Information Prescriptions for Diabetes - Backward or Forward Step?

At first glance, the information prescriptions for diabetes, launched this week, seem like a great idea. Take someone who attends their GP with blood glucose/cholesterol/blood pressure levels that don’t match the recommended targets and give them a takeaway - a bright, shiny A4 sheet describing how they can do better. Simple! And very quick, the all-important consideration for many hard pressed primary care professionals.

So that’s that problem solved, then.

The trouble is, as many of us know only too well, that a fix like this is highly unlikely to make much of a difference to the underlying reasons why someone might have these high levels – whether it’s because of the stresses of coping with difficult family or work circumstances (supporting your sister who’s ill with cancer, or looking after your grandchildren 3 days a week so your son can make ends meet with 3 jobs) or by actual choice (the schoolteacher of a class of 5 year olds who needs to make sure he doesn’t have a hypo during lessons).

We also know that ‘one size doesn’t fit all’. For some, the written word is easy and a pleasure, for others, torture and incomprehensible. And in any case, with all the other bits of paper that often accompany a medical appointment, will it see the light of day again from the pocket or bag it’s been placed in, once the person exits the building?

For many, information prescriptions will be offered after discussion and in response to specific questions that might be raised, and that is of course, the intention. However, for equally many others, they may be seen as a convenient way of ‘solving’ a clinical problem and ticking a box that flashes up on the computer screen – ‘this person needs an information prescription. Tick here when completed’. We hear that information prescriptions have been well received by people with diabetes and health professionals in the areas where the scheme was piloted. This is welcome news, but as is well-known, finding people to approve a development in a research situation and in ‘real life’, are not the same thing.

The medical model is one where people are told what to do by health professionals and expected to do it. This works really well for acute conditions, where there is relief in sight in quite a short time and / or the immediate consequences may be dire if instructions are not followed. For example, taking antibiotics for a severe infection that might otherwise result in hospital care being needed. To use a diabetes example, taking increased amounts of insulin with very high blood glucose levels during illness, to avoid life-threatening ketoacidosis in Type 1 diabetes.

The medical model is no good at all for helping someone live with a long term condition like diabetes, that depends mostly on self management, day in, day out. People with it need to make multiple daily decisions, choices and act accordingly, without a doctor or nurse’s say-so, or even in sight. The skills people need to make these decisions are usually not included in the ‘top down’ approach the medical model embraces.

Information prescriptions smack far too much of the medical model. What happens if people still have less than desirable (from the health professionals’ point of view) numbers next time, post-information prescription? Will they simply be issued with another, and another until they finally ‘obey’? or will they be cast out of the door, not to return until they have sorted themselves out to the satisfaction of the health professionals? Equally, what about those who would like the information contained in the prescriptions, but are ‘well controlled’? do they miss out on having their questions answered because they are not deemed ‘bad enough’ to qualify for an information prescription?

A way forward is not to medicalise even further, the encounter between someone living with diabetes and their health professional, when it comes to meeting the challenges of daily life. Rather, it’s to personalise things more. A really quick start to this, using the information prescription model, might be to have a message flashing up on the health professionals’ computer screen that incites them to congratulate a person who has achieved the recommended targets and discuss their success and how they might maintain it.

Thankfully, there is a model, which is gradually achieving recognition and implementation support in NHS circles. It’s known as personalised care planning, or PCP, which we’ve talked about and promoted on many occasions, as a system-wide solution to appreciating that people themselves are in charge of their condition and the choices they make each day are the only ones that will make a difference to the resulting ‘numbers’.

The job of the health professional in PCP is not to pontificate, order, tell, force or even cajole the person into submission to their will, but to share their ‘numbers’ with them and invite them to identify their own problem areas, goals and ways they wish to address them. Only through this process can they get anywhere close to addressing what, on the surface may look like a ‘non compliant diabetic’.

Information is everywhere and people can choose what works for them best. What’s needed is not a prescription, but a menu and support to explore it, and continued discussions of what’s worked in subsequent consultations. Fortunately, the idea of a local ‘menu’ is included in personalised care planning guidance recently published by NHS England, and is already being used in some areas. In the meantime, our own ‘SD Signposts’ is available for anyone to download and start to use, according, if they wish, to their personal learning style.

