‘You don’t know what you’ve got till it’s gone’


Dr R waves a filament triumphantly at me; ‘Ah, he says, we are normal’!

My feetBut I know the truth, I may have passed the filament test and in Dr R’s eyes be ‘low risk’ but my feet are far from normal, in fact they feel odd. I just know there has been a change and it’s not a good feeling. They use a filament, a small, thin, soft piece of plastic, to test sensation on the feet of people who have diabetes. ‘Can you feel that?’ is their phrase. Over the last 5 years or so I have noticed a real difference in my feet. I can’t always feel sensations like I once could and they get sore and give me a terrible burning sensation if I walk a few miles – I suspect its neuropathic pain. It’s not so bad that I need to do anything in particular but I know it’s not as it was – I think I have early sensory neuropathy.

I’ve had type 1 diabetes for more than 30 years, to be precise 34 years and 9 months. I’m well and although not as fit as I would like to be I’m active and doing OK. The trouble is I also know it’s a bit like walking a tightrope; diabetes can just nudge you off balance at any time for no seemingly rational reason.

My feet 2012 in Italy

My feet 2012 in Italy

Feet are funny but massively important parts of you. I seem to have hypersensitive feet; it’s always been a thing that irritates me that I can’t wear the beautiful toe post sandals. I just can’t tolerate the bit between my toes. On the plus side I am not, and have never been, a smoker and I do look after my feet, they are treated to lovely foot cream at bedtime almost every day and I am very careful these days about being barefoot (although I still do it, I mean, after all you need to feel the sand between your toes).

A diabetic foot is what it’s called – not the toe post sandals part, that’s just me – but the risk that people with diabetes have, the risk of complications of ulcers that don’t heal and amputations. You are warned about the risks; your feet are precious and the risks are related to good control. However, beyond 50 years of having diabetes of the so called ‘medallists’ only 39% of people are free of problems with their feet – yep that’s right: 6 in 10 people had some symptoms of neuropathy according to the study by Sun et al (2011). (Great study by the way – if you are interested in what happens to people with diabetes over time but not for the faint hearted with diabetes). I think that’s a lot. At clinic they risk assess you against criteria a little bit like this.

But that’s all well and good.

I am 51 and not 101.

I want to wear fashionable and sexy shoes – that usually means heels.

There is not a healthcare professional in the land who thinks that is OK; I have been advised to wear ‘sensible’ shoes. I rebel and I refuse. My wardrobe is full of suitably unsuitable shoes……

flat pumpsBut this summer has proved different. It is with sadness that I report that I feel myself slipping into the comfortable shoes abyss – I even bought some wide shoes this week; it makes me sad.  Here they are my little (wide) black walking pumps.

I know that many people have issues with their feet and for many different reasons and I empathise. My compromise solution is to wear comfort for walking and heels for all else. So if you see me slipping on a pair of wide pumps you know why – I’m walking somewhere and trying to keep my fitbit steps up! The truth is I’m a middle aged woman with diabetes who is watching out for her feet. And for all doctors, podiatrists and nurses; please remember we are people who want to express ourselves through our footwear like many other people, give us a break for as long as we can hobble in the shoes!

I will be wearing suitably unsuitable sexy heels for as long as I can 🙂

My favourite suitably unsuitable shoes :)

My favourite suitably unsuitable shoes 🙂

The other thing is, numbers are about other people aren’t they? But the uncomfortable truth is that they are about you and me too.

Footnote: I wrote a blog for the lovely @whoseshoes about my mother in law and her shoes and you can read it here

The title of the blog is from the wonderful song by Joni Mitchell – thank you to Pete, @swelldiabetes for reminding me!

 

 

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Exploring New Territories


It was a usual morning with an early start at 6 o’clock to get the train from Wakefield to London. It was all pretty much typical, Costa coffee in hand and sat waiting patiently, shivering, on the station platform, as I always arrive early. As is also usual, I’m filling in those pockets of time with my Twitter feed on my beloved iPhone and I notice that the HSJ were announcing their first ’Social Pioneers’. As I do, I flick it open and the first thing I notice is a lovely picture of the lovely Teresa Chinn. Then as I scrolled down, there I was: gobsmacked – me a ‘Social Pioneer’?

I am passionate about how information empowers. Information can bring independence and create changes and shift in social order. So bringing information to nurses can enable them to improve their practice, see things in new ways, revolutionise and encourage improvement as well as spotlighting where things might not be right. For citizens, information can drive real change, be disruptive in creating new paradigms of systems and behaviours; I think that ‘Patients Like Me’ is one of the best examples I can think of that shows this; have a look at this story to see what I mean:

Frustrated ALS Patients Concoct Their Own Drug’ The Wall Street Journal, April 15th 2012

This powerful very short TedTalk from Stanley McChystal is about how having the confidence to open up information can make significant differences to what happens and illustrates my point too.

