Friday, 30 May 2014

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...

Monday, 26 May 2014

Finding a new GP

I am GP-less!

No, I've not done anything stupid.

I'm moving home, so I need to find a new GP in the area I'm moving to. I've asked for three months of diabetes supplies to keep me going whilst I find, register and get set up with a new GP.

I'm moving within England and so I've been using the following search tool: NHS Service Search
If you are moving to/in Scotland the equivalent tool is: NHS24 Find Local
If you are moving to/in Wales you can search here: NHS Direct Wales Local Services Search
and if moving to/in Northern Ireland you can search here: Service Finder

...and there I was thinking it was a National Health Service :) I appreciate that the NHS can be fragmented because devolved powers makes health provision different in England, Wales, Scotland and Northern Ireland, but I had wrongly assumed the ability to find a GP would be available from one place.

Before I was diagnosed with type 1 diabetes every time I moved to a new area I just went to the nearest GP that was accepting patients and registered there. Now however I have very clear requirements of my GP practice and that means spending a little bit of time trying to find the best match - what I'm learning with every move is that there is always a need to compromise on my needs and there is very little choice.

What are my requirements?

  1. Online access to my medical records.
  2. Online option to order my repeat prescription and if possible book appointments.
  3. Ideally a GP with a special interest in diabetes or a diabetes practice nurse.
  4. Given I'm likely to be visiting often, it would nice to see a GP where the current patients have been giving good feedback.
I don't think these requirements are particularly onerous, but let's see how I get on!

Online access to my medical records

The first GP surgery listed as providing online access to medical records is Earls Barton Medical Centre, over 7.5 miles away. Unfortunately the catchment area for this practice only goes out as far as five miles, so isn't available to me.

The next GP surgery listed was Victoria Park Health Centre at nearly 22 miles away from my new address - needless to say this clearly puts me outside of their practice area and therefore unavailable to me!

It would seem that online access to my medical records isn't something I can look forward to anytime soon and if you think online access to medical records isn't particularly common, then it's unsurprising to find that being able to view your test results online is an even rarer beast!

Online option to order my repeat prescription and book appointments

The ability to order repeat prescriptions online is thankfully more widespread.
The nearest GP practice to my new home offers this option and it is less than five minutes walk to get there. The only issue is they aren't accepting new patients.

The next nearest is 5.5 miles away (by car) and I'm *just* outside of their practice area.

At this point I start to panic, could it be there isn't a single GP practice accepting new patients from the area I'm moving to? I ignore my wish list completely and start checking every practice available from the nearest to furthest.

Finally, at 6.5 miles away I find a GP practice accepting patients: Mawsley Surgery and then another at 7.5 miles away: Guilsborough Surgery that consider me to be within their practice area. So these are my only two options, but at least both allow you to order prescriptions online.

Mawsley Surgery website does provide a form you can fill in to request your medical records too. There is a fee (which is unspecified) but at least they acknowledge that people might want to do this, even if it is just a snapshot in time.

A GP with a special interest in diabetes or a diabetes practice nurse

Mawsley Surgery website is still telling people:
WE will reopen as follows:
Practice - Thursday 15thth (sic) May at 8:00am
but it does provide a list of who makes up the practice team. It doesn't tell you if anyone has an interest in diabetes and looking on the GMC website I can't even find one of the doctors listed!

Looking at the staff practicing at Guilsborough Surgery I come across similar problems. The website doesn't provide GMC numbers and when searching by name I can't find some of them. Nothing on the website gives an indication of any interests but under the "services we offer" section there is a nurse led chronic disease clinic - whatever that is!

Hidden within the Patient Participation Report March 2014 there was a clue:
"This year Dr Catti Moss gave talks on Skin Awareness during the summer months and then in the Autumn did some talks on Diabetes"
...and then I find out the reason I couldn't find her on the GMC website. It is because...
"Dr Catti Moss retired at the end of December"
I guess I will have to ring up and ask lots of questions instead!

Good feedback

Both have Patient Participation Groups, although Mawsley seems to focus on the immediate village going to the "Mawsley Parish Council, the Mawsley Newsletter and the Over 65’s forum to..." get feedback, despite a practice area that is much wider than this.

Mawsley is a third of the size of Guilsborough. It gets a 4.5 star rating (from 6 ratings) on the NHS choices website but only 87.2% would recommend the surgery in its patient survey.

On the other hand, Guilsborough gets a 3 star rating (from 5 ratings) and 92.2% would recommend the surgery.

