Where there's one, many follow?

For those of you who follow me on Twitter, you may have seen a number of tweets around my recent visit to Northern General Hospital recently. The visit wasn't to see my usual diabetes team, but to see a new consultant at the metabolic bone centre.

When I last saw my diabetes consultant we had a conversation about a variety of issues I was facing and it was decided that an Antinuclear Antibody (or ANA test) would be appropriate. The test came back positive and, in light of this, I was to referred to rheumatology. I had to wait for the referral request to go via my GP, because my diabetes consultant wasn't allowed to refer me directly.

Without discussion, my GP set up three choices on the NHS Choose and Book system, all of them where located in the Rutland area. Since my diabetes care is handled in Sheffield, I wanted my rheumatology care to be provided there too. I rang the GP surgery asking for a referral option to Sheffield, only to be told the system wouldn't allow it. After further pushing by me, they said they would try a paper referral, but they didn't believe it would be successful.

It was successful and on Tuesday I had my first consultation. I was asked to bring a list of my current medication and a urine sample. As usual my urine sample wasn't required - sometimes I wonder why I bother and why they always ask for it in the letters they send... my theory is that they just like to take the ....!

Welcome to the Metabolic Bone Centre!

Anyway, on arrival I checked in at reception and it was a short wait before the consultant came into the reception area and called me to his consulting room.

We had a good chat, not just about the symptoms experienced but about other things too. I like it when that happens because I feel I am being treated as a person and not a set of conditions that need to be resolved - it's these small things that make a huge difference because, if being truthful, these times are stressful experiences.

After lots of questions, discussion and examining my fingernails (amongst other things), a diagnosis of Raynauds was made. Since before Christmas I've suspected this diagnosis would be made and today was the day my suspicions were confirmed.

My consultant took time to explain the condition, how it manifests itself, talked about coping strategies and informed me that he'd write to my GP to recommend drug therapy to minimise the impact. He also talked about the different types of drugs available, both short and fast acting versions and what his recommendation was.

Bloods Request

As part of that conversation he asked me a really interesting question: "Why do we clean our teeth in cold water?". I promise there was a reason (related to my newly diagnosed condition) behind the question, but I'll leave you to ponder the question for yourself - after all every other washing activity makes use of warm water.

I'd already done a bit of research around the condition, but I hadn't realised I'd require an x-ray to be taken to determine if an extra rib (or to be more precise a cervical rib) was the cause. A number of blood tests (ANF or AntiNuclear Factor which I believe is another way of asking for an ANA test, ENA, C3 C4 and dsDNA) were also requested to provide further analysis and to check I don't have a more serious condition.

After a number of failed attempts to get blood I was sent to the x-ray department (following the blue line on the floor!). I (foolishly?) suggested I'd come back once the x-ray was complete, fully hydrated for another attempt or two - I expected to be in the x-ray department for some time!

X-Ray request

Surprisingly the wait was fairly short. I was taken into an x-ray room, asked to leave my belongings on the bed (including my glasses), stand in front of the x-ray machine, shirt collar up and head back whilst the x-ray was taken. Within seconds the procedure was done and I was free to go back for another attempt at bloods.

Blood taking was a disaster, after five attempts between three different members of staff it was decided it would be better if I came back the following day for further attempts. Thankfully the following morning blood samples were obtain at the first attempt!

Interestingly over the two days I saw three receptionists, four people for bloods, one for x-ray and one consultant. Only one person told me their name - the consultant.

So now I wait and wonder what the results will show, do my usual digging around journals and websites to understand the detail of possibilities and (of course) decide whether to accept the drugs offered or to try and manage the condition without their assistance.

I'm not sure what my decision will be about the drugs (maybe I'm in denial that I need them), but I do know that now I have more than one condition, more than one consultant and a lot more visits to hospital on the cards!

How many more will I manage to collect on this journey?

We shouldn't be ashamed - now we aren't!

In my previous blog post I expressed disappointment at the advice given by Boots around dealing with diabetes in a workplace environment.

It got a surprisingly large number of you talking about it (particularily on Twitter) and a number of you felt compelled to post your disappointment directly on the Boots facebook page.

Example comment left on the Boots UK Facebook page

Example comment left on the Boots UK Facebook page

It wasn't long before Boots responded saying the team responsible for content would look at it that Monday.

I will confess, I thought this response was just a standard tactic to disfuse a situation and nothing much would actually come of it. However, I am happy to admit that the cynic within me was completely and utterly wrong!

Boots and WebMD deserve a lot of credit for acknowledging and acting upon the feedback provided. They have responded - not by making token changes, but by completely re-writing the article and I for one am extremely pleased with the wording now being used.

No longer does it suggest going to the toilet to test, it says:

"Because all workplaces are different, there's no set advice given on where to do tests and jabs. Diabetes UK says it should be done where the person feels most comfortable, and the toilet is less than ideal for hygiene reasons. Some people who work in offices may do it at their desk, others may prefer the canteen, or some may prefer a private area."

