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

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

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

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

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

Information Prescriptions for Diabetes - Backward or Forward Step?

At first glance, the information prescriptions for diabetes, launched this week, seem like a great idea. Take someone who attends their GP with blood glucose/cholesterol/blood pressure levels that don’t match the recommended targets and give them a takeaway - a bright, shiny A4 sheet describing how they can do better. Simple! And very quick, the all-important consideration for many hard pressed primary care professionals.

So that’s that problem solved, then.

The trouble is, as many of us know only too well, that a fix like this is highly unlikely to make much of a difference to the underlying reasons why someone might have these high levels – whether it’s because of the stresses of coping with difficult family or work circumstances (supporting your sister who’s ill with cancer, or looking after your grandchildren 3 days a week so your son can make ends meet with 3 jobs) or by actual choice (the schoolteacher of a class of 5 year olds who needs to make sure he doesn’t have a hypo during lessons).

We also know that ‘one size doesn’t fit all’. For some, the written word is easy and a pleasure, for others, torture and incomprehensible. And in any case, with all the other bits of paper that often accompany a medical appointment, will it see the light of day again from the pocket or bag it’s been placed in, once the person exits the building?

For many, information prescriptions will be offered after discussion and in response to specific questions that might be raised, and that is of course, the intention. However, for equally many others, they may be seen as a convenient way of ‘solving’ a clinical problem and ticking a box that flashes up on the computer screen – ‘this person needs an information prescription. Tick here when completed’. We hear that information prescriptions have been well received by people with diabetes and health professionals in the areas where the scheme was piloted. This is welcome news, but as is well-known, finding people to approve a development in a research situation and in ‘real life’, are not the same thing.

The medical model is one where people are told what to do by health professionals and expected to do it. This works really well for acute conditions, where there is relief in sight in quite a short time and / or the immediate consequences may be dire if instructions are not followed. For example, taking antibiotics for a severe infection that might otherwise result in hospital care being needed. To use a diabetes example, taking increased amounts of insulin with very high blood glucose levels during illness, to avoid life-threatening ketoacidosis in Type 1 diabetes.

The medical model is no good at all for helping someone live with a long term condition like diabetes, that depends mostly on self management, day in, day out. People with it need to make multiple daily decisions, choices and act accordingly, without a doctor or nurse’s say-so, or even in sight. The skills people need to make these decisions are usually not included in the ‘top down’ approach the medical model embraces.

Information prescriptions smack far too much of the medical model. What happens if people still have less than desirable (from the health professionals’ point of view) numbers next time, post-information prescription? Will they simply be issued with another, and another until they finally ‘obey’? or will they be cast out of the door, not to return until they have sorted themselves out to the satisfaction of the health professionals? Equally, what about those who would like the information contained in the prescriptions, but are ‘well controlled’? do they miss out on having their questions answered because they are not deemed ‘bad enough’ to qualify for an information prescription?

A way forward is not to medicalise even further, the encounter between someone living with diabetes and their health professional, when it comes to meeting the challenges of daily life. Rather, it’s to personalise things more. A really quick start to this, using the information prescription model, might be to have a message flashing up on the health professionals’ computer screen that incites them to congratulate a person who has achieved the recommended targets and discuss their success and how they might maintain it.

Thankfully, there is a model, which is gradually achieving recognition and implementation support in NHS circles. It’s known as personalised care planning, or PCP, which we’ve talked about and promoted on many occasions, as a system-wide solution to appreciating that people themselves are in charge of their condition and the choices they make each day are the only ones that will make a difference to the resulting ‘numbers’.

The job of the health professional in PCP is not to pontificate, order, tell, force or even cajole the person into submission to their will, but to share their ‘numbers’ with them and invite them to identify their own problem areas, goals and ways they wish to address them. Only through this process can they get anywhere close to addressing what, on the surface may look like a ‘non compliant diabetic’.

Information is everywhere and people can choose what works for them best. What’s needed is not a prescription, but a menu and support to explore it, and continued discussions of what’s worked in subsequent consultations. Fortunately, the idea of a local ‘menu’ is included in personalised care planning guidance recently published by NHS England, and is already being used in some areas. In the meantime, our own ‘SD Signposts’ is available for anyone to download and start to use, according, if they wish, to their personal learning style.

Health professionals may find more benefit from moving from information ‘prescribing’ to people with diabetes, to information ‘sharing’, which will be much more effective, not only for reducing the clinical ‘numbers’, but also frustration and time spent ‘telling’ – that’s our prescription for guaranteed satisfaction!

The Blueprint to Weight Loss?

In our first guest blog, clinical psychologist and specialist in emotional eating, Dr Jen Nash gives us plenty of ‘food for thought’!

We are in the midst of an overweight and obesity epidemic and whilst current health education messages are doing well to raise our awareness of the need to ‘eat less and move more’, we know for every person who can implement this advice, there are many more who struggle. This leads to a sense of failure and increased hopelessness, for both the individual who is overweight, and the healthcare professionals involved in their care, who quickly reach the limits of their perceived ability to help them.

