Our latest guest blog is from Joe Griffiths, on how finding the diabetes online community changed his life - and work!
I went 10 years before I started to look for outside help with my diabetes. Whilst I would keep my doctors and specialist nurses in the loop with how things were going sugar-wise, I kept the emotional side of things close to my chest. This was a mistake.
Without realising, I was living with my diabetes like it was an embarrassing little brother. The kind you don’t want to bring to the party but feel like you have to because someone needs to look after him. He’ll pull on your arm when he needs attention or make a huff if you haven’t introduced him yet. He’s basically a needy little douche bag.
However, one day I randomly decided to take it upon myself to do some googling about online help for diabetes. What Google spat back at me was way more than I had anticipated. It wasn’t just the regular government supported sites taking up the first 10 spaces, instead there were links to blogs and online magazines. Unbeknown to me, there’s a whole community out there.
I immediately took to Twitter and searched for diabetes. Once again I found myself doing my best impression of a deer in headlights. I literally couldn’t believe my eyes! People were actually talking loud and proud about their diabetes, even mentioning it in their Twitter profiles. Once I had gotten over the initial shock, I began my own transformation…
In the space of a few weeks, I had more than doubled my Twitter follows and followers; connecting with my fellow pancreatically challenged brethren. I was instantly welcomed by several members of DOC (diabetic online community), introduced to different hashtags and tweet chats to help connect with others. Feeling like a member of an elite group; I even added ‘type 1 diabetic’ into my own Twitter profile!
After feeing inspired, I wanted to get it all off my chest. I put forward the idea of writing an article on diabetes, to my boss. As the lone diabetic at our company, Voucher Codes Pro, I’ve been at the butt of every sugar-based joke. It was time to clear a few things up about my condition and roll out some banter of my own...
The result?
One of the best pieces of content I had ever written. By injecting my own sense of humour, experiences and thoughts on diabetes, I had created a mammoth blog-type post on the dreaded D. I wanted to highlight how brilliant the DOC is and help educate those who may be newly diagnosed or completely clueless. By the time I had finished, it felt like a huge weight had been lifted from my shoulders. I was interacting with people who understood what I’d been going through the last 10 years, making them laugh while doing so.
The online community is fantastic. If you can take anything away from this, just give it a go and embrace your diabetes rather than seeing it as a curse (or an annoying younger sibling who you’re forced to take everywhere). I personally feel like a better person since having to take more responsibility for my well-being and I plan on continuing to improve myself well into the future.
We’re all in this together.
See Joe's website here
Tweet Joe @VCP_Joe
Tuesday, 19 May 2015
Monday, 27 April 2015
Listening to a Diabetes Diet – Food for Thought?
Radio 4’s ‘Food Programme’ focused yesterday on diabetes and food. A very welcome focus, stimulated in part, says the blurb, by the large number of people diagnosed with diabetes, contacting Diabetes UK to ask ‘what can I eat?’
The programme brought together an impressive line up of experts to discuss the answer to this question, including representatives from Diabetes UK, a media doctor whose own son has Type 1 diabetes, a specialist dietitian and a radio presenter with longstanding Type 1 diabetes. Together they were able to explain what diabetes is, how common is Type 2 diabetes and gave some good messages about what a healthy ‘diet’ consists of, including ways that less healthy options can be improved (with, generally, extra vegetables added). Particularly welcome was the news that Boots and Thorntons are phasing out their ‘diabetic’ food ranges and the emphasis by Diabetes UK on trying to get away from the idea of ‘a diabetic diet’
Although the focus was on food, as ever from an SD point of view, the most interesting aspects were the personal stories alluded to by those there to discuss actually living with diabetes. The media doctor described the challenges of helping a young child learn to live with daily injections and how even as a doctor, the emotional burden was the same as any parent would experience. He sounded clearly very proud of his now grown up son, (who has in turn become a GP) and relieved that he is living a very healthy life, something that will have resonated loudly with many parents of young children, and perhaps given them some consolation
JP, the radio presenter with Type 1 diabetes, described a huge family history of diabetes, much of it also Type 1. Even so, upon his own diagnosis, it had come as something of a shock to him what a juggling act it really was to live with this condition. He wasn’t so keen on eating out, he said, because historically it hadn’t been so easy to match his insulin timings to the food arriving. Even though times had changed, he still tended to follow what he’d been taught at the beginning, for example, eating as little sugar as possible
An item towards the start of the programme focused on someone newly diagnosed with Type 2 diabetes who in a relatively short interview, was able to reveal a range of concerns about having diabetes. This included finding unexpected amounts of sugar ‘lurking’ everywhere, for example, in tonic water, but more poignantly, the worries about passing on poor health to her sons and not wishing to ‘be a burden’ if she developed complications.