Instead of suggesting that you might want to leave a meeting to treat a hypo (due to embarrassment), it now reads:

"Do not be embarrassed if you need to eat something at a meeting, just do it."

...and no longer does it suggest keeping your diabetes a secret when birthday cake is offered:

"If there are cakes at an office birthday party, you can participate like everyone else. Don’t be afraid to tell people that diabetes doesn’t mean you have to have a special diet, you can eat just the same healthy diet as everyone else."

I am immensely proud of the #ourD community, not just for challenging Boots on their advice but for having the courtesy to thank them once they took onboard the criticism and rewrote the article. The Boots/WebMD team have excelled themselves in the rapid turn around on the feedback provided and I believe as a community we have made a real difference.

Example of appreciation posted on the Boots UK Facebook page

You can read the new article from the Boots/WebMD team here: Tips to help manage diabetes at work.

Thank you to everyone that got involved and made something good happen!

Maybe the next challenge is to get Boots to rename their "Diabetic" range of food a low-sugar range? ...just a thought :)

We shouldn't be ashamed

Ahead of the Diabetes and the workplace #ourD tweetchat on Tuesday, I was researching appropriate links to share with people in the pre-read section.

One link that didn't make the cut was from Boots.

I will state now that I am not a fan of Boots and their stance on selling so called "Diabetic" chocolate and sweets (something I'm sure will feature in a future blog entry), but when I read their article on dealing with diabetes in the workplace I was absolutely stunned and angry - it has reinforced my dislike of a so called health company.

You can read the article here: http://www.webmd.boots.com/diabetes/guide/diabetes-at-work

Most of the article annoyed me, but here's a selection of quotes:

"Sometimes it’s impossible to get a minute of privacy at your desk to take your test. Keeping all your supplies in a small bag makes it easier to make a quick trip to the toilet."

"If you are too embarrassed to pull out a snack at a meeting, simply excuse yourself and go to the toilet. You can then start eating the minute you leave the room."

"If there are cakes at an office birthday party, you can almost always participate by taking a small piece of cake. If no one knows you have diabetes, you can still keep your secret."

I feel Boots is suggesting that going to the toilet to do blood tests, insulin injections and treating hypos (as well as keeping diabetes a secret) is a good way of dealing with these issues in a workplace environment - something I would strongly challenge.

There is nothing to be ashamed of or embarrassed about doing a blood test, eating some quick acting carbohydrates during a meeting or injecting insulin in a workplace environment.

Do you agree?

The impact of nursing and being truthful

I’ve never shared my diagnosis story. It is something I’ve wanted to do for a long time and eventually it is something I will do. This blog post has come about because I was working on some text for an up-and-coming #ourD tweetchat with the #wenurses community. This post touches on my diagnosis story but only because I want to share a few things about the positive impact nurses have had on my life since dx; how they have contributed hugely to how I manage my diabetes and to whom I could never thank enough for their patience, compassion, kindness and care.

The beginning…

Discharge letter

When I left hospital with a diagnosis of type 2 diabetes, I was handed a clutch of drugs (Metformin and Gliclazide) and a discharge letter. Just before leaving I asked one of the nurses on the diabetes ward “What should I do?” and the answer came back “Eat healthy and you’ll be fine”.

It was dinnertime when I left the ward. I went, with my wife, down to the hospital canteen and looked at the food on offer – I nearly cried.

Before hospitalisation I had been eating a healthy diet, so what did healthy mean? I looked at everything on offer and I didn’t know what healthy meant anymore. I felt that a wrong decision now could mean I'd be going straight back on to the ward before I'd even left the hospital grounds.

After a long time of indecision I chose a lasagne with salad and then tentatively started to eat. It was the hardest meal I’d ever eaten, not because it was horrible – far from it – it was much better than the food I had on the ward! It was the hardest meal to eat because I was eating it in fear.

I left most of it on the plate claiming I was full. I didn’t want my wife to know the real reason… I was scared.

When we eventually got home I immediately went for a shower. After a week of washing myself in the hospital bed, this was freedom! I was so tired, I went to bed and was asleep before my head hit the pillow!

The following day, still tired and trying to come to terms with a diagnosis I didn’t understand, I rang my local GP surgery and asked if it was possible to see somebody. They must have heard something in my voice: desperation? fear? or maybe I was just lucky? Somehow they sorted me out with an appointment that afternoon with the practice diabetes nurse, Helen.

I turned up and explained my situation. Helen already knew I’d been in hospital; she’d been trying to contact me about my test results (which showed I had diabetes) at the very time I was being admitted to the critical care unit at Doncaster Royal Infirmary. Shocked at the lack of information I’d been given, she spent over an hour explaining everything to me; sorting out my prescriptions; providing me with the tools to manage my condition and setting up my follow up meetings including my quarterly Hba1c checks. In that time Helen managed to turn me from someone who was ignorant about my condition and frightened about the future into someone that knew what they had, understood what they needed to do and (most importantly) knew they could handle it. I might have been given a life changing diagnosis, but Helen had given me a life changing outlook. She will never know how much the time she spent with me that day impacted my life for the better and I will be forever grateful.

