/drinking? How many carbs? How much insulin did you take? What was your bg reading? What was your location? (Yes many apps now use the GPS information from your phone to locate where the entry is made), some even ask you to take photographs of the food you are eating etc.

This is all valuable information and can be sold on to other companies with an interest in it.
They can gain commission by identifying appropriate people to sign up to clinical studies & trials, create more targeted advertising etc. From the GPS information they know where you live, where you work, what restaurants you prefer. From the images supplied they know what food you like, what your favourite food brands are - a marketers dream!

Apple aren't getting into the health market just because it is a good thing to do for people, they are doing it because the market is worth millions. When they recently announced their intention to move into the health tracking market one of the example applications shown was a blood glucose monitoring app. Embarrassingly for them they got the unit of measurement wrong (which is an issue I might come back to in another blog).

Google also sees the value of being a player in this market and have partnered up with a pharmaceutical firm to create the Google contact lens that monitors bgs and well as providing a platform for health apps similar to Apple. Google is in the business of advertising, the health market is just another opportunity for them to sell health data and market health products.

So our data is valuable.

When you start looking deeper into companies polices you start to see that many seem to make great efforts to hide the fact that they are planning to use and sell your data and I wonder why. After all Google makes no secret of the fact they use programs to read your emails to create more targeted advertisements - you have a choice: use the "free" Gmail service and accept this advertising process or use another mail service. The key here is that Google tells you explicitly what you are signing up for. It's the same with Facebook (although they have and continue to have "run ins" with privacy rights groups) options are provided to allow you to opt out of certain advertising and data selling processes.

I've talked about care.data in the past - I'm not a fan of it in it's current form and have opt-ed out until I see sensible safeguards in place. It got in to a lot of problems because of a lack of clarity on how data would be used and who could see it. Ben Goldacre has written many articles on this issue. Checks and balances need to be in place to protect peoples privacy and rights. Sensibly the care.data programme has been delayed to try and fix some of these fundamental issues. If the resulting changes are acceptable to me I will opt back in.

So why do diabetes applications (and other mobile health apps for that matter) make it difficult to know how, why and what your personal data is going to be used for? Are they worried we might not use their applications if we knew how widely they want to trade our data?

Let's take a look at some examples: Dario and DiabetesPA. I could have picked any diabetes mobile app company, they are in no way special when it comes to how they treat your data other than they do provide some form of privacy statement - many don't!

Dario

Dario (or LabStyle Innovations Corp.) is a company traded on the OTC QBunderstock exchange (OTCQ:BDRIO) with a market capitalisation of around $4.4million. On their investor website they have an investors presentation which on page 20 or 26 explains how they plan to monetise their offering.

Dario sees several potential revenue streams

The third being data monetisation through clinical studies, trial recruitment and partnerships.

Now, pop over to the Dario website (and/or download the application to your phone) and try and find out, as a user of the application, what you are signing up to.

Not so easy? Well their privacy policy can be found here (right at the bottom of the web page) and section 5 covers the main point "We may disclose your Personal Information..." and section 2.3 of the terms of use (within the app) states: "You understand and agree that the personal data you enter into your account may be used by us or by any third party for research, development, commercialization and/or academic purposes..."

Interestingly you can email Dario to opt-out of emails being sent to you, but there is no option to opt out of your data being used for commercialisation.

Obviously everyone reads the privacy policies and terms of use in great detail before signing up to use an app, right?

What's "great" about these privacy policies is that they can change them whenever they want, to suit their purposes, without the need to tell you... Section 9:

"This Privacy Policy is subject to revisions from time to time, upon our sole discretion and without prior notice. [...] All such changes will apply to previously collected information. Therefore, please make sure you read this Privacy Policy regularly."

How many people using the application will repeatedly go back and check if any policy changes have been implemented?

DiabetesPA

DiabetesPA is a mobile phone application created by Diabetes Digital Media Limited, the people behind the website diabetes.co.uk. Initially the website didn't provide any privacy statement (the link went nowhere). After pointing this out they fixed the link and after reading it I tweeted them some questions. They got in touch with me by email to ask for more details about my questions and I responded to their email on the 29th June 2014 with the following text:

Thank you for the email.

