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

Remember, Remember…

Even though it’s the right day, the title of this blog doesn't continue with 'the 5th November' (as you might have been starting to sing in your head). Instead, the next line is 'remember, remember... all the basics of living with diabetes'. We're referring to those small actions and timely interventions that can make the crucial difference between diabetes fitting neatly into your life and you constantly feeling you're backpedalling to keep up with it and pick up the pieces.

Take blood testing for example... yes, it is a pain, can be messy, inconvenient, embarrassing even, but without it, maybe you get an embarrassing hypo, an inconvenient thirst or the annoying call of the loo every 5 minutes. You get the idea?

To celebrate World Diabetes Day this month, we will be publishing a brand new book with reminders of all these essentials, revisiting the basics of diabetes and answering some of those often heard questions-to-self 'why am I doing this?' or, more often 'how did I end up in this situation?' If you've ever experienced this, we may be able to help you - just watch this space and our website for more info on when this useful addition to your diabetes bookshelf is available!

And importantly in this blog, we also want to ‘remember, remember’ something else: World Diabetes Day itself. It's a day supported by the International Diabetes Federation and celebrated around the world on 14 November, the birthday of Frederick Banting. Banting was a member of the Nobel prizewinning team who discovered insulin back in the 1920s. Blue is the colour of the WDD symbol, and many countries, towns and cities light up their most iconic buildings in blue to mark the occasion. It's a day to reflect on what's needed in diabetes care here and now.

With so many days and weeks set aside for different conditions these days, it's easy to think this is just another one, albeit with a good gimmick. Here's why we think it's important...

In the 1920s, the treatment for diabetes looked simple: insulin transformed people from emaciated remnants of humanity to vital beings, restored like the biblical Lazarus to their families and to life. Many of those who were first treated with insulin went on to have long and fulfilling, even pioneering lives, like Elizabeth Hughes Gossett, who died in her 80s after over decades on insulin, and Robin Lawrence, the famous doctor and founder of the British Diabetic Association, still thriving as Diabetes UK.

A few years down the line and for very many more people with diabetes, however, the picture was not so rosy. From the miracle of restoring life, the ravages of long-term high blood glucose levels became clear. Lost limbs, blindness, kidney failure and miscarriage and stillbirth rates spiralled upwards among those with long-term diabetes. It became clear that there was much more to diabetes than taking a daily injection of insulin and preventing hypos at all costs. Landmark research studies followed, showing that these catastrophic complications CAN be prevented and careful surveillance of their health both for and by people with diabetes must be taken, throughout their lives. In addition, it’s now known that Type 2 diabetes itself can be prevented through specific identification and intervention among those at risk.

It's great to say that modern day diabetes care can offer this care and prevention. Unfortunately, though, modern day diabetes care is not everywhere and not for everyone. Some governments still ignore the vast problem of diabetes among their people and some people still miss their care appointments. Focussing on education and campaigning, and highlighting the tragedies of missed diagnoses and lost working lives, are all important features of World Diabetes Day, as well as celebrating the successes and massive strides forward that are made by dedicated scientists, health professionals and people with diabetes themselves each year.

So don't forget to remember World Diabetes Day and maybe mark it with something special, however small, that signals your commitment to spreading the word. We've put together some ideas to start you off...

• Tell someone (anyone!), a single fact about diabetes, or your own diabetes, to raise awareness about it and its impact
• Dress in blue for the day - and tell people why
• Make a small donation to a local or national diabetes charity
• Make some blue-iced cupcakes and take them to work or school
• Visit the World Diabetes Day website to find out more about diabetes worldwide and spread this information on your social networking site
• Make a commitment to yourself if you have diabetes, to find out more about a particular aspect, or get help with something that is concerning you about it

Whatever you do, it will make a difference. Oh, and another thing to remember… put 14 November in next year’s diary to do it all again!

Websites

World Diabetes Day

Successful Diabetes

To attend clinic or not to attend it - but is that really the question?

