Are we doing enough about emotional health and diabetes? At what cost?

A joint blog by Rosie Walker, Successful Diabetes and Keith Meadows, Health Outcomes Insights


An excellent recent paper culminating from a working group convened by Diabetes UK and NHS England, makes recommendations for supporting emotional health in diabetes care. It articulates 5 core principles and 5 work streams, showing how these cross-cut and can be realistically brought into being by the new Integrated Care Systems (ICSs) (Sachar, Breslin and Ng, 2022)

One of the most striking things about which this paper provides a reminder, from a 2019 publication ‘Too Often Missing’, (Diabetes UK, 2019) is that only 10% of services appear to be making assessments for diabetes related emotional health

The paper also builds on and references several other important pieces of work commissioned and published, for example by Diabetes UK, especially showing where emotional health matters have tended to lack importance compared with the attention the physical aspects of diabetes receive. A clear call to rectify this, from the voices of people living with diabetes is made throughout all these papers. More, the evidence presented shows that virtually any intervention – from prioritising ‘how are you feeling about your diabetes?’ at the start of a consultation, to more complex therapies such as cognitive analytical or behavioural therapy and medications for depression and anxiety – works to lessen diabetes distress and other emotional difficulties, enabling people having to live with this multifaceted, always-in-your-face condition, to get on with the job more successfully

While the exact percentage of services providing assessments might have changed in recent years, with the emphasis and new attention on mental health matters, for example the publication of Diabetes UK’s Emotional Health Guide (Diabetes UK, 2019) and the impacts of Covid-19, this is still a vanishing small number, given that everyone with diabetes has an emotional life as well as a physical one, and that diabetes is very well known to have a specific impact on this. Physical checks and assessments are accepted to be necessary at least annually. If that is the case, the question must be asked ‘why not also assess for emotional health impacts too?’

One reason why such assessments are not made, might be that while well-validated and easy tools exist for the purpose, healthcare staff might not be familiar or even confident in administering them or, perhaps more importantly, not sure about how to interpret the outcomes, take appropriate action themselves or make referrals – or, as we have often heard many people put it ‘opening a can of worms and not being able to close it’. This is completely understandable, given the lack of attention to these matters described above, but as the recommendations from this working group suggest, more training and skill development is as essential for this as it is for knowledge and skills in physical checks

To us, who have worked for many years to highlight and measure the emotional side of diabetes, and also specialise in providing such training, the content of this paper is so welcome in recognising not only the skills required for supporting emotional health, but also for making assessments of it. As the saying goes, ‘what gets measured, gets done’. This is why we have created our unique workshop for diabetes health professionals and other staff,to provide skills and confidence in both practical assessment and providing verbal and non-verbal emotional support in everyday practice, bringing to life these recommendations

One drawback, as is seen in many areas of care today, is the cost, both in terms of time and money, to access such training. Some such training is provided free of charge and providers are helpfully mentioned in the paper. However, as we all know, there isn’t really such a thing as a ‘free’ training – somewhere along the line it needs to be paid for, by commissioning or funding, even self-funding, for both the provision and the time. As a charging provider, we nevertheless believe our training is highly cost-effective

Another saying is ‘where there’s a will, there’s a way’ and we urge all ICSs, diabetes services, teams, practices, to find such a way, for example from, local training or diabetes budgets and through commissioning or external educational grants or sponsorship, for investment in a few simple hours. Hours which are virtually guaranteed to make their lives, and more importantly, the lives of people living with diabetes, demonstrably easier


Successful Diabetes and Health Outcomes Insights provide ‘Supporting and Assessing Emotional Health in Adults with Diabetes’ workshops, monthly, online, for £50pp: details here

Bespoke workshops for teams or groups of staff can also be commissioned and provided either face-to-face or online: All enquiries:

Rosie Walker
Successful Diabetes
enquiries@successfuldiabetes.com
07885 499943


References

Sachar A, Breslin N, Ng SM. An integrated care model for mental health in diabetes: Recommendations for local implementation by the Diabetes and Mental Health Expert Working Group in England. Diabet Med. 2023;00:e15029. doi:10.1111/dme.15029

Diabetes UK. Diabetes and Emotional Health: A practical guide for healthcare professionals supporting adults with Type 1 and Type 2 diabetes. 2019


Diabetes UK. Too Often Missing. 2019

One Size Doesn’t Fit All – So, What’s on the Menu?

With very few exceptions, including the absolute necessity for insulin replacement in Type 1 and the all-round benefits of regular physical activity, for the vast majority, it’s becoming ever clearer that diabetes is a condition where one size most definitely does not fit all. Not in terms of treatments, delivery devices, monitoring, emotional response, coping mechanisms or even the exact diagnosis. As the famous Monty Python quote goes ‘you’re all individuals’, and in this case, there is no little voice piping up, ‘I’m not!’

From SD’s point of view, this is very much A Good Thing, and one which we have long promoted, so it was very heartening to see a couple of recent publications that seem to emphasise this point, albeit in different ways

Firstly, the updated ‘Diabetes UK evidence-based nutrition guidelines for the prevention and management of diabetes’ painstakingly repeat throughout their recommendations that individual’s food preferences, foods rather than nutrients and broader considerations of weight, activity, medications and the like, need to be made alongside simply their ‘diet’ in general or sugar intake in particular

This is a very welcome departure and one, as the recommendations also say, that will be more accessible and relevant to people living with diabetes as well as health professionals. Notwithstanding that, the recommendations are very clear that a reduction in processed foods, refined carbohydrates and an aim for Mediterranean-style healthy eating is valuable. Again, this reflects the evidence without being overly prescriptive as perhaps, previous guidelines have been wont to do

The need for education for both prevention of, and living with, diabetes features heavily in what we might call these new ‘eating’ guidelines. This brings us to the other recent eye-catching publication. This is a review of diabetes self management education programmes , from an internationally known set of authors. The paper describes that for many people with diabetes, education programmes, however effective, are simply not accessible. The authors give the 2 top barriers to uptake as, firstly, that health professionals do not sufficiently recommend attendance and secondly, that people living with diabetes believe there is no or little need for them to attend. Unsurprisingly, the review concludes that both health professionals and people with diabetes may need help to see the importance and benefits of attendance

In a way, there is nothing new about these findings and recommendations. They have been made now in many, many publications, this is just the latest and a high profile one at that. What is striking is, in the UK at least, how little the principles of identification of individual needs and preferences reflecting the ‘one size does not fit all’ approach, seems to apply to providing a range of educational options for people and also helping health professionals get better at ‘selling’ the programmes within consultations and clinics

Recent monies have been allocated by NHS England to diabetes education – obviously this is welcome – but many projects to spend these ££ seem to focus on improving the number of places on programmes, rather than encouraging people to actually attend - closing the referral/attendance gap, as it were

Attention on attendance would appear absolutely vital if the money is to be well spent and reap benefits, yet this doesn’t appear to really be happening, except in some enlightened places that we are aware of, among them Bexley, Walsall and Bedford CCGs, who have taken a concerted and importantly, varied, approach to both the top barriers mentioned above and from previous research

Their interventions include using one-to-one programmes like the Diabetes Manual Programme and also approaching health professionals directly with ways they can quickly and simply (essential features!) provide encouragement that directly counters the known barriers to attendance. In Bedford, we recently helped to create a bespoke webinar for health professionals to participate in, either live or recorded, from the comfort of their desk or office. Early results from this ‘lots of sizes’ approach to dealing with the attendance conundrum in are showing both greater enthusiasm among health professionals and greater attendance among people with Type 2 diabetes, as a recent article in Healthcare Leader journal showed

SD is delighted to have played a part in providing the training and development of these innovations to help achieve these results, in these places, (and there are no doubt others around or upcoming),and providing resources to help encourage attendance, but there is still so much more to do and so much more effort to be made. There is a wide range of reasons that prevent people from attending education, and, in the same way the food recommendations have been made, these need to be systematically addressed with a similarly wide range of initiatives. One size doesn’t, and never will, fit all!