Traditional medical and diet advice seems to treat weight loss as if it is a logical, rational process – for example, there is often an assumption that education alone leads to behaviour change. But knowledge doesn’t always lead to desired change, does it? How do we know this? Partly because many NHS health care professionals themselves struggle as much as those who they help – if not with their weight, then perhaps with their choices around alcohol, exercise, nicotine and other health decisions.

If we are increasingly aware of what we ‘should’ be doing to care for our health, what gets in the way of being able to implement these recommendations? Oftentimes we will sigh, “I’m just not motivated”.

I’d like to suggest that you ARE motivated! You don’t usually have to ‘motivate’ yourself to get dressed in the morning, or clean your teeth, or kiss your child goodbye, or turn up for work. You probably don’t talk about ‘getting motivated’ to do these tasks of life. Why? Because these activities are in line with your identity, your self-esteem and your values. You value your child feeling loved as they go to school, so you organise yourself to wave her off in the morning. You value not breathing your garlic breath from last night’s dinner on your colleagues, so you organise yourself to make time to brush your teeth in the morning!

So we are all motivated to do EXACTLY the right thing for us, given not just one, but two aspects of our experience:
1. Our knowledge + information
2. Our emotions + values

Medical and health educational models are great at the first part – imparting knowledge and information - but where in our health care settings are we talking about emotions and values?

These conversations are largely absent when it comes to discussing diet and weight loss, yet it is our emotions and values that are the bridge between ‘knowing something’ and ‘doing it’. These are the guide to all our decisions in life; including our decisions about our health and what to eat. Psychological models address emotions, but access to a clinical psychologist for people with obesity, whilst recommended by national guidelines, is extremely limited in current services.

‘The EatingBlueprint’ is a novel way for non-psychologists to start addressing the psychology of weight loss, without the jargon and potential stigma of some of the traditional psychological approaches. It is based on a blend of evidence-based psychological therapies (including solution-focussed, dialectical, compassionate, mindfulness, cognitive-behavioural and attachment approaches, for those who are interested in the detail!).

The logic of the blueprint is that trying to simply follow a diet to create the body/weight you want, without looking at the emotional ‘mindset’ about eating, is like trying to build a house before laying the foundations.. Strong foundations are needed to build a house – and a blueprint is needed as a guide. The EatingBlueprint is designed to support the development of the emotional mindset foundations necessary for both weight loss success and maintenance. To continue the analogy, the blueprint for the house’s foundations contains rooms, and in the EatingBlueprint, these ‘rooms’ are:

1. Forgiveness
2. Focus
3. Fun
4. Feelings
5. Foresight
6. Fables
7. Framework
8. Future
Let me talk you through the ‘rooms’

1. Forgiveness
The blueprint begins by normalising the idea that it is difficult to lose and maintain a healthy weight. We are fighting a biological, psychological and environmental/social world that is set up to promote weight gain, and the person is not “wrong” or “bad” for being overweight. This step is designed to provide relief from shame and stigma and set the scene for an approach that isn’t about success or failure, rather one that involves self-discovery.

2. Focus
This area aims to encourage the noticing and overcoming of “mindless” eating. While it is usual to eat mindlessly for non-hunger reasons occasionally, we can be helped by the use of strategies to interrupt frequent mindless eating. This can be encouraged using a simple question: “WHY am I eating?” or, simply, “WHY?” WHY is an acronym that stands for:

• Wait
Remembering to pause before eating is challenging – so, in the short term, the person is invited to use a reminder on their dominant hand or wrist (e.g. a charity band - members of the EatingBlueprint receive a subtle wrist band as a reminder). This is just a short-term strategy until the automatic nature of eating becomes interrupted.
• Hungry?
This invites the person to ask themselves, “Am I really hungry? How physically hungry am I, on a scale of 0–10? If I’m not hungry, what AM I hungry for?” (e.g. for a break, as a reward, for a distraction, to cheer myself up or to bond with someone).
• Yes
This relates to saying ‘yes’ to the food or ‘yes’ to whatever the person is truly hungry for. If the person is physically hungry, this involves saying “Yes” to food and eating. If the person is not truly hungry and still eats, that’s okay too. Change takes time and the act of simply pausing brings an awareness to what was an unconscious process.

The power in this area is to help the person to discover what they are truly “hungry” for and ask themselves whether they can get their hunger met by something other than food. In time, they can begin to say ‘yes’ to this identified need, instead of the food.

The areas of the blueprint that follow are designed to help increase the flexibility to choose between a range of responses to food.

3. Fun
Eating is pleasurable and entertaining and it can become “a friend”. The person may need help to look for ways to increase non-food sources of pleasure and entertainment when there is an urge to eat for non-hunger reasons.

4. Feelings
It is common to use food to “stuff down” emotions that are not easy to express. It is a skill to be able to express emotions authentically to both ourselves and others and we often need strategies to express emotions rather than to dull them with food. The EatingBlueprint provides a template for identifying and expressing feelings in ways other than through food.

5. Fables
These are the family stories and rules about food, spoken and unspoken. Phrases like “eat your vegetables before having dessert” and post-rationing sayings such as “don’t waste food” and “finish everything on your plate” have value, but we need to question the modern day utility of these ideas and create more helpful narratives that serve us.

