DESANG ISSUE 13 How to Train Your Doctor by Sue Marshall

ISSUE 13

DESANG magazine

HOW TO TRAIN YOUR DOCTOR (And Yourself)

Top tips from the Docs

PLUS

• New Products • Groovy giveaways • News (for T1 and T2)

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NEW

Editor’s comment... CONTENTS

Spicing it up

diagnosis of diabetes means that you’re about to enter into along-term relationship with a healthcare team. A clinic appointment is valuable time, so plan for it to get the most from it. Both sides will need to work on that relationship – it’s a partnership, not a competition. Diabetics have to handle their own care on a daily and may only see our doctor three or four times a year. As the patient, we might be a little on edge, but with care we can express ourselves with confidence and get the results we all want – our longterm health.

Sue Marshall Published by Desang Ltd the aim of this newsletter is to bring news and information to people living with diabetes. Please check all matters concerning how you handle your health with your healthcare team. We welcome any feedback on the magazine or ideas for future articles. Editor: Sue Marshall sue.marshall@desang.net Design: rehabdesign

– See p.6 to enter a giveaway for a new simple cookbook on using spices in cooking to add flavour instead of sugar, salt or fat.

DIABETES KIT...

Super syrups that can halt a hypo. Expert advice from the new Accu-Chek Aviva Expert blood testing system. Keep topped up while on the trot with Swiggies, drinks bottles you keep on your wrist (with giveaway).

NEWS...

ACT study by Bayer confirms benefits of multiple testing. Stunningly simple but yummy spice cook book (with giveaway). A look at the question, ‘is sugar toxic?’ Can the TB vaccine also boost insulin production, even in long-term T1s?

LIVING

That clinic appointment is valuable time, so plan for it and get yourself into training to make the best of it. We talk to some doctors (and a diabetic doctor) about how to get the most out of your visit.

KIT

Expert in your pocket For those of us on multiple daily injections (known as MDI), many of us know about varying our insulin doses around the food we’re taking. This blood testing system has an on-board ‘advisor’ to help you gauge the correct insulin dose based on your carbs, so you do need to know a little about

carb-counting to use it. Test your blood glucose with this meter, enter your carbs and the meter will give you advice on your dose (bolus). In this way you can have greater confidence in how to use your blood glucose results to achieve the kind of blood test results you want to see, and avoid hypos in the process. This meter is not available in the shops due to the fact that it needs to be set up around your own needs – such as your insulin-to-carbohydrate ratios – best done at first with an expert to hand, in the form of a diabetes specialist nurse or doctor. So if you would like to know more about Accu-Chek Aviva Expert, talk to your diabetes specialist nurse or see these links UK www.accu-chek. co.uk/desangexpert or Ireland www.accu-chek.ie/desangexpert

How sweet it is GSF-Syrup is the new name for HypoFit, the name reflecting the components of this sugar source and potential hypo-halter. The fluid comprises glucose, sucrose and fructose (hence GSF) that provide a more stable way to bring yourself out of hypo. The sugars absorb at different rates, so one gets into your system really quickly, the others a bit slower – this way you come out of hypo with a reduced chance of going back into a low blood sugar. As well as the original box of 12 sachets

(around £14.00 per box), there is a now a 3-sachet option (each sachet has 18gms containing 13gms of usable sugars). Available from Arctic Medical and www.desang.net

Taking a Swig

Cleverly designed to comfortably strap to your wrist or over clothing or a sweat band at a weight that does not affect arm movements yet provides you with more than the recommended fluid for a work out and easy to refill when on your wrist where ever you are. Diabetics could fill with orange juice to keep sugars up while exercising. You can freeze them, so they can also be great for lowering body temperature (many runners use in this way with an energy drink that’s been frozen). Dishwasher safe and BPA free, they are £9.95p for a set of 2 plus P&P from www.swiggiesuk.com

GIVEAWAY

We have five sets of Swiggies to giveaway. Send your name and address in an email with the subject line ‘swiggies’ to info@desang.net for a chance to win one.

TO HELP YOU MANAGE YOUR DIABETES Introducing Bayer’s CONTOUR® USB, the first blood glucose meter with on-board GLUCOFACTS® DELUXE diabetes management software. Simply test your blood glucose, then plug CONTOUR® USB into your computer to easily analyse test results and trends, and gain the knowledge that can help you lower your HbA1c.

