Diabetes UK Annual Professional Conference 2012: Forwards with a Backward Glance...

They say that past experience can influence the future and there was definitely a flavour of this in Glasgow this year. Over 2000 health professionals from around the globe gathered at this annual event for a cornucopia of clinical and scientific updates, professional networking, product exhibitions and of course socialising! This conference is a fixture in our calendar and this year we had the honour of presenting a main session entitled ‘patient centred practice: what it really means’.

The sense of retrospect came mainly from the named lectures: these are peer-nominated invited lectures in recognition of the contribution made in a particular field. The lectures themselves are named after people the organisation wishes to honour personally. By definition, the speaker looks back on their work and describes its importance and value. Two examples stood out for us this year: the Janet Kinson Lecture was given by a speaker who emphasised how much maths is needed for living with diabetes, for example for carb counting and calculating insulin pump rates,  and how a lack of maths ability can hinder diabetes management (other sessions described diabetes education courses which are starting to include maths lessons alongside the diabetes lessons, to help with this)

Another was the Arnold Bloom Lecture, which looked at the development of DAFNE, an education programme for Type 1 diabetes, through the determination of a group of professionals to emulate European models of teaching about diabetes. However, the current picture is that the UK is still short of the availability of places on this course and other similar ones, so there is still much to do going forward.

Looking to the future, a number of reports were published at the same time as the conference. These were both timely but moving, since they inevitably showed gaps in services. In particular we noticed the report on the gaps in structured children’s services, including psychological care and transitional care. This stood out because the presentation that launched the report contained video clips of parents and young people who ‘told it like it is’. Many eyes filled with tears at the bravery of a mother recounting how she had been told at clinic that ‘we only deal with the medical side of diabetes’ when she sought help for the huge emotional tsunami that had engulfed the family’s life since the diagnosis of her son’s diabetes. Another report included the variation by geography in the number of amputations for diabetes- related food and leg complications, and concluded that the lowest rates were found where services were structured and resourced properly. In a way, none of the information was new, but what Diabetes UK have been able to do is continue the fight to highlight the massive importance of these issues to individuals as well as populations and we salute them for this unwavering mission.

One very noticeable and unarguably new aspect to the conference was its colour! Diabetes UK have changed their logo and branding recently* and instead of a sea of blue and pink and the familiar pink hummingbird, the 21^st century DiABETES UK had arrived! This took a bit of getting used to, but 3 days in the ‘conference bubble’ made it feel a lot more normal. The sight of 150-plus fun-runners in the new style T-shirts, gathered bright and early on one of the mornings to run 5 kilometres round the conference venue, also added to the sense of recognition of the new colour and logo.

Other ‘snapshots’ from the conference which we felt give some clear messages for today and for the future, included:

• A recognition of how difficult it can be to manage diabetes day in, day out – the reality of self management is HARD WORK!
• How technology is really contributing to making life with diabetes easier, including the latest apps for carbohydrate counting, and insulin pumps
• How even the newest insulins’ profiles don’t always match exactly the timings of a rise in blood glucose levels after food, making it still tricky to achieve recommended levels
• 2 presentations on the subject of listening well, including the quote from one ‘listening is a healing and therapeutic agent’
• The symposium about Diabetes UK’s Peer Support telephone and email helpline**

And what of our own presentation? We were delighted that so many people attended – over 50 – considering the time slot, which was at the end of the 2^nd very busy day at conference. All those present took part in the activities we had designed, including a multiple choice quiz to work out the most person centred statement and a worksheet to share in groups how they could improve the environment in which people experience clinics and surgeries (for example how they are welcomed on arrival) as well as the consultation itself. Many good ideas and points were raised and discussed, including the memorable contribution from one participant at the end: ‘this has really made me wonder if I am as person centred as I think I am, I am definitely going to make changes’. One lucky participant also won one of our workshops in our prize draw at the end of the session and we are really looking forward to providing this later in the year.

The conference seemed to be a great success and we came away even more inspired and ready to work on the issues revealed by the research presented, and provide even more useful information and resources to meet the needs identified. Thank you Diabetes UK!

*         www.diabetes.org.uk

**         www.diabetes.org.uk/peer-support

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…

Can having ‘virtual diabetes’ teach doctors anything?

When you attend for a consultation for your diabetes, do you ever feel it would help if the health professional also had diabetes? Or if you’re a health professional, what do you say when you are asked “do you have diabetes?” or someone says “it’s alright for you, you don’t have to live with it every day like I do?”

A study presented at a recent meeting of diabetes specialist doctors told of 10 trainee specialists being asked to live with Type 1 diabetes for a week, incorporating it into their usual lives. Their ‘diabetes life’ involved giving mock injections, taking regular blood glucose measurements, recording how much carbohydrate they ate and being prepared for hypos. 

How did they get on? Perhaps not surprisingly, they forgot some tests and injections during the week, many did not record carbs and half of them did not carry a hypo kit. Most found injections and tests and the routine harder than they expected. So far, so normal – what a relief! Importantly, 9 of the 10 doctors said that their attitude in their clinics had changed as a result of taking part in this experiment.

Sadly, the short report did not reveal exactly how they had changed their practice (we are trying to find out), but we could perhaps guess that it was to have a lot more understanding of the demands of living with diabetes and the realisation that it is not easy to do boring, repetitive tasks every day on top of everything else.

Having more understanding is certain to be really helpful in making conversations in consultations more shared and realistic. We only hope that the 10^th doctor in the survey - who said their attitude had not changed - already understood what having diabetes meant – or perhaps even had it themselves!

There are plenty of health professionals who do have diabetes or live with it in some way, for example having partners, children or other family members with it. For many, it is the reason they specialised in diabetes in the first place. In our experience, health professionals have different attitudes to revealing their diabetes. Some seem to expect everyone to do what they do; some find it stressful, feel that they have to act as an example and may be judged on how they are managing their own diabetes; others choose not to tell anyone, to avoid their diabetes becoming the focus of the consultation rather than the person they are seeing. In short, just like anyone with diabetes, they cope with it in different ways and make choices about how much to incorporate it into their working lives.

Reaching a shared understanding in a consultation of what’s important to someone with diabetes plays a crucial role in creating a useful plan of action and making attending worthwhile. The lived experience of what it takes to really put instructions into practice is a welcome step towards this. The authors of the report recommend that it should be incorporated into specialist training for doctors. We wonder why this should not be the case for ALL diabetes specialist staff?

Tell us what you think – do health professionals ‘get it’ better if they have diabetes or experienced living with it like these doctors? Should 'virtual' diabetes be an essential part of training for people working in the field of diabetes?  the floor is open for your comments!

Reference:

Pokrajac, A. et al (2011). Insight into life with diabetes mellitus improves consultation skills in diabetes trainees: Association of British Clinical Diabetologists Spring Meeting 2011 Abstracts. Practical Diabetes, 28, 8, 362.

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 20^th 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.

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?