6. Foresight
To continue to maintain a healthy we need to know ourelves, learn from previous life experiences and manage their thinking styles relating to food. This step encourages the person to plan ahead and learn from the “predictability of life” (e.g. Christmas and meals out) and think about how to use this self-knowledge to experiment with new behaviours. It also invites the person to challenge the “good/bad” rules of diets using cognitive behavioural therapy techniques.

7. Framework
Weight loss isn’t a solo journey. The impact of family influence, the physical environment and handling social events are all crucial. The person needs assertiveness skills to be able to say “no” to the “feeders” in their lives, and to spot the signs of sabotage, often by well-meaning but threatened loved ones. The blueprint aims to provide these skills.

8. Future
Weight loss is a skill, yet we don’t treat it as being in this paradigm. Like learning to drive a car, it is a process that requires coaching and facilitation, and “mistakes” and “slipups” are an integral part of the journey that need to be welcomed. The blueprint teaches how to “update the default” and stay solution-focused on the weight loss journey.

The Psychology of Weight Loss in the NHS
None of the areas of the EatingBluprint are 'rocket science', so why aren’t we systematically addressing them? Arguably, because obesity is treated within a medical model, and considered a medical/educational problem, not an emotional or psychologically related one. NHS Clinical Psychologists and therapists are generally limited to offering structured cognitive behavioural therapy (CBT), in an individual or small group format, as recommended by UK national guidelines, so these ideas aren’t particularly available to staff to utilise.

Do people struggling with obesity need to work with a Clinical Psychologist? Controversially, I say perhaps yes, because there is quite a body of evidence that suggests many who routinely use food for emotional regulation have a history of psychological issues. The incidence of trauma, childhood abuse, sexual abuse, low self-esteem and depression is high among people who are obese and in those presenting for weight loss surgery. Despite this, access to psychological services for obese people has been limited to screening for psychiatric disorders in preparation for bariatric surgery.

Whilst certainly surgery is an option for some, if we view obesity as (in part) a problem with emotions, then bariatric surgery is attempting to put a plaster on a very deep emotional wound. This may go some way to explain why this type of surgery is less successful than expected. Achieving and maintaining a healthy weight requires skills of emotional regulation and the ability to tolerate distress - in other words it takes a highly developed person. We need to widen the scope of clinical psychology and other health professionals working in the field of obesity, to empower people with:
• skills to be able to identify their emotions
• strategies to make a choice other than food

So the person is in control, not the food

Interested in finding out more about the EatingBlueprint?

The EatingBluerint is a 12-week online weight loss support programme, that empowers members to master their inner relationship with eating, through bitesize videos (10-30 mins each) with accompanying ‘experiments’ to implement new weight loss skills in daily life. If you’re someone struggling to lose weight, or a health care professional interested in using the EatingBlueprint method in your routine consultations, you can get your Free E-Course – ‘Why the F*** Are We So Fat?!’ by visiting the PsychBody website

Training workshops in the EatingBluperint Method can be organised by contacting Dr Jen Nash, Clinical Psychologist directly at hello@psychbody.com or via enquiries@successfuldiabetes.com

What do you think of Dr Jen’s ideas? Share your response and insights here and let’s discuss this important issue and this unique way of looking at it

Is this the best use of £140 million?

Up and down the country of England, GP practices have been scrambling towards a deadline of today and are completely distracted by it.

This is the date by which many practices have to compile a register of a minimum of 2% of adults on their books who are at risk of an unplanned hospital admission by virtue of their previous history of emergency admissions, long term condition, age or frailty. The practices concerned are those who have signed up to a particular ‘enhanced service’ or ES – basically extra payments for particular activities, offered by NHS England, the body in control of delivering health policy in England.

The idea of the register is to identify and put in place a care plan, agreed with the person and any other relevant people involved in their care, for example, family carers or professionals such a social workers or mental health workers. The care plan aims to identify and share with everyone concerned, how a potential emergency admission to hospital could be avoided and then activate it when necessary.

For the register and associated actions specified in the ES, practices will be paid around £3 per head of their practice population, resulting in a typical total payment of around £20,000. This money is much needed, say the GPs who have signed up to the ES (it is not obligatory), whatever they need to do to receive it. And there are a lot of activities associated with receiving payment for this ES. If you want to read more, all the details are in the published specification. The total funding for this ES across England is £140 million. It was announced in the Spring and was initially to last for one year. However, it has been announced today that it will continue for a further year.

You may be wondering why we are discussing such an initiative, which might not at first glance have anything to do with SD’s speciality – helping people live and work with diabetes successfully. However, there is a link and it is the following:

The majority of people with diabetes and other long term conditions are not among the 2% of adults in a practice covered by this ES. They can easily take steps now to avoid becoming vulnerable to unplanned admissions in later years, as long as they are given the ‘tools to do the job’.

These tools are: knowledge and confidence to take appropriate actions, along with the opportunity to constantly participate and collaborate in decisions about their condition. Many of these skills are developed and reinforced in structured education programmes for diabetes – for example X-PERT, DESMOND and The Diabetes Manual Programme for Type 2 diabetes and BERTIE and DAFNE for Type 1 diabetes, to mention just a few nationally available programmes. The same body who has announced the ES, NHS England, has recommended that everyone with diabetes receives an education programme to actively help them learn to live with it.