None of the personal aspects and emotional effects of living with diabetes were meant to be part of this programme, but they ‘leaked out’ anyway. Perhaps this is because food itself is an emotional issue for many people or perhaps, whatever the official topic under discussion, these are the aspects that matter most, as living with diabetes is so intricately bound within family and social relationships and our very identity. A programme putting this centre-stage would be a recipe for a very tasty listen.
BBC Radio 4: The Food Programme. 26.4.15
The programme brought together an impressive line up of experts to discuss the answer to this question, including representatives from Diabetes UK, a media doctor whose own son has Type 1 diabetes, a specialist dietitian and a radio presenter with longstanding Type 1 diabetes. Together they were able to explain what diabetes is, how common is Type 2 diabetes and gave some good messages about what a healthy ‘diet’ consists of, including ways that less healthy options can be improved (with, generally, extra vegetables added). Particularly welcome was the news that Boots and Thorntons are phasing out their ‘diabetic’ food ranges and the emphasis by Diabetes UK on trying to get away from the idea of ‘a diabetic diet’
Although the focus was on food, as ever from an SD point of view, the most interesting aspects were the personal stories alluded to by those there to discuss actually living with diabetes. The media doctor described the challenges of helping a young child learn to live with daily injections and how even as a doctor, the emotional burden was the same as any parent would experience. He sounded clearly very proud of his now grown up son, (who has in turn become a GP) and relieved that he is living a very healthy life, something that will have resonated loudly with many parents of young children, and perhaps given them some consolation
JP, the radio presenter with Type 1 diabetes, described a huge family history of diabetes, much of it also Type 1. Even so, upon his own diagnosis, it had come as something of a shock to him what a juggling act it really was to live with this condition. He wasn’t so keen on eating out, he said, because historically it hadn’t been so easy to match his insulin timings to the food arriving. Even though times had changed, he still tended to follow what he’d been taught at the beginning, for example, eating as little sugar as possible
An item towards the start of the programme focused on someone newly diagnosed with Type 2 diabetes who in a relatively short interview, was able to reveal a range of concerns about having diabetes. This included finding unexpected amounts of sugar ‘lurking’ everywhere, for example, in tonic water, but more poignantly, the worries about passing on poor health to her sons and not wishing to ‘be a burden’ if she developed complications.
None of the personal aspects and emotional effects of living with diabetes were meant to be part of this programme, but they ‘leaked out’ anyway. Perhaps this is because food itself is an emotional issue for many people or perhaps, whatever the official topic under discussion, these are the aspects that matter most, as living with diabetes is so intricately bound within family and social relationships and our very identity. A programme putting this centre-stage would be a recipe for a very tasty listen.
BBC Radio 4: The Food Programme. 26.4.15
Monday, 13 April 2015
A suitable image for diabetes?
The news today carries an item about imagery for mental illness, with the organisation ‘Time to Change’ advocating a new way to portray those experiencing mental health issues, distress and despair. They suggest more neutral, supportive pictures, rather than the traditional ‘head in hands’ approach.
Being in total support of this, it made us think of the imagery that is used for portraying diabetes. Back in 2008, when Successful Diabetes was launched, we searched for a logo to show what our company aimed to achieve. You can see the finished article on our blog here, and also on our website. We’ve (thankfully) had many compliments over the years, especially in the vein of ‘it is so different to show diabetes as success story, it’s so often one of failure’.
But the logo wasn’t like this to start with. When we gave our name and ideas to the people designing the logo, the first suggestions focused on diabetes, complete with syringes, needles, finger pricks, plasters and doctors with stethoscopes round their necks. The ‘successful’ part of our name was pretty much ignored. After we gently pointed out that we didn’t want to focus on the medical, each new draft gradually featured such images less and less until, finally, there were none – which is just the way we like it!
Reflecting on this experience, it seems to show how ‘hardwired’ the images representing diabetes, seemed to be then. In turn, this made us wonder what images are tending being used to ‘show diabetes’ today. So, we had a (very unscientific) ‘straw poll’ of a few websites, and here is what we found:
Rather pleasingly, it looks like things have changed: even on the most ‘diabetes’ of websites (mentioning no names of course!), the images of people, whether living with diabetes or health professionals are really positive and realistic, with not a stethoscope in sight! Families are shown doing everyday activities, to represent coping with diabetes in the mix, happy groups of people on holidays seem to show that it is possible to enjoy life as well as having diabetes. There’s even a picture of people smiling, under the heading ‘hypos and how to cope with them’!!