My main concerns are around the terms used in the privacy statement. They seem to be very loose and open to interpretation which I feel at times seem contradictory.

For example, Section 5 makes it very clear that information captured via the app will only be viewed by your "medical team" and not passed on to anyone else except for complying with the law/regulators and when people choose to take part in a clinical trial:

You should be aware that information captured via our App may be viewed by our medical team. None of this information will be passed to any other person except for:

   + disclosure for the prevention of crime;
   + in accordance with the law;
   + compliance with the direction of any regulatory or governing bodies;
   + for the purposes of preventing injury or harm to you as the data subject; or
   + when registering to take part in clinical trials, to the responsible clinical research organisation(s).

However, Section 6.2, 7.1 and 7.2 suggest otherwise:

In 6.2 it is not clear what data will be used, but clearly in the case of your company it would be more than the medical team using it. If third parties are using the data is that not against section 5?

6.2. We may also use your data, or permit selected third parties to use your data, to provide you with information about goods and services which may be of interest to you and we or they may contact you about these by post, email or telephone. If you are an existing customer, we will contact you by post or email with information about goods and services which may be of interest to you. If you are a new customer, and where we permit selected third parties to use your data, we (or they) will contact you by post or email, only if you have consented to this.

Again there is no clarity in section 7.1 as to what information is being disclosed, but the entities listed are not the your companies medical team.

7.1. We may disclose your information to:

   + advertisers and advertising networks that require the data to select and serve relevant adverts to you and others;
   + analytics and search engine providers that assist us in the improvement and optimisation of our Website;
   + pharmaceutical research organisations.
   + Please note, we do not disclose information about identifiable individuals to such third parties, but we may provide them with aggregate information about our users.

...and in section 7.2 (and I appreciate this is a boiler plate statement) it does suggest that information could be shared with others outside of the medical team.

7.2. We may disclose your personal information to third parties:

   + in the event that we sell or buy any business or assets, in which case we may disclose your personal data to the prospective seller or buyer of such business or assets;

There is also no clarity as to the reasons the medical team may be required to look at data.

I appreciate that the data input via the app has value and I don't have a problem with you mining this information and even selling the information on to third parties such as pharma companies BUT I want to understand what I am agreeing to in order to use a "free" app.

I also have some concerns over the possibility of data being taken outside of the EEA, something your ICO registrations says isn't the case.

4.1.    The data that we collect from you may be transferred to, and stored at, a destination outside the European Economic Area ("EEA"). It may also be processed by staff operating outside the EEA who work for us or for one of our suppliers. By submitting your personal data, you agree to this transfer, storing or processing. We will take all steps reasonably necessary to ensure that your data is treated securely and in accordance with this Privacy Policy.

ICO registration:

Transfers

It may sometimes be necessary to transfer personal information overseas. When this is needed information is only shared within the European Economic Area (EEA). Any transfers made will be in full compliance with all aspects of the data protection act.

Again I suspect this is a boilerplate statement yet on Twitter the suggestion was that taking the data outside of the EEA was a theoretical possibility and it would be easier to change the ICO entry than the privacy statement - something I find very hard to believe given you can change the privacy statement without going to a 3rd party.

I hope that gives an idea of the concerns I have.

After several chasers I finally received a response on the 12th August saying they would upload changes to their policy that very day. They said they'd make some amendments to the privacy statement and in particular add some additional words to section 5 (changes shown in bold here):

You should be aware that medical information captured via our App may be viewed by our medical team in order to provide you with the MyLifeStyle services. None of this information will be passed to any other person except for:

• disclosure for the prevention of crime;
• in accordance with the law;
• compliance with the direction of any regulatory or governing bodies;
• for the purposes of preventing injury or harm to you as the data subject; or
• when registering to take part in clinical trials, to the responsible clinical research organisation(s). ; or
• otherwise in accordance with this Privacy Policy.

As of today (18th August 2014) those changes haven't been implemented.