The problem with these statistics is that the NHS Choices rating is based on a very low number of ratings, for some practices the ratings are based on things that happened several years ago and some people give extremely low ratings to point out an issue with one small aspect of the service provided. When you look at the patient surveys, the ratings aren't always reflective of the practice demographics either and tend to have a fairly low return rates. So you have to take them with a pinch of salt.

Do I really have a choice?

Do I really have a choice? I don't think so. It is very much a Hobson's choice and I suspect the answer will be Guilsborough. I'll ring up and ask a few questions but if I don't like the answers, where do I go?

Wednesday, 21 May 2014

A view from the other side - how one line hurt

Given I've been very vocal about my dislike of how was being implemented, you might think it odd that I'm releasing all of my medical notes about my hospital admission in 2011 on my blog today, but there is good reason:

1. I'm in control - I'm the one that has decided how and what is being shared.
2. I believe things can be learnt from what is written in these documents and I'd like to explore them further with you.

If you haven't read my diagnosis story and how I went about getting hold of my medical records you might want to take a look at those now to get some context for this blog post.

When my hospital notes came through there wasn't any real order or structure to them, so I have tried to group them together into four roughly themed areas:
You can view them all in one folder using the link here if you prefer: All my medical records

I have redacted them to ensure any names and signatures (other than my own) aren't visible and that the medical history of others in my family are blanked out - I'm sharing my history, no one else's!

The main reason for requesting my notes was to understand the reasoning behind the change in my diagnosis whilst in hospital from type 1 diabetes to type 2 diabetes. Unfortunately I don't have any insight into that, but I have gained insight into many other things about my care at the time.

Some of the most notable things (from a people/process point of view) that I've learnt are:
  1. Most of the paperwork doesn't support what HCPs want or need to record.
  2. I feel there must be a lack of education on how HCPs are expected to fill out these forms.
  3. Shorthand and legibility issues are rife within my notes!
  4. Communication was extremely poor.
  5. The healthcare system still hasn't got its head around the idea that patients might want to see their own medical records.
In later posts I will "unpack" my thoughts around those areas, but maybe, if you take a look at the records yourself you might understand what I'm getting at before I post about them :)

Instead, in this post, I want to highlight something I found in my notes that made my extremely angry and upset. As I have already stated, I purchased my medical notes to find out the reason for the change in diagnosis. The notes do not give me that reason, but that is not the reason for my anger or the reason for me being upset. It was what I found written on page 14 of the clinical notes grouping...

The comment that angered and upset me
"11th March 2011: Refer to GP on discharge as possible change to insulin if diagnosed as DT1."

That one line, buried in all my notes, hurt.

If the individual who wrote that note knew the cost of not checking my diagnosis whilst I was in hospital, I would hope they would never do it again.

If they knew how many nights I sat at home not eating...
If they knew how I became fearful of food...
If they knew how, even now, I still have issues with certain foods...
If they knew...

If they knew a simple and cheap GAD test would have changed my post-diagnosis life significantly.

Instead, I left hospital with a 100% categorical diagnosis of type 2 diabetes. I was given absolutely no doubt what-so-ever and unsurprisingly I failed to manage my true condition on Metformin, Gliclazade, exercise and... not eating.

Until that note was written by the DSN, everything in my notes said I had type 1 diabetes.

Both my wife and I were told I had type 1 diabetes and that I would require insulin for the rest of my life.

Everything written after that note said I had type 2 diabetes.

...and so I sit here thinking "Why?" and "What if...?"

Sunday, 18 May 2014

Diabetes Blog Week 2014 - Day 7 - My Favourite Things

This week is Diabetes Blog Week.

Each day diabetes bloggers around the world will be writing a blog post on the same topic. You will be able to see who is taking part and what the daily topic is at Bitter Sweet Diabetes.

This is the first year that I have taken part and I've found it extremely challenging. They certainly aren't topics that I would normally choose to tackle, but sometimes it's good to be outside of your comfort zone!

Todays Topic: My Favourite Things

As we wrap up another Diabetes Blog Week, let’s share a few of our favourite things from the week. This can be anything from a #DBlogWeek post you loved, a fantastic new-to-you blog you found, a picture someone included in a post that spoke to you, or comment left on your blog that made you smile. Anything you liked is worth sharing!