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NEWS

Taking ACTion People with diabetes, especially those treated with insulin, may achieve better blood glucose control when they understand the impact of food on blood glucose and they utilize useful advanced blood glucose meter features such as meal markers and audible reminders. Structured self-monitoring of blood glucose (SMBG) may be integral to attaining optimal glycemic control. Further, understanding and utilization of particular advanced blood glucose meters’ (BGM) features may improve the value of selfmonitoring of blood glucose. This is the result of the new ACT (Actions with the Contour Blood Glucose Meter and Behaviors in Frequent Testers), study sponsored by Bayer. The study evaluated the impact of diabetes education plus use of advanced BGM features versus diabetes education plus use of meters with basic features. At the end of the study, about one quarter of study participants (24% in basic group, 23% in advanced group) said that remembering to test their blood glucose before meals is difficult. However, when asked about remembering to test after meals, 55% of participants who used basic meter features said it was difficult to remember to test their blood glucose after meals versus 23% of those that used the advanced meter features. Thus, utilizing the meal marker feature made

SPICE IT UP

remembering to test after meals easier. More than 61% of participants who used the advanced features said they better understood how to make decisions on their own at home and 66% had more confidence in their meal choices since they started testing pre-and post-meal blood sugars. 72% of study participants who used the advanced features said they could use their meters in a more helpful way. The results of the ACT study will help us to identify areas of patient and professional education providing insight for more focused development and improvements in products and their features, such as with the Bayer Contour USB meter as well as new services Bayer can provide for its customers.

SPECIAL OFFER

Use code USBDSE115 to get £5 off the Bayer Contour USB meter here

John Gregory-Smith’s new book has more than 100 recipes, each of which uses no more than five spices. Spices are naturally healthy and are a great alternative to just adding in salt and fat to boost taste. Spices relevant today as they have always been, but people can find the sheer choice and variety of spices confusing and equate them to endless shopping lists or old jars sitting in their kitchen cupboard. This book will help even the sceptical to create flavoursome recipes such as Vietnamese Star Anise & Lemongrass Chicken Claypot, Mexican Chicken with Yogurt & Almonds, Persian Saffron and Honey Lamb Stew, Coconut & Lemongrass Salmon Curry, Chilli & Basil Scallops, Mayan Hot Chocolate and Mexican Cinnamon Peaches. The book retails at £20 www.johngregorysmith.com

GIVEAWAY

We have two copies of this gorgeous book to give to readers. Send an email with your name and address and ‘spicey’ on the subject line to info@desang.net

NEWS

Is sugar toxic? In an article taken from the New York Times Magazine published in April 2011, Gary Traube reported, “On May 26, 2009, Robert Lustig gave a lecture called “Sugar: The Bitter Truth,” which was posted on YouTube the following July. Since then, it has been viewed well over 800,000 times, gaining new viewers at a rate of about 50,000 per

month, fairly remarkable numbers for a 90minute discussion of the nuances of fructose biochemistry and human physiology. The viral success of his lecture, though, has little to do with Lustig’s impressive credentials and far more with the persuasive case he makes that sugar is a “toxin” or a “poison,” terms he uses together 13 times through the course of the lecture, in addition to the five references to sugar as merely “evil.” And by “sugar,” Lustig means not only the white granulated stuff that we put in coffee and sprinkle on cereal — technically known as sucrose — but also high-fructose corn

syrup, which has already become without Lustig’s help what he calls “the most demonized additive known to man.” In Lustig’s view, sugar should be thought of, like cigarettes and alcohol, as something that’s killing us. These images seem a powerful way to help us comprehend the amounts some of us are taking in. Photo Illustrations by Kenji Aoki for The New York Times; Prop Stylist: Nell Tivnan. Source: U.S.D.A. 2009 Estimates. Read more here: http://nyti.ms/ issugartoxic

Tuberculosis vaccine to halt T1? Reporting in the Los Angeles Times, Thomas H. Maugh wrote that, “Research in mice had already shown that the tuberculosis vaccine called BCG prevents T cells from destroying insulinsecreting cells, allowing the pancreas to regenerate and begin producing insulin again, curing the disease. Now tests with very low doses of the vaccine in humans show transient increases in insulin production. The

Massachusetts General Hospital team is now gearing up to use higher doses of the vaccine in larger numbers of people in an effort to increase and prolong the response. “The findings contradict an essential paradigm of diabetes therapy — that once the insulin-secreting beta cells of the pancreas have been destroyed, they are gone forever. Because of that belief, most research today focuses on using vaccines

to prevent the cells’ destruction in the first place, or on using beta-cell transplants to replace the destroyed cells. “The new findings, however, hint that even in patients with long-standing diabetes, the body retains the potential to restore pancreas function if clinicians can only block the parts of the immune system that are killing the beta cells.” Read more here: http://lat.ms/ vaccineT1