You can read the full privacy statement on their website: DiabetesPA (Diabetes Digital Media Limited / www.diabetespa.com) privacy statement

The change would (if added) at least make it more explicit as to what happens to your data but ideally I would like to see more. I shared my thoughts with the DiabetesPA team specifically explaining how I'd like references to data use to be split into three different categories:

I guess for me data broadly falls into three categories:

1. Usage data - IP, browser, URLs etc (data described in Section 2 of your privacy policy)
2. Personal data - name, address, email, facebook, twitter, phone etc
3. Sensitive data - bg results, insulin requirements, mood etc

I believe a gold standard policy would identify which type of data is being disclosed to whom.

ie. In Section 7.1 I suspect the first two bullet points relate to "Usage data" in the definition above, but the third one relating to Phara companies would be "Sensitive data" that has been anonymised and aggregated for reporting purposes.

Although they agreed that people would start to think about their data more and more they clearly aren't going to implement a clear and transparent policy unless users stop using the app and make them aware that reason is due to a lack of clarity on their data usage.

In Summary

So, if I'm not happy with the people around me (that have a true interest in my health and well being) riffling through my notebooks, why would I not only let a company do this for themselves but also allow them sell all my notebook entries to others?

...and now you know the real reason why I use pen and paper to record information and not a mobile phone application. Until companies have true transparency around how they use my data and provide opt-outs (or ideally opt-ins) to it's use I'm going to keep my diary under my control.

It all comes down to who really owns the data. My advice is if the application is "free" you shouldn't assume the data you input is yours until you have proof otherwise. If it is a paid-for application, sadly it seems (in the vast majority of case) the same is true!

If you aren't sure what a particular company policy is, ask them. If it's not clear, ask them to clarify (in writing) and, if you don't like the responses you get use a different application with an acceptable policy or like me, use pen & paper to control how and when the data is used for yourself.

Additional Reading

• Rethinking Personal Data: A New Lens for Strengthening Trust
• Health Apps can sell your data to insurance companies, and there’s nothing you can do about it
• Ben Goldacre: Care.data is in chaos. It breaks my heart

• Apple WWDC announcement entering the health market
• NY Times: Novartis Joins With Google to Develop Contact Lens That Monitors Blood Sugar

• Patient.co.uk - A free clinically backed diabetes manager app

Why measure? Is it waste or non-compliance?

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.

Demons in your head?

I was in McDonalds recently.

To be honest I've been there quite a lot of late, usually around 11:00pm after completing some DIY at the house I've bought. I pass a 24hr McDonalds on my journey back to the rented accommodation I'm currently living in and just as my Levemir injection alarm goes off I'm usually tucking into a McFlurry treat!

The other night whilst eating a delightful Dairy Milk McFlurry, a song came on and I asked my phone to tell me what I was listening to... why? because I'd heard "the c word" in the lyrics.

For the avoidance of doubt, "the c word" is... carbohydrates!

...and it turned out the song was Vertigo by Rumer.



The song isn't the style of music I'd normally listen to, but ever since my diabetes diagnosis my ears have been able to tune into any conversation that mentions the c word with laser like precision. Although the song isn't about diabetes (far from it!), with a few tweaks here and there it certainly could be...
The concept of carbohydrates at 4am in the morning obviously has a slightly different meaning in my version of the song and I'll admit to playing it on repeat at the moment because (in my version) the lyrics are ALL about diabetes.

The challenge of diabetes isn't always obvious to those around us, sometimes there can be battles going on inside our heads and dealing with those "demons" can take its toll on our emotional, mental and physical well-being. Yet, bravely(?), we continue to tell those around us that we are fine. Trying to fool everyone (including ourselves) that everything is ok and that we are "managing" to deal with the condition.

Why do we do it? Are we too hung up with "not being a burden"? Do we decide help won't be available without really knowing and therefore decide not to ask? Maybe we feel ashamed of the need to ask?

There certainly isn't any shame in asking for assistance to overcome the "demons" and there should be no barriers in obtaining the help needed. So why do we lie to ourselves and others?

Imagine informing someone that they'd been signed up to a full time job which they cannot quit, that it came with no holidays for the rest of their lives, no weekends off, no opportunity to have a day off sick and indeed if they were unwell they would need to put in a double shift. It wouldn't take long before they were screaming for help. That's how cruel the employer Diabetes is - and in many ways it can be much, much worse!

So why not go into battle with the demons in your head (and help yourself and those around you) by sharing them with your HCP? After all, a problem shared might not be a problem halved... it might be a problem resolved.

