It can’t have missed anyone’s attention in the last couple of weeks that the ready-meal industry among others has been hit by a massive scandal. While horsemeat in food is not harmful in itself, the reputational damage to these products and their providers is huge – being suspected of misleading your customers is not a great way to encourage them to shop with you.
The other recent headline-grabbing health issue has been the epidemic of obesity, with the ‘fattest town in Britain’ having about one-third of the population in the obese category of weight. ‘Something must be done’ screamed an alliance of doctors, a powerful voice describing the impending explosion of ill health and poor quality of life to come for a generation.
Am I the only one to think of a potential positive connection between these two issues? It goes something like this…
Ready meals and burgers especially the ‘value’ brands, have often been criticised for containing higher than desirable levels of sugar, salt and saturated fat. Eaten often by some because of their cheap source of calories, they contribute to weight gain and hypertension, 2 of the key ingredients in the recipe for Type 2 diabetes and heart disease. So would it not be a great move for a savvy supermarket to keep their previous ready-meal customers loyal by steering them in the direction of equally simple to prepare, but healthier alternatives at the same price and gradually ease out ALL the hidden risks from the shelves along with the horsemeat and other contents not mentioned on the labels.
What a victory that would be, in the race not only for the customer’s money pound, but also their fleshy one, by helping to hold back the tsunami of ill health destined in part by consumption of their current products. Come on food providers, it’s your chance to shine!
Wednesday, 20 February 2013
Tuesday, 29 January 2013
‘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?
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?
Saturday, 19 January 2013
Legacy or Let Down? A Decade of the Diabetes National Service Framework
With great promise and excitement, the ambitious 10 year delivery strategy of the diabetes national service framework (NSF) was launched in January 2003. For the first time, a government was taking a long view of long term conditions care with these 10 year programmes, enacted from ‘the NHS Plan’ of 1997. Diabetes was just the third NSF to be published, showing what we thought was a brilliant commitment to this important and growing condition
At the time, 10 years seemed an age away with plenty of time to do everything the standards demanded. Yet here we are in 2013 with a whole new health policy world and with the next huge NHS reform upon us. So did the NSF achieve anything and will its legacy live on in the current incarnation of diabetes care - or were we let down on its promises?
As is our wont here at SD Comments, we’ll start by looking at some of the success stories that seem to be here to stay and have undoubtedly changed the face of diabetes care:
LEGACY: Eye screening for retinopathy is universally available and pretty much everyone with diabetes is invited to have their eyes photographed annually. As a result, blindness rates due to diabetes in the working population are getting lower every year, thanks to the early intervention on problems detected through retinal photography
LEGACY: Local diabetes networks bringing together people working within hospital, community and general practice services for diabetes have grown and persisted. Communication between health professionals working together has improved and faster referrals and decisions about acute situations such as foot ulcers can be made as a result. The latest recommendations about communication between services have just been published by NHS Diabetes, quite rightly highlighting their continuing importance in the ‘new’ NHS
LEGACY: Specific mention of children and young people as well as adults with diabetes. The NSF was very clear about the needs of children and young people as a specialty, a distinction that hadn’t always been so clearly made. Every one of the 12 NSF standards mentioned each age group and today, the focus on children and young people with diabetes is intense, with Diabetes UK’s most recent awareness campaign highlighting the need for prompt and early recognition of symptoms of Type 1 diabetes in children
Unfortunately, there are also some let downs when looking back at the NSF and these have to be examined too – so these important aspects don’t continue to be forgotten
LET DOWN: Diabetes structured education. Despite the NSF heralding the importance of supported self management and the provision of high quality information and education, there is still a massive lack of access to structured education and enormous variation throughout the country. Even more worrying (as detailed in this blog before) is the very low invitation to and uptake of diabetes education courses. In addition, education courses are often the first to be cut when economies in services have to be made, as in recent years in the NHS. This leads to people being unable to manage their condition for lack of the ‘tools to do the job’.
LET DOWN: Personalised care planning and participation in decision making. Despite a whole standard to do with empowering people to manage their condition themselves and being helped to make decisions based on their own goals and aspirations, there is still very little results sharing prior to consultations and consultations still often follow the traditional medical model of ‘health professional knows best’, despite the day to day management of diabetes actually being in the hands of the person living with it.