The problem is that these education programmes are not available to all people diagnosed with diabetes, and even where they are technically available, the numbers of people being offered, or taking up the offer of a place, are vanishingly small. We have covered this, at worst completely iniquitous, and at best rather ridiculous, situation in previous blog postings.

Successive annual reports have shown that less than 15% of people with diabetes overall, are either offered or take up a place. Even among the areas with the best uptake, the highest number of people being referred for or uptaking education is just under 60%.

We believe that whilst it remains to be seen whether the avoiding unplanned admissions ES discussed above will really make a difference to numbers of admissions, diabetes structured education has been shown over and over again to provide people with the confidence and skills to look after their own condition and take avoiding actions themselves, without recourse even to their health professionals. And yet the money can be found for the former, but not the latter.

So the question arises in our mind: ‘why is a sum such as £140 million not also being offered to General Practices to incentivise them to provide proper, formalised diabetes education?’ The programmes are there, they are not expensive (compared in particular to a single hospital admission), they have been shown to work, and yet they are not being used.

In our view, it’s time there was an Enhanced Service for Diabetes Education – or whatever title suits – that is, a system which specifically rewards GPs for providing diabetes education. While the present situation exists, millions of people are being failed every day by the NHS which has vowed to look after them as much as the 2% of people in each practice covered by the unplanned admissions ES.

Successful Diabetes completely supports the provision of Structured Diabetes education in the NHS for all people with diabetes as recommended. We will continue to call for it ourselves, as we have in previous posts here and in many other activities. We will also continue to support other organisations’ efforts, as well as encouraging people with diabetes to lobby their local health providers to invest in their future health by commissioning education programmes.

However, while we wait – and wait – for money to be put where guidelines are, we will soon be offering something practical in addition.

From November 14th this year (World Diabetes Day), we will be launching the Diabetes Manual Programme as ‘Diabetes Manual Complete’, a one to one, supported education programme, which is available directly to people with Type 2 diabetes who wish to purchase a programme for themselves (much as they might any other form of healthcare such as a private operation or GP consultation or prescription).

‘Diabetes Manual Complete’ fulfills all the current recommendations for a structured education programme in the NHS and is provided by diabetes and education specialists. More information about it is available now by request from SD, and will be published publicly from the launch date. People will be able to help themselves to quality, specialist education, with no referral, no waiting times and no extra appointments.

We are excited to spearhead this unique development in diabetes education, but sad that it is necessary. The Diabetes Manual Programme is available now for the NHS to commission for local people with Type 2 diabetes, and has been for many years. To date, not one local organisation has seen fit to comprehensively commission this cost-effective programme to people with Type 2 diabetes. As we have said, other programmes, such as group-based education, are also not purchased in enough quantities to meet the need.

By making ‘Diabetes Manual Complete’ available, we can help people to help themselves to the quality and expert education that they deserve and are entitled to, but are not likely to get anytime soon, partly because the NHS is ‘looking the other way’ with short- term measures like the unplanned admissions ES, and partly because commissioners and managers have not yet grasped the vital importance and long term impact of 100% coverage of diabetes structured education. As the saying goes ‘desperate situations require desperate measures’. This may be desperate but it will be effective, and in a good way, too.

References

NHS England Proactive Care Programme for Unplanned Admissions

Structured Education for People with Diabetes – A Box Waiting to be Ticked?

Contact us about Diabetes Manual Complete

Being Person-Centred – Are We Nearly There Yet?

Regular readers will know that Successful Diabetes is firmly founded on a person-centred philosophy, following the principles originally articulated by Carl Rogers and more recently described in diabetes care specifically, as empowerment, by Bob Anderson and Marti Funnell and their colleagues.

Our person-centred philosophy informs all SD’s activities, including the structure and format of our books and workshops. The central question in designing any of our activities is ‘how can this material be made meaningful to the individuals experiencing it?. Answering that question gives rise to the order and type of activities included for learners in a workshop, for example and to the language and style of the writing in our books. As described by Rogers himself, a person-centred approach is not something to be applied, but ‘a way of being’. In this way, work flowing from philosophy feels very natural and it also offers a ready made source of evaluation and quality assurance.

As previous SD blogs have mentioned, with such a philosophical background, it is extremely welcome to see the current emphasis on personalisation in UK health policy, with documents describing and exhorting the importance of prioritising a person’s own wishes and needs, and sharing decision making, especially for long term conditions. Evidence supports the positive impact of this on people’s health and health service use and also on cost and satisfaction with their experience of care.

The Health Foundation in particular has released a number of practical reports on the subject, including the recent review ‘Helping Measure Person-Centred Care’ which includes detailed descriptions of the measures and tools available, advice for undertaking measurements locally and several hundred references. The same organisation also recently launched a dedicated online person-centred care resource centre, which seeks to promote the approach throughout the health system.

Our own contribution to spreading the word about person-centred care is embodied, for example, in our recent ebook about person centred practice, in other books and in training for personalised care planning (PCP). The latter is a way of organising care for those with diabetes and other long term conditions to prioritise their thoughts, wishes and needs as much as those of the health professional. It contrasts with the traditional model of the health professional being the dominant force in the relationship, with their knowledge and opinion prized more than that of the person consulting with them.