A short article, published in the latest issue of Diabetic Medicine (the professional journal of Diabetes UK), describes research into whether young adults in the UK choose to attend their clinic appointments or not. The authors looked at records of attendance and also interviewed 17 young people about what influenced whether they attended or not. 

The results showed that, rather than might be expected, having ‘poor control’ (defined as having a high HbA1c level), made it less likely that people would attend, because of the fear of being judged by health professionals. Another major reason for not going to clinic was literally not being able to get there because of work or study commitments, including the attitudes of employers to taking time off for health-related appointments. The authors conclude that health professionals need to be more supportive and non judgemental, and also that reminders about appointments and flexible clinic hours are factors which will encourage people to attend more.

That sounds fairly straightforward, doesn’t it? Or does it? Sending a text or email reminder is a good idea and a very simple task, but does simply knowing about an appointment mean that people will attend it? The decision-making sounds much more complex than that, given the information about potentially feeling judged. In our experience, this complexity is not confined to young adults and whether to attend is often based on what the answers might be to questions such as these:

‘I already know my glucose levels have been high recently - will I hear bad news?’

‘Do I trust them enough to tell them how bad things are at home at the moment?’

‘Can I deal with MORE criticism right now?’

And even when things are going well, the questions or thoughts might include:

‘Is it a good use of my day off, to wait for ages, just to be told to come back in 6 months and keep up the good work?’

‘It’s a welcome break not to have to think about it all at the moment while things are going well’

On the other hand, health professionals pride themselves on being available to help people who are struggling and of course, know very well the potential negative outcomes of not attending clinic appointments or having longstanding raised glucose levels. Some health professionals, such as GPs, are actually paid higher amounts of money if people in their care have better diabetes  (measured by HbA1c). They often genuinely worry about people who don’t attend and also become frustrated about empty appointments that could have been used for other people, and other upsets to the ‘system’. It’s no surprise in a way that a judgemental attitude can creep in, although most health professionals would be horrified to think they were being seen in that light.

So the real question is, How can we achieve success with lifelong attendance at clinic visits without damaging the delicate mix of emotions, self esteem and ‘having a life’ for both people with diabetes AND health professionals? Here are a few ideas of what could happen, which both people with diabetes and health professionals could influence:

·      Start as you mean to go on, with a view that a consultation is a partnership, not a dictatorship. You are working together on the ‘diabetes project’ that is everyday life with diabetes for the person with it

·      Build in a bit of preparation for the consultation, for example, the person with diabetes requesting or being offered the chance to see their test results before they attend, so that they can decide what aspects they want to discuss. Also, considering their own priorities and questions for the visit

·      Starting every consultation with a discussion of how the person with diabetes is feeling and thinking and what questions they have, rather than with what the health professionals think. This way of doing things is known to increase satisfaction and attendance rates

·      Thinking of the person with diabetes as a person rather than a patient, and a health professional as a supporter (and also a person!) rather than an authority figure. Terminology, as we explored in an earlier blog, can make a huge difference to attitude and relationships

·      Finally, recognise that there is always a reason for the way people behave. Having some curiosity and care, and being brave enough to explore what is keeping people away from clinics, or why the relationship between health professional and person with diabetes doesn’t seem to be working, could make a vast difference to the future.

What do you think of these ideas – and how does all this fit with your experiences of either providing or receiving care in a diabetes clinic system?

Reference

Snow, R., Fulop, N. (2012). Understanding issues associated with attending a young adult diabetes clinic: a case study. Diabetic Medicine, 29,2, 257-259

Indecision about me, without me? A survival guide to the new NHS in England

The UK government’s health reforms are edging ever closer to being enshrined in law. They represent a massive shake up of the structure and funding of health care in England, and the care people receive for long term conditions is right at the heart of the changes. But that doesn’t mean the NHS and diabetes care is safe – far from it. Read on…

We have followed the progress of the health reforms carefully since they were introduced in the White Paper ‘Equity and Excellence: Liberating the NHS’ in 2010. This paper lays out the plans to hand funding for local health care to groups of GP practices, to be called Clinical Commissioning Groups (CCGs). It also shows how public views of health services will be incorporated more effectively into planning, through an organisation called Healthwatch England. The CCGs will be able to commission, or in other words buy, care from any provider that meets the needs of their population. Some services will be centrally commissioned by a body called the NHS Commissioning Board.