Happily, the current health policy is still promoting a personalised approach with the ideal of ‘no decision about me, without me’ and there is a strong focus on this for people with long term conditions in the Government’s recent instructions to the NHS, so maybe there is a glimmer of hope that this let down will become a legacy in the end
LET DOWN: User involvement in how services are planned and delivered. This aspect of the NSF started with great promise, with a number of initiatives and organisations, guidelines and recommendations dedicated to developing this approach. However, enthusiasm for it seems to have waned over the years, even among campaigning organisations. Proper, proactive involvement of people who use services is now extremely patchy. Apparantly, the new NHS will have a much stronger ‘patient’ voice, but this may be more to do with complaints and accountability than involvement and consultation in how services are actually run
So that’s our take on what is and what might have been. Ever optimistic, however, we will continue to bang the drum for person centred approaches, access to diabetes education and user involvement, and do all we can to ensure that the ‘brave new NHS’ will take note of these let downs as well as the legacies
References
Department of Health (2003). Diabetes National Service Framework: delivery strategy http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_4003246
Department of Health (2012). The Mandate. A mandate from the Government to the NHS Commissioning Board: April 2013 to March 2015
http://mandate.dh.gov.uk/
NHS Diabetes (2013). Implementing Local Diabetes Networks
http://www.diabetes.nhs.uk/our_publications/
Do you agree with what we’ve said? If so – and if not – your views and comments are welcome below!
At the time, 10 years seemed an age away with plenty of time to do everything the standards demanded. Yet here we are in 2013 with a whole new health policy world and with the next huge NHS reform upon us. So did the NSF achieve anything and will its legacy live on in the current incarnation of diabetes care - or were we let down on its promises?
As is our wont here at SD Comments, we’ll start by looking at some of the success stories that seem to be here to stay and have undoubtedly changed the face of diabetes care:
LEGACY: Eye screening for retinopathy is universally available and pretty much everyone with diabetes is invited to have their eyes photographed annually. As a result, blindness rates due to diabetes in the working population are getting lower every year, thanks to the early intervention on problems detected through retinal photography
LEGACY: Local diabetes networks bringing together people working within hospital, community and general practice services for diabetes have grown and persisted. Communication between health professionals working together has improved and faster referrals and decisions about acute situations such as foot ulcers can be made as a result. The latest recommendations about communication between services have just been published by NHS Diabetes, quite rightly highlighting their continuing importance in the ‘new’ NHS
LEGACY: Specific mention of children and young people as well as adults with diabetes. The NSF was very clear about the needs of children and young people as a specialty, a distinction that hadn’t always been so clearly made. Every one of the 12 NSF standards mentioned each age group and today, the focus on children and young people with diabetes is intense, with Diabetes UK’s most recent awareness campaign highlighting the need for prompt and early recognition of symptoms of Type 1 diabetes in children
Unfortunately, there are also some let downs when looking back at the NSF and these have to be examined too – so these important aspects don’t continue to be forgotten
LET DOWN: Diabetes structured education. Despite the NSF heralding the importance of supported self management and the provision of high quality information and education, there is still a massive lack of access to structured education and enormous variation throughout the country. Even more worrying (as detailed in this blog before) is the very low invitation to and uptake of diabetes education courses. In addition, education courses are often the first to be cut when economies in services have to be made, as in recent years in the NHS. This leads to people being unable to manage their condition for lack of the ‘tools to do the job’.
LET DOWN: Personalised care planning and participation in decision making. Despite a whole standard to do with empowering people to manage their condition themselves and being helped to make decisions based on their own goals and aspirations, there is still very little results sharing prior to consultations and consultations still often follow the traditional medical model of ‘health professional knows best’, despite the day to day management of diabetes actually being in the hands of the person living with it.