Appropriate lyrics?

Pass me the bottle, pour me the wine.

I might be face down on the table, but I assure you I'm doing just fine.
Give me a cigarette, you heard what I said,
'cause I'm going into battle with the demons in my head.

'Cause I've seen trouble, I've seen more than my share.
I said I've seen trouble and I don't care any more.
No, I don't care any more.

You say I'm outspoken, that I'm loud, that I'm obtuse.

While I'm here all screwed up, baby, tell me what's your excuse?

Gimme carbohydrates, at four in the morning.

Gimme carbohydrates, 'cause I don't care any more.

No, I don't care any more.

Dear M&S...

You used to be a leader in sharing nutritional information with your customers. Back in 2005 you had a traffic light system on your food to help customers make informed choices. Tesco and Morrisons only agreed to do this at the end of 2012!

You were a leading light.

You used to provide information about the products you sold in Cafe Revive on your website enabling people, such as myself, the opportunity to plan how much insulin I would need to inject in order to eat at your establishment.

Unlike others (such as Costa, Starbucks, BB Coffee and Muffins, Caffe Nero etc), you took the retrograde step earlier this year to remove this information from your website. Eating in your cafe now has an element of risk to my (and others) health.

I don't have an explanation as to why you made this retrograde decision (even after spending 15 minutes on the phone to your customer care team). All I've been told is:

• The information is no longer provided on your website.
• You have no plans to provide this information on your website in the future.
• If I want to know the carbohydrate value of any product in your cafe I should request this information from your staff at the time of purchase.

Well last Saturday I did exactly that - in your Wellingborough store. I asked for the carbohydrate content of a piece of cake. The staff seemed quite put out with me asking and pointed to the plastic noteholder stating the product and calorie content. I was told very abruptly that everything I needed to know was there.

I pointed out this only provided me the calorie content of the cake and not the carbohydrate content. The member of staff stormed off to ask a colleague and after much discussion she came back and told me the amount of calories as though this was the carbohydrate content. If I hadn't done a mental check on this number I would have injected a dangerous amount of insulin that would have potentially ended my life.

I asked again for the carbohydrate content.

A rather large queue was starting to form and customers (quite rightly) where getting frustrated and annoyed that they weren't being served. I on the other hand felt like I was being a "problem" both for the other customers and the staff.

Eventually they found an A4 ringbinder which contained a printed sheet for each product. There didn't seem to be any logical order to how these sheets were stored and the staff flicked through each page in turn until they found the product I was interested in and provided me with the carbohydrate information. It seemed much larger than I was expecting (but nowhere near the calorie value!) but given the size of the queue that had formed I wasn't going to question it. I was embarassed enough!

I purchased my food and drink and took a seat.

At this point I did my calculations in order to determine the amount of insulin I required and then I had a panic. What if this number was wrong? It seemed too high for such a small slice of cake. Other cakes I had eaten in Costa (for example) were much smaller. Had they read the right value?

I couldn't inject without seeing this information for myself and so with a renewed resolve I went back to the counter and asked to see it. Once again I got stares from other customers as (I imagine) they were wondering "who is this person that has just jumped the queue?" and the staff didn't seem particularly happy with me interupting them again to ask the same question. Eventually they found the correct folder and flicked through each page (again) until they found the product and handed me the folder.

It turns out they had given me the correct number from the page. I thanked them and sat down. I decided I couldn't inject the amount it stated, it "seemed" wrong. I reduced the amount I injected by a couple of units on the basis it would be easier to correct with an additional shot of insulin later if the number was incorrect than to deal with a potential insulin overdose.

I don't know if the slice of cake I consumed on the day was smaller than the suggested size in the manual; or if the value on the page wasn't correct; or if diabetes just played one of those nasty tricks on me due to the stress of the situation, but I ended up hypo later that day and I had to eat some fast acting carbohydrates to get my blood glucose levels back in range. I suspect it was the stress, but with diabetes you can never be totally sure.