The PCP approach has been born out of the changing world of health, with people no longer suffering predominantly with acute, ‘fixable’ or short term conditions, but increasingly living with incurable but long term conditions that require a multitude of their own daily decisions to be made, without the guidance of a health professional. Hence, care services must be geared towards promoting such decision-making skills for self-management.

Most recently, it was a privilege to be a co-presenter of a workshop about consultations at the Annual Professional Conference of Diabetes UK*. Our 5-strong team created an experience for the participants, which enabled them to reflect on their own struggles with consultations and consider them through the issues raised in short but ‘real life’ scenarios by the presenters. Much discussion and insight ensued, especially about the final scenario which focused on ‘why isn’t a person-centred way of consulting more prevalent in diabetes / long term conditions care, given all the encouraging documents and evidence as to its success?’

The opinions given in response included that there is a gap between the rhetoric and the hectic reality of everyday practice, that change among health professional practice takes time and that reflection on practice to plan and evaluate changes is not valued sufficiently. Most memorably, the comment that we are so busy trying to listen well, that we may forget to shout about the importance of our consultations and their style. It was also a conclusion that showing person-centred practice by example could be powerful.

While we may not be able to directly change others, we can indeed change ourselves and / or continue to be true to our principles and philosophy. In that spirit and to answer the question in the title, no, we are not yet at our destination, but the activities described in this blog and others, are one more contribution to continuing the journey.

References

Health Foundation Person Centred Care Website

Person Centred Practice: A Concise Guide to Success

Personalised Care Planning Workshops

*You can download the ‘take home messages’ of workshop participants from this page

Action on 'Action for Diabetes'?

It’s great news that a document full of vision for diabetes has been published at the start of the new year, a time brimming with motivation and good intention. ‘Action for Diabetes’ is NHS England’s manifesto for making inroads into the challenges and complexities of this massively important condition. What does it say and will it be effective? are the questions on everyone’s lips – or should be!

The document is an easy read, well-formatted and simply presented. It talks about the importance of diabetes in the modern world. Its huge and growing prevalence, its disastrous consequences and need for ongoing, lifelong, quality care. So much we know – that has all been said before. Often in these documents it’s just the numbers that change and usually upwards. So what is new (or at least new-ish?) A commitment to developing personalised care planning – with systems and processes and tools to document it all specified. That’s good, much needed. There’s a commitment to produce another service specification – for young people transitioning from children’s to adult services. Also good, also much needed, having foxed the life out of many practitioners over many years. Maybe this time? Mention is made also of enabling people with diabetes to access structured education within 9 months of diagnosis. Extremely good. Making this a quality indicator (ie must do) would really show commitment and it looks like this iteration of diabetes policy might, just might, do that.

Action on diabetes also tells us what’s recently been put in place to support action. A toolkit for clinical commissioning groups to ‘transform participation in health and care’. That is excellent. But for those with a condition like diabetes, participation isn’t just a ‘no-brainer’, it’s mandatory. They already participate by virtue of having the condition and it doesn’t go away, just because someone isn’t paying it any attention. So I’d say, remember that the idea of participation is more that health and care services also participate with people with diabetes, rather than just the other way round. For example, that their view comes first in a consultation, their personal priorities are respected and that they are treated holistically rather than 'an HbA1c on legs'. That isn’t mentioned and should be, perhaps?

There’s a model behind the vision – the model is of a house, whose walls and roof will not stand up unless all the elements are in place, including firm foundations of good commissioning. This house model has been used over recent years to illustrate the importance of all elements working together, for example in Year of Care work on diabetes. It’s great that an old model is being used in new ways, showing how national, local and individual priorities can be represented in it. And we can all relate to a house, so in this way it makes the words even more accessible.

Will the contents of the document come to pass? I hope so – action is a great word to use, and even greater when it jumps off the page into our clinics and services. NHS England, you’ve made a great start. Keep up the good work, we are watching…

Action for Diabetes
Transforming participation in Health and Care

'A Straight Talk' or 'A Straight Listen'?

A health professional at a recent workshop passionately exclaimed, ‘sometimes I have to give my patients a straight talk!’ By ‘straight talk’, the health professional meant telling the person exactly where they were going wrong with their diabetes management and what the consequences would be if they did not change their ways.

I do not doubt for a moment, the health professional’s motivation of concern for the health of those on the receiving end of the ‘straight talk’, nor the desire to help achieve the diabetes recommendations which are widely published and to which such health professionals, among others, are often held responsible.

Rather, what struck me about this encounter was the idea, in our evidence-based world, that such a strategy would work to improve the situation. In fact, evidence suggests exactly the opposite, that is that a telling off (for that is what was really meant by a ‘straight talk’ in this case – I knew it because the words were accompanied by a wagging finger) is likely to make people highly disinclined to make changes and distinctly unwilling to return to the clinic or a consultation with such a health professional.

