With very few exceptions, including the absolute necessity for insulin replacement in Type 1 and the all-round benefits of regular physical activity, for the vast majority, it’s becoming ever clearer that diabetes is a condition where one size most definitely does not fit all. Not in terms of treatments, delivery devices, monitoring, emotional response, coping mechanisms or even the exact diagnosis. As the famous Monty Python quote goes ‘you’re all individuals’, and in this case, there is no little voice piping up, ‘I’m not!’
From SD’s point of view, this is very much A Good Thing, and one which we have long promoted, so it was very heartening to see a couple of recent publications that seem to emphasise this point, albeit in different ways
Firstly, the updated ‘Diabetes UK evidence-based nutrition guidelines for the prevention and management of diabetes’ painstakingly repeat throughout their recommendations that individual’s food preferences, foods rather than nutrients and broader considerations of weight, activity, medications and the like, need to be made alongside simply their ‘diet’ in general or sugar intake in particular
This is a very welcome departure and one, as the recommendations also say, that will be more accessible and relevant to people living with diabetes as well as health professionals. Notwithstanding that, the recommendations are very clear that a reduction in processed foods, refined carbohydrates and an aim for Mediterranean-style healthy eating is valuable. Again, this reflects the evidence without being overly prescriptive as perhaps, previous guidelines have been wont to do
The need for education for both prevention of, and living with, diabetes features heavily in what we might call these new ‘eating’ guidelines. This brings us to the other recent eye-catching publication. This is a review of diabetes self management education programmes , from an internationally known set of authors. The paper describes that for many people with diabetes, education programmes, however effective, are simply not accessible. The authors give the 2 top barriers to uptake as, firstly, that health professionals do not sufficiently recommend attendance and secondly, that people living with diabetes believe there is no or little need for them to attend. Unsurprisingly, the review concludes that both health professionals and people with diabetes may need help to see the importance and benefits of attendance
In a way, there is nothing new about these findings and recommendations. They have been made now in many, many publications, this is just the latest and a high profile one at that. What is striking is, in the UK at least, how little the principles of identification of individual needs and preferences reflecting the ‘one size does not fit all’ approach, seems to apply to providing a range of educational options for people and also helping health professionals get better at ‘selling’ the programmes within consultations and clinics
Recent monies have been allocated by NHS England to diabetes education – obviously this is welcome – but many projects to spend these ££ seem to focus on improving the number of places on programmes, rather than encouraging people to actually attend - closing the referral/attendance gap, as it were
Attention on attendance would appear absolutely vital if the money is to be well spent and reap benefits, yet this doesn’t appear to really be happening, except in some enlightened places that we are aware of, among them Bexley, Walsall and Bedford CCGs, who have taken a concerted and importantly, varied, approach to both the top barriers mentioned above and from previous research
Their interventions include using one-to-one programmes like the Diabetes Manual Programme and also approaching health professionals directly with ways they can quickly and simply (essential features!) provide encouragement that directly counters the known barriers to attendance. In Bedford, we recently helped to create a bespoke webinar for health professionals to participate in, either live or recorded, from the comfort of their desk or office. Early results from this ‘lots of sizes’ approach to dealing with the attendance conundrum in are showing both greater enthusiasm among health professionals and greater attendance among people with Type 2 diabetes, as a recent article in Healthcare Leader journal showed
SD is delighted to have played a part in providing the training and development of these innovations to help achieve these results, in these places, (and there are no doubt others around or upcoming),and providing resources to help encourage attendance, but there is still so much more to do and so much more effort to be made. There is a wide range of reasons that prevent people from attending education, and, in the same way the food recommendations have been made, these need to be systematically addressed with a similarly wide range of initiatives. One size doesn’t, and never will, fit all!