 

‘Information is only of value if you give it to the people who can do something with it’ Stanley McChrystal 2014

‘Sharing is power’ Stanley McChystal 2014

So what has this got to do with me being a ‘Social Pioneer’?

In around 2010 I discovered social media. I’m naturally curious and experimental so, curiosity prompted, I wander into social media. Wandering is a good description – I had little knowledge beyond being a Facebook user, no skills and little insight = scary!

What I discovered was a space that I think has huge potential for nurses but also those people who have health needs – it has the power to transform some aspects of how we use information.

What I also discovered amongst the nursing community was a reticence, anxiety and resistance and sometimes all of these things are still present. It frustrates me sometimes that I sense a lack of professional confidence about using social media and experimenting with its potential amongst many nurses. I also discovered people who I now realise are social pioneers, people with long term conditions and experiences of the health system that I started to follow and watch – I was amazed.

I saw the huge untapped potential that I believe social media offers us. Yes, it breaks down boundaries and flattens hierarchies, but it also has the real potential to change the very nature of the power based relationship between systems and people. I also believe it still has untapped public health potential but it has to move beyond broadcasting to achieve the possible.

So in 2010 I decided that one of the things that was needed were some role models in nursing that showed what could be achieved and as no one else (other than a few notable exceptions like Teresa @agencynurse and a few other pioneers) were taking that on, I decided that I would. If I was to show the power of social media I needed to ‘show’ it, not just point at it; doing presentations about social media is one thing but living it is another. So my ambition was to be a good role model for nurses in social media. That’s when the real pioneer journey began. My delight on being identified as a social pioneer was partly to do with feeling that it was evidence that I had, at least partly, achieved some of what I had set out to do.

In my journey I also discovered a very eclectic diabetes community and I am proud to say that I have also been part of that, making I hope, a contribution based largely on my 35 years of living with type 1 diabetes but of course combined with my other skills and knowledge. I have written with another social pioneer – @parthakar (whom I have never met in real life but know that I will 🙂  )  about the use of social media in the professional interface between professionals and patients – this would never have happened without Twitter. Here it is:

‘A New Dawn: the Role of Social media in Diabetes Education’

pionee signpost

Famous signpost with directions to world landmarks in Pioneer Courthouse Square, Portland, Oregon

That’s why the word ‘pioneer’ was the part that gave me the most satisfaction when I read the piece in the Nursing Times and Health Service Journal supplement. I was also cited alongside many people I greatly admire – each has made a unique and significant contribution. I was delighted that the write up picked up some of the very things I was trying so hard to do, rather than just my level of frenetic activity! That’s exactly what I set out to do, to start to chart the new territory of social media for patients and nurses and other people who are part of the big NHS and social care extended family and I hope I am a little part of an enduring story.

FlorenceI also came to realise that being called a ‘pioneer’ gave me great satisfaction for other reasons; I have always taken on roles in leading (and sometime ‘bleeding’) edge environments; complaints management in 1990 (listening to complaints then was not what it is now), NHS Direct, the National Programme for IT and informatics is still, in its own way, pioneering. There is also the point that nursing has a strong history of pioneers like Mary Seacole and Florence Nightingale – fantastic role models.

So on Wednesday I celebrated with a very large piece of cake!

Anne Cooper – ‘Social Pioneer’ – who would have thought it! Now where is the next territory to explore?

So that’s enough about me (a very self-indulgent blog this week AnnieCoops!): A very big thank you to everyone who was kind enough to nominate me (you know who you are), the Nursing Times and Health Service Journal and the lovely judges: Jenni, Andrew, Shaun and Emma. But also I couldn’t be social without conversations and it is those people who increasingly have the confidence to share, debate, support and push conversations in social media that I need to thank. Your conversations, blogs, video blogs inspire me, help me to grow and learn, support me and enable me to see new futures – thank you.

Cake

 

 

The rules of a food diary


Ever tried recording a detailed food diary?