In the end, what should have been a nice "treat" at the weekend turned into a stressful, unhappy experience that ultimately ended up with me in a hypoglycemic state. Not an experience I wish to repeat and so until nutritional information is published on your website (like it used to be), unfortunately I will not be having a "treat" at any of your cafes again. I would much prefer to go somewhere that lets me be safe and in control of my health needs - as I have mentioned nearly all of the high street chains offer me this comfort.

Angry at what had happened, I raised this issue with you on Twitter and you told me to give you a call. I was hoping that when I rang you'd say "Sorry, we made a mistake, this information will be back on our website soon and when it is we will let you know" instead you made it very clear that there were no plans to give this information to customers on the website and despite me recounting my experience, the advice was still to ask in store - to put my life in the hands of poorly trained staff.

You said you'd contact the Wellingborough store to ensure they were aware of the issue, but you are a national chain... what if the same experience I had happens in other stores? What if your staff tells a customer the calorie content rather than the carbohydrate value and your customer accepts this without question? You are putting peoples lives at risk! If I hadn't had the sense to question the original answer I would have injected around ten times the amount of insulin required.

Given you send this nutritional information out to every store that has a Cafe Revive in it, surely it is not beyond the realms of your ability to share this information online with your customers? You used to, why did the policy change? Is this a lot to ask of a multi-national company? You already have the information so please share it for everyone's benefit.

Instead of being a laggard, I want you to become that leading light again. Show the UK how you care for your customers needs and how you understand the value customers place on nutritional information.

With a very heavy heart,
David

Help me to change the mind of M&S

If you agree with me that Marks and Spencer should start publishing on it's website (again) the nutritional information of the food it sells in Cafe Revive, please let them know.
It only takes a few minutes to make your voice heard.

You can:

• Contact them via their website
• Call their customer services line on 0333 014 8555 and select option 4
• Write to them at:
  
  Marks & Spencer
  Chester Business Park
  Wrexham Road
  Chester
  CH4 9GA
• and/or tweet them @marksandspencer (+M&S)
  

Please help Marks and Spencer become a leading light again and make it safer for customers to eat in Cafe Revive.

Thank you.

Diabetes in Parliament

How the #ParliChat tweetchat came about

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.

If you missed the debate yourself, it is possible to watch a recording of the proceedings both on the Parliament website and on YouTube. You can also read the transcript (courtesy of Hansard).

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.

Guest Blog: When Cagney met Lacey... ...aka Louise & Susan

At the start of Diabetes Week, Louise and Susan are hard at work planning something very special for November.

I do hope you can all support them in their endeavours to make a difference in diabetes care.

So please enjoy the latest guest blog from these two detectives!

A light hearted blog by @louisebrady17 & @SusanMason66 about friendships, diabetes & nursing through the eyes of two detectives....

To set the crime scene, you must have a quick listen to the theme tune!!!

We all love a good detective series.....Sometimes there are parallels between nursing and detective work....... partnership working with colleagues, carefully collecting reviewing and documenting the the ‘evidence’ to inform best practice...shadowing medics, and caring for patients who have been victims of a crime. Detectives know their territory. They can look at a person’s shoes or tire tracks on a car, and know where he/she has been. Nurse’s territory is knowing their patient well... we must find out why are they here? How can we help, what shared goals can we discuss to foster health & wellbeing?

Detectives and Nurse’s must cultivate an eye for detail... In addition, a good cop will observe the landscape closely, whilst nurse’s will refine their communication skills, because every piece of information they discover will may make a difference to that person’s care and recovery.

We know that suspects may lie to avoid incrimination, whereas some patient’s may hide the truth, out of embarrassment, a lack of understanding or cultural beliefs...

Cagney & Lacey was a bold US drama series set in the mid eighties... streets ahead of its time, and brilliantly written. The show itself, seemed to tackle some of the more complex social determinants of health, and covered topics like breast cancer, alcoholism, being a single parent, and the struggle of bringing up children against the backdrop of poverty and social exclusion.

At the centre of the drama, a beautiful friendship develops between the 2 main characters Cagney played by Sharon Gless, and Lacey played by Tyne Daly. To coin a well known phrase... just sometimes, life REALLY can imitate art.

In a similar vein to Cagney and Lacey, and from very different clinical backgrounds, Susan and I meet at the latter end of 2013.. Our assignment came from GP Lead Andy Hershon..(AKA the Diabetes lieutenant) to improve the nursing contribution to local Diabetes care.