Health professionals may find more benefit from moving from information ‘prescribing’ to people with diabetes, to information ‘sharing’, which will be much more effective, not only for reducing the clinical ‘numbers’, but also frustration and time spent ‘telling’ – that’s our prescription for guaranteed satisfaction!

Action on 'Action for Diabetes'?

It’s great news that a document full of vision for diabetes has been published at the start of the new year, a time brimming with motivation and good intention. ‘Action for Diabetes’ is NHS England’s manifesto for making inroads into the challenges and complexities of this massively important condition. What does it say and will it be effective? are the questions on everyone’s lips – or should be!

The document is an easy read, well-formatted and simply presented. It talks about the importance of diabetes in the modern world. Its huge and growing prevalence, its disastrous consequences and need for ongoing, lifelong, quality care. So much we know – that has all been said before. Often in these documents it’s just the numbers that change and usually upwards. So what is new (or at least new-ish?) A commitment to developing personalised care planning – with systems and processes and tools to document it all specified. That’s good, much needed. There’s a commitment to produce another service specification – for young people transitioning from children’s to adult services. Also good, also much needed, having foxed the life out of many practitioners over many years. Maybe this time? Mention is made also of enabling people with diabetes to access structured education within 9 months of diagnosis. Extremely good. Making this a quality indicator (ie must do) would really show commitment and it looks like this iteration of diabetes policy might, just might, do that.

Action on diabetes also tells us what’s recently been put in place to support action. A toolkit for clinical commissioning groups to ‘transform participation in health and care’. That is excellent. But for those with a condition like diabetes, participation isn’t just a ‘no-brainer’, it’s mandatory. They already participate by virtue of having the condition and it doesn’t go away, just because someone isn’t paying it any attention. So I’d say, remember that the idea of participation is more that health and care services also participate with people with diabetes, rather than just the other way round. For example, that their view comes first in a consultation, their personal priorities are respected and that they are treated holistically rather than 'an HbA1c on legs'. That isn’t mentioned and should be, perhaps?

There’s a model behind the vision – the model is of a house, whose walls and roof will not stand up unless all the elements are in place, including firm foundations of good commissioning. This house model has been used over recent years to illustrate the importance of all elements working together, for example in Year of Care work on diabetes. It’s great that an old model is being used in new ways, showing how national, local and individual priorities can be represented in it. And we can all relate to a house, so in this way it makes the words even more accessible.

Will the contents of the document come to pass? I hope so – action is a great word to use, and even greater when it jumps off the page into our clinics and services. NHS England, you’ve made a great start. Keep up the good work, we are watching…

Action for Diabetes
Transforming participation in Health and Care

Consultations – A Meeting of Minds or an Appointment with Fear?

This week, the spotlight has well and truly shone on consultations, in the form of several reports released by the Health Foundation, including one entitled ‘When doctors and patients talk: Making sense of the consultation’ (Health Foundation, 2012).

This is welcome news to us, as consultations and how they are conducted, and helping health professionals develop more person centred skills, has long been a central theme of our work. This is because we know that people with diabetes have mixed and often unpredictable experiences with their health professionals, and frequently spend days and even weeks before their meetings feeling anxious and concerned about what might happen, particularly about whether they might hear bad news about their health. Not least of their worries is being judged for not achieving better control of their blood glucose, without the chance to explain the complexity of managing diabetes day by day in the face of other pressures and demands. As one person memorably put it ‘consultations for me are about attending to receive my ritual telling off’ (although in reality the words ‘telling off’ were said in rather more colourful language!). Another lady put it like this – with tears in her eyes -  ‘I feel like I’ve failed an exam every time I go to the clinic’. 

The Health Foundation review, which is based on extensive interviews and workshops with a range of doctors and patients, not only completely validates this aspect and discusses fear of patients as a key influencer of their participation in a consultation, but also suggests that the fear of doctors is a factor too. Their fear centres on making the wrong diagnosis or on potentially being regarded as less professional if they alter the way they work. With the power in healthcare still largely residing with the health professional, the consultation is often structured to allay the fears of the doctor rather than the patient, giving rise to the experience of many of being talked at rather than with and being unable to fully express their thoughts, feelings and wishes.