A couple of aspects were noticeable, however. It seems that where research is discussed, there’s a universal tendency towards pictures of test tubes and white coated scientists with goggles on. Perhaps this stereotype hasn’t quite been attended to yet? and images of food, either under the banner of healthy or unhealthy, quite often feature a large burger and fries! This seems to be an extremely enduring, and all-purpose, image – we wondered if continuing to use it does more harm than good, but that is probably a blog for another day!
One website does deserve a mention because it seemed to use imagery consistently neutrally and successfully throughout. The International Diabetes Federation has a series of outline figures in different poses which give some really clear messages without any assumptions, and also showing that imagery can be made understandable in whichever language the website is accessed in.
What’s your image of diabetes? do you prefer the medical or the personal? The detailed or the vague? Do put us in the picture below!
Reference
Hawkins, K. Mental health and the death of the ‘headclutcher’ picture. ‘Ouch’ blog, 13.4.15
Being in total support of this, it made us think of the imagery that is used for portraying diabetes. Back in 2008, when Successful Diabetes was launched, we searched for a logo to show what our company aimed to achieve. You can see the finished article on our blog here, and also on our website. We’ve (thankfully) had many compliments over the years, especially in the vein of ‘it is so different to show diabetes as success story, it’s so often one of failure’.
But the logo wasn’t like this to start with. When we gave our name and ideas to the people designing the logo, the first suggestions focused on diabetes, complete with syringes, needles, finger pricks, plasters and doctors with stethoscopes round their necks. The ‘successful’ part of our name was pretty much ignored. After we gently pointed out that we didn’t want to focus on the medical, each new draft gradually featured such images less and less until, finally, there were none – which is just the way we like it!
Reflecting on this experience, it seems to show how ‘hardwired’ the images representing diabetes, seemed to be then. In turn, this made us wonder what images are tending being used to ‘show diabetes’ today. So, we had a (very unscientific) ‘straw poll’ of a few websites, and here is what we found:
Rather pleasingly, it looks like things have changed: even on the most ‘diabetes’ of websites (mentioning no names of course!), the images of people, whether living with diabetes or health professionals are really positive and realistic, with not a stethoscope in sight! Families are shown doing everyday activities, to represent coping with diabetes in the mix, happy groups of people on holidays seem to show that it is possible to enjoy life as well as having diabetes. There’s even a picture of people smiling, under the heading ‘hypos and how to cope with them’!!
A couple of aspects were noticeable, however. It seems that where research is discussed, there’s a universal tendency towards pictures of test tubes and white coated scientists with goggles on. Perhaps this stereotype hasn’t quite been attended to yet? and images of food, either under the banner of healthy or unhealthy, quite often feature a large burger and fries! This seems to be an extremely enduring, and all-purpose, image – we wondered if continuing to use it does more harm than good, but that is probably a blog for another day!
One website does deserve a mention because it seemed to use imagery consistently neutrally and successfully throughout. The International Diabetes Federation has a series of outline figures in different poses which give some really clear messages without any assumptions, and also showing that imagery can be made understandable in whichever language the website is accessed in.
What’s your image of diabetes? do you prefer the medical or the personal? The detailed or the vague? Do put us in the picture below!
Reference
Hawkins, K. Mental health and the death of the ‘headclutcher’ picture. ‘Ouch’ blog, 13.4.15
Monday, 30 March 2015
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
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
Sunday, 22 March 2015
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
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
Friday, 6 March 2015
APPG for DSME - OK?!
Well done the All Party Parliamentary Group (APPG) for Diabetes! They have produced a report detailing the parlous situation and implications for people with diabetes of the gross lack of education provided to people when they are diagnosed, and beyond.
The report is concisely written and focuses on recent evidence about barriers to access to education, including the lack of provision of courses in general, and a ‘one size fits all’ approach to provision, in particular. It highlights the gap between services being rewarded for referrals to education through the Quality and Outcomes Framework, a system through which GPs are paid for their activities, and attendance by people at the courses. They conclude that this is often because people are not involved or engaged in the need for them to attend. .
The group gathered evidence from an admirable number of people living with diabetes themselves as well as clinicians, academics and diabetes organisations. This is to be congratulated and will probably give the report even greater credibility as well as those people being sure their voice has been heard. .