References:

Chatterjee, S et al (2018). Structured education programmes in Type 1 and Type 2 diabetes: a narrative review and current innovations. The Lancet Diabetes and Endocrinology, 6(2) 130-142

Dyson, PA et al (2018). Diabetes UK evidence-based nutrition guidelines for the prevention and management of diabetes. Diabetic Medicine, 35, 541-547

Healthcare Leader News (online) How our CCG Secured £500k to Look After Patients with Diabetes’ 30 April, 2018

Successful Diabetes. How to Encourage Attendance at Diabetes Clinics and Education. Available from SD Downloads

Language Matters – Can You Help?

By Rosie Walker, Successful Diabetes and Anne Cooper, living with Type 1 diabetes since being diagnosed, aged 16, in 1979

We have both attended diabetes professional conferences and reflected on the language used about diabetes, for example, self-care is often labelled with words like ‘compliance’, patients are ‘suffering from diabetes’ and ‘poor’ is contrasted with ‘good’ control. These words carry a degree of stigma, or at the very least affect how people interacted with those of us who have diabetes. Rosie has also recently posted on her blog (see previous post below) including similar examples and more, showing that language really does make a difference

As mentioned previously, in other countries, most notably Australia, there has been a push to change the way language is used and Diabetes Australia have led the way in trying to eradicate words that are unhelpful when supporting people to live with diabetes and suggesting others. Their position statement ‘A new language for diabetes’ was drawn up by an eminent working group including clinicians, psychologists and of course, people living with diabetes. It is the basis for many events and presentations which quite literally ‘spread the word’ about language awareness and use in diabetes care. One such presentation was recently at the American Diabetes Association 2017 meeting in San Diego, where it was proposed that the USA might develop its own statement

Inspired by attending that workshop and/or hearing about it through Australian diabetes advocate and blogger, Renza Scibilia, ourselves and Dr Partha Kar, Associate National Clinical Director for Diabetes in England, have decided to do something about this in the UK; working with people with diabetes, and also professionals and voluntary sector organisations, to create a UK statement that raises awareness of and promotes the best use of language in relation to diabetes and people living with it

To start us off, we would like to hear your views

What words or phrases do you think should be discouraged from use in referring to people living with diabetes, the management of their condition and/or diabetes care generally? Perhaps you could give us a list of your ‘top 5’ recommendations with alternatives?

To help you get started here is the Australian position statement


Please post your comments in the comments box below or tweet your reply to @successdiabetes or @anniecoops using #Diabeteswords, by the end of July 2017. You can also email your thoughts privately to enquiries@successfuldiabetes.com

You can also comment on other people’s ideas if you wish (politely of course!)

We will be putting all the ideas together and will take all comments into account when drafting the statement

Please contribute and also share this invitation as widely as you can – we would like to get the views of as many people as possible!

Thank you!
Anne Cooper @anniecoops and Rosie Walker @successdiabetes

The Language WanD? Let's wave it!

Way, way, way, waaaay back in 2011, SD welcomed with open arms the Diabetes Australia position statement, 'A new language for diabetes'.

It has remained on the ‘SD Downloads’section of the website ever since (scroll down here to download your own copy)

Screeching right back to 2017, Renza Scibilia, the highly esteemed Australian diabetes advocate and blogger at ‘Diabetogenic’ has reminded us, after an extremely popular session at the American Diabetes Association Conference 2017, that 6 years on, the contents of the document are still a revelation to many and do not go nearly far enough

More than this, there is not an equivalent in the UK – or many other countries See Renza’s inspiring and thought provoking blog here

Successful Diabetes regularly calls out inappropriate language around diabetes, including the word ‘subject’ for research participant and negative and judgmental terms around blood glucose results and behaviour. On the radio recently, I felt I needed to challenge even Diabetes UK’s wording,in a press release for Diabetes Week, that people were ‘failing’ to eat enough fruit and vegetables

In workshops, we make regular references to the way careless language applied to people in consultations, can be distressing and demotivating. A famous cartoon showing a sign, above a diabetes consultation room door, saying ‘next pancreas please’ sums up nicely what can happen when language is ill-considered

To date, one of the worst impacts I have heard, is someone who described feeling ‘like an HbA1c on legs’, such was the greater emphasis on her biochemistry than her as a human being. Many of our previous blogs have talked about person centred (and less so) approaches, for example in consultations

But there is more to do

Renza’s call is for the language of diabetes to be front and centre, and for accepting, inclusive, neutral and non-judgemental terms to be used by everyone in the world of diabetes. In short, to make it unacceptable to treat or refer to people living with diabetes with anything other than these terms

Some people with diabetes feel that words and language in relation to diabetes don’t matter as much as other things and, for example, whether they are called ‘diabetic’ or not, is immaterial

My view on this is completely clear. This is not a call for people living with diabetes themselves to ‘mind their language'. Anyone is perfectly free to refer to themselves and their condition however they wish – as in most other areas of life. This is about how other people, and especially health professionals and scientists, use language in relation to diabetes and those with it, and especially when they are not in earshot or attendance

When perjorative, judgemental or discriminatory terms are used, however unconsciously, by others about people with diabetes, it implies their belief and attitude towards them. If you don’t believe me, try this: heard from a highly qualified health professional giving a teaching session for other health professionals. Giving an example of someone attending their clinic with a particular condition, they said of them: ‘typical diabetic, never does anything right’. If that is the attitude expressed outside the consulting room, it is fair to ask what is it like within it? And also, what does it say, that this view is being promulgated among others who also consult?

Whether we like it or not, these kinds of ‘throwaway’ comments are alive and well and common, and belie an attitude far from the ‘individualised’ ‘courteous’ or ‘collaborative’ that are so often recommended in documents and policies

If you want to get started in using a different language for diabetes, there are some remarkably easy tips:

• Read the Australian document ‘A new language for diabetes’ and pick a few terms to replace the ones you already use;

• Become more conscious of your language around diabetes – for example, do you inadvertently refer to people as ‘diabetics’, as if they were all the same (the excuse ‘I do know they’re all individuals, it’s just a convenient shorthand’ is not good enough, by the way!); do you regularly think of people being 'non-compliant' or 'tablet failures', even in your head? Awareness that you are doing this is a great first step

• Try using the word ‘person’ next time you’re tempted to say ‘patient’;

• Talk about ‘progress’ or ‘information’ rather than ‘results’; ‘food’ rather than ‘diet’; ‘activity’ rather than ‘exercise’;

• Give the actual numbers to someone, that relate to their HbA1c or blood pressure, and the recommended range for comparison, rather than simply your judgment about them (for example, ‘your blood pressure is too high’);

• Listen out for how your colleagues and others refer to the people they are seeing. Is there an (albeit unconscious) bias towards negative, judgemental or gender stereotype?

These are just to get you started, you’ll find many more ideas in the Australian Position Statement document

There’s another aspect to language in diabetes, which extends to general healthcare, too. That is, among health professionals and colleagues themselves. There seems to be an unspoken, or even sometimes spoken, hierarchy, one based on perceived power and gender, which comes out in our language. For example, when talking of teams, the first people cited are often the doctors. Within that, it’s an almost hard-wired assumption that ‘Dr’ = he (how many times have you heard or even said ‘he’ about a doctor, when they turn out to be a ‘she’?)