Happily, the current health policy is still promoting a personalised approach with the ideal of ‘no decision about me, without me’ and there is a strong focus on this for people with long term conditions in the Government’s recent instructions to the NHS, so maybe there is a glimmer of hope that this let down will become a legacy in the end
LET DOWN: User involvement in how services are planned and delivered. This aspect of the NSF started with great promise, with a number of initiatives and organisations, guidelines and recommendations dedicated to developing this approach. However, enthusiasm for it seems to have waned over the years, even among campaigning organisations. Proper, proactive involvement of people who use services is now extremely patchy. Apparantly, the new NHS will have a much stronger ‘patient’ voice, but this may be more to do with complaints and accountability than involvement and consultation in how services are actually run
So that’s our take on what is and what might have been. Ever optimistic, however, we will continue to bang the drum for person centred approaches, access to diabetes education and user involvement, and do all we can to ensure that the ‘brave new NHS’ will take note of these let downs as well as the legacies
References
Department of Health (2003). Diabetes National Service Framework: delivery strategy http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_4003246
Department of Health (2012). The Mandate. A mandate from the Government to the NHS Commissioning Board: April 2013 to March 2015
http://mandate.dh.gov.uk/
NHS Diabetes (2013). Implementing Local Diabetes Networks
http://www.diabetes.nhs.uk/our_publications/
Do you agree with what we’ve said? If so – and if not – your views and comments are welcome below!
Friday, 11 January 2013
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
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
Wednesday, 2 January 2013
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
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
Thursday, 13 December 2012
Structured Education for People with Diabetes – A Box Waiting to be Ticked
There are many important statistics inside the latest report from the National Diabetes Audit (NDA), covering England and Wales, published earlier this week. Sadly, most of them lead to one main conclusion – that diabetes care is variable and because of the lack of receiving some well-known basics, people with diabetes run a 40% excess risk of death and also have a massively increased incidence of heart failure and many other complications. The NDA co-ordinators and diabetes organisations have called for the NHS to wake up and put nationally recommended care and treatment plans into practice. As ever, we support this call wholeheartedly.
To our mind, one eye-catching aspect to the report, which unfortunately didn’t make the headlines, was the finding that very few people with diabetes were either offered or attended a structured education programme when they were diagnosed. The figures covering 2009-2011, are not only low but stunningly low. In all, just under 8.5% of people were offered a structured education programme and just under 3.5% attended. Applied to Type 1 diabetes, the figures were 2.79% and 1.55% respectively and for Type 2, 8.72% and 3.57%.
If true, this is horrific – it means that most people being diagnosed with a lifelong condition that they themselves will need to manage day in, day out are not offered the opportunity to learn about how to do this. And even when they are offered it, it looks like only about half of them take up their place.
Another scary aspect of these figures is that although information about the offer and uptake of structured education has been gathered by the audit since 2005, this is the first time that there has been sufficient quality of data to publish. That means that in previous years, the figures were possibly even tinier than this year. The report’s conclusion, unsurprisingly, is that these figures are a great cause for concern. Again, we would definitely agree with this… but we’ve also been thinking ‘what on earth can be going on to create this situation?’ and so here’s our take on the issues and a suggestion for a way forward:
First and most obviously, are these figures accurate? The report itself says that under-recording is likely, and in our experience there are many, many services providing diabetes education, sometimes struggling to get takers because of low referrals. The referrals they do get are not always formal and documented and can even be through ‘word of mouth’. So it might well be that the people ‘ticking the boxes’ actually don’t know that education is taking place because it isn’t recorded. One possible way forward for this is that as well as a ‘yes/no’ answer box, there could be a ‘don’t know’ box, so that the audit can identify services where better information or communication of provision is needed.
Another key issue, and in our opinion, probably the most likely cause, is lack of provision of education programmes. Education in diabetes is still seen by many as an ‘added extra’ rather than the stuff of diabetes care itself. Because it isn’t seen as essential (and doesn't attract any money!), in pinched financial times such as the ones the NHS has experienced recently, it is one of the easiest parts of a service to cut and this has been the case in many places in recent years. But it’s also important to note that in many places structured education has never even got going, let alone been cut. This is not always through a lack of desire for it by diabetes services on the frontline, and they themselves will often cite lack of funds and educational expertise to get courses off the ground – another whole, vital issue that needs to be addressed.
