Tuesday, 29 January 2013

‘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?

Saturday, 19 January 2013

Legacy or Let Down? A Decade of the Diabetes National Service Framework

With great promise and excitement, the ambitious 10 year delivery strategy of the diabetes national service framework (NSF) was launched in January 2003. For the first time, a government was taking a long view of long term conditions care with these 10 year programmes, enacted from ‘the NHS Plan’ of 1997. Diabetes was just the third NSF to be published, showing what we thought was a brilliant commitment to this important and growing condition

At the time, 10 years seemed an age away with plenty of time to do everything the standards demanded. Yet here we are in 2013 with a whole new health policy world and with the next huge NHS reform upon us. So did the NSF achieve anything and will its legacy live on in the current incarnation of diabetes care - or were we let down on its promises?

As is our wont here at SD Comments, we’ll start by looking at some of the success stories that seem to be here to stay and have undoubtedly changed the face of diabetes care:

LEGACY: Eye screening for retinopathy is universally available and pretty much everyone with diabetes is invited to have their eyes photographed annually. As a result, blindness rates due to diabetes in the working population are getting lower every year, thanks to the early intervention on problems detected through retinal photography

LEGACY: Local diabetes networks bringing together people working within hospital, community and general practice services for diabetes have grown and persisted. Communication between health professionals working together has improved and faster referrals and decisions about acute situations such as foot ulcers can be made as a result. The latest recommendations about communication between services have just been published by NHS Diabetes, quite rightly highlighting their continuing importance in the ‘new’ NHS

LEGACY: Specific mention of children and young people as well as adults with diabetes. The NSF was very clear about the needs of children and young people as a specialty, a distinction that hadn’t always been so clearly made. Every one of the 12 NSF standards mentioned each age group and today, the focus on children and young people with diabetes is intense, with Diabetes UK’s most recent awareness campaign highlighting the need for prompt and early recognition of symptoms of Type 1 diabetes in children

Unfortunately, there are also some let downs when looking back at the NSF and these have to be examined too – so these important aspects don’t continue to be forgotten

LET DOWN: Diabetes structured education. Despite the NSF heralding the importance of supported self management and the provision of high quality information and education, there is still a massive lack of access to structured education and enormous variation throughout the country. Even more worrying (as detailed in this blog before) is the very low invitation to and uptake of diabetes education courses. In addition, education courses are often the first to be cut when economies in services have to be made, as in recent years in the NHS. This leads to people being unable to manage their condition for lack of the ‘tools to do the job’.

LET DOWN: Personalised care planning and participation in decision making. Despite a whole standard to do with empowering people to manage their condition themselves and being helped to make decisions based on their own goals and aspirations, there is still very little results sharing prior to consultations and consultations still often follow the traditional medical model of ‘health professional knows best’, despite the day to day management of diabetes actually being in the hands of the person living with it.

Happily, the current health policy is still promoting a personalised approach with the ideal of ‘no decision about me, without me’ and there is a strong focus on this for people with long term conditions in the Government’s recent instructions to the NHS, so maybe there is a glimmer of hope that this let down will become a legacy in the end

LET DOWN: User involvement in how services are planned and delivered. This aspect of the NSF started with great promise, with a number of initiatives and organisations, guidelines and recommendations dedicated to developing this approach. However, enthusiasm for it seems to have waned over the years, even among campaigning organisations. Proper, proactive involvement of people who use services is now extremely patchy. Apparantly, the new NHS will have a much stronger ‘patient’ voice, but this may be more to do with complaints and accountability than involvement and consultation in how services are actually run

So that’s our take on what is and what might have been. Ever optimistic, however, we will continue to bang the drum for person centred approaches, access to diabetes education and user involvement, and do all we can to ensure that the ‘brave new NHS’ will take note of these let downs as well as the legacies


Department of Health (2003). Diabetes National Service Framework: delivery strategy http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_4003246

Department of Health (2012). The Mandate. A mandate from the Government to the NHS Commissioning Board: April 2013 to March 2015

NHS Diabetes (2013). Implementing Local Diabetes Networks

Do you agree with what we’ve said? If so – and if not – your views and comments are welcome below!

Friday, 11 January 2013

Tops in 2012!

At the start of a new year, it’s traditional to look back on the highs and lows of the last one. In our case, we don’t really do ‘lows’ but prefer to concentrate on successes, as this has a much better track record when it comes to positive mental health. But enough of our philosophy, (which is covered in detail on our website if you’d like to know more) and here we go with some of the highlights from the last year, many of which we covered in this blog.