It’s a welcome addition, but only an addition, to the body of evidence that provision of opportunities for learning about diabetes are woefully inadequate and that diabetes services and commissioners alike seem to see training and education in the lifelong occupation of caring for diabetes by the person with it themselves, as a bolt-on ‘extra’ to clinical care. It makes recommendations, which are sound, but only an echo of what has already been said. .
The real question is ‘what difference will this report make?’ There are opportunities for clinical commissioning groups to provide courses in sufficient numbers and variety to meet their populations’ needs, but only if they also invest in a system which enables people to be told about them and be encouraged to attend. One of the main barriers to this cited in the report, is the attitude of referrers, who often have no knowledge or experience themselves of what education courses provide, nor their long term benefits. Hence, for many of them, a referral is a ‘take it or leave it’ affair and, in truth, a paper exercise. This must change if attendance at courses is to change and make it worthwhile for all those courses to be provided. .
Like most publications, the report is already in danger of being out of date, despite only being released a day or two ago. Updates to National Institute for Health and Clinical Excellence (NICE) guidance to the NHS for Type 1 diabetes, which are currently in consultation stage, propose to replace one of the documents to which the report refers. This is Technology Appraisal (TA) 60, which details what education programmes should be available. TA 60 was replaced for Type 2 diabetes in the last round of NICE guidance updates. Fortunately the new proposed guidelines for Type 1 diabetes, incorporate much of TA 60’s contents and also place provision of education as a priority for implementation. If adopted, these new updated recommendations should at least help to improve the picture, particularly if their implementation is closely monitored. We will have to ‘watch that space’, but for now at least a tiny further step has been taken to rectify this dire situation. .
Reference
All Party Parliamentary Group for Diabetes (2015). Taking Control: Supporting people to self-manage their diabetes. London. Diabetes UK (Sectariat) .
The report is concisely written and focuses on recent evidence about barriers to access to education, including the lack of provision of courses in general, and a ‘one size fits all’ approach to provision, in particular. It highlights the gap between services being rewarded for referrals to education through the Quality and Outcomes Framework, a system through which GPs are paid for their activities, and attendance by people at the courses. They conclude that this is often because people are not involved or engaged in the need for them to attend. .
The group gathered evidence from an admirable number of people living with diabetes themselves as well as clinicians, academics and diabetes organisations. This is to be congratulated and will probably give the report even greater credibility as well as those people being sure their voice has been heard. .
It’s a welcome addition, but only an addition, to the body of evidence that provision of opportunities for learning about diabetes are woefully inadequate and that diabetes services and commissioners alike seem to see training and education in the lifelong occupation of caring for diabetes by the person with it themselves, as a bolt-on ‘extra’ to clinical care. It makes recommendations, which are sound, but only an echo of what has already been said. .
The real question is ‘what difference will this report make?’ There are opportunities for clinical commissioning groups to provide courses in sufficient numbers and variety to meet their populations’ needs, but only if they also invest in a system which enables people to be told about them and be encouraged to attend. One of the main barriers to this cited in the report, is the attitude of referrers, who often have no knowledge or experience themselves of what education courses provide, nor their long term benefits. Hence, for many of them, a referral is a ‘take it or leave it’ affair and, in truth, a paper exercise. This must change if attendance at courses is to change and make it worthwhile for all those courses to be provided. .
Like most publications, the report is already in danger of being out of date, despite only being released a day or two ago. Updates to National Institute for Health and Clinical Excellence (NICE) guidance to the NHS for Type 1 diabetes, which are currently in consultation stage, propose to replace one of the documents to which the report refers. This is Technology Appraisal (TA) 60, which details what education programmes should be available. TA 60 was replaced for Type 2 diabetes in the last round of NICE guidance updates. Fortunately the new proposed guidelines for Type 1 diabetes, incorporate much of TA 60’s contents and also place provision of education as a priority for implementation. If adopted, these new updated recommendations should at least help to improve the picture, particularly if their implementation is closely monitored. We will have to ‘watch that space’, but for now at least a tiny further step has been taken to rectify this dire situation. .
Reference
All Party Parliamentary Group for Diabetes (2015). Taking Control: Supporting people to self-manage their diabetes. London. Diabetes UK (Sectariat) .