Then it’s the nurses, then everyone else, especially lowly mentioned tend to be admin staff. Some key team members, such a psychologists, rarely even get a mention

It’s a rare team that isn’t assumed to be, or actually, led by the doctor/consultant, and it’s also common for ‘my’ to be applied by the aforementioned lead, as in ‘my nurses’, ‘my staff’, ‘my team’. Not everywhere, not everyone, but there is something to be addressed here, too, I believe

WanD to the rescue?
Do we, perhaps, need a campaign to have our own UK language position statement for diabetes? One perhaps created with the help of Diabetes UK, and, as Renza suggests, one which could be issued to, and expected to be used by, all and any organisations and persons who purport to advance the welfare of diabetes and diabetes care?

Such a position statement could be based on the Australia document, so it doesn’t have to be a difficult task to create, and creating it doesn’t have to take long

Doing this would mean that if we truly believe that language about diabetes matters (and there is plenty of evidence that it does), we will be putting our beliefs into action in a really practical way – and helping to foster the true person-centred approach that 21st century diabetes care deserves

I suggest a call for support could be called ‘Words and Diabetes', or 'WanD' for short. According to my research, there is a hashtag ready and waiting, which is #WanDLanguage (#wand already taken!)

Support is needed for this idea. Whatever your perspective on diabetes, if this idea resonates with you and you believe that here in the UK, we need our own ‘new language for diabetes’ please comment below, tweet using #WandDLanguage or write to SD at enquiries@successfuldiabetes.com

For my part, I’ll be approaching everyone I know to try to wave the ‘WanD’ and get such a UK position statement on Words and Diabetes off the ground

Where will you start?

Thank you for the prod, Renza! #languagematters #WandDLanguage

UK Childhood Obesity Plan - A Bit Thin?

The UK Government has recently published its long-awaited Childhood Obesity Strategy. It’s unusual for a policy document because it’s very short and to the point. It explains concisely what is planned to be done to combat the very real health threat emerging from young people being overweight and obese – this puts them at risk of Type 2 diabetes, cardiovascular disease and many other conditions. It has even been said (although not in the strategy) that this generation of young people may even be at risk of dying before their parents, due to the health risks of overweight, obesity and inactivity. A very serious situation

The overall target stated in the strategy is to reduce ‘significantly’ the number of obese children by 2020. It doesn’t explicitly state what ‘significantly’ means in actual numbers, however it does say, close to the start of the strategy, that the publication of this ‘plan for action’ represents the beginning of a conversation, rather than the final word. This must mean that further details will follow

So, what does this ‘conversation opener’ include? A number of high profile plans, some of which have been the matter of discussion in the press for many months, namely:

A tax on soft, sugary drinks – due for legislation in February 2017. Interestingly, the policy seems to suggest this will not be paid by consumers, but by producers and importers;

A 20% reduction in the sugar content of the 9 highest consumed products by children – including yoghurt, cereal and sweet spreads. This is an initial list of products, more will apparently, follow later;

Helping all children have an hour of physical activity every day. This intention includes working with schools to identify key times of inactivity and work on making them more active. Schools will be responsible for providing at least 30 minutes of activity, parents and carers the other 30 minutes;

Other aims include focusing on healthy school meals, providing breakfast clubs and making the contents of vending machines healthier, thereby creating a healthy eating environment wherever young people are

So far, so good. These are all admirable plans and there is some degree of joined up working between, for example, schools, the Department of Health, Public Health and private companies, such as leisure centres. We wish these initiatives well, as every step definitely matters

However, we’re concerned about aspects that aren’t on the list – perhaps yet, we hope. Here’s our wish list for additions:

Something more than acknowledgement that eating behaviour arises not just from the amount and content of food provided, but from an emotional context, too. Children learn their eating habits from their early experiences, and food is often used as a surrogate for expressing emotions within families. Sadly, too, food can become a comfort for children who aren’t experiencing unconditional love and nurturing that plays an important part in shaping their view of themselves, others and the world. The strategy says nothing about the psychology of eating in young people who are overweight and obese, choosing instead to focus on equalizing the energy in/out balance to gain a healthy weight;

An emphasis on how young people can identify the link between their eating and their feelings and get help, both emotionally and physically. True, the NHS is mentioned, particularly the role of health visitors and school nurses in helping families to start good habits early. However, mention of skills training in dealing with ‘difficult conversations’ seems to be limited (perhaps to online courses?) and reviewing the content of existing materials, plus bigging up the ‘making every contact count’ initiative. NHS professionals are urged to ask families about eating behaviours at every opportunity, which could become counter productive if people feel ‘nagged’, or more importantly, if there is insufficient time, insight or skills to deal with the ‘difficult’ answers they might give;.

More focused, detailed training and a proper resource list of emotional and psychological support for eating behaviours – which could be for families as well as individual young people, not to mention health professionals themselves – would be very helpful. This could include mental health, eating disorder and young peoples’ charities, as well as statutory agencies;

Finally, what of the money that will be raised through the ‘soft drinks industry levy’ – known popularly as the ‘sugar tax’? Most of it seems to be committed to schools, with increase in the primary PE and sport premium and the investment in breakfast clubs. Could some of it be used for wider support as we have suggested? Schools are important, but not more important than families and emotional health for the future. Wider application of the finances raised is much needed. A further question is what happens when the money runs out? Is there a longer term plan to maintain these young peoples’ health throughout their lives?

Since schools are so much mentioned in the policies, and there is much to commend the efforts it describes, we’d offer the Government 7/10 so far….but wait expectantly to see if their plans for reducing weight will be fattened up


Reference
HM Government. Childhood Obesity: A Plan for Action. London 2016

UK Childhood Obesity Plan - A Bit Thin?

The UK Government has recently published its long-awaited Childhood Obesity Strategy. It’s unusual for a policy document because it’s very short and to the point. It explains concisely what is planned to be done to combat the very real health threat emerging from young people being overweight and obese – this puts them at risk of Type 2 diabetes, cardiovascular disease and many other conditions. It has even been said (although not in the strategy) that this generation of young people may even be at risk of dying before their parents, due to the health risks of overweight, obesity and inactivity. A very serious situation

The overall target stated in the strategy is to reduce ‘significantly’ the number of obese children by 2020. It doesn’t explicitly state what ‘significantly’ means in actual numbers, however it does say, close to the start of the strategy, that the publication of this ‘plan for action’ represents the beginning of a conversation, rather than the final word. This must mean that further details will follow

So, what does this ‘conversation opener’ include? A number of high profile plans, some of which have been the matter of discussion in the press for many months, namely:

A tax on soft, sugary drinks – due for legislation in February 2017. Interestingly, the policy seems to suggest this will not be paid by consumers, but by producers and importers;

A 20% reduction in the sugar content of the 9 highest consumed products by children – including yoghurt, cereal and sweet spreads. This is an initial list of products, more will apparently, follow later;

Helping all children have an hour of physical activity every day. This intention includes working with schools to identify key times of inactivity and work on making them more active. Schools will be responsible for providing at least 30 minutes of activity, parents and carers the other 30 minutes;

Other aims include focusing on healthy school meals, providing breakfast clubs and making the contents of vending machines healthier, thereby creating a healthy eating environment wherever young people are

So far, so good. These are all admirable plans and there is some degree of joined up working between, for example, schools, the Department of Health, Public Health and private companies, such as leisure centres. We wish these initiatives well, as every step definitely matters

However, we’re concerned about aspects that aren’t on the list – perhaps yet, we hope. Here’s our wish list for additions:

Something more than acknowledgement that eating behaviour arises not just from the amount and content of food provided, but from an emotional context, too. Children learn their eating habits from their early experiences, and food is often used as a surrogate for expressing emotions within families. Sadly, too, food can become a comfort for children who aren’t experiencing unconditional love and nurturing that plays an important part in shaping their view of themselves, others and the world. The strategy says nothing about the psychology of eating in young people who are overweight and obese, choosing instead to focus on equalizing the energy in/out balance to gain a healthy weight;

An emphasis on how young people can identify the link between their eating and their feelings and get help, both emotionally and physically. True, the NHS is mentioned, particularly the role of health visitors and school nurses in helping families to start good habits early. However, mention of skills training in dealing with ‘difficult conversations’ seems to be limited (perhaps to online courses?) and reviewing the content of existing materials, plus bigging up the ‘making every contact count’ initiative. NHS professionals are urged to ask families about eating behaviours at every opportunity, which could become counter productive if people feel ‘nagged’, or more importantly, if there is insufficient time, insight or skills to deal with the ‘difficult’ answers they might give;.