My response

This is my last post for #DBlogWeek. Before I write any more on todays topic I want to say a big thank you to Karen Graffeo of Bitter Sweet Diabetes for once again organising such a superb Diabetes Blog Week. Quite how she has managed to do this, blog herself, read all multitude of blogs and comment on so many... as well as eating, sleeping and living life, I don't quite know! I've not managed even half of that and I'm absolutely shattered! So a big thank you to Karen for such a wonderful week of blogging!

I initially planned to share a blog post from each day that I thought was either interesting, struck a chord or gave good insight into the subject of the day, but I soon changed my mind when I saw the thought and quality of peoples posts. However I would like to highlight one from the week which was written by @ninjabetc1 on poetry day (day 2) which I thought was an amazing post about how the media portrays diabetes:

What I loved about the week was the number of new bloggers that started, inspired after the #ourD tweetchat on diabetes blogging. To see so many new voices was wonderful. It has also been interesting to read blogs from parents of those with diabetes - it is so interesting to read and learn about these different perspectives.

So here are just a few of the amazing bloggers in the UK that I've been reading (in no particular order!) over #DBlogWeek:

Saturday, 17 May 2014

Diabetes Blog Week 2014 - Day 6 - Saturday Snapshots

This week is Diabetes Blog Week.

Each day diabetes bloggers around the world will be writing a blog post on the same topic. You will be able to see who is taking part and what the daily topic is at Bitter Sweet Diabetes.

This is the first year that I have taken part and I've found it extremely challenging. They certainly aren't topics that I would normally choose to tackle, but sometimes it's good to be outside of your comfort zone!

Todays topic: Saturday Snapshots

Back for another year, let’s show everyone what life with diabetes looks like! With a nod to the Diabetes 365 project, let’s grab our cameras again and share some more d-related pictures. Post as many or as few as you’d like. Feel free to blog your thoughts on or explanations of your pictures, or leave out the written words and let the pictures speak for themselves.

My response:

The highs and lows of diabetes

Diabetes kit

Weighing up what to eat - Anything is possible

Test anywhere and everywhere... including at the Royal Garden Party :)
I must have forgotten to switch off my mobile phone!

Friday, 16 May 2014

Diabetes Blog Week 2014 - Day 5 - Diabetes Life Hacks

Diabetes Blog Week 2014 - Day 5 - Diabetes Life Hacks

This week is Diabetes Blog Week.

Each day diabetes bloggers around the world will be writing a blog post on the same topic. You will be able to see who is taking part and what the daily topic is at Bitter Sweet Diabetes.

This is the first year that I have taken part and I've found it extremely challenging. They certainly aren't topics that I would normally choose to tackle, but sometimes it's good to be outside of your comfort zone!

Todays topic: Diabetes Life Hacks

Share the (non-medical) tips and tricks that help you in the day-to-day management of diabetes. Tell us everything from clothing modifications, serving size/carb counting tricks to the tried and true Dexcom-in-a-glass trick or the “secret” to turning on a Medtronic pump’s backlight when not on the home-screen (scroll to the bottom of this post). Please remember to give non-medical advice only!

My response:

I'm a newbie to type 1 diabetes so I don't have many tips to share, but I've made plenty of mistakes! When I make a mistake I look for ways of reducing the chances of it happening again. So here are three things I've learnt to do so far:

Fast and slow acting insulin pens
  • Injecting the wrong kind of insulin

    On a couple of occassions I've injected fast acting insulin when I should have injected slow acting insulin. On one occassion I didn't even realise I'd injected the wrong type and happily went to sleep totally unaware. Thankfully? I woke up an hour later, sweating, shaking and shouting out for hypo treatments and after the biggest "hypo monster" feeding session ever, I settled back to sleep.

    Having had a few horrible experiences like this, usually while I'm tired, away from home, I started to use different coloured pens for the different types of insulin I use and I associated a phrase for each one.

    My slow acting insulin (Levemir) is placed in a blue pen and my fast acting insulin (Apidra) in a silver pen.

    (Ice Cold) Blue - Slow acting
    (Bullet) - Fast acting
My bag of life.
This holds everything I need to stay alive!
  • Leaving the house without my diabetes kit

    I might have had type 1 diabetes for a few years now but it still doesn't stop me leaving the house without my insulin sometimes or worse still, leaving the house with my insulin pen only to find there's only a few units left and beautiful triple chocolate muffin sat in front of me! Enforced carb free (and therefore usually food free) days aren't the best. Although if it does happen it's handy for checking your basal rates :)

    So now I have stores of my equipment everywhere. For example, at work I have a full set of needles, lancets, test strips, a spare bg meter and a catridge of fast acting insulin in the fridge.

