No Judgement Please – We’re Doing our Best!

Recently, two unrelated publications, one an Australian blog and the other a UK peer-reviewed medical journal, have given voice to the same topic. Their different and highly complementary views combine to offer a powerful message, close to the heart of many with diabetes as well as ours here at SD.

On 7th August, Renza Scibilia wrote her daily blog about living with diabetes as if it were a letter to a diabetes doctor in a new clinic. It started with the words ‘you and I are on the same side. My side’, then continued expressing the hope of partnership, of mutual understanding and the absence of judgement about her life with diabetes. Above all, she expressed the desire for recognition that even when diabetes isn’t going too well in her life, that she is always doing her best.

Her message is clear: respect my expertise and I’ll respect yours, so we can have a great and useful relationship. This post attracted a number of comments, including one from a diabetes educator who said ‘you have helped me become a better clinician’. It occurred to us that the idea of a ‘letter of introduction’ such as this, should perhaps be an option in all clinics, to help break down the assumptions, myths and negative judgements that, however inadvertently, often underlie the consultation words from a health professional towards and about the person with diabetes.

Which helps to introduce the second publication, from the respected journal ‘Diabetic Medicine’. In the first study of its kind, the authors interviewed parents of children with Type 1 diabetes about the challenges of keeping their children’s blood glucose in range, in the context of their everyday lives.

Apart from the surprise that such a qualitative study had not been undertaken before now, there were two major new findings in this paper – one being that parents often had ‘home’ and ‘away’ blood glucose targets – the latter being more relaxed than the former. This reflects the desire to ensure their child was safe from hypoglycaemia and able to enjoy the event they were attending without their parents. It also showed their recognition that other care givers at events would not have the detailed knowledge that they had about the intricacies of diabetes-related actions and their own child’s condition. This in itself was hugely moving, the parents wishing ‘a normal life’ for their child and reassurance for themselves that hypoglycaemia, an ever present fear for parents, was unlikely outside of their direct care.

The second finding was in relation to consultations with health professionals, who, although excellently reviewed in terms of knowledge of diabetes and its treatment, were universally found to expect a ‘text-book’ achievement of recommended HbA1c levels, without apparently realising the realities and complexities of life with diabetes that the parents had to face. It seemed to be summed up in the comment by one parent ‘you’ve tried really hard…and you get ‘oh their HbA1c is not good enough, you need to do better’. In this single sentence, the sense of demoralisation, frustration and unrecognised effort rings out.

Unsurprisingly, one of the conclusions of the paper is that health professionals need to be more empathic, more recognising of effort as well as results and have a training that engages in the everyday detail of living with diabetes as well as the medical and scientific knowledge which currently prevails.

What are we saying here by bringing these two pleas together? Quite a simple message really, one for health professionals as they invite people living with diabetes into their consulting rooms, and one which is really quite easy and cheap to achieve. It’s summed up by something a colleague of ours said many years ago ‘always remember to honour effort as well as outcomes’.

It’s only the sheer effort and doing their best by people who are in the complex maelstrom that diabetes can present in life, that gets any outcome at all. And the only judgement that effort deserves, is a massive ‘well done’ at each and every visit. Please, just do it.

References

Diabetogenic: Dear Doctor: 7 August 2015

Lawton, J., Waugh, N., Barnard, K., Noyes, K., Harden J., Stephen, J., McDowell, J., Rankin, D. (2015). Challenges of optimizing glycaemic control in children with Type 1 diabetes: a qualitative study of parents’ experiences and views. Diabetic Medicine , 32, 1063-1070

Happiness is…..an ‘Emotional HBA1C’?

By Rosie Walker of Successful Diabetes and Jen Nash of Positive Diabetes

Last Friday was International Happiness Day, a very enjoyable-sounding occasion when the world’s happiness quotient is focused on. People were asked on TV stations, radio and around the world ‘what makes you happy ?’ and contributed such aspects of their lives as children, long walks, sunsets and chocolate cake! One report on the BBC showed a café offering massage and laughter therapy to promote happiness!

All that may sound a bit trivial, obvious even, but there is a serious message behind the day, which is that more and more people, and younger people, report feeling lonely. Loneliness leads to isolation, low self esteem, a lack of self-worth and even feelings of not wanting to live anymore. It can also lead to physical ill health, which can all add up to a vicious circle of misery. Knowing this, the simple ways of trying to help make people happier, look much more important.

Happiness is also a factor in the ‘Emotional HBA1C’ – that’s HbA1c, but with the letters creating different meaning from the traditional. Recently, at Diabetes UK’s annual conference, we presented this emotional version, one where instead of being short for the medical terms ‘Haemoglobin’ and ‘A1c’, the letters stood for psychological factors which can also contribute to this all-important result, upon which so many decisions in diabetes care are made. However, these factors are often ignored in diabetes care services. We believe that being more aware of them can help people with diabetes and health professionals alike: Here’s what our HBA1C letters stood for, and why: .