More focused, detailed training and a proper resource list of emotional and psychological support for eating behaviours – which could be for families as well as individual young people, not to mention health professionals themselves – would be very helpful. This could include mental health, eating disorder and young peoples’ charities, as well as statutory agencies;

Finally, what of the money that will be raised through the ‘soft drinks industry levy’ – known popularly as the ‘sugar tax’? Most of it seems to be committed to schools, with increase in the primary PE and sport premium and the investment in breakfast clubs. Could some of it be used for wider support as we have suggested? Schools are important, but not more important than families and emotional health for the future. Wider application of the finances raised is much needed. A further question is what happens when the money runs out? Is there a longer term plan to maintain these young peoples’ health throughout their lives?

Since schools are so much mentioned in the policies, and there is much to commend the efforts it describes, we’d offer the Government 7/10 so far….but wait expectantly to see if their plans for reducing weight will be fattened up


Reference
HM Government. Childhood Obesity: A Plan for Action. London 2016

Bring On The Diabetes Storm?

There’s been a flurry of diabetes-related reports, guidelines and activity in the last few weeks, kicked off with the release of the new NICE guidance for Type 2 diabetes at the start of December. Hotly debated in its draft stages, the guidance was delayed by the need to re-work some of the recommendations as a result

However eggy-faced this might have made the authors, the result is hugely improved and more importantly, will probably benefit people with Type 2 diabetes and professionals alike to a much greater degree

It’s not perfect by any means. Foremost in our minds here at SD, is the disastrously limited use for personal blood glucose monitoring, about which we have expressed concern before on this blog. However, the authors and guideline committee have clearly listened to their critics, and allowed a much greater freedom of choice, for example of which medication class to use as treatment intensifies. They’ve also very helpfully articulated exactly what education programmes should comprise and when these should be offered. And at least, the topic of self-blood glucose monitoring in Type 2 diabetes is recommended for more research. So, good – as far as it goes

Of course, no guideline is of any use at all unless it’s followed – so take a look at the full thing and see whether it applies to your life or work with Type 2, or check out our ’10 Guideline Headlines’ for an overview to whet your appetite.

Elsewhere, Diabetes UK reported recently that diabetes numbers are ever growing, and have now topped 4 million, with the majority having Type 2 diabetes and people with this form are becoming younger and younger at diagnosis. This knowledge is bittersweet – on the one hand it focuses the minds of policy makers and the NHS alike, but on the other, to world-weary, longstanding diabetes campaigners and organisations, it brings a huge temptation to shout ‘I told you so!’, as they recall so many other warning reports that this would in fact, come to pass, and feel sad that these warnings were not heeded

But we are where we are, and so the recent report of the Public Accounts Committee of the UK Government, concluding that diabetes is costing the nation far too much and there is far too much variance in the standards of care, shines a welcome light on what needs to be done urgently, albeit the cry of ‘again’ might be heard from some quarters

Just today, it’s been announced that the All Party Parliamentary Group (APPG) for Diabetes will be hosting an international diabetes conference in Parliament on 3rd February, with the aim of sharing best practice in diabetes and raising awreness. It’s open to attendance by people living and working with diabetes alike, providing a welcome chance for these groups to meet each other on common ground. That’s an opportunity not often seen, despite grand rhetoric about collaboration and partnership in care. Despite the short notice, this is likely to be a buzzing event and something new and different to herald what looks likely to be a landmark year for diabetes developments.

Judging by the way it’s started, there’s every reason to hope this new year diabetes flurry becomes a full-on storm! Bring it on


References

Management of Type 2 Diabetes in Adults
Type 2 Diabetes – Time to Test?”
SD Downloads
Number of People with Diabetes Reaches Over 4 Million
Diabetes: Government and NHS Too Slow to Act, say MPs
APPG to Host International Diabetes Conference in UK Parliament

Bongs and Gongs: But Aren’t We All Winners?

When the bongs sound at midnight at the end of the year, one thing about the year to come is already known – who has received a New Year Honour, as typically these are announced on or around New Year’s Eve

Last year was no exception and it was absolutely delightful to hear that a prominent professor of diabetes and the chair of one of Diabetes UK’s local groups had both been awarded a national medal. Both are extremely well deserved and we offer them our hearty congratulations

When congratulated, recipients almost always say the award is not just for them but for the people they work with and for. This seems to be especially true for diabetes, which requires so much more than personal input, but also the support and contribution of many others, whether diabetes is personal or professional. Obviously not everyone can get a medal - and nor would everyone want one

What’s indisputable, however, is that where honours are accepted, they give a wonderful opportunity to highlight diabetes and its self care and medical care needs, and to put the people who live and work to improve both experience and outcomes firmly in the spotlight. Many people work hard in the cause of diabetes and in that sense we are all winners – those honoured help to show that

Wishing everyone the honour of a Happy and Healthy New Year!

8757 or 8760 - What’s the Difference?

Diabetes is a self managed condition. You live with it 24/7 and make decisions about how to manage it during that time. If you’re lucky, you receive help, support and learning, both informal and formal, from your nearest and dearest, other people with diabetes, diabetes health services and organisations. But it’s still yours every day.

Campaigns like the recently launched ‘Taking Control’ by Diabetes UK highlight how important the education side of things is, helping people to understand more and learn the skills to make those daily decisions. ‘SD Comments’ has talked many times about the tiny numbers of people who actually receive such learning opportunities, even though they are recommended for everyone, So, we’re really pleased to see this campaign get off the ground, support it wholeheartedly, and wish it every success. There is just one thing, however…..

…and that is, the first sentence of the introduction to the campaign reads ‘..people with diabetes only spend around three hours with their doctor, nurse or consultant. For the other 8757 hours, they must manage their condition themselves’. This implies that when someone with diabetes is consulting, somehow the responsibility for their diabetes belongs to the health professional they are with.

It’s not deliberate, but this is another example of what might be called ‘unconscious paternalism’ – the idea that it’s ok for ‘patients’ to do their own thing unless they are under the jurisdiction (ie in the consulting room) of a health professional.

Apart from being at odds with the personalised care policy, the push for greater collaboration between health professionals and people with diabetes and promotion of self care, this assumption also makes the mistake of thinking that the health professional being consulted actually knows what is best for the person. They may be valued experts in diabetes, but not in living with diabetes and particularly not in an individual’s life with diabetes, not on that day, in that hour, or ever. Nor should they try or expect to be.