References:
Chatterjee, S et al (2018). Structured education programmes in Type 1 and Type 2 diabetes: a narrative review and current innovations. The Lancet Diabetes and Endocrinology, 6(2) 130-142
Dyson, PA et al (2018). Diabetes UK evidence-based nutrition guidelines for the prevention and management of diabetes. Diabetic Medicine, 35, 541-547
Healthcare Leader News (online) How our CCG Secured £500k to Look After Patients with Diabetes’ 30 April, 2018
Successful Diabetes. How to Encourage Attendance at Diabetes Clinics and Education. Available from SD Downloads
Showing posts with label Type 1 diabetes. Show all posts
Showing posts with label Type 1 diabetes. Show all posts
Wednesday, 9 May 2018
Tuesday, 19 May 2015
Got diabetes? Welcome to the family
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
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
Friday, 31 May 2013
Help with Hurdling: Getting over the Barriers to Self Management
A recent review article in the journal 'Diabetic Medicine' described in detail the kind of barriers that get in the way of people with diabetes from being able to successfully self manage their condition, that is, taking the actions that are likely to promote and maintain health, such as measuring blood glucose, taking and adjusting medication, looking after feet, eating healthily being physically active and taking steps to prevent or deal promptly with hypoglycaemia and high blood glucose levels.
While a review article doesn’t aim to make recommendations for changes in practice, in describing the evidence for each of the barriers, it does reveal what is effective or less effective. This is helpful because, ideally, it gives the chance for diabetes services and health professionals to use the evidence base to implement effective strategies for promoting and supporting self management and ‘lose’ the less effective ones.
Unfortunately this is not always what happens. Translating knowledge into action in relation to living with diabetes is in fact cited as one of the barriers. For example, the knowledge that persistent high blood glucose levels can lead to long term complications does not lead most people to keep their blood glucose levels within recommended ranges all the time. And it is exactly the same with health professionals – the knowledge that telling people what to do, advice giving and ‘warnings’ about complications is not effective in helping people manage their diabetes, does not stop them doing it regularly. There are other factors involved in effectively taking action and some of these are illuminated in this review article.
In keeping with previous blogs, I would like to suggest that in the evidence for effectiveness cited for each of the factors, there are as many messages for people working with diabetes as there are for those living with it, and reflecting and taking action on these could potentially help us all to feel more successful and satisfied in our efforts.
So, to make it easier than reading the whole paper in a lofty journal – who has time for that?! - here’s an SD 'key points' guide for both health professionals AND people with diabetes, along with some of the strategies that really work to promote and prize self management of diabetes, based on the evidence in this review. Think of it as your ‘hurdling guide’ - ideas for getting over the barriers when they arise!
‘Your SD Hurdling Guide’
Knowledge is important in self management. Unless someone knows what to do, why and when, they are unlikely to take useful action. However, Knowledge delivered once, or in a didactic or authoritarian way is not effective. Knowledge given in the context of an opportunity to use it, for example as part of an activity or as a result of someone's questions is much more helpful and likely to be remembered. Also, information given at diagnosis, is particularly likely to be forgotten, so must be revisited and checked. So, health professionals need to provide education and ask if it has been received, and for people learning about diabetes, they need to generate questions they need the answers to, and also check from time to time, to ensure their knowledge is accurate.
Motivation to take care of diabetes is influenced by how severe someone thinks their condition is, and how likely they believe themselves to be at risk of problems from it. Also, taking a particular action, for example starting insulin or taking up a new activity, will have benefits and barriers which will also determine whether it happens. So, health professionals need to explore with people what their perceptions are of severity, personal risk and benefits and barriers, rather than just dictate what actions they should take. For people with diabetes, being aware of the pros and cons for them of taking a particular action, and being prepared to discuss these in a consultation is very useful.
A higher level of confidence in self management makes it more likely that someone will do this effectively. Confidence can be measured on a simple 0-10 (high) scale, with discussion of the number given and working out what the barriers are if confidence is low. Discussions about confidence are vital, to shed light on what a person feels more or less able to achieve. For health professionals, this means giving people an opportunity to consider and assess their confidence and discuss it with them. For people with diabetes, it means being able to work out what they feel less confident about and why and what might improve their score in these areas.