They get our votes because they really focussed on the people side of health and wellbeing and are consistent with all that we promote here at SD

So imagine a drum roll and let’s hear it for the following!

• The Health Foundation – released a series of practical reports and reviews in relation to making a reality of person centred consultations, helping people make decisions, collaborative healthcare and supporting self care. Absolutely vital stuff to help the new, personalised NHS achieve its objectives

• Diabetes UK – kept up a relentless focus on the basic checks people with diabetes need to have, from blood pressure to foot examinations – and reminded the world at every opportunity how these were not universally offered or taken up, despite them being ‘must do’s

• The Irish Health Service – made rolling out pump therapy for the under 5s a priority in its health budget for 2013

• The National Diabetes Audit for England and Wales for including statistics about the poor offering and uptake of diabetes structured education and giving campaigners the opportunity to wave these statistics and press for change

• Diabetes Australia – for publishing a wonderful document about awareness of language in relation to diabetes. Just creeping in from December 2011, but we’re guessing it was 2012 before anyone read it and it remains one of our favourites!

• Last but not least – anyone living or working with diabetes who has reflected on their approach, made changes or generally tried to make their diabetes or the environment in which they work a better experience during the year. As we never tire of quoting, from a dear friend with diabetes “diabetes is a marathon not a sprint; I need help to stay in the race”. Every bit of help along the way matters equally every year.

Hoping to see much more great work like this in 2013 and wishing all our readers a very happy and healthy – and Successful - new year!


Wednesday, 2 January 2013

To eat or not to eat?…A question many with diabetes would love to ask

Will Self’s recent ‘point of view’ certainly gave me food for thought.

He argues that we have become obsessed with food, which dominates our high streets and our television programmes and we could do well to remember that eating is really a way of satisfying hunger rather than being a creative occupation. He also reminds us that there are plenty of people going hungry in our own localities, with food banks opening up with depressing frequency, even as we make the agonising choice of which ready meal to purchase from the heaving supermarket shelves. He suggests that we tend to take the easy option of an eating culture instead of attending to more challenging cultural developments in arts or science. He begs us to resolve to purge ourselves of our food obsession in 2013.

He has a point. There’s a lot to digest in his column (pun intended!), including the observation that when hungry, it doesn’t matter to our bodies whether the food we consume is cooked in a celebrity kitchen or a billy can over a single gas ring. This particular point made me reflect on how, actually, we know these days that food does matter to our bodies and that maybe all the attention on food in recent years has been a force for good - for example we know our bodies react differently to unsaturated and saturated fat, complex or simple carbohydrate, animal and vegetable protein and soluble and insoluble fibre. The outcomes of eating different proportions of these can literally be the difference between life and death, so for all of us these developments are in fact, vital.

That’s not to say there’s a direct relationship between ‘media cooking’ and health, quite the opposite sometimes, if recent reports on the unhealthiness of celebrity endorsed recipes, are to be believed, with many found to be way over the recommendations for fat, sugar and salt. However, another way of looking at this is that such research can actually serve to offer a new way of bringing healthy eating recommendations to the attention of the masses consuming food related news – perhaps another benefit of our food-orientated culture?

My main reflection generated by this column was the thought that for the couple of million people with diabetes in this country, eating or not eating is not a simple option, although many would dearly like it to be. I have heard many times from people with diabetes that just to choose to skip a meal would be a luxury and the liberation felt by those who have experienced this, perhaps through starting pump therapy, reversing the early signs of type 2 diabetes, or for the lucky few, an islet cell transplant, is immense.

For the rest, eating is often a daily grinding juggling act, a way of getting through the day without experiencing hypos or high blood glucose symptoms, catching a hypo in time to prevent embarrassment, and simply being able to fit food in with their social or work schedule. Many say that an obsession with food ‘comes with the diagnosis’ and that looking at food in an enjoyable way can become a rare thing. Someone with Type 1 diabetes I met recently explained it like this ‘you see a lovely roast dinner and prepare to enjoy it….I see a maths equation - ‘how many carbs + insulin will equal a normal blood glucose level?’. Such mathematical calculations are part and parcel of everyday life with diabetes.

We’ve written in this column before about our wish for more and better access to technologies such as insulin pumps, and more flexible medication regimens that do so much to expand the options around eating for people with diabetes. Whilst we do our bit to make eating and cooking calculations easier with diabetes, for example with our carb-counted recipe book, it's also our regular new year hope that even more people with diabetes will get the chance to ask the question ‘to eat or not to eat?’ and answer it in any way they like.

The Never-ending Culinary Merry Go-Round

'Carb-Counted Recipes for Diabetes’