LIVING

How to train your doctor

(and yourself)

By Sue Marshall, Dr Laurence Gerlis and Dr Jen Nash

LIVING

Diabetics end up in a long-term relationship with the NHS and sometimes with specific staff. You’ll get weighed, have a blood pressure test and an HbA1c blood test. It’s a big deal. This article is about how best to make that relationship work.

rom the patient’s point of view, it may seem that appointments are like hen’s teeth -- you will probably get one doctor appointment every 4 months (on average), which might last 30 minutes. So, that’s about 2 hours a year, if you’re lucky. Therefore it’s important to really ‘work that meeting’. However, to state the obvious, even if you’re an old-timer who’s had diabetes for yonks, you are still (a) in a hospital clinic (b) will get ‘news’ on your progress and (c) will often be sitting around for a fairly long time.... The stakes are high patients can, understandably, be a little tense. It can be stressful and yet it’s important to keep calm -- make notes before you go in so that you are prepared. I’d advocate that you are ‘pushy but polite’ if you want information on something -- you have a right to know why that medicine or product is / or is not being recommended for you. From the clinic’s point of view, there’s a ‘care team’ for the patient -- so you’ll see the doctor (likely a diabetes consultant), but there is also likely to be a DSN -diabetes specialist nurse. They are busy and cash-strapped, but that should not be the patient’s issue. Patients have a longterm condition that they are encouraged to self-manage (through diet, daily blood tests and injections), so they are likely to be both educated and opinionated about

their care. This makes the clinic’s role one of long-term support.

Working it out Dr Jen Nash is a Clinical Psychologist who has been living with T1 diabetes since she was six years old. Dr Jen now offers therapy and educational courses to help improve the emotional impact caused by living with diabetes. Here she looks at your ‘Relationship to Help’. “How can someone who only sees you once or twice a year for roughly 15 minutes at a time really ‘get’ what your experience of diabetes is like? The diabetes doctor, nurse or dietician can’t. But here’s something you may not have thought of - they’re not really there to. Of course your healthcare team want you to be in control of your diabetes and in good health. They are passionate about helping you to manage the delicate balance between food, insulin and activity so that your blood glucose control is just right. But as committed and as dedicated as they are, they are not your psychologist, your counsellor or your friend. They aren’t there to help you work on the other ‘inner workings’ of your body – your emotions.

Them and You Here I’d like to share some ideas about how you can feel more connected with your healthcare team. Common experiences of relating to healthcare professionals that I hear from people with

CLINICAL PSYCHOLOGIST and T1 diabetic Dr. Jen Nash

diabetes I work with are: • Feeling rushed • Not being ‘heard’ • Feeling misunderstood • Not feeling free to talk about what is really of concern e.g. that diabetes is getting you down • Feeling scolded or made to feel like a ‘bad’ patient • Being patronised, unintentionally or otherwise • A pressure to lie about your blood glucose results or other health behaviour • Feeling that the healthcare professional is an “expert” and can’t be disagreed with • Not attending health appointments at all and avoiding healthcare professionals entirely. ›

LIVING

Some common challenges from the healthcare professional’s point of view are: • N ot having as much time to spend with patients as they’d like • Feeling pressure to be the ‘expert’ • Feeling at a loss to know how to help • Working within an environment with stretched resources • Team conflict amongst their colleagues • Working to meet government targets which prioritise ‘hard’ data such as blood glucose control achieved over ‘soft’ data such as psychological wellbeing or quality of life • Not being able to fully appreciate the lived experience of diabetes (being an ‘expert’ rather than an ‘expert by experience’) • Having to maintain the caring role at work when experiencing personal challenges in their life outside of work Viewing the relationship from the other person’s perspective can be helpful and there are some practical steps you can take today to feel more in control of this relationship.

Improve the relationship Here are what I call the “3 Ps” – a way of improving your relationship with the individuals in your healthcare team. 1. Plan The first step is to plan for your appointment. Think back over the last month – what has confused you, or surprised you, or encouraged you, or frightened you about your diabetes? What are the three things you like to know or say?

