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

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

Tops in 2012!

At the start of a new year, it’s traditional to look back on the highs and lows of the last one. In our case, we don’t really do ‘lows’ but prefer to concentrate on successes, as this has a much better track record when it comes to positive mental health. But enough of our philosophy, (which is covered in detail on our website if you’d like to know more) and here we go with some of the highlights from the last year, many of which we covered in this blog.

They get our votes because they really focussed on the people side of health and wellbeing and are consistent with all that we promote here at SD

So imagine a drum roll and let’s hear it for the following!

• The Health Foundation – released a series of practical reports and reviews in relation to making a reality of person centred consultations, helping people make decisions, collaborative healthcare and supporting self care. Absolutely vital stuff to help the new, personalised NHS achieve its objectives

• Diabetes UK – kept up a relentless focus on the basic checks people with diabetes need to have, from blood pressure to foot examinations – and reminded the world at every opportunity how these were not universally offered or taken up, despite them being ‘must do’s

• The Irish Health Service – made rolling out pump therapy for the under 5s a priority in its health budget for 2013

• The National Diabetes Audit for England and Wales for including statistics about the poor offering and uptake of diabetes structured education and giving campaigners the opportunity to wave these statistics and press for change

• Diabetes Australia – for publishing a wonderful document about awareness of language in relation to diabetes. Just creeping in from December 2011, but we’re guessing it was 2012 before anyone read it and it remains one of our favourites!

• Last but not least – anyone living or working with diabetes who has reflected on their approach, made changes or generally tried to make their diabetes or the environment in which they work a better experience during the year. As we never tire of quoting, from a dear friend with diabetes “diabetes is a marathon not a sprint; I need help to stay in the race”. Every bit of help along the way matters equally every year.

Hoping to see much more great work like this in 2013 and wishing all our readers a very happy and healthy – and Successful - new year!

Reference
www.successfuldiabetes.com

Checklists - the way forward for diabetes care?

A new checklist for people with diabetes to monitor whether they are receiving the essential care they require has been launched by Diabetes UK as part of its ‘Diabetes Watch’ campaign.  Diabetes Watch aims to hold health services to account for the care they provide for people with diabetes.

It’s an admirable aim and one that Diabetes UK will pursue with its usual vigour and clarity. The idea of ensuring that people receive standard aspects of care that has been shown to make a difference, and raising their awareness of what they should receive would seem to be a logical step. It also made us think about how having a checklist sits alongside the personalised approach to health that is, happily, currently being recommended.

A closer look at the 15 measure checklist shows that it focuses most on the medical aspects of care, for example having measurements such as blood glucose, blood pressure and blood fat levels, weight, feet and eye checks. It also defines where specialist care is required, such as for children and young people and those who are pregnant.

These aspects are really important in diabetes care, and emphasis on them has driven up standards in recent years, so it is absolutely right for them to be included in the list. However, they all also imply a certain passivity – that someone else will weigh, measure, take your blood and deliver your baby, for example. There is rather less on the list about active involvement by the person in their own care, an approach known to to help people live successfully day to day with their condition. ‘Receiving care planning to give you an equal say about your individual needs’, ‘attending education courses to learn how to manage your diabetes yourself’, and ‘getting psychological and emotional support’ are all included in the list, and are important. But there is a massive amount of other evidence about the effects of people being more involved in consultations, and in decision making about their own needs. This leads to a greater satisfaction with consultations as well as effective self-management of the condition. Like some medical evidence about what works, this knowledge is not always translated into practice in consultations and so perhaps should also be included in a checklist for monitoring a service for diabetes?

So, we’ve come up with our own ‘supporting self care’ checklist – some ideas for aspects that could be used to measure the ‘way’ care is provided, to complement the ‘what’ of the items in the Diabetes UK checklist. Here are the ideas we had:

SD ‘Supporting Self Care’ Checklist

• You are given the chance to receive your test and investigation results in advance of the consultation where you discuss them
• You are invited in advance to think about what you most want to discuss in your consultation
• In the consultation, you are asked what you want to achieve in relation to your health
• You get the chance to ask questions at the beginning of, and throughout, your consultation
• You are able to change your appointment easily if you are unable to attend
• You are asked if you would like a reminder to attend your appointment and the most convenient way to receive this
• Your thoughts and ideas about your treatment options are listened to and discussed
• You are asked about how you feel - emotionally as well as physically
• You are offered relevant information about what is available to help you, in a format that is useful to you
• At the end of a consultation you are clear about what you are going to do and what your health professional is going to do and when you will next be in touch with each other
• You are able to get in touch with your health professional easily and quickly between appointments

Let us know what you think of checklists in general – and what would you add to either of these checklists, from your experience?