The 10 Rules

  1. You must record everything that you eat that contains carbohydrate and preferable fat content too
  2. You should record an accurate time
  3. All drinks that are not low calorie to be included (no cheating)
  4. Everything that you eat (no exclusions)
  5. Even when you clean out the cake making bowl you have to count that too!
  6. If you are not sure how much carbohydrate you need to weigh your food – be precise – no guessing
  7. Eating out is a nightmare – how do you ask your friend/restaurant ‘How much does that weigh?’ or ‘Did you make that sauce with oil?’ but you need to record! No exclusions
  8. Check every bottle and every label – that’s right read the pack!
  9. Write it all down or record it accurately somewhere – most Apps not useful
  10. A gentle reminder – don’t forget to live at the same time 🙂

Oh and I nearly forgot – keep testing your Blood Glucose if you have Diabetes too…..

Food

I recommend all HCPs try it for a week 🙂

 

The highs and lows of being a patient


roller coasterI’ve had a very mixed day today, you know, one of those ones where it’s a bit like a roller coaster, up and down and all around – I’ve been to clinic and it wasn’t all good news. To make it worse the good news came first and then the pricking of the bubble 😦 but I guess on balance it was OK in the end.

For those of you who know little about Diabetes I had a clinic appointment and was waiting for a test result called HbA1c. It’s a test that helps you to understand how well you have managed your diabetes over the previous 2-3 months (you can read more about it here). As I had been trying very hard to improve my diabetes management I was looking forward to seeing how well I had achieved this aim. But it wasn’t good news 😦Diabetes

My result was actually higher than I have ever had before and I just don’t understand why. I also have slightly raised blood pressure which has persisted for a year or so. Regarding my BP my lovely consultant, Dr R, wants me to take more tablets but I want to try losing some weight first but we agreed a middle way; a 24 hour BP recording to see what is really going on.

I was despondent. I need to lose weight – for the BP (and also for me) – but that complicates my overall management and I honestly don’t understand why my HbA1c is so high.

This is where the experience turned around – Dr R, is simply a star. Now you need to understand that I suspect I’m not an easy patient, particularly for the nurses, but probably also for the docs. I try so hard to be a ‘good’ patient but I also know that I’m a Yorkshire lass who has a reputation for calling a spade a shovel at times of pressure and clinic = pressure. I also, of course, can smell patronising behaviour from a long distance and my response isn’t always as gracious as it should be, despite my efforts.superstar

I am pleased to report that Dr R handled me and my need for help with skill and aplomb. We have a plan and, more, we are going to manage it using email and technology. It seems that he has heard my pleas for less ‘clinic’ and more remote help and responded with a positive optimistic and helpful outlook. I certainly didn’t feel patronised or told off, he just made to feel like they were going to help me to get to the bottom of my issue. I feel sure with a bit more effort on my part and with his insight and skill we can sort this out. It was the first time I have ever really come away feeling like I had a clear ‘plan’.

But the other thing that happened also made me very happy indeed. Sometimes, as a patient, when you give feedback it’s really hard to see whether anyone is taking you seriously. The place where I receive my care is a struggling Trust. On the recent staff survey only just over half of the staff said they would recommend it as a place for their friends and family to be cared for and they were in the worst 20% scores for all trusts for some of the measures. The diabetes centre is fairly new, build from charitable monies but when I got there today the reception area was closed, shuttered and unmanned for the second time – I suspect a sign of the underlying cracks in the system.Pressure

I also know they have a problem with workload and they need to think about how they can do things differently but I think they feel like they under siege; torn and burdened.

But I discovered that they do listen; Dr R is a gem. I spoke to him last time in clinic about how difficult it is to get an appointment and how I didn’t think I need to physically be with him in the same room and surely we could use different ways to communicate? I also subsequently pointed him at my blog about a ‘Year of Care’ – see here.

Well, well, well; he was bursting to tell me his news as soon as I walked into the room and he brought a massive smile to my face – they are going to start a service improvement initiative to do exactly what I suggested, finding 20 patients from each of the 3 hospitals who would like to try to work with the team in new ways, using email and technology, to see if it works! I couldn’t have been prouder. I just hope of course that it is better for everyone and that includes saving some money but they are going to do this properly, with proper measures to assess the impact – my little heart swelled with pride.Computer stethescope

I also persuaded him (I hope 🙂 to look at how these patients could connect with each other using social media; I offered to run some sessions for those patients who were interested – you never know it might help them to be better connected as it has done for many of the people with diabetes that I chat to on Twitter, using #DOC and #ourD. It seems I have volunteered myself to help and am delighted to do so.

So, today was a day of highs, too high a HbA1c and a great one of feeling good that I might be helping to support making things better even if it’s in a very small way. Dr R promises me that they will write this all up when they are done and I can’t wait to see the outcome.

Are you a patient who has a good idea? Why don’t you try offering it up to see what people make of it? You never know you might have one of the solutions everyone is looking for!idea