What’s needed is for this oft-trotted statistic to be reflected upon. Is this really what we want those numbers to mean? We suggest not. It’s perfectly valid to count the hours (or lack of them, some would say) that someone spends with a health professional, It’s also perfectly valid to consider how well these hours are used to promote and support self management and daily decision making. What’s not valid is to perpetrate the unconscious but well-rehearsed assumption, however well-meant, that really, it’s the health professional who matters most, who is somehow ‘in charge’

People with diabetes are perfectly capable of looking after their diabetes within a consultation as outside it, 8760/8760. The job of the consultation is to reflect and work together on the experiences these hours raise for the person themselves, so that they are equipped to make each one of them a success

Reference

Diabetes UK’s Taking Control Campaign

Should There be Sugar Everywhere?

The campaign to encourage the UK Government to tax sugary soft drinks stepped up a notch this week, with Jamie Oliver continuing his quest at the Houses of Parliament, first with the Health Select Committee and then with the All Party Parliamentary Group (APPG) on Diabetes. He reckons the tax will raise up to £1bn and also change the nations habits and choices towards low sugar varieties of fizzy drinks or water. Jamie’s leading by example in his own restaurants, by making sugary drinks more expensive than ‘diet’ varieties.

Whether this will even be adopted, much less work, remains to be seen. A new tax, particularly on a ‘pleasure’ related activity, may not be popular with the all-important voters. And might it smack of ‘nanny state-ism’, trying to organize the behaviour of the population, rather than allowing them to choose for themselves what is good for them and their families? Discussion boards are full: of ‘righteous restrainers’, who ask why they should pay more tax just because others cannot control themselves in relation to calories, as well as ‘generous gifters’, who see the benefits to all – dental, environment, economic – of a change in availability of so much sugar – and everything in between. Public opinion is divided.

On the other hand, it’s undeniable that we are in the middle of a resolutely ticking, weight-related time bomb, set to go off at any time and unleashing untold illness, misery, and expense to the NHS among middle aged and younger people. Some say there is a generation alive now, who will be the first to die before their parents, because of the wrath of Type 2 diabetes, cardiovascular disease and immobility, caused by excess calories, of which they are largely unaware because of (allegedly) limited labelling and ruthless marketing on the part of the giant fast food industries

How can these issues be resolved in the interests of everyone? One thing’s for sure, this will not be a ‘one solution fits all’ situation – tax sugary drinks and all will be well. Equally, we believe strongly that people are the best decision makers for themselves, given the information they need to weigh up their choices. So there needs to be a much wider range of information and approaches. Here are some of our ideas to contribute to a way forward:

The National Prevention Programme for Type 2 Diabetes needs to be heavily involved in messages about the seriousness of Type 2 diabetes and the possibility of its prevention, directed at everyone, rather than to those immediately at risk. There are still too many myths about Type 2, including ‘it comes on in later life’ and ‘it’s only the mild form’. The nation’s psyche in this respect needs all the help it can get to change.

Fast food, ready made food and drinks companies need to invest in much clearer labelling to help people make choices – Jamie Oliver’s suggestion that sugar content is shown in spoonfuls rather than grams, for example, would make much more sense to every buyer as they can envisage those spoonfuls being added.

Comparison tools (maybe linked to the self-scanners on trolleys or on the shop floors?) to be freely available in food stores . These would show the relative sugar content of different products by name, so that people can make on the spot choices while actually shopping. These comparator tools could also be online or even (remember the old ways?) in pictorial leaflet –form, but would be most important in-store, where the shopping head is in full control.

The answer to the question this blog poses? There can be sugar everywhere, but it doesn‘t mean we have to eat it. Other substances are also available – as long as we know it!


Reference

Be Bold on Sugar Tax, Jamie Oliver Says

Jamie Oliver meets with Diabetes UK at Parliament

Old Things in New Ways?

The promotion of self-management of diabetes by the person with the condition themselves is not new. As far back as the 1940s, when insulin was relatively new in town and medications for Type 2 diabetes were hardly thought of, a young doctor called Robin Lawrence wrote in his book ‘The Diabetic Life’ – ‘the patient must be at once his own doctor, dietitian and lab technician’. This urge and acceptance that diabetes is absolutely a self-managed condition somehow got lost over proceeding decades, when health professionals tended to take charge of both medications and expectations

More recently there’s been a massive upsurge in ‘people power’ in society generally. The expectation and indeed, often, political will, is that people will do things for themselves. We are our own cashiers in the supermarket, our own bankers and even our own hotel receptionists. This upsurge has been replicated in medicine, not least because most illnesses these days are the long term variety, such as diabetes, that people have to manage themselves each day. This is well recognised, being mentioned in health policy documents as well as official guidelines and enacted in practical situations such as GP’s clinics and hospital wards. Indeed, our own work here at SD is all about promoting success in living with diabetes

Given this situation, the news this week that a major international meeting of the great and the good of diabetes care and education, held here in the UK, had formed an alliance which resolved to make diabetes care more person centred and promote self management, would seem rather unnecessary. Surely things are going in the right direction already? Do we need another layer of ‘initiative’ in this direction?

The truth is, as we’ve no doubt said before, that there is a lot of TALK about promoting self-management and being person-centred, but often the ‘old ways’ – a rather paternalistic approach, people being ‘told off’ for not achieving text book results, scant regard for the emotional turmoil which many people experience their diabetes, etc etc – persist, even supported by protestations that ‘the patients need me to tell them what to do, otherwise they wouldn’t know’

Hence a new, eye-catching way of promoting this way of being in relation to helping people really run their own condition has got to be good. The words might not be new, but the actions could reflect new times to come. We await this Alliance’s progress with our full support

Talking of old and new, SD is changing its ways this week, too. 30th September 2015 sees the last issue of our monthly newsletter, which has been running since 2008. Our refreshed communication plan is to make much more use of the instant means available to us, to update much more often using the 21st century tools of social media, Facebook, Twitter and the like – and add more frequent, but shorter, comment on the blog here. The need to communicate is as old as the hills, but the ways of doing it can be ever newly minted!

References

The Diabetes Times: Alliance formed to promote diabetes self management

No Judgement Please – We’re Doing our Best!

Recently, two unrelated publications, one an Australian blog and the other a UK peer-reviewed medical journal, have given voice to the same topic. Their different and highly complementary views combine to offer a powerful message, close to the heart of many with diabetes as well as ours here at SD.

On 7th August, Renza Scibilia wrote her daily blog about living with diabetes as if it were a letter to a diabetes doctor in a new clinic. It started with the words ‘you and I are on the same side. My side’, then continued expressing the hope of partnership, of mutual understanding and the absence of judgement about her life with diabetes. Above all, she expressed the desire for recognition that even when diabetes isn’t going too well in her life, that she is always doing her best.

Her message is clear: respect my expertise and I’ll respect yours, so we can have a great and useful relationship. This post attracted a number of comments, including one from a diabetes educator who said ‘you have helped me become a better clinician’. It occurred to us that the idea of a ‘letter of introduction’ such as this, should perhaps be an option in all clinics, to help break down the assumptions, myths and negative judgements that, however inadvertently, often underlie the consultation words from a health professional towards and about the person with diabetes.

Which helps to introduce the second publication, from the respected journal ‘Diabetic Medicine’. In the first study of its kind, the authors interviewed parents of children with Type 1 diabetes about the challenges of keeping their children’s blood glucose in range, in the context of their everyday lives.

Apart from the surprise that such a qualitative study had not been undertaken before now, there were two major new findings in this paper – one being that parents often had ‘home’ and ‘away’ blood glucose targets – the latter being more relaxed than the former. This reflects the desire to ensure their child was safe from hypoglycaemia and able to enjoy the event they were attending without their parents. It also showed their recognition that other care givers at events would not have the detailed knowledge that they had about the intricacies of diabetes-related actions and their own child’s condition. This in itself was hugely moving, the parents wishing ‘a normal life’ for their child and reassurance for themselves that hypoglycaemia, an ever present fear for parents, was unlikely outside of their direct care.