When it comes to the diabetes audit then, if there is no provision, offering education is not going to make any difference – hence a ‘no’ in both boxes. The answer to this one is a radical rethink of the fundamental purpose of diabetes care services – of which more later.
On that note, the actual data recording in the audit might contribute to the results – for example, why record only whether people have been offered structured education and if they participated or not? Asking for the individuals’ reasons for not taking up the offer would be much more informative, because so much could depend on how education is offered. Given that for many, including health professionals, diabetes education is an ‘also ran’, it follows that this ambivalence might well be communicated to the person diagnosed, giving them the impression they can take it or leave it. Indeed, reasons we have heard from people with diabetes as to why they cannot be offered structured education range from ‘because we don’t have it in this area’ to ‘you probably don’t need it as you seem to be getting on ok’. Health professionals themselves often also say that they don’t believe that group education (which is recommended and has been shown to be effective), is right for everyone, so they end up not offering it to anyone. Given these examples and pre-judgements, it is not surprising that it is a bit hit and miss who gets offered an education programme.
Finally and amazingly, people still debate whether diabetes education ‘works’. It’s true that programmes studied often show little effect on diabetes control measures such as HbA1c. However, this is not always the case so this is not in itself a good reason to abandon it.
Here’s another way of looking at this argument: if you think that education is not designed to show medical outcomes, but is designed to show learning, and if the learning is done effectively, then it is a fantastic achievement. Imagine results in terms of many more people with diabetes keeping themselves out of hospital, fewer making costly phone calls to diabetes specialist nurses and practice nurses to ask about dose adjustment, and all able to confidently defend their decisions about what and when to eat. That’s what learning to live with diabetes effectively is all about and indeed, many educational programmes do show effects on these educational outcomes – increased confidence in day to day managing the condition, such as increased understanding of diabetes itself, increased self esteem and decreased anxiety and stress related to diabetes, to name but a few.
Here’s our suggested framework for success that might just tick the box for improved information AND improved education for people with diabetes and boost these audit figures no end
• Everyone diagnosed with diabetes follows a pathway straight to a group-based education programme within 3 months of their diagnosis – this is seen as the treatment for the first few months.
• There are few and specific reasons why someone should not undertake this pathway: for example, they are admitted to hospital or they are mentally or physically ill to the extent that they cannot manage their life alone, or they are in an institutional setting (although there’s no reason not to provide diabetes education in prisons or secure hospitals, is there?)
• The initial, group-based education programme is followed by update group education sessions every 6 months, which could be followed by one to one appointments if necessary
• Medical annual reviews for diabetes complications screening are scheduled at the appropriate time each year.
• Attendance and appointment logs for the education programmes are kept for each individual, which include invitation information and the person’s own reasons for not attending (if this is the case), and these are what is submitted to the national diabetes audit each year.
Not only would these data provide a much more accurate picture for the National Diabetes Audit, but this kind of pathway would encourage all diabetes services to be truly educationally focussed, staff to gain badly-needed skills and qualifications in education and learning and, most of all, people with diabetes to feel that they are getting what they need – information, answers to their questions and support from other people experiencing the condition, often one of the most overlooked and under utilised resources in the educational toolkit. Having all this would certainly be a welcome tick in the box!
References
National Diabetes Audit 2010-2011 Report 2: Structured Education http://www.ic.nhs.uk/diabetesaudits
(download from right hand panel)
Diabetes fuels heart failure risk
http://www.bbc.co.uk/news/health-20629398
To our mind, one eye-catching aspect to the report, which unfortunately didn’t make the headlines, was the finding that very few people with diabetes were either offered or attended a structured education programme when they were diagnosed. The figures covering 2009-2011, are not only low but stunningly low. In all, just under 8.5% of people were offered a structured education programme and just under 3.5% attended. Applied to Type 1 diabetes, the figures were 2.79% and 1.55% respectively and for Type 2, 8.72% and 3.57%.
If true, this is horrific – it means that most people being diagnosed with a lifelong condition that they themselves will need to manage day in, day out are not offered the opportunity to learn about how to do this. And even when they are offered it, it looks like only about half of them take up their place.