What might be a more helpful and effective strategy is one I encourage any health professional in such a situation to consider, and that is a ‘straight listen’. This consists of asking a few interested open questions and actively listening to the answers, with the aim of experiencing the world through the eyes of the person with diabetes and to help address the challenges they face. ‘A straight listen’ has many advantages, among them:

It engages the person in talking honestly about their concerns about their diabetes and their thoughts and wishes about addressing them
It is more friendly and less stressful
It creates an equal contribution and participation in the consultation
It results in increased motivation to take action outside of the consultation
It takes less time and energy and gives much more satisfaction

Sometimes, listening is thought of as a ‘soft’ skill or ‘a bit touchy feely’ as described to me by another health professional recently. However, in survey after survey of people, especially those with long-term conditions, active listening and being non-judgemental are cited as missing, and strongly wished for from health providers. A recent example is a survey published in Diabetes Update. How can it be that something so apparently simple and so desired, is so comprehensively overlooked?

In my experience, there is no shortage of health professionals expressing a desire to be better communicators or listeners, but a common reason given for not investing in actually using these skills more, is a lack of time in consultations. This is interesting, since there is evidence that consultations can be shorter where there is more listening on the part of the health professional and this also brings increased satisfaction on the part of the person with diabetes. There must be something else. I find myself wondering if part of this ‘something else’ is that being a health professional is so intrinsically linked to being an ‘expert’ and an ‘advisor’, that ‘simply listening’ means to give up these roles with the perhaps consequent loss of status or even competence? Another reason may be that, among health professionals, the skills of listening are much less practised, hence less habitual, than those of talking or telling, and so their confidence in using them is less.

As I continue my musings as to the underlying causes are of the continuing need among health professionals to deliver a ‘straight talk’ against much good evidence of its ineffectiveness, I have a new offering to try and make ‘a straight listen’ more accessible and easier to learn and practice.

From today, SD’s latest download is ‘A Little Book of Listening’, a booklet with some inspiration, ideas and practical ways to use listening in consultations – and indeed in other areas of life, too. I hope that providing and spreading the word about this will go towards helping some poor souls avoid being on the receiving end of any more ‘straight talks’ next year!

Sincerely wishing you a listening 2014

Grant, P. (2013). What do Patients want from their Diabetologist?. Diabetes Update, Winter 2013

Successful Diabetes (2013). A Little Book of Listening

Could Walking be the Great Cure-All?

It’s wonderful to hear about all the medical and technological developments in diabetes care. Recently for example, there has been the prospect of a once a day injection for type 1 diabetes and continuous blood glucose monitoring systems being made more widely available. In healthcare generally, more and more scientific developments are reported daily, which is fantastic news.

However, it takes time and specialist expertise, not to mention money, for these experiments and research to become everyday realities and while we wait, we have to do something to look after ourselves. It struck me, reading through recent health reports, that one of the main ways we can do this is cheap, extremely close to home and doesn’t require any technology or expertise at all – yes, I’m talking about the humble walk. Well, I say ‘humble’, but looking at all the benefits, I’m not sure that all of us who use it regularly shouldn’t qualify for something at least like a Nobel Prize!

For example, walking can help prevent type 2 diabetes altogether. It’s recommended as one of the main interventions in guidance from the National Institute for Health and Care Excellence (NICE) for preventing type 2 diabetes, both in the general population and among those at high risk. 30 minutes of walking of moderate intensity on 5 or more days a week is the minimum recommendation.

Most people living or working with diabetes know, through book learning or, sadly, bitter experience, that ‘diabetes rarely comes to the party alone, it brings all its friends’ as one lady with diabetes memorably described the risk or presence of diabetes related conditions such as high blood pressure and high cholesterol. Research shows that these too can be helped by walking regularly.

An increased risk when you have diabetes or other long term conditions, and sometimes even a precurser to having diabetes, is depression. Yes, there is evidence too of walking being beneficial in treating depression and even preventing it. Its mood-enhancing properties are frequently mentioned in research. In addition, when used as a social activity, walking can also be a way to combat loneliness after retirement, divorce or in older age.

Bringing together some scientific research and the benefits of activity is a recent report about the discovery of how genes can make a person biologically programmed to eat more. This is because a high risk version of a gene called FTO prevents a hunger hormone called ghrelin from falling after eating. One answer to this is to suppress ghrelin and tried and tested methods include eating protein rich meals and cycling. If cycling can work, why not walking? My guess is that it is only a matter of time for walking to be added to this list of weight gain preventive treatments in this group of people. Given that they will also be at risk of type 2 diabetes, through its link with obesity, it’s yet an other potential tick in the box of ‘benefits of walking’.

There are of course many people who for one reason or another cannot walk or walk well enough to take up even minimum guidelines. But even for you, there is good news. Walking is highly recommended as a form of activity, as we have seen, but it’s not the only one. Anything that makes you move more is helpful to health, says NICE, and the more times you move, in whatever way, is even better. So armchair movement including just your upper or lower body makes a difference. Passive or active, movement works.

So, we have the technology, in our very bodies, here and now, in any weather and at no cost, to make ourselves healthier both physically and mentally. It’s not often we can say that. Given that we should all be doing more of it, as our contribution towards this, we’ve recently added our booklet ‘SD Tips for a Lively 2013’ to our website download section, you’ll find the link to it just below. Help yourself to a copy and see if all this evidence works for you!

SD Tips for a Lively 2013! Quick, Easy and Fun Ways to Move About More.