The truth…

 

I wonder when insulin treatment started?

It turned out that my diagnosis was incorrect. I actually had Type 1 diabetes. I had managed to last over a year with an incorrect diagnosis. As my blood glucose levels increased, so did the Gliclazide and Metformin doses. Eventually I was on the maximum dose possible with my blood glucose levels continuing to rise. Unlike my initial diagnosis, this time I knew what was happening to me. I knew what the tiredness meant, the thirst, the constant visits to the toilet. I knew from the numbers coming up on my bg meter that if they weren’t resolved soon I would end up back where I started – the hospital.

It was at that point a GAD test was ordered and over a month later the result came back – it confirmed I actually had Type 1 diabetes.

I'm sure I could have obtained a correct diagnosis earlier if I’d been honest about my diabetes management, but I didn’t share everything with my practice nurse. As far as she was aware I was continuing to eat a normal healthy diet – I wasn’t.

I knew carbohydrates increased my blood glucose level.
I knew the Metformin reduced my blood glucoses levels by about 1mmol/L (probably).
I knew the Gliclazide would stimulate my pancreas to produce more insulin.
I knew if I went out exercising I could reduce my blood sugar levels.
I knew... I understood my diabetes!

When I saw the drugs weren’t working, I looked to the other side of the equation and started to remove carbohydrates from my diet. By the time I had a correct diagnosis I was approaching a carb free diet and at times eating under 1200 calories a day. I was a “motivated patient” who wasn’t going to let diabetes beat them, the Hba1c test would show I was in control.

If I had been honest with my healthcare team and told them exactly how I was managing my condition, that GAD test might have been ordered a lot sooner and that would definitely have removed a lot of the pain and anguish suffered leading up to the correct diagnosis.

Why didn’t I share this important fact?

I didn’t think it was important. My main motivation was to have the “perfect” Hba1c, as near to a non-diabetic value as I possibly could. If I achieved that, I would have done everything in my power to minimise any future complications, my healthcare team would be happy, QOF payments would be made and my biggest motivator might occur… I might be able to come off the pills - a win-win situation was on the cards. I was so focused on achieving those results that I failed to appreciate the true impact it was having on my life.

The night before…

I was sat in the room when the practice nurse rang through to the lab to ask if my GAD result was available. It may seem odd, but I had been wishing for a type 1 diagnosis the previous evening, I couldn’t cope with the prospect that I was type 2 and couldn’t do anything more to control it. I knew I couldn’t sustain the lifestyle I was living and I was frightened that if I was type 2 I would fail.

I’d come home from work that night, shattered and hungry. I tested my blood glucose level and found it was over 20mmol/L. I sat in the kitchen wondering what to do knowing that I was close to how I felt when I was admitted to the critical care unit. On the verge of tears I ate a piece of cheese believing if I ate any more carbohydrates there was a good chance I'd be going to hospital. I went to bed hungry and upset.

The news I was type one was a huge relief, yet a daunting one at the same time.

The Gliclazade was stopped immediately and I was introduced to insulin.

Once again Helen spent time to talk about the different types of insulin, the different types of pen delivery and asked me what insulin and delivery method I wanted to use. She taught me everything I needed to know to inject and how (and when) to change the dosage. It wasn’t until I’d injected my first basal insulin and I was comfortable with what I was doing that I was allowed to leave.

All change

Alas I moved out of the area and needed to find a new GP and therefore a new practice nurse. It was a sad day for me. I knew Helen was applying for a role working with Diabetes UK and I kept an eye out to see if she was successful. I was very pleased to see that she was. Alas my new practice nurse isn't a patch on Helen. Yes, she does all the tests etc but there is a fundamental difference. Helen dealt with me as a person, not my condition.

I'm pleased to say that my Diabetes Specialst Nurse team at the hospital in Sheffield also deal with me as a person.

In my first visit we talked about chinese takeaways, the second fish and chips from the chip shop and the third our favourite Ben and Jerrys icecream flavour! What has all that got to do with having "good numbers"? Everything! Feeling normal, feeling I have a friend I can turn too, feeling I can talk about my successes AND my challenges is important. So I'm learning to be more honest, when I'm asked "How are you doing?" I don't have to say what I always say ("I'm ok thanks"), I can open up and talk about what matters to me. It means I have the right motivation and get the right support. I no longer go to these meetings wanting to "pass the test". I go to these meetings to see how together we can improve my quality of life. If that means the numbers get better too... well we have a win-win on our hands :)

So my new years resolution? It's to make those few hours a year count by being honest, that way we can work together as a true team.