The second finding was in relation to consultations with health professionals, who, although excellently reviewed in terms of knowledge of diabetes and its treatment, were universally found to expect a ‘text-book’ achievement of recommended HbA1c levels, without apparently realising the realities and complexities of life with diabetes that the parents had to face. It seemed to be summed up in the comment by one parent ‘you’ve tried really hard…and you get ‘oh their HbA1c is not good enough, you need to do better’. In this single sentence, the sense of demoralisation, frustration and unrecognised effort rings out.

Unsurprisingly, one of the conclusions of the paper is that health professionals need to be more empathic, more recognising of effort as well as results and have a training that engages in the everyday detail of living with diabetes as well as the medical and scientific knowledge which currently prevails.

What are we saying here by bringing these two pleas together? Quite a simple message really, one for health professionals as they invite people living with diabetes into their consulting rooms, and one which is really quite easy and cheap to achieve. It’s summed up by something a colleague of ours said many years ago ‘always remember to honour effort as well as outcomes’.

It’s only the sheer effort and doing their best by people who are in the complex maelstrom that diabetes can present in life, that gets any outcome at all. And the only judgement that effort deserves, is a massive ‘well done’ at each and every visit. Please, just do it.

References

Diabetogenic: Dear Doctor: 7 August 2015

Lawton, J., Waugh, N., Barnard, K., Noyes, K., Harden J., Stephen, J., McDowell, J., Rankin, D. (2015). Challenges of optimizing glycaemic control in children with Type 1 diabetes: a qualitative study of parents’ experiences and views. Diabetic Medicine , 32, 1063-1070

Type 2 - Time to Test?

Self monitoring of blood glucose (SMBG)for people with Type 2 is currently restricted, in both local and national recommendations, to those in all but very specific circumstances. We believe this is, at best, unfair and at worst, in complete contravention of current health policies which promote self-responsibility for health, self-management of long term conditions and individualised approaches to care. We believe that all people with Type 2 diabetes should be given the opportunity for SMBG. Here's why:

Type 2 diabetes is a progressive, serious condition which requires for many, considerable lifestyle changes if its dire consequences are to be avoided or detected promptly. For everyone, success in managing their condition depends on daily medication, physical activity, attention to timings, amounts and content of food and drink. Also required is effective and prompt action in the face of stress, illness, driving, holidays, work and social life, short-notice schedule changes, family responsibilities and more. In short, every aspect of daily life.

If people with Type 2 diabetes are to take their condition seriously by doing all this, as many in healthcare say they should, then they need the only practical tool available to them to help, namely SMBG.

1. But this is expensive, say health economists and budget holders: to which we say - but losing 20 years of your life to uncontrolled diabetes is also expensive, as is heart failure, amputation, kidney dialysis and blindness, which are among the most costly and avoidable consequences of not self-monitoring.

2. But people don't know how to use SMBG properly, say health professionals: to which we say - that's your fault for not explaining how it needs to be used and how serious a condition Type 2 diabetes is, and the need for rigorous self management, right from the start.

3. But there's no evidence it improves diabetes control or HbA1c, say researchers and medics: to which we say - most people with Type 2 diabetes aren't solely interested in their HbA1c, indeed many don't even know what this level is. What they are interested in is their everyday life and making this as hassle-free as possible, avoiding hypos and high blood glucose levels which can be inconvenient, embarrassing and even dangerous (e.g. when driving, as most people do). They also wish to see for themselves the positive effects of their strenuous efforts to make lifestyle changes and the choices they make daily, not wait 3 months for the health professional to order a repeat HbA1c.

If we are truly committed to a population of people with Type 2 diabetes effectively self-managing, they must have the tools to do this vital, cost-effective job. It's time to get people with Type 2 testing - or at least give them the choice.

When is Structured Education not Structured Education?

Back in March we praised a report by the All Party Parliamentary Group on Diabetes for their timely and important report on the state of diabetes education. We asked ‘what difference will this report make?’

It would appear that the jury is still out on that question, if Diabetes UK’s latest briefing report is anything to go by. Entitled ‘Diabetes Education: the big missed opportunity in diabetes care’, it explains that although diabetes education is recommended, it is hardly provided or attended. In a separate Diabetes UK survey, released for the recent Diabetes Week, 42% of people with Type 2 diabetes reported themselves to be unconfident about managing their condition.

It’s pleasing to see these messages being highlighted again, much as we and others have done many times in this blog and in other publications. We await the updated NICE guidance on Type 1 and Type 2 diabetes, to see if there is any emphasis at this level which could improve the situation for so many people with diabetes who are lacking the ‘tools to do the job’ of looking after a complex and at times, complicated, condition. Although, having seen the drafts of these guidelines, to be honest, we are not holding our breath here at Successful Diabetes! Diabetes UK are also campaigning for people to lobby their MPs about the issue, so we can hope that this personal approach brings much needed attention instead

So, whilst Diabetes UK’s briefing and its echo of many other calls to action in respect of the parlous state of diabetes education is welcome, we are bound to say that unfortunately it doesn’t tell the whole story in relation to the definition or availability of structured education. Here’s why:

It defines level 3, or structured, education solely in terms of group education. To our knowledge, there is nothing in the definition of structured education that says it has to be provided to groups of people. In fact, one of he earliest definitions of structured education, from the 2003 Technology Appraisal from NICE, says that it is ‘a planned and graded programme that is comprehensive in scope, flexible in content, responsive to an individuals clinical and psychological needs, and adaptable to his or her educational and cultural background’ (p 14). To be fair, the Appraisal mentions group education as being a principle, but also states ‘unless group work is considered unsuitable for an individual’ (p 4) and that ‘the aim of education for people with diabetes is to improve their knowledge and skills, enabling them to take control over their own condition’ (p 7). In defining structured education in this way, Diabetes UK have themselves missed an important opportunity to consider and acknowledge successful 1-1 structured education programmes, such as our own Diabetes Manual Programme.

As we’ve mentioned before, it’s rare that the Diabetes Manual Programme, a fully evidenced, educational intervention based on self-efficacy (otherwise known as confidence) principles, gets a look in, in such august reports. This needs to change, as the world has done so much since these early-cited documents were published.

Diabetes UK Briefing

Diabetes Manual Programme

Got diabetes? Welcome to the family

Our latest guest blog is from Joe Griffiths, on how finding the diabetes online community changed his life - and work!

I went 10 years before I started to look for outside help with my diabetes. Whilst I would keep my doctors and specialist nurses in the loop with how things were going sugar-wise, I kept the emotional side of things close to my chest. This was a mistake. Without realising, I was living with my diabetes like it was an embarrassing little brother. The kind you don’t want to bring to the party but feel like you have to because someone needs to look after him. He’ll pull on your arm when he needs attention or make a huff if you haven’t introduced him yet. He’s basically a needy little douche bag.

However, one day I randomly decided to take it upon myself to do some googling about online help for diabetes. What Google spat back at me was way more than I had anticipated. It wasn’t just the regular government supported sites taking up the first 10 spaces, instead there were links to blogs and online magazines. Unbeknown to me, there’s a whole community out there.