References

BBC News. Fat boosting gene mystery ‘solved’. 15 July 2013

BBC News. Guide shows Borders walk benefits 25 June 2013

BBC News. Why retiring can be bad for your health. 16 May 2013

BBC News. Walking could be a useful took in treating depression. 14 April 2012

NICE. Preventing Type 2 diabetes – population and community interventions. May 2011

'Doing Diabetes' - A Very Human Mission

One of the most interesting and lively discussions that often arise during personalised care planning workshops is about behaviour change and motivation. Health professionals often raise concerns about people with diabetes not meeting recommendations for their blood glucose or HbA1c levels, weight, exercise or taking medications as prescribed. They recognise it is hard for people to do these things but also express frustration that their efforts to advise and encourage seem to fall on deaf ears. As one health professional recently put it ‘they don’t seem to realise how important it is to look after themselves. I feel like I’m wasting my time’

Indeed they might be wasting their time and also that of the person with diabetes. For although the intention is excellent and the desire to help is paramount, there is a flaw in this way of thinking about helping people change. That is the underlying assumption that ‘they’ need to do something different because they have diabetes.

The reality is that, as we have mentioned before, having diabetes – or any other long term condition for that matter – does not make you automatically more motivated or successful in your efforts to make healthy changes than anyone else, or, crucially, to heed advice however well meant, from health professionals. Nor would health professionals be more successful at it, if they developed diabetes themselves tomorrow.

During such a discussion, I might ask health professionals how well they manage to adhere to ‘everyday’ health recommendations around taking exercise (150minutes/week), drinking alcohol (maximum 20 or 14 units/week for men and women respectively), calorie intake (3000/2000 a day for men and women) and eating oily fish (1 or more portions/week) Often, this produces a ripple of rueful laughter, as people realise that they don’t necessarily practice what they preach and this is nothing to do with having diabetes.

Further discussion reveals that the reasons they give for not being able to meet these recommendations – typically time for exercise, having a busy lifestyle, eating what’s available, family pressures around food preferences and not making themselves and their health a priority – are much the same as those with diabetes would give, with many more diabetes related activities to perform, for example blood testing, insulin dose adjustment, hypo prevention and foot checks, not to mention clinic appointments.

So what we establish is that motivation and behaviour change are influenced because of humanity, not the condition you live with. The key drivers are not what someone else advises you to do or recommends, but how important you think an action is, how many barriers to it are in your way, whether you believe your actions will result in benefits, whether you have confidence in your ability to take whatever action it is and also what past experience of success or failure you have had – to name but a few.

The consultation that simply gives information and advice is not going to be very helpful and might well be the waste of time and cauldron of frustration mentioned by that health professional earlier. Much more useful is one that explores the human side of behaviour – what makes you do something? What stops you? How important do you think it is to deal with your diabetes? How confident do you feel about doing what is recommended? These are all questions that could use the time much more effectively and even ones that someone could reflect on in advance.

Such an approach is truly a human collaboration and makes life much less frustrating for everyone ‘doing diabetes’ in their life or work. Thankfully it is an approach firmly ingrained in the new health policy rhetoric. The challenge now is to make it a reality.


Reference
Personalised Care Planning Workshops by Successful Diabetes

‘Difficult Patients’ – How to Manage

At a recent workshop for health professionals, a couple of the participants mentioned that some of their patients were ‘really difficult’. On exploring what they meant by this, they were frustrated by people who seemed not to contribute in consultations, or didn’t attend regularly, or when they did attend, they didn’t seem particularly interested in doing what they were asked to manage their diabetes. One also mentioned that such ‘difficult patients’ also often attended with their own agenda and questions that weren’t always relevant to the consultation.

This made me reflect on how often I hear this kind of point made and also on what a powerful, emotionally charged exclamation it is, to say that you have ‘difficult patients’. What is perhaps really being said is ‘I find it really hard to meet these peoples’ needs, so I am categorising them as difficult’.

I have heard of ‘difficult patients’ in all sorts of guises – someone with Type 2 diabetes who feels nothing the health professional suggests is worth trying, a teenager with Type 1 diabetes who sits surly and unresponsive throughout the consultation or what has been described by a fellow blogger Alison Finney as ‘a nightmare patient’ in her blog shoot up or put up , referring to someone who wants to know everything about everything and discuss the pros and cons of all advice given.

I venture the view that actually, there is no such thing as a ‘difficult patient’ but there are difficult encounters between people with diabetes and health professionals. These are characterised, in my view, by strong feelings on the part of each and yes, competing agendas, which are often only partly fulfilled.

It’s often about roles. Having diabetes certainly doesn’t make you keen to adopt or adopt unquestioningly, the behaviours recommended for keeping well. Neither does being a health professional make you all – knowing or even all-powerful. However, these are frequently the roles assigned, albeit unconsciously, in a typical consultation. Herein lies where agendas can clash.

There is also the question of expectations, if not judgements. Often, thoughts that precede the ‘difficult encounter’ will be “oh no, it’s the difficult/uncompliant/badly controlled/intense/obsessional person coming in next (health professional) or ‘I hate going to this consultation, I’m fed up of never getting anything right/not having my questions answered/not being able to get a word in edgeways/being told stuff I already know’ (person with diabetes). Hence the stage is set for a tricky, unfulfilling, and most sadly of all, ultimately pointless meeting.