It’s not all bad news for consultations of course - many go very well, and the bond between health professionals and the people they see is often close and productive. Diabetes UK’s magazine ‘Balance’ runs a regular column ‘I couldn’t do without…’ in which people describe where their best support comes from. This very often features a nurse, doctor or other health worker. What we need is more of these obviously successful encounters and less of the ones that are, frankly, a waste of time and effort, not to mention money, for all concerned.

But the good news is, a knight in shining armour may be coming to the rescue. A new way of working is hovering on the edge of diabetes care, looking for ways into the mainstream. This is personalised care planning, which features shared decision making at its core and has been shown to be successful in transforming the routine, health professional-based consultation to one that is truly collaborative, to the satisfaction, and in many cases delight, of both health professionals and people with diabetes.

With personalised care planning, people with diabetes are able to have a much greater say, literally, in the consultation, and no longer have to wait in trepidation for their own test results (blood, eyes, feet and so on) to be given - or often partially supplied - to them by their health professional. Personalised care planning means they receive a comprehensive set of results and have time to reflect on them well before their consultation. They can then make decisions in the comfort of their own home before meeting up with the health professional to talk about what aspects of their diabetes, if anything, they wish to work on as a priority. Quite often, they attend having already made a decision about changing something, and have got started on it, so saving a lot of time which can then be used to discuss other aspects of their health or make for a shorter consultation.

Health professionals are naturally sceptical and need convincing about new practices, an aspect highlighted by another of the recent Health Foundation reviews on the evidence for shared decision making in consultations (de Silva, 2012). This review describes principles that are known to promote shared decision making, which happily including many that feature in personalised care planning, such as: goal setting and review; making care plans in partnership together; emphasising options; problem solving; and preparation for the consultation in advance. However, even though this evidence is available, health professionals are also as vulnerable to the difficulties of changing their practice and behaviour as anyone else, and for these reasons, personalised care planning has not yet been widely implemented. 

Fortunately, the body of evidence for personalised care planning is increasing all the time, and we are proud to be contributors to this in a number of ways:

·      Our website resources, including workshops (Successful Diabetes, 2012)

·      2 recently published papers (Walker et al, 2012; Walker and Rodgers, 2012)

·      Our book explaining the nuts and bolts of how to set up personalised care planning (Walker and Rodgers, 2011).

Now, with the Health Foundation’s timely reviews, we sincerely hope that services will be able to stop saying ‘why should we?’ and see that ‘how can we?' is the only question they need to ask!

Does anything in this blog ring true for you? Do you have experiences of consultations or personalised care planning... or the opposite? Post your thoughts and comments and share them with us here…

References

de Silva, D. (2012). Helping people share decision making: a review of the evidence considering whether shared decision making is worthwhile. Health Foundation. http://www.health.org.uk/publications/helping-people-share-decision-making/

Fischer, M., Ereaut, G. (2012). When doctors and patients talk: making sense of the consultation. Health Foundation. http://www.health.org.uk/publications/when-doctors-and-patients-talk-making-sense-of-the-consultation/

Successful Diabetes Workshops http://www.successfuldiabetes.com/workshops

Walker, R., Rodgers, J. (2011). Implementing Personalised Care Planning in Long Term Conditions. SD Publications. www.successfuldiabetes.com/books

Walker, R. et al (2012). Introducing personalised care planning to Newham: outcomes of a pilot project. Diabetic Medicine, 29, 8, 1074-1078. Abstract can be viewed at

http://onlinelibrary.wiley.com/doi/10.1111/j.1464-5491.2011.03523.x/abstract

Walker, R., Rodgers, J. (2012). Personalised care planning for long-term conditions. Diabetes and Primary Care, 14, 3, 177- 181. Online at

http://www.diabetesandprimarycare.co.uk/journal-content/view/personalised-care-planning-for-long-term-conditions