I immediately took to Twitter and searched for diabetes. Once again I found myself doing my best impression of a deer in headlights. I literally couldn’t believe my eyes! People were actually talking loud and proud about their diabetes, even mentioning it in their Twitter profiles. Once I had gotten over the initial shock, I began my own transformation…

In the space of a few weeks, I had more than doubled my Twitter follows and followers; connecting with my fellow pancreatically challenged brethren. I was instantly welcomed by several members of DOC (diabetic online community), introduced to different hashtags and tweet chats to help connect with others. Feeling like a member of an elite group; I even added ‘type 1 diabetic’ into my own Twitter profile!

After feeing inspired, I wanted to get it all off my chest. I put forward the idea of writing an article on diabetes, to my boss. As the lone diabetic at our company, Voucher Codes Pro, I’ve been at the butt of every sugar-based joke. It was time to clear a few things up about my condition and roll out some banter of my own...

The result?
One of the best pieces of content I had ever written. By injecting my own sense of humour, experiences and thoughts on diabetes, I had created a mammoth blog-type post on the dreaded D. I wanted to highlight how brilliant the DOC is and help educate those who may be newly diagnosed or completely clueless. By the time I had finished, it felt like a huge weight had been lifted from my shoulders. I was interacting with people who understood what I’d been going through the last 10 years, making them laugh while doing so.

The online community is fantastic. If you can take anything away from this, just give it a go and embrace your diabetes rather than seeing it as a curse (or an annoying younger sibling who you’re forced to take everywhere). I personally feel like a better person since having to take more responsibility for my well-being and I plan on continuing to improve myself well into the future.

We’re all in this together.

See Joe's website here

Tweet Joe @VCP_Joe

Listening to a Diabetes Diet – Food for Thought?

Radio 4’s ‘Food Programme’ focused yesterday on diabetes and food. A very welcome focus, stimulated in part, says the blurb, by the large number of people diagnosed with diabetes, contacting Diabetes UK to ask ‘what can I eat?’

The programme brought together an impressive line up of experts to discuss the answer to this question, including representatives from Diabetes UK, a media doctor whose own son has Type 1 diabetes, a specialist dietitian and a radio presenter with longstanding Type 1 diabetes. Together they were able to explain what diabetes is, how common is Type 2 diabetes and gave some good messages about what a healthy ‘diet’ consists of, including ways that less healthy options can be improved (with, generally, extra vegetables added). Particularly welcome was the news that Boots and Thorntons are phasing out their ‘diabetic’ food ranges and the emphasis by Diabetes UK on trying to get away from the idea of ‘a diabetic diet’

Although the focus was on food, as ever from an SD point of view, the most interesting aspects were the personal stories alluded to by those there to discuss actually living with diabetes. The media doctor described the challenges of helping a young child learn to live with daily injections and how even as a doctor, the emotional burden was the same as any parent would experience. He sounded clearly very proud of his now grown up son, (who has in turn become a GP) and relieved that he is living a very healthy life, something that will have resonated loudly with many parents of young children, and perhaps given them some consolation

JP, the radio presenter with Type 1 diabetes, described a huge family history of diabetes, much of it also Type 1. Even so, upon his own diagnosis, it had come as something of a shock to him what a juggling act it really was to live with this condition. He wasn’t so keen on eating out, he said, because historically it hadn’t been so easy to match his insulin timings to the food arriving. Even though times had changed, he still tended to follow what he’d been taught at the beginning, for example, eating as little sugar as possible

An item towards the start of the programme focused on someone newly diagnosed with Type 2 diabetes who in a relatively short interview, was able to reveal a range of concerns about having diabetes. This included finding unexpected amounts of sugar ‘lurking’ everywhere, for example, in tonic water, but more poignantly, the worries about passing on poor health to her sons and not wishing to ‘be a burden’ if she developed complications.

None of the personal aspects and emotional effects of living with diabetes were meant to be part of this programme, but they ‘leaked out’ anyway. Perhaps this is because food itself is an emotional issue for many people or perhaps, whatever the official topic under discussion, these are the aspects that matter most, as living with diabetes is so intricately bound within family and social relationships and our very identity. A programme putting this centre-stage would be a recipe for a very tasty listen.

BBC Radio 4: The Food Programme. 26.4.15

A suitable image for diabetes?

The news today carries an item about imagery for mental illness, with the organisation ‘Time to Change’ advocating a new way to portray those experiencing mental health issues, distress and despair. They suggest more neutral, supportive pictures, rather than the traditional ‘head in hands’ approach.

Being in total support of this, it made us think of the imagery that is used for portraying diabetes. Back in 2008, when Successful Diabetes was launched, we searched for a logo to show what our company aimed to achieve. You can see the finished article on our blog here, and also on our website. We’ve (thankfully) had many compliments over the years, especially in the vein of ‘it is so different to show diabetes as success story, it’s so often one of failure’.

But the logo wasn’t like this to start with. When we gave our name and ideas to the people designing the logo, the first suggestions focused on diabetes, complete with syringes, needles, finger pricks, plasters and doctors with stethoscopes round their necks. The ‘successful’ part of our name was pretty much ignored. After we gently pointed out that we didn’t want to focus on the medical, each new draft gradually featured such images less and less until, finally, there were none – which is just the way we like it!

Reflecting on this experience, it seems to show how ‘hardwired’ the images representing diabetes, seemed to be then. In turn, this made us wonder what images are tending being used to ‘show diabetes’ today. So, we had a (very unscientific) ‘straw poll’ of a few websites, and here is what we found:

Rather pleasingly, it looks like things have changed: even on the most ‘diabetes’ of websites (mentioning no names of course!), the images of people, whether living with diabetes or health professionals are really positive and realistic, with not a stethoscope in sight! Families are shown doing everyday activities, to represent coping with diabetes in the mix, happy groups of people on holidays seem to show that it is possible to enjoy life as well as having diabetes. There’s even a picture of people smiling, under the heading ‘hypos and how to cope with them’!!

A couple of aspects were noticeable, however. It seems that where research is discussed, there’s a universal tendency towards pictures of test tubes and white coated scientists with goggles on. Perhaps this stereotype hasn’t quite been attended to yet? and images of food, either under the banner of healthy or unhealthy, quite often feature a large burger and fries! This seems to be an extremely enduring, and all-purpose, image – we wondered if continuing to use it does more harm than good, but that is probably a blog for another day!

One website does deserve a mention because it seemed to use imagery consistently neutrally and successfully throughout. The International Diabetes Federation has a series of outline figures in different poses which give some really clear messages without any assumptions, and also showing that imagery can be made understandable in whichever language the website is accessed in.

What’s your image of diabetes? do you prefer the medical or the personal? The detailed or the vague? Do put us in the picture below!

Reference

Hawkins, K. Mental health and the death of the ‘headclutcher’ picture. ‘Ouch’ blog, 13.4.15

Is coming 4th out of 10 good enough for diabetes?

Late last week, NHS England published its business plan for 2015/16. It includes 10 priorities, of which ‘tackling obesity and preventing diabetes’ comes 4th, after improving, upgrading and transforming care for, respectively, cancer treatment, mental health & dementia and learning disabilities. It’s ahead, in the list of priorities, of urgent and emergency care, primary care, elective care, specialized care, whole systems care and foundations for improvement.

Of course, the list isn’t really about priorities of decreasing importance, all of these issues are of equal importance and will, we hope, receive equal attention, not to mention equal share of the some £2bn budget. Having a list of 10 makes it easier for people, including presumably NHS England staff and politicians themselves, to read and remember. It’s unarguable that all these issues need to be acted upon and also that system change is badly needed to address the early 21st century health ‘state of the art’. On that note, the business plan is to be welcomed and being 4th doesn’t mean losing out.