Day to day problem solving is associated with better self management. Problem solving involves first acknowledging a problem, then working out what would improve the situation (a goal) and what action needs to be taken to achieve this. For health professionals, this means that consultations need to be based around what problems the person with diabetes is currently troubled by, then working together to set a goal and action plan. For the person with diabetes, reflection on their key problems and their preferred ways to solve them, and actively practising problem solving is helpful, to make it become an everyday habit.
Finally, social support, that is the availability of help from others, is an important factor in self managing diabetes. Support refers not only to practical, but emotional and informational help as well. People with more support seem to be more successful at taking care of their diabetes. This means that health professionals need to explore with people what kind of support they have and ways they could access more if they need it. For people with diabetes, the implication of this is to consider who and how they receive support and affirmation in managing their condition, and where there are gaps. Also, to recognise that they may need to ask for, or set up support rather than feeling like they have to 'soldier on' alone or ignore their condition for fear of what others may think.
Reference
Ahola, AJ., Groop, P-H. (2013). Barriers to self management of diabetes. Diabetic Medicine, 30, 413-420
While a review article doesn’t aim to make recommendations for changes in practice, in describing the evidence for each of the barriers, it does reveal what is effective or less effective. This is helpful because, ideally, it gives the chance for diabetes services and health professionals to use the evidence base to implement effective strategies for promoting and supporting self management and ‘lose’ the less effective ones.
Unfortunately this is not always what happens. Translating knowledge into action in relation to living with diabetes is in fact cited as one of the barriers. For example, the knowledge that persistent high blood glucose levels can lead to long term complications does not lead most people to keep their blood glucose levels within recommended ranges all the time. And it is exactly the same with health professionals – the knowledge that telling people what to do, advice giving and ‘warnings’ about complications is not effective in helping people manage their diabetes, does not stop them doing it regularly. There are other factors involved in effectively taking action and some of these are illuminated in this review article.
In keeping with previous blogs, I would like to suggest that in the evidence for effectiveness cited for each of the factors, there are as many messages for people working with diabetes as there are for those living with it, and reflecting and taking action on these could potentially help us all to feel more successful and satisfied in our efforts.
So, to make it easier than reading the whole paper in a lofty journal – who has time for that?! - here’s an SD 'key points' guide for both health professionals AND people with diabetes, along with some of the strategies that really work to promote and prize self management of diabetes, based on the evidence in this review. Think of it as your ‘hurdling guide’ - ideas for getting over the barriers when they arise!
‘Your SD Hurdling Guide’
Knowledge is important in self management. Unless someone knows what to do, why and when, they are unlikely to take useful action. However, Knowledge delivered once, or in a didactic or authoritarian way is not effective. Knowledge given in the context of an opportunity to use it, for example as part of an activity or as a result of someone's questions is much more helpful and likely to be remembered. Also, information given at diagnosis, is particularly likely to be forgotten, so must be revisited and checked. So, health professionals need to provide education and ask if it has been received, and for people learning about diabetes, they need to generate questions they need the answers to, and also check from time to time, to ensure their knowledge is accurate.
Motivation to take care of diabetes is influenced by how severe someone thinks their condition is, and how likely they believe themselves to be at risk of problems from it. Also, taking a particular action, for example starting insulin or taking up a new activity, will have benefits and barriers which will also determine whether it happens. So, health professionals need to explore with people what their perceptions are of severity, personal risk and benefits and barriers, rather than just dictate what actions they should take. For people with diabetes, being aware of the pros and cons for them of taking a particular action, and being prepared to discuss these in a consultation is very useful.
A higher level of confidence in self management makes it more likely that someone will do this effectively. Confidence can be measured on a simple 0-10 (high) scale, with discussion of the number given and working out what the barriers are if confidence is low. Discussions about confidence are vital, to shed light on what a person feels more or less able to achieve. For health professionals, this means giving people an opportunity to consider and assess their confidence and discuss it with them. For people with diabetes, it means being able to work out what they feel less confident about and why and what might improve their score in these areas.