Public health is also receiving a makeover, with Directors of Public Health being appointed for each locality. These posts will be closely linked with local authorities, and detailed plans for this service are being announced shortly.

Meeting people’s health needs more locally and more effectively is one of the main promises of the reforms. The aim of making sure that people are much more involved in decisions that are made about their condition and treatment is also emphasised. The phrase ‘no decision about me, without me’ is used to describe this, and indicates the ambitious nature of the proposed changes. More choice is envisaged too, with, for example, the chance to choose a GP away from the area where you live (for example, nearer to your workplace), and also the ability to change your GP more frequently and easily. 

Some of these ideas sound pretty good – more choice, and having more of a say in your consultations, can be a good thing. So too giving more purchasing power to local GPs who well know the needs of people using their services. However, it’s one thing to commission economic and prompt services for procedures such as cataract surgery or hip replacements, but quite another to ensure that diabetes is looked after properly. This includes a lifetime of screening for complications, the provision of regular and accurate prescriptions, occasional unpredictable acute episodes that might require hospital stays, plus an ongoing structured education programme being in place and monitored.

The changes proposed above have yet to become law. The Health and Social Care Bill is still going through parliament, and there is still a huge amount of detail being argued about. There have been a number of amendments already and may be more, as those who are against the current format try to curb its more extreme measures and protect the NHS as a national organisation by ensuring the Secretary of State for Health retains overall accountability for its performance. 

There is so much to consider, and so much associated politics, it would be easy to patiently await the ‘brave new world’ when the Bill becomes law. On the other hand, there is much at stake. The last decade has seen unprecedented advances in diabetes care in terms of treatments which are inevitably more expensive, as well as more structured care and an increased emphasis on the availability of structured education. It has resulted in more people than ever receiving systematic appointments for annual review, which in turn results in less complications or at least the complications being detected and treated earlier. It’s possible that ignoring the impending NHS changes might mean sleepwalking into a minefield of disorganisation and fragmentation of all this good work. Another huge ‘but’ is that the changes are already starting and they have to be delivered at the same time as 20 billion pounds worth of savings have to be found by the NHS, on the Government’s orders,  to help deal with the ongoing economic crisis in the country as a whole. 

Everyone knows that reorganisation is costly, even thought it is meant to save money in the long run, and it’s also said that ‘the best way to predict the future is to invent it’. Since the consequences of any changes made will affect people with diabetes themselves, we have created a mini ‘survival guide’ to the new NHS so that you can look after yourself or your loved one with diabetes, and you come out of it with your diabetes care intact, even if there is chaos in the system during the changeover period. 

The SD Survival Guide to the New NHS:

• Find out what’s going to happen locally – via your diabetes service, your GP or your Primary Care Trust website – find the contact details via www.dh.gov.uk or www.nhs.uk. You don’t always have to make an appointment in person, you can phone or email them and ask them to update you regularly, and some websites allow you to sign up to be informed of the latest developments
• Read about the NHS reforms in relation to diabetes, for example via NHS Diabetes (www.diabetes.nhs.uk) or Diabetes UK (www.diabetes.org.uk)
• Keep track of the changes and the Health bill’s progress towards law, via its pages on the UK parliament website, at www.parliament.uk (search Health and Social Care Bill, 2010-11) and sign up for automatic updates
• Spend a bit of time thinking ‘what if’ in relation to your own diabetes care. For example, ‘what if my GP decides to buy care from a different hospital than the one I go to at present?’; ‘what if I decide to change my GP?’ ‘what if I don’t’ receive the recommended level of care from a new provider?’ etc. The issue for you will be individual, but from this you can create questions to put to your local services
• Contact your MP and ask about the changes and how they will provide for diabetes services in your area. Again, you can email or tweet as well as attend their surgery in person. If you don’t know who your MP is, now is the time to find out! There’s a complete list of MPs at www.parliament.uk/mps-lords-and-offices/mps/
• Be aware when your annual review for diabetes is due, and ensure you have an appointment for it as the time approaches. If your appointments are postponed or changed, ensure you have a new date rather than an open invitation to attend
• Be proactive: if there are changes to your local service, don’t assume you will be given information or a new service will understand exactly what you need – ensure you have a contact number and remind yourself to check regularly what is happening.
• Ask questions: you or your loved one with diabetes are the ones who will be affected by changes, especially as a new system is put in place. Keep a list of questions and don’t be afraid to ask them!