Another scary aspect of these figures is that although information about the offer and uptake of structured education has been gathered by the audit since 2005, this is the first time that there has been sufficient quality of data to publish. That means that in previous years, the figures were possibly even tinier than this year. The report’s conclusion, unsurprisingly, is that these figures are a great cause for concern. Again, we would definitely agree with this… but we’ve also been thinking ‘what on earth can be going on to create this situation?’ and so here’s our take on the issues and a suggestion for a way forward:
First and most obviously, are these figures accurate? The report itself says that under-recording is likely, and in our experience there are many, many services providing diabetes education, sometimes struggling to get takers because of low referrals. The referrals they do get are not always formal and documented and can even be through ‘word of mouth’. So it might well be that the people ‘ticking the boxes’ actually don’t know that education is taking place because it isn’t recorded. One possible way forward for this is that as well as a ‘yes/no’ answer box, there could be a ‘don’t know’ box, so that the audit can identify services where better information or communication of provision is needed.
Another key issue, and in our opinion, probably the most likely cause, is lack of provision of education programmes. Education in diabetes is still seen by many as an ‘added extra’ rather than the stuff of diabetes care itself. Because it isn’t seen as essential (and doesn't attract any money!), in pinched financial times such as the ones the NHS has experienced recently, it is one of the easiest parts of a service to cut and this has been the case in many places in recent years. But it’s also important to note that in many places structured education has never even got going, let alone been cut. This is not always through a lack of desire for it by diabetes services on the frontline, and they themselves will often cite lack of funds and educational expertise to get courses off the ground – another whole, vital issue that needs to be addressed.
When it comes to the diabetes audit then, if there is no provision, offering education is not going to make any difference – hence a ‘no’ in both boxes. The answer to this one is a radical rethink of the fundamental purpose of diabetes care services – of which more later.
On that note, the actual data recording in the audit might contribute to the results – for example, why record only whether people have been offered structured education and if they participated or not? Asking for the individuals’ reasons for not taking up the offer would be much more informative, because so much could depend on how education is offered. Given that for many, including health professionals, diabetes education is an ‘also ran’, it follows that this ambivalence might well be communicated to the person diagnosed, giving them the impression they can take it or leave it. Indeed, reasons we have heard from people with diabetes as to why they cannot be offered structured education range from ‘because we don’t have it in this area’ to ‘you probably don’t need it as you seem to be getting on ok’. Health professionals themselves often also say that they don’t believe that group education (which is recommended and has been shown to be effective), is right for everyone, so they end up not offering it to anyone. Given these examples and pre-judgements, it is not surprising that it is a bit hit and miss who gets offered an education programme.
Finally and amazingly, people still debate whether diabetes education ‘works’. It’s true that programmes studied often show little effect on diabetes control measures such as HbA1c. However, this is not always the case so this is not in itself a good reason to abandon it.
Here’s another way of looking at this argument: if you think that education is not designed to show medical outcomes, but is designed to show learning, and if the learning is done effectively, then it is a fantastic achievement. Imagine results in terms of many more people with diabetes keeping themselves out of hospital, fewer making costly phone calls to diabetes specialist nurses and practice nurses to ask about dose adjustment, and all able to confidently defend their decisions about what and when to eat. That’s what learning to live with diabetes effectively is all about and indeed, many educational programmes do show effects on these educational outcomes – increased confidence in day to day managing the condition, such as increased understanding of diabetes itself, increased self esteem and decreased anxiety and stress related to diabetes, to name but a few.
Here’s our suggested framework for success that might just tick the box for improved information AND improved education for people with diabetes and boost these audit figures no end
• Everyone diagnosed with diabetes follows a pathway straight to a group-based education programme within 3 months of their diagnosis – this is seen as the treatment for the first few months.
• There are few and specific reasons why someone should not undertake this pathway: for example, they are admitted to hospital or they are mentally or physically ill to the extent that they cannot manage their life alone, or they are in an institutional setting (although there’s no reason not to provide diabetes education in prisons or secure hospitals, is there?)
• The initial, group-based education programme is followed by update group education sessions every 6 months, which could be followed by one to one appointments if necessary
• Medical annual reviews for diabetes complications screening are scheduled at the appropriate time each year.