Day to day problem solving is associated with better self management. Problem solving involves first acknowledging a problem, then working out what would improve the situation (a goal) and what action needs to be taken to achieve this. For health professionals, this means that consultations need to be based around what problems the person with diabetes is currently troubled by, then working together to set a goal and action plan. For the person with diabetes, reflection on their key problems and their preferred ways to solve them, and actively practising problem solving is helpful, to make it become an everyday habit.
Finally, social support, that is the availability of help from others, is an important factor in self managing diabetes. Support refers not only to practical, but emotional and informational help as well. People with more support seem to be more successful at taking care of their diabetes. This means that health professionals need to explore with people what kind of support they have and ways they could access more if they need it. For people with diabetes, the implication of this is to consider who and how they receive support and affirmation in managing their condition, and where there are gaps. Also, to recognise that they may need to ask for, or set up support rather than feeling like they have to 'soldier on' alone or ignore their condition for fear of what others may think.
Reference
Ahola, AJ., Groop, P-H. (2013). Barriers to self management of diabetes. Diabetic Medicine, 30, 413-420
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
Sunday, 13 November 2011
Brittle or just individual?
A chilling report in a diabetes journal this month has revealed that of 33 women diagnosed 20 years ago with ‘brittle diabetes’, only 20 could be traced and of these, 10 had died.
The term ‘brittle diabetes’ is used to describe very unstable diabetes, typically in young women with Type 1. Its features include frequent, lengthy hospital admissions, often for diabetic ketoacidosis. The term has been in use since the 1930s, (shortly after insulin was first discovered and used as a life-saving treatment) and in the last 2 decades of the 20th century, there was a great deal of interest and reporting of the condition. One common conclusion of studies that could not identify a physical reason for the problem was that the people affected must be bringing it on themselves by ‘interfering’ with their treatment, through not giving themselves any or enough insulin. Such assumed behaviour is described as ‘manipulation’.
20 years on, this current report focuses on interviews with the 10 women who were traced. What is striking is that, when asked whether they had manipulated their treatment, 8 of the 10 were adamant that they had not and some still felt extremely angry to have been accused of this. The authors seemed to disregard the claims of these women, citing the fact that some had had relatives present when they were interviewed, whereas those who admitted manipulation were interviewed alone.
What has happened to these still-young women (their average age now is only 42 years) is clearly very serious. They have poor social lives, some have mental health problems, and some still have diabetes that is really difficult to manage. Tragically, some were advised not to have children at the time of their ‘brittle diabetes’, advice which was never revisited as they grew older, resulting in 7 of them not having had a family. Most tragic of all are the 10 who lost their lives, presumably as a result of diabetes itself. There is also the question of those who cannot be traced – what happened to them?
What are we to make of all this? Regardless of the terminology, the research really highlights that some people have more of a struggle than others with their diabetes and so need more support. This study was confined to women because in the 1980s and 90s brittle diabetes was thought to be exclusively an issue for them. Nowadays, it’s known that men often suffer unstable and hard-to-manage diabetes, too – which at least shows some positive change in attitudes about gender differences in our health services. Despite the effort it takes to keep in touch, to keep records and above all be empathic, the outcomes of this example group give a clear message that diabetes services need to invest, perhaps heavily, in the small group of people who experience such difficulties with their diabetes, to literally save their lives. It’s true that there are much better systems and ways of keeping in contact today than there were 20 years ago, which serves to make this task easier – but the commitment to its importance is the most vital ingredient.
Perhaps this sort of research also illuminates, with the advantage of looking back over time, that periods of real difficulty can be overcome and can pass, even though their legacy can bring its own troubles and the need for ongoing support to help with managing these.
However, the main message from this work could be that health professionals must always beware of assumptions and attributions that label and blame people unnecessarily just because what is happening to them and their diabetes defies a medical diagnosis.
Does any of this ring true for you and your experience? Why not add your views to the discussion…
Reference
Cartwright, A. et al (2011). Life quality and experience among long term survivors of brittle type 1 diabetes mellitus. Practical Diabetes, 28, 8, 332-335.
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