It's all in my mind - a change in perspective

The past few days I've been trying to bury some feelings, to ignore them, but I suspect the best way to really deal with them is to acknowledge them and face them head on.

This is my attempt at doing just that.

So what are the thoughts that keep asserting themselves in my mind? The thoughts I've been trying to ignore? It's something very simple...

It's the feeling of loss

You see I'm recently diagnosed (by most people's standards). I managed to evade my type 1 diagnosis until I was in my 40s. I consider myself to be very lucky in this regard - don't get me wrong, adjusting to diagnosis later in life has its difficulties, but I'm well aware I've missed out on a lot of struggles others have had to deal with.

I've gone through life not having to think about food.

If I wanted to eat something, I just ate it.

If I walked past a Mr Whippy ice-cream van, I could decide to purchase a ice-cream without a second thought. Single cone? Double cone? Flake? Extras? It didn't matter.

If I changed my mind and decided not to eat it, so what? It was a waste, but that's all it was.

If I was at a buffet, I could have a second helping (or more!) and all I'd need to worry about is an ever expanding waistline.

What I'm trying to show is that I could be spontaneous with food - no thinking required.

Monkey see, monkey eat!

Now things are different.

Carbs are king!

King of my thoughts

Before every meal (and sometimes even when I want a drink) it requires a series of mathematical calculations to be executed.

An estimation of carbohydrates, consideration of the time of day to determine what ratio to apply, a bg test to see if any correction dose needs to be included.

I also need to log everything in my diary, do an insulin injection and then, finally, do the one thing I wanted to do in the first place - eat or drink.

Hardly spontaneous!

...and if I wanted that extra sandwich from the buffet, well that would require some more maths, some more logging and another injection...

...and if I've injected insulin for food or drink and then decide I don't want it - tough! Once that injection goes in, I'm committed - it doesn't matter if I'm feeling full or sick, the need to eat is set in motion.

So at the moment I'm grieving.

Grieving for the loss of spontaneity around food.

Eating and Drinking Out - Who helps you carb count?

Today I noticed a few people on Twitter discussing coffee shops that offer nutritional information about their offerings. Eating out can always be difficult so having the carbohydrate content provided by the retailer makes things so much easier. Over the past few months I've been collecting links to various companies nutritional information, so I thought I'd take the time to share them here in the hope others find it useful.

Please let me know if anything is missing or if any links are broken (companies are notorious for changing their websites!) and I'll continue to update it.

I hope you find it useful.

*Links last updated 18th November 2016.
Coffee shops/snack foods, fast food and pizza sections updated 14th July 2017

Coffee Shops/Snack foods

Company	Nutritional Information
BBs Coffee and Muffins	http://bbscoffeeandmuffins.com/ http://bbscoffeeandmuffins.com/Nutritional_Booklet.pdf (pdf download) Update: 17th November 2016 BBs no longer provide nutritional information on their website
Caffe Nero	https://caffenero.com/uk/en/menu/food/panini-sandwiches/ Updated: 14th July 2017
Costa	http://www.costa.co.uk/nutrition/ http://www.costa.co.uk/nutrition/Costa-ANI-data-July-2017.pdf (pdf download) Updated: 14 July 2017
Dunkin' Donuts	http://nutrition.dunkindonuts.co.uk/ Full product list No longer providing nutritional information. only allergens Added: 13/09/2015 Updated: 14th July 2017
Krispy Kreme	http://www.krispykreme.co.uk/mediadownload/media/nutritionals.pdf (pdf download) Added: 13/09/2015 Updated: 14th July 2017
M&S Cafe	http://health.marksandspencer.com/our-health-ranges/nutrition-information Cafe: https://health.marksandspencer.com/uploads/pdfs/MS-Cafe-Nutrition-Information.pdf (pdf download) Instore bakery: https://health.marksandspencer.com/uploads/pdfs/ISB%20Nutrition%20Information.pdf (pdf download) Deli bar and counter: https://health.marksandspencer.com/uploads/pdfs/Deli-Bar-and-Counter.pdf (pdf download) Updated: 14th July 2017 to add deli bar information
Millies Cookies	No carb information provided. Allergen information available: https://www.milliescookies.com/wp-content/uploads/Millies-Cookies-Allergen-information.pdf (pdf download) Updated: 17/11/2016
Patisserie Valerie	No carb information provided. http://www.patisserie-valerie.co.uk/faqs.aspx
Starbucks	https://www.starbucks.co.uk/menu Information on drinks (pdf download) Information on food (pdf download) Updated: 17/11/2016 Updated: 14th July 2017