    I have also invested in a "bag of life" or man bag to hold all my diabetes kit in one place including a copy of my repeat prescription and insulin passport etc.
  • Leaving insulin in the hotel minibar fridge

    I was on holiday in the arctic circle travelling around Norway and Finland and my last night in Norway before flying to Iceland for a week was in Tromso. In the morning I got up, had breakfast, finished packing my bags and checked out of the hotel. Once the car was loaded with my luggage, I drove to one of the museums before finially driving to the airport to catch a flight via Copenhagen to Keflavik in Iceland where I would spend just over a week before finally flying home.

    Arriving at the airport I located the car hire company I would be returning the car to, started unloading my luggage and finalising the paperwork... and then I realised... I'd left all of my insulin cartridges in the hotel fridge!

    I quickly reloaded the car and drove the not so insignificant distance back to the hotel, praying along the way that my insulin was still in the fridge. Thankfully it was! It was then a mad dash back to the airport, hand over the hire car AGAIN and check in, just in time, for the flight. A somewhat more stressful couple of hours than I'd anticipated at the start of the day!
    This could be a life saver!

    Now when I go travelling from hotel to hotel and country to country I take with me some yellow post-it notes with one word written on them.... INSULIN. I place one of these on the door to my hotel room so I see it when I've leaving the room. I also place one on my luggage bag. Hopefully I will never be in the position again where I have over a week of holiday left and no insulin on me :)

Thursday, 15 May 2014

Diabetes Blog Week 2014 - Day 4 - Mantras and More

Diabetes Blog Week 2014 - Day 4 - Mantras and More

This week is Diabetes Blog Week.

Each day diabetes bloggers around the world will be writing a blog post on the same topic. You will be able to see who is taking part and what the daily topic is at Bitter Sweet Diabetes.

This is the first year that I have taken part and I've found it extremely challenging. They certainly aren't topics that I would normally choose to tackle, but sometimes it's good to be outside of your comfort zone!

Todays topic: Mantras and More

Yesterday we opened up about how diabetes can bring us down. Today let’s share what gets us through a hard day.  Or more specifically, a hard diabetes day. Is there something positive you tell yourself? Are there mantras that you fall back on to get you through? Is there something specific you do when your mood needs a boost?  Maybe we've done that and we can help others do it too?

My response:

Most probably the easiest topic yet - the #doc!

When you see people struggling with their first cannula change; or they've injected the wrong type of insulin and are unsure how to proceed; or they've just hit a low point because of a constant stream of highs or lows; or they've recevied a HbA1c result they're unhappy with - the list goes on - you see members of the community engage, discuss and help to resolve the issues and concerns. Some even go as far as to ring up and talk people through the process over the phone! It is simply amazing the support people give each other.

Many of these things happen outside "normal" NHS hours, when GPs, practice nurses and DSNs have finished work for the day and you realise that without the #doc many of these people would be presenting at A&E or ringing 111.

It's a community that most probably doesn't realise how strong and powerful it is.

When a community gets behind a cause things tend to happen. Who would have thought that the #ourD community could improve the advice published online by the likes of WebMD and Boots? That's exactly what they did, by challenging the quality of the advice given and providing constructive alternatives ,WebMD and Boots changed their website within days! We shouldn't be ashamed and We shouldn't be ashamed - we aren't now! shows how that happened.
Every time I read this article I feel proud to be part of a #doc that helped make positive changes, change that will make a difference.

As a community we could come together and create even more positive change - now that's some carb free food for thought!

Wednesday, 14 May 2014

Diabetes Blog Week 2014 - Day 3 - What Brings Me Down

This week is Diabetes Blog Week.

Each day diabetes bloggers around the world will be writing a blog post on the same topic. You will be able to see who is taking part and what the daily topic is at Bitter Sweet Diabetes.

This is the first year that I have taken part and I've found it extremely challenging. They certainly aren't topics that I would normally choose to tackle, but sometimes it's good to be outside of your comfort zone!

Todays topic:What Brings Me Down

May is Mental Health Month so now seems like a great time to explore the emotional side of living with, or caring for someone with, diabetes. What things can make dealing with diabetes an emotional issue for you and / or your loved one, and how do you cope?

My response:

The dreaded buffet!
Many of my blog posts to date have covered some of the things that "get me down".

I've touched on the lack of spontaneity around food.

A recent example of this was when I attended a Christening and the obligatory buffet food that was served after the service.