The targets for ‘tackling obesity and preventing diabetes', focuses on Type 2 diabetes (a detail unfortunately left out of the title) are ambitious for a year’s work. By March 2016, a prevention programme will be ‘available’ for 10,000 people at risk of Type 2 diabetes. NHS England will be working with Diabetes UK and Public Health England to develop the programme and roll it out, partly via the NHS Health Checks system. The plans are to ‘enroll’ people identified onto a lifestyle management programme to address their ‘smoking, alcohol intake, nutrition and physical activity’. The latter also applies to plans in priority 4 to also encourage these factors to be addressed by NHS staff themselves. It’s not clear if the latter will be among the 10,000 initial 'enrollees' or if there is to be a separate programme for healthcare staff.

While the forthcoming programme sounds admirable, we have a concern, based on the old saying ‘you can take a horse to water, but you cannot make it drink’. That is, it is one thing to ‘refer’ or ‘enroll’ people onto a lifestyle programme, but quite another to ensure attendance or participation. These the only things that are likely to make a difference to the health of the 10,000 souls to be identified. So, in the spirit of ‘4s’, we hope that the prevention programme in development includes this ‘top 4’ of evidence-based, vital components for success in encouraging lifestyle change:

1. ‘Invite’, ‘encourage’ or ‘welcome’ people to take part, rather than ‘refer', ‘enroll’, ‘send’ or any other paternalistic term that removes any suggestion of free choice
2. Focus on success and the future in interactive and participatory, enjoyable activities
3. Scrutinise the programme for, and remove any evidence of, judgement, tellings off, compliance-orientation, school or classroom-like environments
4. Prize autonomy, choice and personal decision-making

As we have said before, we wish this programme well and sincerely hope that this time next year, despite the election and our reservations, our blog will be trumpeting the success and ongoing delivery of type 2 diabetes prevention.

Reference
NHS England Business Plan

Happiness is…..an ‘Emotional HBA1C’?

By Rosie Walker of Successful Diabetes and Jen Nash of Positive Diabetes

Last Friday was International Happiness Day, a very enjoyable-sounding occasion when the world’s happiness quotient is focused on. People were asked on TV stations, radio and around the world ‘what makes you happy ?’ and contributed such aspects of their lives as children, long walks, sunsets and chocolate cake! One report on the BBC showed a café offering massage and laughter therapy to promote happiness!

All that may sound a bit trivial, obvious even, but there is a serious message behind the day, which is that more and more people, and younger people, report feeling lonely. Loneliness leads to isolation, low self esteem, a lack of self-worth and even feelings of not wanting to live anymore. It can also lead to physical ill health, which can all add up to a vicious circle of misery. Knowing this, the simple ways of trying to help make people happier, look much more important.

Happiness is also a factor in the ‘Emotional HBA1C’ – that’s HbA1c, but with the letters creating different meaning from the traditional. Recently, at Diabetes UK’s annual conference, we presented this emotional version, one where instead of being short for the medical terms ‘Haemoglobin’ and ‘A1c’, the letters stood for psychological factors which can also contribute to this all-important result, upon which so many decisions in diabetes care are made. However, these factors are often ignored in diabetes care services. We believe that being more aware of them can help people with diabetes and health professionals alike: Here’s what our HBA1C letters stood for, and why: .

Happiness: Being happier and relaxed – or, put another way, less stressed and distressed - can reduce blood glucose levels.
Balance: Looking after diabetes enough, in the face of all the pressures of ‘real life’, contributes to keeping a health balance which in turn influences blood glucose.
Attachment: Negative family experiences in early life can sometimes make it difficult later to look after diabetes and form relationships, including with health professionals. This might lead to less attention on diabetes care and, in turn, HbA1c.
1st things first: Being able to prioritise diabetes care, when it needs attention is likely to lead to better health. Diabetes can be thought of as a baby who demands the caregivers’ full attention, even when they are busy with something else. Working out how to look after the ‘diabetes baby’, however disliked, can positively affect the HbA1c result.
Curiosity: for the person to be curious about their own diabetes and identify the factors and strategies which work for them personally and they can cope with, makes a big difference to the end result of HbA1c.

For health professionals, these ‘emotional HBA1C’ factors give clues to how to create an environment in a consultation, meeting or education session, that pays attention and actively discusses how the person is coping emotionally as well as discussing the medical aspects. An example of a ‘health professional emotional HBA1C’ might look like this:

Help people to define their main issue of concern.
Be accepting of the person’s point of view.
Acknowledge feelings as well as practical content.
1 main idea or insight to take away from the encounter .
Concentrate on person’s agenda.

Our workshop was very well received and attended and we’ve created a full summary, including the participants’ reflections at the end and the slides we used to explain the ‘Emotional HBA1C’ in more detail and the evidence for it. We invited people to create their own ‘Emotional HBA1C’ of the aspects of diabetes they felt influenced the medical HbA1c, and use it in their life and work with diabetes. .

We invite you to download the workshop summary and we hope this new way of looking at HbA1c inspires you. If you decide to create your own ‘Emotional HBA1C’, perhaps you’d share it with us, here?

Wishing you happiness, today and for the future!

Positive Diabetes
Successful Diabetes

APPG for DSME - OK?!

Well done the All Party Parliamentary Group (APPG) for Diabetes! They have produced a report detailing the parlous situation and implications for people with diabetes of the gross lack of education provided to people when they are diagnosed, and beyond.

The report is concisely written and focuses on recent evidence about barriers to access to education, including the lack of provision of courses in general, and a ‘one size fits all’ approach to provision, in particular. It highlights the gap between services being rewarded for referrals to education through the Quality and Outcomes Framework, a system through which GPs are paid for their activities, and attendance by people at the courses. They conclude that this is often because people are not involved or engaged in the need for them to attend. .

The group gathered evidence from an admirable number of people living with diabetes themselves as well as clinicians, academics and diabetes organisations. This is to be congratulated and will probably give the report even greater credibility as well as those people being sure their voice has been heard. .

It’s a welcome addition, but only an addition, to the body of evidence that provision of opportunities for learning about diabetes are woefully inadequate and that diabetes services and commissioners alike seem to see training and education in the lifelong occupation of caring for diabetes by the person with it themselves, as a bolt-on ‘extra’ to clinical care. It makes recommendations, which are sound, but only an echo of what has already been said. .

The real question is ‘what difference will this report make?’ There are opportunities for clinical commissioning groups to provide courses in sufficient numbers and variety to meet their populations’ needs, but only if they also invest in a system which enables people to be told about them and be encouraged to attend. One of the main barriers to this cited in the report, is the attitude of referrers, who often have no knowledge or experience themselves of what education courses provide, nor their long term benefits. Hence, for many of them, a referral is a ‘take it or leave it’ affair and, in truth, a paper exercise. This must change if attendance at courses is to change and make it worthwhile for all those courses to be provided. .

Like most publications, the report is already in danger of being out of date, despite only being released a day or two ago. Updates to National Institute for Health and Clinical Excellence (NICE) guidance to the NHS for Type 1 diabetes, which are currently in consultation stage, propose to replace one of the documents to which the report refers. This is Technology Appraisal (TA) 60, which details what education programmes should be available. TA 60 was replaced for Type 2 diabetes in the last round of NICE guidance updates. Fortunately the new proposed guidelines for Type 1 diabetes, incorporate much of TA 60’s contents and also place provision of education as a priority for implementation. If adopted, these new updated recommendations should at least help to improve the picture, particularly if their implementation is closely monitored. We will have to ‘watch that space’, but for now at least a tiny further step has been taken to rectify this dire situation. .


Reference
All Party Parliamentary Group for Diabetes (2015). Taking Control: Supporting people to self-manage their diabetes. London. Diabetes UK (Sectariat) .