Fast Food

Company	Nutritional Information
Burger King	http://www.burgerking.co.uk/menu http://bk-uk-prod-2.s3.amazonaws.com/sites/burgerking.co.uk/files/documents/Nutrition_Feb.pdf (pdf download) Full product pdf no longer available Allergen information (pdf download) Updated: 14th July 2017
EAT	http://www.eat.co.uk/food Updated: 17/11/2016
Greggs	https://www.greggs.co.uk/nutrition https://admin.greggs.co.uk/assets/Uploads/Nutritional-leaflet.pdf (pdf download) Regional nutritional information Updated: 14th July 2017
KFC	https://www.kfc.co.uk/nutrition https://www.kfc.co.uk/nutrition.pdf (pdf download) Updated: 14th July 2017
Little Chef	No carb information provided. Nutritional/Allergy information. http://www.littlechef.co.uk/menu Updated: 13/09/2015
Mcdonalds	http://www.mcdonalds.co.uk/content/ukhome/meal_builder.html Also note that nutritional information is provided on the reverse of the tray sheet.
Pret A Manger	http://www.pret.com/menu/ Allergen guide Updated: 14th July 2017
Subway	http://www.subway.com/en-gb/menunutrition/menu http://www.subway.com/~/media/united_kingdom/nutritionals/nutritional-table-dec-2016-master.pdf (pdf download) Allergen guide Updated: 14th July 2017
Upper Crust	No carb information provided http://www.uppercrust-baguettes.com/menu/ Updated: 13/09/2015
West Cornwall Pasty Company	No carb information provided http://westcornwallpasty.co.uk/our-menu
Wimpy	https://www.wimpy.uk.com/images/downloads/Menu/2017/NutritionalBooklet.pdf (pdf download) Updated: 14th July 2017
Yo! Sushi	Only provides sugar content, not carb information http://yosushi.mysaffronportal.com/Menus Updated: 13/09/2015

Pizza Outlets

Company	Nutritional Information
Ask	https://www.askitalian.co.uk/media/2148/170612-nutritionalmenu.pdf (pdf download) https://www.askitalian.co.uk/menu/ Updated: 14th July 2017
Bella Italia	No carb information provided. Allergen information provided. http://www.bellaitalia.co.uk/menu/main-menu/ Updated: 14th July 2017
Dominos	http://corporate.dominos.co.uk/nutritional-information Information only available in pdf format. Allergen information available. Pizzas: http://corporate.dominos.co.uk/Media/Default/CSR/Food/UKNutritionalsRegularMozzarella.pdf  (pdf download) Sides and desserts: http://corporate.dominos.co.uk/Media/Default/CSR/Food/SidesDessertsNutritionals.pdf (pdf download) Updated: 14th July 2017
Pizza Express	http://www.pizzaexpress.com/our-food/our-restaurant-menu/ Carb information only available as a pdf download. https://www.pizzaexpress.com/~/media/files/pdfs/nutritionals/pex_our-food-calories-and-nutritions.ashx (pdf download) Allergen information available for food dishes Allergen information available for drinks Pizza Express have not provided the carbohydrate information of their winter specials online, however you can find them on my website here: Nutritional info for winter specials (pdf) Updated: 14th July 2017
Pizza Hut	https://www.pizzahut.co.uk/nutrition Allergen information available. Updated: 14th July 2017
Zizzi	http://www.zizzi.co.uk/food Carb information only available in pdf format. Allergen information available. https://www.zizzi.co.uk/data/menus/static_menus/6/pdf/Spring17NutritionalMenu.pdf (pdf download) Updated: 14th July 2017

Pub/Diner Food

Company	Nutritional Information
Beafeater	http://www.beefeater.co.uk/steak-restaurant-menu Allergen and carbohydrate information (pdf download) Updated: 14th July 2017
Brewers Fayre	http://www.brewersfayre.co.uk/pub-restaurant-menus Allergen and carbohydrate information available (pdf download) Updated: 14th July 2017
Ed's Easy Diner	http://www.edseasydiner.com/nutritional-values/ Allergen information available. Carbohydrate information IS NO LONGER available. Main Menu (pdf) Breakfast Menu (pdf) Drinks & Desserts (pdf) Juniors Menu (pdf) Updated: 14th July 2017
Fayre and Square	http://www.fayre-square.com/ Allergen information available. Currently the website doesn't have nutritional information but an old version can be found here: https://www.fayre-square.com/Media/Documents/allergen-nutritional/fs-core-menu-nutritional-info.pdf (pdf download) Updated: 14th July 2017
Flaming Grill	http://www.flaminggrillpubs.com/nutrition-allergen-information/ Allergen information available. Carbohydrate information in pdf format only: http://www.flaminggrillpubs.com/Media/pdf/SS17-flaming-grill-nutritional-information.pdf (pdf download) Updated: 14th July 2017
Harvester	http://www.harvester.co.uk/ourmenus/ Allergen information available. Nutritional information (pdf download) Updated: 14th July 2017
Hungry Horse	http://www.hungryhorse.co.uk/food-menu Allergen information available. Nutritional information for the breakfast menu (pdf download) Nutritional information for English restaurants (pdf download) Nutritional information for the golden years menu (pdf download) Nutritional information for Scottish restaurants (pdf download) http://www.hungryhorse.co.uk/sites/default/files/hh-aw15-main_menu_allergen_sheet.pdf (pdf download) Added: 18/11/2016
JD Wetherspoon	https://www.jdwetherspoon.com/food Allergen information is available. Nutritional information for UK outlets (pdf download) Nutritional information for ROI outlets (pdf download) Updated: 18/11/2016
Slug and Lettuce	http://www.slugandlettuce.co.uk/food/ Allergen and nutritional information available, click on the apple symbol to the right of a dish to see the carbohydrate value. Updated: 18/11/2016
Table Table	http://www.tabletable.co.uk/pub-restaurant-menus Nutritional and allergen information (including carbohydrates) (pdf download) Updated: 18/11/2016
Toby Carvery	http://www.tobycarvery.co.uk/nutrition/ Allergen information available (pdf download) Nutritional information available (pdf download) Updated: 18/11/2016