Happiness: Being happier and relaxed – or, put another way, less stressed and distressed - can reduce blood glucose levels.
Balance: Looking after diabetes enough, in the face of all the pressures of ‘real life’, contributes to keeping a health balance which in turn influences blood glucose.
Attachment: Negative family experiences in early life can sometimes make it difficult later to look after diabetes and form relationships, including with health professionals. This might lead to less attention on diabetes care and, in turn, HbA1c.
1st things first: Being able to prioritise diabetes care, when it needs attention is likely to lead to better health. Diabetes can be thought of as a baby who demands the caregivers’ full attention, even when they are busy with something else. Working out how to look after the ‘diabetes baby’, however disliked, can positively affect the HbA1c result.
Curiosity: for the person to be curious about their own diabetes and identify the factors and strategies which work for them personally and they can cope with, makes a big difference to the end result of HbA1c.

For health professionals, these ‘emotional HBA1C’ factors give clues to how to create an environment in a consultation, meeting or education session, that pays attention and actively discusses how the person is coping emotionally as well as discussing the medical aspects. An example of a ‘health professional emotional HBA1C’ might look like this:

Help people to define their main issue of concern.
Be accepting of the person’s point of view.
Acknowledge feelings as well as practical content.
1 main idea or insight to take away from the encounter .
Concentrate on person’s agenda.

Our workshop was very well received and attended and we’ve created a full summary, including the participants’ reflections at the end and the slides we used to explain the ‘Emotional HBA1C’ in more detail and the evidence for it. We invited people to create their own ‘Emotional HBA1C’ of the aspects of diabetes they felt influenced the medical HbA1c, and use it in their life and work with diabetes. .

We invite you to download the workshop summary and we hope this new way of looking at HbA1c inspires you. If you decide to create your own ‘Emotional HBA1C’, perhaps you’d share it with us, here?

Wishing you happiness, today and for the future!

Positive Diabetes
Successful Diabetes

Diabetes Rules?

Self-monitoring for long term conditions like diabetes is all the rage in the new NHS. To be fair, it has long been advocated, but it is, happily, really centre stage at the moment. The idea that looking after your own health, taking responsibility and being personally involved in decisions about treatment, is central to the NHS reforms, summed up by the phrase ‘no decision about me, without me’.

It’s a welcome change from historical services for people with long term conditions, (which, incidentally, they have always managed themselves for the most part, so the idea is not new, just reality being acknowledged). The previous approach was based on following ‘doctor’s orders’ and woe betide you if you got it wrong as this would lead to a ‘telling off’ appointment with a penance of more rules to follow until the next time. For many, ‘getting it wrong’ was most of the time because doctor’s orders (often without explanation) is one thing, but having the tools to do the job, such as information, testing equipment and discussions with others, is quite another. There used to be way too much of the former ‘rules’ and not nearly enough of the latter ‘means’. Thankfully that has all changed now, or at least is in the process of changing, as we have discussed regularly on this blog.

But have new rules replaced the old ones, bringing their own difficulties in applying them? For example, Diabetes UK have an admirable website, which includes a great deal of information for all ages and types of diabetes. On there is a page called ‘monitoring your health’, which sets out the need for ‘knowing your blood glucose, your blood pressure and blood fat levels, as well as the condition of your feet and getting your eyes screened for retinopathy’. While this may be accurate, it is a pretty tall order to hold in your mind every day whilst trying to juggle the usual demands of family, work and social life. It’s possible that someone could get it equally ‘wrong’ with knowledge as they may previously have done without it!

It was with these thoughts in mind that our latest ebook was born. Trying to address the question ‘how do I remember what’s important about managing my diabetes whilst getting on with my life?’, one answer has come in the form of ‘Diabetes ‘Forget-Me-Nots’, a bright and friendly little ebook with a mission to act as a spare diabetes memory! We hope it’s going to live on people’s ebook reader, tablet or computer so that when it comes to following the ‘rules’ of the moment, it can offer that extra bit of help and confidence to get it right - for a change.


References
Diabetes UK: Monitoring Your Health
Diabetes 'Forget-Me-Nots'

‘Difficult Patients’ – How to Manage

At a recent workshop for health professionals, a couple of the participants mentioned that some of their patients were ‘really difficult’. On exploring what they meant by this, they were frustrated by people who seemed not to contribute in consultations, or didn’t attend regularly, or when they did attend, they didn’t seem particularly interested in doing what they were asked to manage their diabetes. One also mentioned that such ‘difficult patients’ also often attended with their own agenda and questions that weren’t always relevant to the consultation.

