Friday, 28 February 2014

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?

Wednesday, 19 February 2014

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 :)

Saturday, 15 February 2014

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:

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?