Restaurants

Company	Nutritional Information
Aagrah	No carb information provided. Gluten/Nut information provided on menus. http://www.aagrah.com/the-menu/
Cafe Rouge	No carb information provided. Allergen information provided on menus. http://www.caferouge.co.uk/faqs
Carluccios	No carb information provided, just sugar for certain items sold in the shop. Allergen information provided. http://carluccios.mysaffronportal.com/Search?terms=&trigger=searchbutton http://www.carluccios.com/getattachment/Menus/Menu-Partial/Allergen/Allergen_and_Nutritional_Info_8_4_15.pdf.aspx?ext=.pdf (pdf download)
Chiquito	http://www.chiquito.co.uk/menus No carb information provided. Allergen information provided.
Coal Bar and Grill	http://www.coalgrillandbar.co.uk/eat No carb or allergen information provided online.
Frankie and Bennys	http://www.frankieandbennys.com/menu/breakfast No carb information provided. Allergen information provided.
Giraffe	http://www.giraffe.net/menus/main-menu No carb information provided. Allergen information provided. Updated: 18/11/2016
Handmade Burger Company	http://handmadeburger.co.uk/get-in-touch/faq/ No carb information provided. Allergen information provided (pdf download).
Jamie's Italian	Click on each dish to see carbs and allergen information listed in pop up. http://www.jamieoliver.com/italian/menu Updated: 15 March 2015
La Tasca	No carb information provided. Allergy information provided (Excel spreadsheet). Updated: 18/11/2016
Nandos	https://www.nandos.co.uk/eat/menu Click on the "i" for carb and allergen information Updated: 18/11/2016
Prezzo	http://www.prezzorestaurants.co.uk/menu/ No carb information provided. Allergen information provided.
Restaurant Bar and Grill	http://www.individualrestaurants.com No carb or allergen information provided.
Wagamama	http://www.wagamama.com/our-menu Select dish and click on nutrition + allergy dropdown

London Chains

Company	Nutritional Information
Itsu	http://www.itsu.com/nutrition/calorie_counter_and_allergens.htm Allergen information provided. (pdf download) Nutritional information provided. (pdf download) Updated: 18/11/2016
Ping Pong	http://www.pingpongdimsum.com/menu Click on nutrition fact for carbohydrate information.

Schools

Company	Nutritional Information
Gwent School Meals	Gwent Children's Diabetes - School Menus
Pasta King	Nutritional (and allergen) information Primary: http://pastaking.co.uk/wp-content/uploads/2015/07/Primary-Meals-Range-Meal-Nutritionals-New-Range-2015.pdf (pdf download) Secondary: http://pastaking.co.uk/wp-content/uploads/2015/07/S4-Pasta-King-Core-Range-Meal-Nutritionals-2015.pdf (pdf download) Updated: 13/09/2015

Cinemas and other venues

Company	Nutritional Information
Alton Towers	No carb information provided by any of the food outlets in the theme park. Allergen information provided on site not online. http://www.altontowers.com/info-help/places-to-eat/theme-park#restaurants
Cineworld	https://www.cineworld.co.uk/xmedia-cw/repo/nutritionalinformation_june2015_3.pdf (pdf) Added: 17/11/2016
Odeon	http://www.odeon.co.uk/food-concessions/nutritional-info/ http://m2.odeon.co.uk/_uploads/cached/sites/odeon_co_uk/uploads/documents/nutritional_info/Complete_Version_-_2016_Coke_Nutritional_Info_PDF_version_UK_V.2.pdf (pdf) Added: 17/11/2016
Vue Cinema	https://www.myvue.com/legal/nutritional-information Food (pdf) Drinks (pdf) Sweets (pdf) Icecream (pdf) Added: 17/11/2016

Hotels

Company	Nutritional Information
Premier Inn	http://www.premierinn.com/gb/en/why/food.html Allergen and carbohydrate information provided.

