Wednesday, 28 June 2017

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

Thursday, 22 June 2017

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

Wednesday, 31 August 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

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

Tuesday, 26 January 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

Monday, 4 January 2016

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!

Tuesday, 10 November 2015

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