• Attendance and appointment logs for the education programmes are kept for each individual, which include invitation information and the person’s own reasons for not attending (if this is the case), and these are what is submitted to the national diabetes audit each year.
Not only would these data provide a much more accurate picture for the National Diabetes Audit, but this kind of pathway would encourage all diabetes services to be truly educationally focussed, staff to gain badly-needed skills and qualifications in education and learning and, most of all, people with diabetes to feel that they are getting what they need – information, answers to their questions and support from other people experiencing the condition, often one of the most overlooked and under utilised resources in the educational toolkit. Having all this would certainly be a welcome tick in the box!
References
National Diabetes Audit 2010-2011 Report 2: Structured Education http://www.ic.nhs.uk/diabetesaudits
(download from right hand panel)
Diabetes fuels heart failure risk
http://www.bbc.co.uk/news/health-20629398
Monday, 5 November 2012
Remember, Remember…
Even though it’s the right day, the title of this blog doesn't continue with 'the 5th November' (as you might have been starting to sing in your head). Instead, the next line is 'remember, remember... all the basics of living with diabetes'. We're referring to those small actions and timely interventions that can make the crucial difference between diabetes fitting neatly into your life and you constantly feeling you're backpedalling to keep up with it and pick up the pieces.
Take blood testing for example... yes, it is a pain, can be messy, inconvenient, embarrassing even, but without it, maybe you get an embarrassing hypo, an inconvenient thirst or the annoying call of the loo every 5 minutes. You get the idea?
To celebrate World Diabetes Day this month, we will be publishing a brand new book with reminders of all these essentials, revisiting the basics of diabetes and answering some of those often heard questions-to-self 'why am I doing this?' or, more often 'how did I end up in this situation?' If you've ever experienced this, we may be able to help you - just watch this space and our website for more info on when this useful addition to your diabetes bookshelf is available!
And importantly in this blog, we also want to ‘remember, remember’ something else: World Diabetes Day itself. It's a day supported by the International Diabetes Federation and celebrated around the world on 14 November, the birthday of Frederick Banting. Banting was a member of the Nobel prizewinning team who discovered insulin back in the 1920s. Blue is the colour of the WDD symbol, and many countries, towns and cities light up their most iconic buildings in blue to mark the occasion. It's a day to reflect on what's needed in diabetes care here and now.
With so many days and weeks set aside for different conditions these days, it's easy to think this is just another one, albeit with a good gimmick. Here's why we think it's important...
In the 1920s, the treatment for diabetes looked simple: insulin transformed people from emaciated remnants of humanity to vital beings, restored like the biblical Lazarus to their families and to life. Many of those who were first treated with insulin went on to have long and fulfilling, even pioneering lives, like Elizabeth Hughes Gossett, who died in her 80s after over decades on insulin, and Robin Lawrence, the famous doctor and founder of the British Diabetic Association, still thriving as Diabetes UK.
A few years down the line and for very many more people with diabetes, however, the picture was not so rosy. From the miracle of restoring life, the ravages of long-term high blood glucose levels became clear. Lost limbs, blindness, kidney failure and miscarriage and stillbirth rates spiralled upwards among those with long-term diabetes. It became clear that there was much more to diabetes than taking a daily injection of insulin and preventing hypos at all costs. Landmark research studies followed, showing that these catastrophic complications CAN be prevented and careful surveillance of their health both for and by people with diabetes must be taken, throughout their lives. In addition, it’s now known that Type 2 diabetes itself can be prevented through specific identification and intervention among those at risk.
It's great to say that modern day diabetes care can offer this care and prevention. Unfortunately, though, modern day diabetes care is not everywhere and not for everyone. Some governments still ignore the vast problem of diabetes among their people and some people still miss their care appointments. Focussing on education and campaigning, and highlighting the tragedies of missed diagnoses and lost working lives, are all important features of World Diabetes Day, as well as celebrating the successes and massive strides forward that are made by dedicated scientists, health professionals and people with diabetes themselves each year.
So don't forget to remember World Diabetes Day and maybe mark it with something special, however small, that signals your commitment to spreading the word. We've put together some ideas to start you off...