Not any easy task, by anyone’s standards... Susan is a passionate diabetes nurse specialist. I am a practice nurse with a special interest in diabetes Care. Like our detective counterparts, the relationship got off to a rocky start... I meet with Susan and the ‘old team’. As is often the case in policing, the initial debate centred on ‘what do generalists actually do for patients with diabetes?’ versus the highly skilled nurse specialist role... Like detectives, both of us value our teams... and were particularly precious of our own ‘branch’. Do practice nurses possess the necessary credentials for the task ahead? (A very diplomatic interrogation!) Well of course we do... but we required ‘backup’ from the specialist branch! We had to focus on gathering lots of information from the chiefs (our patients). This would be the modi operandus, and therefore we deduced that there was no room for ‘rank and file’.

Following some very animated and analytical discussions, about roles, relationships and teams.. We got down to the ‘nitty gritty of police work’.

There was a killer out there (Diabetes) and it was our job to hunt it down... Pre conceptual care being offered in general practice, reaching vulnerable groups across community and hospital, mental health and Diabetes, patient partnerships and non medical prescribing were hot topics.. The pieces of the puzzle were beginning to make sense...We listened and took our ‘clues’ from each other.

Some elements of diabetes care still remained a mystery.. However we had a hunch that if we shared positive and negative experiences and exchanged ideas, we would have some chance at ‘cracking the case’. I learnt all about Susan’s role in supporting the Xpert patient programme, whilst I described the central role of the practice nurse within the diabetes journey, partnerships with patients and the wider community.

We ate..and drank lots of coffee (and tea) in a ‘dingy’ back office (#NHS). This was our de- brief (clinical supervision). We talked about ‘cold cases’ and eventually progressed to meeting in more pleasant surroundings, in the form of local cafe for coffee and cake (minus the cigarettes). There, we hit the pavement running, to hone our observational and critical thinking, gather patient histories and sort through the facts.

Time to review the evidence...

Our newly integrated diabetes team is still in its infancy, but has so far received positive ‘hits’ from colleagues and patient’s alike. There are still many bumps in the chassy.. But we are hopeful that the reports from headquarters (Tameside and Glossop CCG) will be the breakthrough required....

Does this mean that the case is now closed? Not for us.. The plot continues to take sharp twists and turns... Susan and I have fostered a friendship beyond diabetes, where we hook up to ‘chew the fat’. Family, friends, hobbies and foibles, now dominate our conversation. Both of us are mom’s bringing up young men... We both share a love for music; Susan prefers the velvet tones of Canadian crooner Michael Bubble, whilst I subscribe to the Dylan (esk) qualities of Mr Jack Savorettti. Do our inner working relations have anything to do with diabetes care? Not really.. But we do advocate good detective work, through making connections and friendships...

Diabetes continues to be the main perpetrator of many a crime; the landscape requires careful examination, and inclusion of all elements of vital evidence... with patients at the hub of the police department.

No more alibi’s or excuses.. Diabetes care cannot really be ‘policed,’ but needs highly skilled sleuths up and down the country to begin to ‘crack the case’.. As a duo, we have a thirst to continue to help others move beyond traditional ways of working, make connections, and get ‘creative in care.’

In 2014, Cagney and Lacey needed to become far more techno savvy, so we called in ‘The special’ (AKA Dr Amir Hannan) to investigate. With his intuitive powers of persuasion and his technical ability, we were able to the develop a local online forum for networking. We knew we had to examine the crime scene, ‘comb the area’ and encourage more detective work, across our locality...

This assignment is far from over, as there is still much work to do, to achieve ‘the right result’ (patient engagement.. shared learning and opportunities for interdisciplinary learning)... Susan and I started to engage on twitter...Two of the best detective agencies we found reside at @wenurses and #ourD.

Cagney and Lacey’s next assignment comes in the form of hosting a diabetes collaborative event in November, lead by patients, supported by the detectives. As sleuths, we will continue to fight the perpetrator (diabetes) and recognise this is only the beginnings of ‘cracking the case. ‘We hope to become partners with others, build relationships with the wider community, and encourage innovation and creative avenues to improve care.