We want the new NHS to be even better than before, and also to provide the very best diabetes care. The proposed changes offer a lot of potential – but it can’t be realised alone. We all have to do our bit as architects, building the system that creates the reality of ‘no decision about me, without me’. 

What’s your view of the NHS changes?  Are you worried what might happen to your diabetes care or confident that your needs will be met?  The discussion is open!

Mind your language – Oz Style!

Anyone who followed the recent debate about the actor Ricky Gervais’s use in tweets of the word ‘mong’ will be in no doubt that the terminology we use is under scrutiny everywhere, and people can be touched personally by terms even though they may have been given a new meaning by a new generation. It’s the same with diabetes – do you shudder at the word ‘diabetic’, shout aloud at the television when presenters talk about ‘non compliant patients’ or simply shrug your shoulders and say “they’re just words, get over it”?

Whatever your view, there are some strong feelings about language and diabetes. One in particular is that the language we use reflects the views we hold and these can slip over into how we treat people – for example in hospital, someone being referred to as ‘the diabetic in bed 5’, or in a clinic as ‘the patient’, suggests they are talking about objects rather than actual individuals. We once heard someone describe this experience in a clinic as “they might as well ask for the ‘next pancreas’ please”! 

Now Diabetes Australia have published ‘A new language for diabetes’, a position statement that aims to improve communications with and about people with diabetes. Its 10 summary recommendations include:

• Avoid jargon
• Avoid judgemental terms
• Be holistic – don’t just consider the medical aspects
• Focus on what’s achievable
• Use language that is positive and supportive, and forward rather than backward-looking

Pretty straightforward stuff you might think, but for anyone remaining in any doubt, the report also includes some helpful examples to show exactly what words and expressions could be used as alternatives to those which don't. For example:

instead of:                                    use this:

diabetic/sufferer/patient         person living with diabetes

diabetes control                           diabetes management

failed to / failure                           has not, did not

blood testing                            self monitoring or checking

There’s nothing not to like about this document – with the possible exception of the sadness that it needs to exist at all. It seems such a shame that people need to be reminded of the very personal nature of diabetes and the efforts that people make day in day out to keep on top of a condition that most definitely does not keep to the ‘rules’ - as a lady with type 2 diabetes once put it to a health professional “I’m afraid my body hasn’t read your text book!”

We welcome this statement with open arms, particularly as it is so consistent with our own philosophy of personal, individual care and attention, which we apply to all our own writing and publications.

Our Australian colleagues have given an example to all other countries and we hope many others will adopt this idea. Diabetes Australia - in the plainest possible language - thank you!

The full statement is available to download FREE from the ‘SD Focus’ section of our website home page. For your copy, simply go to www.successfuldiabetes.com and log in or register and log in.

Reference

Diabetes Australia. A new language for diabetes: improving communications with and about people with diabetes.

How much does the language people use in relation to diabetes matter to you? We'd love to know, so feel free to share your thoughts in the discussion below…

Checklists - the way forward for diabetes care?

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

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

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

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

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

SD ‘Supporting Self Care’ Checklist

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

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