I paint a dire picture, I know, but I’m guessing that it’s one you may recognise, at least in part, from your experiences of consultations. If you do recognise and would like to lessen the chances of being seen as or having a ‘difficult patient’, then I’d like to offer you a few ideas from research and experience – in no particular order of importance:

• Ask about feelings: sometimes anxiety manifests as anger and silence equals upset. Acknowledging that consultations are emotionally charged can remove a great deal of difficulty
• Plan for 1 thing – and 1 only – that you’d like to achieve from the consultation and share this with the other party, ideally before or at least at the start of the consultation
• Don’t expect your consultation to be 100% perfect or have 100% perfect outcomes. You are bound to be disappointed! Seeing this meeting as just one step on the journey of diabetes is fine
• Share your feelings – yes, both of you. Not in a ‘deep and meaningful’ way, but honestly: how about ‘I’m not sure we’re getting on so well: how can I best help you today?’ or ‘coming here always makes me feel a bit of a failure I’d like to talk about what I have been doing rather than what I’ve not done’
• Examine your motives for the consultation: are you expecting the health professional to solve or take over your diabetes? Do you want your patients to do what you tell them, unquestioningly? Either way, it’s unrealistic. Consider having a conversation about 1 thing that really matters to you both, instead
• Are you talking at cross purposes because you don’t both have the same facts at your fingertips, eg test results and their meaning? If so, would sharing test results in advance of the consultation help, so you can discuss them on equal footing?

It is certainly true that the more honesty and information sharing there is in consultations, the more worthwhile experience they seem to be. While writing this I’ve also been reminded of a comment made by a colleague, who once said ‘I see the HbA1c as an invitation to look at the person’s life with them’. Could this possibly be all that ‘difficult patient’ needs from their consultation?

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

To eat or not to eat?…A question many with diabetes would love to ask

Will Self’s recent ‘point of view’ certainly gave me food for thought.

He argues that we have become obsessed with food, which dominates our high streets and our television programmes and we could do well to remember that eating is really a way of satisfying hunger rather than being a creative occupation. He also reminds us that there are plenty of people going hungry in our own localities, with food banks opening up with depressing frequency, even as we make the agonising choice of which ready meal to purchase from the heaving supermarket shelves. He suggests that we tend to take the easy option of an eating culture instead of attending to more challenging cultural developments in arts or science. He begs us to resolve to purge ourselves of our food obsession in 2013.

He has a point. There’s a lot to digest in his column (pun intended!), including the observation that when hungry, it doesn’t matter to our bodies whether the food we consume is cooked in a celebrity kitchen or a billy can over a single gas ring. This particular point made me reflect on how, actually, we know these days that food does matter to our bodies and that maybe all the attention on food in recent years has been a force for good - for example we know our bodies react differently to unsaturated and saturated fat, complex or simple carbohydrate, animal and vegetable protein and soluble and insoluble fibre. The outcomes of eating different proportions of these can literally be the difference between life and death, so for all of us these developments are in fact, vital.

That’s not to say there’s a direct relationship between ‘media cooking’ and health, quite the opposite sometimes, if recent reports on the unhealthiness of celebrity endorsed recipes, are to be believed, with many found to be way over the recommendations for fat, sugar and salt. However, another way of looking at this is that such research can actually serve to offer a new way of bringing healthy eating recommendations to the attention of the masses consuming food related news – perhaps another benefit of our food-orientated culture?

My main reflection generated by this column was the thought that for the couple of million people with diabetes in this country, eating or not eating is not a simple option, although many would dearly like it to be. I have heard many times from people with diabetes that just to choose to skip a meal would be a luxury and the liberation felt by those who have experienced this, perhaps through starting pump therapy, reversing the early signs of type 2 diabetes, or for the lucky few, an islet cell transplant, is immense.

For the rest, eating is often a daily grinding juggling act, a way of getting through the day without experiencing hypos or high blood glucose symptoms, catching a hypo in time to prevent embarrassment, and simply being able to fit food in with their social or work schedule. Many say that an obsession with food ‘comes with the diagnosis’ and that looking at food in an enjoyable way can become a rare thing. Someone with Type 1 diabetes I met recently explained it like this ‘you see a lovely roast dinner and prepare to enjoy it….I see a maths equation - ‘how many carbs + insulin will equal a normal blood glucose level?’. Such mathematical calculations are part and parcel of everyday life with diabetes.

We’ve written in this column before about our wish for more and better access to technologies such as insulin pumps, and more flexible medication regimens that do so much to expand the options around eating for people with diabetes. Whilst we do our bit to make eating and cooking calculations easier with diabetes, for example with our carb-counted recipe book, it's also our regular new year hope that even more people with diabetes will get the chance to ask the question ‘to eat or not to eat?’ and answer it in any way they like.


References
The Never-ending Culinary Merry Go-Round
http://www.bbc.co.uk/news/magazine-20836616


'Carb-Counted Recipes for Diabetes’
http://www.successfuldiabetes.com/component/content/article/220