Please come along to our event in November! We offer fun, friendship and detective work... Tickets and details of the event will be on sale next month... for more information you can DM Cagney or Lacey!

Guest blog: Dads, Dogs, Diabetes & Data by Louise Brady

I was delighted and touched to be contacted by Louise Brady who asked if I would host a blog post she had written. When I read it, it made me excited about the future of diabetes care and the possibilties of communties coming together and really making a difference. I'm looking forward to seeing how the journey unfolds!

If you aren't already following Louise on Twitter I recommend that you do. You can find her on Twitter here: @louisebrady17

Dads, Dogs, Diabetes & Data by Louise Brady

My mother’s beloved dog has recently been diagnosed with Cushing’s syndrome. Exasperated, she declares ‘endocrine disorders are rife in this family’... and now extends to our family pets!’

She is right of course... In my family we have a mix of diabetes, hypothyroidism, Conn’s syndrome and pernicious anaemia. My mother is English, my father Scottish and my grandfather from Irish descent. An eclectic Celtic mix of genes to say the least.. If I were a dog, I would probably describe myself as a pedigree mongrel (even though technically I was born and part raised in Scotland).

On a personal level, I have seen the challenges and opportunities faced by my family members and loved ones, when they tell me ‘what it’s really like’ to have a long term condition. My Dad lives with diabetes, and admits he finds this a real struggle at times... During a recent ‘tete- a tete’ about health and wellbeing, I asked him to tell me about his diabetes care, describing his thoughts and experiences.

‘Care should be agreed, not imposed’! Sums up his initial description... and why do they ask me the same questions all time? It’s a challenge to get an appointment as it is.. I would like to go and see my GP/nurse armed with my results and talk about what matters to me!

My Father has a reasonably good grasp of his condition, manages his insulin regime and remembers to take his medications (most of the time). As his daughter, I feel a real sense of frustration and disappointment on his behalf. As a practice nurse, and from a professional perspective, I acknowledge that we have an imperfect system, underfunded, and a general practice workforce stretched to capacity.

I work with people with diabetes everyday, who feel just like my Dad. Some come to see me for a ‘quick fix solution’, whilst others want more information, access to data, and real ‘ownership’ of their health needs. As one of my GP colleagues never ceases to remind me ‘what patients need is a good listening too’. I am now listening... intently....

I am a relative newbie to the twitter community, and was encouraged to contribute by an amazing GP colleague Dr Amir Hannan.

Dr Hannan is a trailblazer who has successfully pioneered patient record access at a nearby surgery. The patients and the team @HTMC are an inspiration, as they are pushing boundaries ( boundaries which need to be pushed in my opinion!) in order to improve health literacy, Self management and ownership of health’ @ingridbrindle is a ‘tour de force’.

In my own surgery, we are currently undertaking survey’s to poll patient opinion, to see if there is an appetite for open access to records. The provisional results look exciting, and promising for the future.....

I love my job, and it’s a privilege to help patients where I can. I am extremely lucky, as my own GP colleagues are amazing, and encourage me to develop my knowledge and skills. Dr Simon Westmerland is our resident GP, with a great passion and insight into diabetes Care.

I have also had the pleasure of working with @andyhersh and @susanmason66 who have developed and designed our local integrated diabetes service in partnership with patients. Two colleagues who I admire, and have worked tirelessly with commitment and dedication to improve local services.

As a practice nurse, I would like to see all diabetes communities think much more radically about new approaches to care, some of which might involve new partnerships.

I believe scarce resources need to move around the health economy and be more responsive to ever changing needs. We all dream of a drug or treatment that may have a ‘miracle’ effect for people with diabetes, but until that day comes we have to continue to focus on delivering the best services we can...

In my view, having access to patient records should become an integral part of a shared journey. I feel increasing the support to people with long term conditions, will enable them to understand and manage their conditions more effectively.

So Dad, what should the future look like? ‘The healthcare team needs to work with me!’ .....My sentiments exactly!

Proactive care, patients and clinicians working together, joint decisions, and training opportunities to learn and grow together are a necessity. Decisions backed by communities like #ourD and inspirational people like @davidcragg demonstrate what care could look like, without boundaries between primary and secondary care...