Change Log

1st July 2014: Flaming Grill Pub and Eds Easy Diner added.
1st October 2014: Full refresh of all links.
12th October 2014: Added Schools section.
13th September 2015: Dunkin' Donuts and Krispy Kreme added. Links to allergen information added.
22nd September 2015: Millies Cookies added.
13th December 2015: Added Hungry Horse. Updated Ask with older menu that includes carb info. Added new category of hotels.
3rd February 2016: Added Pizza Express winter specials
17th February 2016: Added ASK carb values
17th November 2016: Added Cinemas to venue section

An open letter to #gbdoc

Introduction

The gbdoc was setup and founded by a PWD. A patient powered community. Or so I thought. When I started digging, it turned out that wasn't quite the case.

The idea of this blog entry is to explain my concerns and suggest a possible way forward. If you don't think my concerns are valid, that's ok, if you do, that's ok too. This isn't a blog entry to force an opinion, just an explanation around my reasons for no longer contributing to the #gbdoc community.

Many will already have seen me tweet about some of these things and be wondering why I need to put it in a blog. Well, not everyone saw those tweets and unfortunately @theGBDOC hasn't responded to a single question I have raised. Rather he has chosen to ignore what I consider to be valid questions and has now blocked me on twitter. That's hardly the response I would expect from a patient powered community founder, so I have emailed him a link to this blog entry. Hopefully this blog post will mean he responds to at least some of the questions and then I can decide if I want to contribute again under the #gbdoc hashtag. For now I will continue to tweet about diabetes using the #doc, #diabetes and #dailyDtalk hashtags. I'd also like to hear your thoughts too, what do you want out of the community?

Before I begin...

Before I start explaining my thoughts and concerns, I want to make a couple of things clear first:

1. The PWD community (#doc if you like) are amazingly supportive of each other - I want this to flourish and continue.
   
2. What @theGBDOC has been doing so far in bringing PWDs together is a good and valid thing to do. Something I'd want to promote. Previously the community was spread across many hashtags, having one has it's advantages and a regular tweetchat can draw people in to a community. It takes a lot of work to run a tweetchat properly, so I don't underestimate the work required.
3. Where my concern lies is around where the @theGBDOC is going? What are the checks and balances? What ensures that the initial objective of a patient powered community, remains a patient powered community and that it isn't comprised by outside influences?

So this discussion is purely about governance, openness and transparency. I want the people taking part in #gbdoc tweetchats to be sure that their interactions with @theGBDOC aren't being used for purposes that they might have issue with.

This isn't saying that the things I worry about are taking place, or that they would happen, or indeed that they should or shouldn't happen. This is about how the community ensures that they know if they do happen and therefore are participating effectively with "informed consent".

So what is @theGBDOC?

The person who has setup the website and runs the tweetchats on a Wednesday night is a PWD, but he is doing this under a limited company structure. Given this structure is in place, it has made me very nervous. So much so that I feel I can no longer contribute to the initiative. Why? Because it changes the nature of the enterprise. I no longer feel this is a patient powered community, it's a company powered community. It just so happens that the person running the company is a PWD, but a company powered community puts a completely different spin on things - for me at least.

Why do I say it's a company powered community?

Well I looked at the owner of the www.gbdoc.co.uk website. You can too by looking at the whois information provided by Nominet: http://www.nominet.org.uk/whois/lookup?query=gbdoc.co.uk

http://www.nominet.org.uk/whois/lookup?query=gbdoc.co.uk

It told me that IPS Ltd is the owner of the site, not an individual, a not-for-profit organisation or some other similar structure, but a limited company.

Looking at other (well run in my opinion) patient powered communities such as the DSMA their websites are registered to the individuals (For example DSMA is registered to the founder PWD http://whois.domaintools.com/diabetessocmed.com). I'll come back to DSMA later as I believe some of the governance of that community could be used here too.

Why does it matter? I've not been sold anything!

It's not just about selling product. The sad fact of the matter is that companies will be interested in harnessing a community like our for alsorts of purposes... to engage in market research, to promote product to us - we are valuable commodities. Sometimes we might want to engage in some of this, sometimes not. Because of the company structure, regardless of what is going on, these are some of the thoughts that go through my head...

Some hypotheticals

 

Hypothetical 1: How do I know if a question in tweetchat is market research or not?

 

Hypothetical 2: If a campaign was started "pumps for all", would the reason for starting that campaign be clear? Company driven? Individual driven? Community driven?

 

Relationships with other organisations

 

On the 6th November this tweet was made by @theGBDOC:

https://twitter.com/theGBDOC/status/265937129748717568

I haven't seen anything happen in this regard, perhaps it's too early? But I have no idea what this campaign is about, is anyone driving this other than @theGBDOC? Has this campaign been started because of requests from the #gbdoc? I don't know.

What I do know is this company is mentioned a lot by @theGBDOC. Since the 10th September they have been mentioned over 29 times, that is significantly more mentions than any other company! In fact very few other companies are mentioned by @theGBDOC. Why is that? Is @theGBDOC endorsing this company? have a relationship with them? Or is it just that @theGBDOC likes them so much that they are naturally mentioned a lot?