This made me reflect on how often I hear this kind of point made and also on what a powerful, emotionally charged exclamation it is, to say that you have ‘difficult patients’. What is perhaps really being said is ‘I find it really hard to meet these peoples’ needs, so I am categorising them as difficult’.

I have heard of ‘difficult patients’ in all sorts of guises – someone with Type 2 diabetes who feels nothing the health professional suggests is worth trying, a teenager with Type 1 diabetes who sits surly and unresponsive throughout the consultation or what has been described by a fellow blogger Alison Finney as ‘a nightmare patient’ in her blog shoot up or put up , referring to someone who wants to know everything about everything and discuss the pros and cons of all advice given.

I venture the view that actually, there is no such thing as a ‘difficult patient’ but there are difficult encounters between people with diabetes and health professionals. These are characterised, in my view, by strong feelings on the part of each and yes, competing agendas, which are often only partly fulfilled.

It’s often about roles. Having diabetes certainly doesn’t make you keen to adopt or adopt unquestioningly, the behaviours recommended for keeping well. Neither does being a health professional make you all – knowing or even all-powerful. However, these are frequently the roles assigned, albeit unconsciously, in a typical consultation. Herein lies where agendas can clash.

There is also the question of expectations, if not judgements. Often, thoughts that precede the ‘difficult encounter’ will be “oh no, it’s the difficult/uncompliant/badly controlled/intense/obsessional person coming in next (health professional) or ‘I hate going to this consultation, I’m fed up of never getting anything right/not having my questions answered/not being able to get a word in edgeways/being told stuff I already know’ (person with diabetes). Hence the stage is set for a tricky, unfulfilling, and most sadly of all, ultimately pointless meeting.

I paint a dire picture, I know, but I’m guessing that it’s one you may recognise, at least in part, from your experiences of consultations. If you do recognise and would like to lessen the chances of being seen as or having a ‘difficult patient’, then I’d like to offer you a few ideas from research and experience – in no particular order of importance:

• Ask about feelings: sometimes anxiety manifests as anger and silence equals upset. Acknowledging that consultations are emotionally charged can remove a great deal of difficulty
• Plan for 1 thing – and 1 only – that you’d like to achieve from the consultation and share this with the other party, ideally before or at least at the start of the consultation
• Don’t expect your consultation to be 100% perfect or have 100% perfect outcomes. You are bound to be disappointed! Seeing this meeting as just one step on the journey of diabetes is fine
• Share your feelings – yes, both of you. Not in a ‘deep and meaningful’ way, but honestly: how about ‘I’m not sure we’re getting on so well: how can I best help you today?’ or ‘coming here always makes me feel a bit of a failure I’d like to talk about what I have been doing rather than what I’ve not done’
• Examine your motives for the consultation: are you expecting the health professional to solve or take over your diabetes? Do you want your patients to do what you tell them, unquestioningly? Either way, it’s unrealistic. Consider having a conversation about 1 thing that really matters to you both, instead
• Are you talking at cross purposes because you don’t both have the same facts at your fingertips, eg test results and their meaning? If so, would sharing test results in advance of the consultation help, so you can discuss them on equal footing?

It is certainly true that the more honesty and information sharing there is in consultations, the more worthwhile experience they seem to be. While writing this I’ve also been reminded of a comment made by a colleague, who once said ‘I see the HbA1c as an invitation to look at the person’s life with them’. Could this possibly be all that ‘difficult patient’ needs from their consultation?

High blood pressure: Plenty of hype about hypertension

It’s fantastic this week to see diabetes as a front page headline on the BBC Health website, the subject of a new report on the national diabetes audit for England. It shows that only about 50% of people with diabetes have blood pressure below the recommended levels. Hypertension, the term for blood pressure higher than the recommended levels, is an important issue in diabetes as it is common but often silent, and can cause all sorts of problems, including strokes and kidney problems, both cited in this report. It can only be a good thing that public awareness is kept high about this condition.

However, it’s a rather less good thing to read some of the terminology used in the report. This kind of suggests that people with diabetes themselves are deliberately putting themselves in the way of these raised levels. It says that people with diabetes are ‘failing’ to control their blood pressure, and are ‘told’ to keep it under 130/80. The implication is that they are not doing as they are told or making the grade, as if it were some sort of exam they have to pass to gain approval. Added to this, for good measure, a fear factor is thrown in, namely that people with diabetes suffer ‘record levels of stroke and kidney failure and are dying years younger than the rest of the population’. 