Tuesday, 17 February 2015
Type 2 in Adolescents: Make a Difference from the Start
Type 2 diabetes in children and adolescents is a growing phenomenon and a scary one. Complications can be linked to duration of diabetes and these young people still have a long time ahead of them when they are diagnosed aged under 18. Making their life with diabetes a healthy one is the great challenge, and this can only happen with their full knowledge and participation. Fortunately, research published this month in the respected journal 'Diabetic Medicine' gives some practical and important pointers as to how to achieve this.
The researchers asked adolescents with Type 2 diabetes directly about their beliefs, experiences, wishes and needs in relation to their condition and gained some important insights. For example, that the young people generally were not willing to tell their peers about their condition, for fear of judgement and bullying; that they wanted medications that were discreet and effective (tablets better than injections; injections of non-insulin products rather than insulin, because of their perception of its relationship with severity of diabetes and insulin leading to weight gain); that they would seriously consider bariatric surgery for weight loss. They also seemed to lack support from others, e.g. family members, when they would value reminders to help take medication and sharing in lifestyle changes.
One of the most striking findings was that the young people in the study did not seem to be overly concerned about their Type 2 diabetes or particularly aware of its progress or prognosis. Some of this seemed to originate with the familiarity of the condition through other family members having it, so it seemed 'normal' for them to be also diagnosed. Also, where family members did not make lifestyle or food changes, it was very difficult for them to do this on their own or see the importance of this. On the other hand, could some also be explained by them not receiving this information or it being emphasised enough during their care encounters with professionals?
Professionals are only just coming across such young people with Type 2 diabetes and there are few in any single clinic. Hence it may well be that they need particular guidance and skill development in how to proceed with their care. The paper helps with this as it is able to offer suggestions, based on the findings. These include:
Offering a whole range of medications that are likely to be effective and helping the young people to choose what is appropriate for them, bearing in mind that ease of timing, discreet application and benefits to weight are priorities they have expressed.
Sharing information about the implications of having diabetes, not only verbally, but offering further information about sources of information and support, which are available in ways that they might be willing to access - online, Apps, peer support forums.
Involving the family in supporting the young person and emphasising how this can help. This includes giving practical guidance about food 'swaps' at little cost and simple activity increase, such as walking.
Exploring the young person's own perception of what having diabetes means and how to share the information (or not) with their friends and peers. This could also include directing them to online support for young people experiencing peer issues, such as bullying, in any context.
This is a very practical list and we would venture to add the consideration of introducing young people with Type 2 diabetes to each other and supporting their discussions, informally or in a group discussion format (2 or 3 counts as a group), as well as helping them to learn ways of effective self management and strategies for confidence building and relaxation.
Like some of the other suggestions above, there may well need to be the involvement of some specialist workers, who support young people. This could be another valuable investment, as they can, in turn, perhaps help to 'up skill' diabetes practitioners to support the young people with Type 2 diabetes they will inevitably meet in future.
This paper gives a wonderful opportunity and practical insights into this vital and growing group of people and their needs. As ever, we will be doing our bit to broadcast its findings and contribute ideas for practical implementation. It's a timely chance for us all to 'start as we mean to go on' and really make a difference to their future.
Post-blog update
Hot on the heels of this blog post, we became aware of another paper about young people with Type 2 diabetes, this time from Australia and reporting work with young adults between 18 and 39. The authors compared a group of people of this age with the same number of older people also with Type 2 diabetes, and with the same number and age range of people with Type 1 diabetes. They investigated anxiety and depression levels, medication taking behaviour and healthy eating and physical activity levels.
They found that the young people with Type 2 had more depression and were less likely to eat healthily than older people with Type 2, less likely than the same age group with Type 1 diabetes to be physically active, and less likely than either of the other groups to take insulin as recommended. The authors conclude that these young adults with Type 2 have particular needs in relation to psychology and self-care support.
This evidence seems to add to our conclusion above about the importance of the 'support spotlight' falling on these young people and their challenges, who need to be seen as distinct from either others with Type 2 or their Type 1 counterparts. As the NICE (National Institute for Health and Clinical Excellence) UK guidelines for managing Type 1, Type 2 and Children and Young People with Diabetes are all currently being updated, this paper also offers brilliantly timed messages.