Other companies are mentioned/advertised/endorsed (take your pick) by @theGBDOC, for example the prizes for #bgbingo come from companies but the question I'm posing here is what relationships are acceptable to people?

There is an interesting line in the following article: http://gbdoc.co.uk/gbdoc/News/Entries/2012/12/13_coming_to_a_country_near_you!.html

The IDF is working with #gbdoc to enhance and further extend the #doc and help achieve the ambition of creating a free to use, non-profit, community led resource available to any person with diabetes, friend , family, employer or carer  - anywhere and in any language.

When I asked what the nature of the relationship was between @theGBDOC and IDF I was confronted by silence, was unfollowed and blocked. Why? Is there something to hide? I think it is a fairly reasonable question to ask. Please tell me more about this work!

Notice I asked what the relationship was with @theGBDOC and not #gbdoc, as no relationship is in place with #gbdoc. @theGBDOC uses these two interchangeably as it suits. They are NOT the same thing! All I am asking for is some transparency. If I engage with @theGBDOC who am I dealing with? A company? An individual? A community?

If theGBDoc represents you, are you happy about this?

 

Is @theGBDoc a personal account or a community account? Where is the line drawn?
The person running @theGBDOC clearly has strong (negative) opinions of both the NHS and Diabetes UK (and maybe other organisations helping people with diabetes) which I have seen expressed via the @theGBDOC account. An example can be seen here:

Are people comfortable with this? Does this represent the community opinion of these organisations? Has @theGBDOC ever asked you if this is your opinion? It is this kind of comment that makes me think of @theGBDOC as a personal mouthpiece using the community engagement around #gbdoc as an endorsement that many involved might not agree with. Yes @theGBDOC needs a "personality" but for me these types of comments go past that and are comments I cannot endorse or agree with.

What if the GBDoc starts lobbying? Who decides the objectives?

 

I've already shared the CGM tweet above. What about going to parliament?

https://twitter.com/davidcragg/status/265952364320669697

This was apparently going in a personal capacity and I'm not sure it was about defending the right to test strips/CGM but rather an All Party Parliamentary Group for Diabetes meeting about access to test strips - what can be done to ensure people have access, not about taking access away. I wasn't there, so maybe my understanding on this matter is wrong. Oh and look - using #gbdoc and @theGBDOC interchangeably again!

Is @theGBDOC going to turn into a political/marketing tool? I hope not!

What if the GBDoc "earns" money from this? Does it matter to you?

 

Another hypothetical. What if @theGBDOC went out to other organisations asking for money to support initatives? If they went out and asked for £50k of seed capital to "get things started", would that be a game changer?

 

Possible Futures?

1. Stay the same
   
   Others don't care about the issues and concerns I have raised and are happy for things to carry on as they are. That's fine, plenty of companies out there are providing a good service, such as diabetes.co.uk - it's a trade off you are willing to accept.


2. Look to DSMA - take the good bits?
   
   Well @theGBDOC took the tagline, why not go further?
   
   DSMA is run by PWDs. They have a foundation the Diabetes Community Advocacy Foundation, Inc. (http://diabetescaf.org/?page_id=13 again this website is owned by the founder http://whois.domaintools.com/diabetescaf.org) with a board of directors (http://diabetescaf.org/?page_id=9) and an advisory team (http://diabetessocmed.com/about/advisory-board/). Community members are encouraged to contact them to shape future events. The DSMA website shows information on what has happened in the past and shares information on future events, allowing people to think about the subject areas before they take place.


3. Something else
   
   Maybe there are other options that you think would be better? Why not share them?

What I'd like to see

 

If it really is a patient powered community @theGBDOC will be up to having an open and honest tweetchat on the future direction of the community.

Clear differentiation between #gbdoc (the hashtag the community users) and @theGBDOC (the founder of the community), they shouldn't be used interchangeably.

Personally I don't want the @theGBDOC claiming to represent me in the wider world, others maybe happy with him doing so. I feel that if the @theGBDOC is going to represent the community there should be a way to ensure it is representative. It should not be assumed that we agree by default.

Some answers to the questions I've posed rather than silence. All I am asking for is clarification, is that so wrong?

Ideally I'd also like tweetchats to be an opportunity to direct people to good quality information. For example with the recent tweet chat on Christmas it would have been nice to direct people to things like the Diabetes UK Christmas guide: Enjoying yourself at Christmas and when statements are made such as "@theGBDOC DSN told me that shivering can cause increased uptake of glucose from blood #gbdoc" it would be nice to see reputable research backing it up. People look to the @theGBDOC for advice, it needs to be good advice.

Thank you for taking the time to read and I hope you will add to the discussion in the comments below or via twitter.

Further reading (if you aren't bored already!)

Social Media Help Diabetes Patients (And Drugmakers) Connect