Whilst everyone else went up to the table to fill their plate, I was sat trying to work out what my meal was going to be, how many carbohydrates it would equate to and what were the chances I'd go back for more.

By the time I had worked out the calculation and injected the appropriate dose of insulin, most people had already sat down and were engrossed in conversation... just as I left to fill my own plate. It can feel quite isolating (as well as stressful) when you are in social situations and have to work out carbohydrates for food you wouldn't normally eat.

Applications such as Carbs & Cals and MyFitnessPal help but it still takes time and energy. A growing number of coffee shops, fast food chains, restaurants and bars are now providing carbohydrate information too and I have tried to document them to help myself (and maybe others too) when out eating: Who helps you carb count when eating out?

The other main area that I find difficult is the lack of control, or perceived lack of control.
The repeated highs or lows, the hungry "hypo monster" and those "If I'm injecting, I may as well make it worthwhile" moments.

I won't dwell too much on these today as I'm sure you have all had these moments. They can all chip away at your positivity.

When you have to sit and wait in the passenger seat of your car for 45 minutes whilst you become road legal (just so you can drive the 20 minute journey home after work) it can be difficult to see the positives in the experience... BUT the #doc is great therapy... they are there when you are low (in both senses of the word), they are there when you are high and most importantly they understand what you are going through... then it's not so bad and you see all the amazing people you have come into contact with because of your diagnosis.

Tuesday, 13 May 2014

Diabetes Blog Week 2014 - Day 2 - Poetry Tuesday

This week is Diabetes Blog Week.

Each day diabetes bloggers around the world will be writing a blog post on the same topic. You will be able to see who is taking part and what the daily topic is at Bitter Sweet Diabetes.

This is the first year that I have taken part and I've found it extremely challenging. They certainly aren't topics that I would normally choose to tackle, but sometimes it's good to be outside of your comfort zone!

Today the topic is "Poetry Tuesday"

This year, Diabetes Blog Week and TuDiabetes are teaming up to bring out the poet in you! Write a poem, rhyme, ballad, haiku, or any other form of poetry about diabetes. After you’ve posted it on your blog, share it on the No Sugar Added® Poetry page on TuDiabetes, and read what others have shared there as well!

My response:

Understanding Hypers - Which dose to revise?

Click, Stab, Test - Sigh.
Calculate, Record,
Inject - Don't cry.

Finding the patterns.
Looking for clues.
Considering options?
Is it time to revise?

Click, Stab, Test - Sigh.
Calculate, Record,
Inject - Don't cry.

What am I doing?
Why am I high?
Will I do exercise?
Is it time to revise?

Click, Stab, Test - Sigh.
Calculate, Record,
Inject - Don't cry.

What is the reason?
Could I be ill?
What justification?
Is it time to revise?

Click, Stab, Test - Sigh.
Calculate, Record,
Inject - Don't cry.

Now I am low.
A hypo to solve.
Was it a miscalc?
What's gone awry?

Click, Stab, Test - Sigh.
Calculate, Record,
Inject - Don't cry.

Monday, 12 May 2014

Diabetes Blog Week 2014 - Day 1 - Change the World

This week is Diabetes Blog Week.

Each day diabetes bloggers around the world will be writing a blog post on the same topic. You will be able to see who is taking part and what the daily topic is at Bitter Sweet Diabetes.

This is the first year that I have taken part and I've found it extremely challenging. They certainly aren't topics that I would normally choose to tackle, but sometimes it's good to be outside of your comfort zone!

Todays topic: Change the World

Let’s kick off Diabetes Blog Week by talking about the diabetes causes and issues that really get us fired up. Are you passionate about 504 plans and school safety? Do diabetes misconceptions irk you? Do you fight for CGM coverage for Medicare patients, SDP funding, or test strip accuracy? Do you work hard at creating diabetes connections and bringing support? Whether or not you “formally” advocate for any cause, share the issues that are important to you.

My response:

Lots of things get me fired up! The hard part is trying to focus on one thing at a time, to feel like I can make a difference, taking one battle at a time rather than spreading myself too thin and acheiving nothing.

Education and knowledge are most probably top of my list currently.

The shocking reality of diabetes in England and Wales (and no doubt the rest of the UK and beyond) is that very few people with diabetes have been offered structured education:

  • Just 2.2% of those with Type 1 and 12.0% of those with Type 2 (who are newly diagnosed) have been offered structured education.
  • In the total diabetes population only 1.6% of those with Type 1 and 4.5% of those with Type 2 have been offered structured education.