2. Participate The second step is to be an active participant in your appointment. William Polonsky, a US writer suggests using the ‘ABC’ of effective communication: • Assertiveness – express yourself with confidence • Brevity – speak as briefly as you can, staying to the point at all times • Clarity – express yourself clearly, using short sentences and simple words 3. Partner The third step is to understand and keep in mind that you and the healthcare professional are equals. Rather than feeling like a passive recipient of expertise, remember that you are two adults with an immense wealth of expertise. The healthcare professional has expertise of diabetes and how the body works and you have immense expertise gathered through your lived experience of daily life with diabetes. Together, you can share that expertise with one another to work towards the benefit of your health. Of course it can be hard to make changes, but if you’re interested you could try this exercise. In psychology-speak, we all have an inner model of relating to people who are there to help, which is called your ”Relationship-to-Help’. So, • Think about your diabetes healthcare professional now. • Take notice of the feelings you are experiencing. Are they positive or negative? • Put a label on the feelings you are experiencing – hopeless, contented, angry, joyful, embarrassed, tense, supported, sad, uncertain, frightened, secure, shameful…?

• Now try to associate the feelings you have about the healthcare professional with the feelings you have about someone else in your life. Who from your past do you also have those kinds of feelings about? • What figure from your early life comes to mind? Your strict headteacher at school? A kindly babysitter? Your controlling parent? A supportive uncle? Becoming more mindful if your personal relationship-to-help can really assist you to relate to your healthcare team in a more balanced way, improving your ability to take their advice on board and increase your health and wellbeing. ›

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LIVING

A CHECKLIST FOR YOUR CHECK UP

Dr Laurence Gerlis, a GP with special interest in Diabetes and is a BUPA registered specialist in the field with a particular interest in insulin therapy, says, “I blame us -- the doctors - for poor communication between ourselves and patients. Because patients have such difficulty accessing medical care, once they get in to see the doctor, the time seems too precious and panic sets in. Inevitably a patient may think that they must get everything sorted now, because they may not get a chance to see a doctor again for some time. This is a shame and it spoils many a good consultation.”

Dr Gerlis has advised a seven-point checklist as follows: 1. Prioritise in your head - what exactly are you feeling now ? A long history starting in 1972 may be how you see the problem, but we need to deal with what is going on now. 2. Don’t write a list - this makes you include too much and you will spend time with your head down reading- look at the doctor and say what you are suffering from now. The only list of value is a list of medications you are on and a brief list of previous hospitalisations and operations 3. Don’t use the internet before the consultation and come with print outs. Information on the internet is very detailed but often irrelevant. Don’t try to make an internet diagnosis - focus on telling your symptoms to your doctor. 4. Don’t include your athlete’s foot if you also have something more serious like chest pain. Mention the chest pain and forget about the athlete’s foot for now.

FURTHER INFO Dr. Jen Nash: If you’d like help to think about your own ‘relationship-to-help’, or any other aspect of your diabetes wellbeing Dr. Jen offers free 20-minute ‘Get Aquainted’ calls to help you think about your diabetes in a different way. See www.positivediabetes. com or email info@positivediabetes.com IDDT Conference: Dr Gerlis and Dr Adams have both contributed in the past to the IDDT (Insulin Dependent Diabetes Trust) conference. The next one is titled, ‘It’s My

Diabetes’ and aims to help people make an informed choice of how their diabetes is treated. Saturday 15 October 2011, Kettering Park Hotel. The programme includes, ‘insulin options’ by Bev Freeman; Pumps’ by John Hughes; Carb counting’ Dr Mable Blades and Jane Essex, ‘Understanding Your Diabetes’ by Dr. Laurence Gerlis and Martin Hirst and ‘My Hypos’ by Dr. Gary Adams. For more info and to apply to attend visit www.iddt.org/events/iddts-2011conference/

5. Don’t be tempted to say, “Oh, while I am here doctor”, it makes our hearts sink. However sometimes people save the major symptom till they are just leaving so see points 1 and 4 above and try to mention the most important first if you can. 6. If you don’t know which symptoms are most important, mention them all (concisely) from the start and let the doctor decide. Don’t expect to spend half an hour dealing with your headache and then later happen to mention the skin rash, fear of light and neck stiffness - they may be connected so mention them up front if they appeared at around the same time ie in this current illness. 7. Write down brief notes at the end - or better still ask the doctor to summarise in a note what the conclusion and next step is. This avoids confusion later. Dr. Laurence Gerlis: www.gerlis.com/ doctor and www.samedaydoctor.co.uk

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