• Tell someone (anyone!), a single fact about diabetes, or your own diabetes, to raise awareness about it and its impact
• Dress in blue for the day - and tell people why
• Make a small donation to a local or national diabetes charity
• Make some blue-iced cupcakes and take them to work or school
• Visit the World Diabetes Day website to find out more about diabetes worldwide and spread this information on your social networking site
• Make a commitment to yourself if you have diabetes, to find out more about a particular aspect, or get help with something that is concerning you about it
Whatever you do, it will make a difference. Oh, and another thing to remember… put 14 November in next year’s diary to do it all again!
Websites
World Diabetes Day
Successful Diabetes
Take blood testing for example... yes, it is a pain, can be messy, inconvenient, embarrassing even, but without it, maybe you get an embarrassing hypo, an inconvenient thirst or the annoying call of the loo every 5 minutes. You get the idea?
To celebrate World Diabetes Day this month, we will be publishing a brand new book with reminders of all these essentials, revisiting the basics of diabetes and answering some of those often heard questions-to-self 'why am I doing this?' or, more often 'how did I end up in this situation?' If you've ever experienced this, we may be able to help you - just watch this space and our website for more info on when this useful addition to your diabetes bookshelf is available!
And importantly in this blog, we also want to ‘remember, remember’ something else: World Diabetes Day itself. It's a day supported by the International Diabetes Federation and celebrated around the world on 14 November, the birthday of Frederick Banting. Banting was a member of the Nobel prizewinning team who discovered insulin back in the 1920s. Blue is the colour of the WDD symbol, and many countries, towns and cities light up their most iconic buildings in blue to mark the occasion. It's a day to reflect on what's needed in diabetes care here and now.
With so many days and weeks set aside for different conditions these days, it's easy to think this is just another one, albeit with a good gimmick. Here's why we think it's important...
In the 1920s, the treatment for diabetes looked simple: insulin transformed people from emaciated remnants of humanity to vital beings, restored like the biblical Lazarus to their families and to life. Many of those who were first treated with insulin went on to have long and fulfilling, even pioneering lives, like Elizabeth Hughes Gossett, who died in her 80s after over decades on insulin, and Robin Lawrence, the famous doctor and founder of the British Diabetic Association, still thriving as Diabetes UK.
A few years down the line and for very many more people with diabetes, however, the picture was not so rosy. From the miracle of restoring life, the ravages of long-term high blood glucose levels became clear. Lost limbs, blindness, kidney failure and miscarriage and stillbirth rates spiralled upwards among those with long-term diabetes. It became clear that there was much more to diabetes than taking a daily injection of insulin and preventing hypos at all costs. Landmark research studies followed, showing that these catastrophic complications CAN be prevented and careful surveillance of their health both for and by people with diabetes must be taken, throughout their lives. In addition, it’s now known that Type 2 diabetes itself can be prevented through specific identification and intervention among those at risk.
It's great to say that modern day diabetes care can offer this care and prevention. Unfortunately, though, modern day diabetes care is not everywhere and not for everyone. Some governments still ignore the vast problem of diabetes among their people and some people still miss their care appointments. Focussing on education and campaigning, and highlighting the tragedies of missed diagnoses and lost working lives, are all important features of World Diabetes Day, as well as celebrating the successes and massive strides forward that are made by dedicated scientists, health professionals and people with diabetes themselves each year.
So don't forget to remember World Diabetes Day and maybe mark it with something special, however small, that signals your commitment to spreading the word. We've put together some ideas to start you off...
• Tell someone (anyone!), a single fact about diabetes, or your own diabetes, to raise awareness about it and its impact
• Dress in blue for the day - and tell people why
• Make a small donation to a local or national diabetes charity
• Make some blue-iced cupcakes and take them to work or school
• Visit the World Diabetes Day website to find out more about diabetes worldwide and spread this information on your social networking site
• Make a commitment to yourself if you have diabetes, to find out more about a particular aspect, or get help with something that is concerning you about it
Whatever you do, it will make a difference. Oh, and another thing to remember… put 14 November in next year’s diary to do it all again!
Websites
World Diabetes Day
Successful Diabetes
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