For a variety of reasons even fewer people with diabetes are recorded as actually attending structured education:

  • 0.6% for Type 1 and 3.1% for Type 2 for those who are newly diagnosed.
  • 1.0% for Type 1 and 1.4% for Type 2 for all people with diabetes.

It is no surprise (given the lack of education provided) that very few "targets" are met. Those who live with diabetes need the tools to manage their condition and it would seem very few get the training and support they really need.

Source: National Diabetes Audit 2011-2012

Given the evidence base shows that the cost of structured education more than pays for itself in the medium to long term, I fail to understand why it isn't offered to more people. It would reduce the overall cost of diabetes to the NHS and improve the quality of life for those living with this long term condition - a win/win situation and despite NICE guidance and QOF targets I have yet to see much movement in improving these shockingly bad figures.

One of the reasons @OurDiabetes and the #ourD weekly tweetchats was launched (with @ninjabetic1) was to allow others in the online community to host tweetchats on topics that mattered to them. I hope it helps the community to share information and knowledge with each other (as well as being a support network) and it's been interesting to see what fires the community up.

#ourD is inclusive in nature. Everyone with an interest in diabetes is welcomed: from PWDs, to parents, to HCPs, researchers and even MPs! What is most interesting is how the same topics, regardless of diabetes perspective, keep coming up: Education, Stigma, inaccuracies in the media and mental health. I hope #DBlogWeek will help shine a light on all of these topics and more.


1: National Diabetes Audit 2011-2012 (England and Wales data)
2: The cost-effectiveness of the Dose Adjustment for Normal Eating (DAFNE) structured education programme: an update using the Sheffield Type 1 Diabetes Policy Model
3: NICE guidance on structured education
4: QOF changes for 2013/14 to 2014/15 (page 5: DM014)

Thursday, 8 May 2014

Eyes Wide Open

Today was my retinal screening day.

I'd asked and obtained the last appointment slot available as I knew my eyesight wouldn't be up to much for a many hours after the screening.

In previous years I'd been asked to attend hospital but because of where I now live, the hospital team come out to my GPs surgery. It's the first time I've seen the GP waiting room so full of people - most of them there for the last appointment slot of retinal screening - clearly we all wanted a productive day at work before it was ruined by the procedure :)

The screen chimed and told me to visit Room 1. I sat down and the lady introduced herself, explained where she was from, what she would be doing and why - very impressed, a good start!

The usual pre-test questions and assessments were done:

  • What's my name? What's my date of birth?
  • What's my mobile phone number? Where do I live?
  • What's the date of my dx? ...always a fun having to explain this. The system says 2011, not 2009. I guess it depends on whether they want the incorrect or correct dx date :)
  • Am I attending any eye hospital? Have I had any work done on my eyes in the past?
  • What line can I read on the board through each eye?

...and then it was time for those "lovely drops" of Tropicamide 1% to be placed in my eyes.
I was handed a tissue and told to look up so the drops could be administered.

With the drops in my eyes and liquid dibbling down my face, my eyes started to sting but after about 15 seconds the stinging started to fade.

I was handed some leaflets and told to go back in to the waiting room until I was called again.

I find it amusing they place drops in your eyes which makes it hard to read and then provide you with reading material to explain what has just happened, what to expect and what to do if a "rare occasion" occurs. Given my drops went in at 3:30pm I'm not really sure they've thought through what I should do if the "rare occasion" event actually occurs! Should I wait until 9am the following day? I think not!

What's happening and what to do if problems occur

This time, my pack of reading material also included a Diabetes UK leaflet on the 15 healthcare essentials which I thought was a nice touch.

As I waited the 20 minutes required, I watched as each person in the waiting room was called in to get their drops and finally I was called back in to the room.

This time the lights were switched off and I was asked to sit in front of a machine to allow two photographs of each retina to be taken. Just a few minutes work was required and the procedure was complete.

Being cheeky I asked if I could take a photograph of the images they'd just obtained and as usual I got a quizzical look. I "suggested" it was so I could show my wife what they looked like (not quite true but easier to explain!). Bemused she turned the laptop screen towards me and I took a photograph... the only problem is it's difficult to know if the photograph is in focus! How did I do?

My Eyes! My Eyes! My beautiful big red eyes!

Next steps

The images will now be reviewed by someone that knows what they are doing (hopefully) and a summary report on the state of my retinas will be provided to my GP and they will also send me a copy of the letter.

Timescales? I forgot to ask that! #oops