References
Turner, KA., Percival, J., Dunger, DB., Olbers, T., Barrett, T., Shield, JPH. (2015). Adolescents' views and experiences of treatments for Type 2 diabetes: a qualitative study. Diabetic Medicine, 32, 250-256
Browne, JL., Nefs, G., Pouwer, F., Speight, J (2015). Depression, anxiety and self-care behaviours of young adults with Type 2 diabetes: results from the International Diabetes Management and Impact for Long-term Empowerment and Success (MILES) study. Diabetic Medicine, 32, 133-140
The researchers asked adolescents with Type 2 diabetes directly about their beliefs, experiences, wishes and needs in relation to their condition and gained some important insights. For example, that the young people generally were not willing to tell their peers about their condition, for fear of judgement and bullying; that they wanted medications that were discreet and effective (tablets better than injections; injections of non-insulin products rather than insulin, because of their perception of its relationship with severity of diabetes and insulin leading to weight gain); that they would seriously consider bariatric surgery for weight loss. They also seemed to lack support from others, e.g. family members, when they would value reminders to help take medication and sharing in lifestyle changes.
One of the most striking findings was that the young people in the study did not seem to be overly concerned about their Type 2 diabetes or particularly aware of its progress or prognosis. Some of this seemed to originate with the familiarity of the condition through other family members having it, so it seemed 'normal' for them to be also diagnosed. Also, where family members did not make lifestyle or food changes, it was very difficult for them to do this on their own or see the importance of this. On the other hand, could some also be explained by them not receiving this information or it being emphasised enough during their care encounters with professionals?
Professionals are only just coming across such young people with Type 2 diabetes and there are few in any single clinic. Hence it may well be that they need particular guidance and skill development in how to proceed with their care. The paper helps with this as it is able to offer suggestions, based on the findings. These include:
Offering a whole range of medications that are likely to be effective and helping the young people to choose what is appropriate for them, bearing in mind that ease of timing, discreet application and benefits to weight are priorities they have expressed.
Sharing information about the implications of having diabetes, not only verbally, but offering further information about sources of information and support, which are available in ways that they might be willing to access - online, Apps, peer support forums.
Involving the family in supporting the young person and emphasising how this can help. This includes giving practical guidance about food 'swaps' at little cost and simple activity increase, such as walking.
Exploring the young person's own perception of what having diabetes means and how to share the information (or not) with their friends and peers. This could also include directing them to online support for young people experiencing peer issues, such as bullying, in any context.
This is a very practical list and we would venture to add the consideration of introducing young people with Type 2 diabetes to each other and supporting their discussions, informally or in a group discussion format (2 or 3 counts as a group), as well as helping them to learn ways of effective self management and strategies for confidence building and relaxation.
Like some of the other suggestions above, there may well need to be the involvement of some specialist workers, who support young people. This could be another valuable investment, as they can, in turn, perhaps help to 'up skill' diabetes practitioners to support the young people with Type 2 diabetes they will inevitably meet in future.
This paper gives a wonderful opportunity and practical insights into this vital and growing group of people and their needs. As ever, we will be doing our bit to broadcast its findings and contribute ideas for practical implementation. It's a timely chance for us all to 'start as we mean to go on' and really make a difference to their future.
Post-blog update
Hot on the heels of this blog post, we became aware of another paper about young people with Type 2 diabetes, this time from Australia and reporting work with young adults between 18 and 39. The authors compared a group of people of this age with the same number of older people also with Type 2 diabetes, and with the same number and age range of people with Type 1 diabetes. They investigated anxiety and depression levels, medication taking behaviour and healthy eating and physical activity levels.
They found that the young people with Type 2 had more depression and were less likely to eat healthily than older people with Type 2, less likely than the same age group with Type 1 diabetes to be physically active, and less likely than either of the other groups to take insulin as recommended. The authors conclude that these young adults with Type 2 have particular needs in relation to psychology and self-care support.
This evidence seems to add to our conclusion above about the importance of the 'support spotlight' falling on these young people and their challenges, who need to be seen as distinct from either others with Type 2 or their Type 1 counterparts. As the NICE (National Institute for Health and Clinical Excellence) UK guidelines for managing Type 1, Type 2 and Children and Young People with Diabetes are all currently being updated, this paper also offers brilliantly timed messages.
References
Turner, KA., Percival, J., Dunger, DB., Olbers, T., Barrett, T., Shield, JPH. (2015). Adolescents' views and experiences of treatments for Type 2 diabetes: a qualitative study. Diabetic Medicine, 32, 250-256
Browne, JL., Nefs, G., Pouwer, F., Speight, J (2015). Depression, anxiety and self-care behaviours of young adults with Type 2 diabetes: results from the International Diabetes Management and Impact for Long-term Empowerment and Success (MILES) study. Diabetic Medicine, 32, 133-140
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