Whilst we are sure these implications and scaremongering are not conscious reprimands to people with diabetes, these kinds of messages are not necessarily helpful in enabling people to take action to rectify what’s going wrong. For a start, blaming people or telling them off is rarely effective in changing behaviour and making people fearful of consequences is more likely to lead to inaction than proaction. Equally, it is not the fault of individuals that they are more susceptible than others to a particular condition.

The Department of Health is also cited in the report telling people what to do. In this case, health professionals are exhorted to ensure all people with diabetes (which they term ‘diabetic patients’) have their blood pressure checked and to give them advice and treatment. Again, this gives the suggestion that this is not already happening, and is more likely to cause indignance amongst health professionals than make a useful contribution to their work.

How about other, perhaps broader ways of looking at the issues? Are there other factors which might contribute to so many people having high blood pressure? Firstly, a few ideas about this in relation to the suggestion that it might be people’s own failure to control their blood pressure that has led to this problem:

·      Someone living with type 2 diabetes once told us in a meeting ‘diabetes doesn’t come to the party on its own, it brings its friends’ – in this case high blood pressure, high blood lipids and being overweight, all of which are frequently present alongside type 2 diabetes in particular.

·      Type 2 diabetes is a condition whose progress is not always easy to understand. Even with the best efforts of all concerned, it becomes harder to manage over time and co-conditions such as hypertension can be equally hard to control.

·      When treatment is prescribed for high blood pressure, it often involves taking multiple different sorts of tablets, some of which are not always palatable or tolerable. To get the right mix for an individual, a series of different combinations may need to be tried. The more tablets there are prescribed, the more risk of confusion and forgetting of doses.

·      People respond to medication differently at different ages, ethnicities and with other illnesses or complications of diabetes.

·      It’s much more difficult than anyone makes it sound to apply the commonly cited ‘simple lifestyle advice’ such as losing weight, taking more exercise and eating more healthily to manage high blood pressure, and even more so when you also have diabetes.

Secondly, some thoughts in relation to healthcare professionals giving advice and treatment:

• There can be flaws in the way advice is given – for example, a blood pressure check may be taken, but people are often not informed of the actual level, just given a broad message that it is ‘ too high’ or ‘it’s better than last time’. This is not necessarily meaningful and is unlikely to lead to concrete action.
• While there are nationally agreed treatment recommendations for what medication can be prescribed and in what order, sharing these plans with the people actually affected is not common. This means that they have not necessarily been informed whether a new tablet is an additional treatment or a replacement, which can result in under treatment of the condition (and also unused supplies cluttering people's cupboards). 
• Even when the best advice is given, and care taken that it is clearly understood, there is also the question of how it can be practically implemented – for example, a tablet regimen that involves taking different pills at different times of the day can be really tricky to fit in to any lifestyle.

As ever with reports such as this, the headline news is often the most dramatic. Short reports need to have soundbites to capture the media’s attention and it’s great that this is obviously the case with the announcement of this report. But behind the headlines, let’s not forget that living with diabetes and hypertension is a marathon not a sprint, and people need some practical ways that they can make a difference to their blood pressure levels that give them a sense of control and reward rather than being thought of as at the mercy of health professional and medication instruction.

We’d like to offer a few other suggestions that could make a difference to high blood pressure, but are less often talked about in the excitement of the medical side of things. So if you have high blood pressure and want to try something different, these practical ideas could help:

·      Relaxation – from taking 2 or 3 deep breaths and exhaling gradually a few times a day, to formal relaxation tapes or classes: it all helps to calm you and your blood pressure down

·      Take your own blood pressure with a machine bought from the high street chemist, keep records and look for trends. This puts you firmly in control and will give you levels to compare ‘before and after’ when you make any changes in tablets or your lifestyle

·      Ask questions of your GP or practice nurse, and find out what your actual level is and what you are aiming for it to be. The more you know about your blood pressure, the better.

·      Find out more about blood pressure in general, on Internet sites or through books and leaflets. Being informed like this helps you think about your blood pressure in the context of your overall health

·      Talk to other people who have high blood pressure or who have treatment for it. Can you learn anything from their experiences?

·      Check with your GP or pharmacist about possible interactions among the tablets you are taking when new ones are added and ask them to ensure you are taking the least number possible per day. The less tablets you have, the less likely it is you will forget to take them!

·      Keep a mood diary and see if you can link your high blood pressure to the way you are feeling emotionally. It may be that you need treatment for anxiety or depression as well as, or even rather than high blood pressure

Reference

http://www.bbc.co.uk/news/health-17626129

10 April 2012 15.00

Whatever your role, what’s your experience of high blood pressure, diabetes and discussions about it with health professionals in consultations? What works or doesn't work for you or someone you live with or know? This blog is open for discussion!

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.