Thursday, 13 December 2012

Structured Education for People with Diabetes – A Box Waiting to be Ticked

There are many important statistics inside the latest report from the National Diabetes Audit (NDA), covering England and Wales, published earlier this week. Sadly, most of them lead to one main conclusion – that diabetes care is variable and because of the lack of receiving some well-known basics, people with diabetes run a 40% excess risk of death and also have a massively increased incidence of heart failure and many other complications. The NDA co-ordinators and diabetes organisations have called for the NHS to wake up and put nationally recommended care and treatment plans into practice. As ever, we support this call wholeheartedly.

To our mind, one eye-catching aspect to the report, which unfortunately didn’t make the headlines, was the finding that very few people with diabetes were either offered or attended a structured education programme when they were diagnosed. The figures covering 2009-2011, are not only low but stunningly low. In all, just under 8.5% of people were offered a structured education programme and just under 3.5% attended. Applied to Type 1 diabetes, the figures were 2.79% and 1.55% respectively and for Type 2, 8.72% and 3.57%.

If true, this is horrific – it means that most people being diagnosed with a lifelong condition that they themselves will need to manage day in, day out are not offered the opportunity to learn about how to do this. And even when they are offered it, it looks like only about half of them take up their place.

Another scary aspect of these figures is that although information about the offer and uptake of structured education has been gathered by the audit since 2005, this is the first time that there has been sufficient quality of data to publish. That means that in previous years, the figures were possibly even tinier than this year. The report’s conclusion, unsurprisingly, is that these figures are a great cause for concern. Again, we would definitely agree with this… but we’ve also been thinking ‘what on earth can be going on to create this situation?’ and so here’s our take on the issues and a suggestion for a way forward:

First and most obviously, are these figures accurate? The report itself says that under-recording is likely, and in our experience there are many, many services providing diabetes education, sometimes struggling to get takers because of low referrals. The referrals they do get are not always formal and documented and can even be through ‘word of mouth’. So it might well be that the people ‘ticking the boxes’ actually don’t know that education is taking place because it isn’t recorded. One possible way forward for this is that as well as a ‘yes/no’ answer box, there could be a ‘don’t know’ box, so that the audit can identify services where better information or communication of provision is needed.

Another key issue, and in our opinion, probably the most likely cause, is lack of provision of education programmes. Education in diabetes is still seen by many as an ‘added extra’ rather than the stuff of diabetes care itself. Because it isn’t seen as essential (and doesn't attract any money!), in pinched financial times such as the ones the NHS has experienced recently, it is one of the easiest parts of a service to cut and this has been the case in many places in recent years. But it’s also important to note that in many places structured education has never even got going, let alone been cut. This is not always through a lack of desire for it by diabetes services on the frontline, and they themselves will often cite lack of funds and educational expertise to get courses off the ground – another whole, vital issue that needs to be addressed.

When it comes to the diabetes audit then, if there is no provision, offering education is not going to make any difference – hence a ‘no’ in both boxes. The answer to this one is a radical rethink of the fundamental purpose of diabetes care services – of which more later.

On that note, the actual data recording in the audit might contribute to the results – for example, why record only whether people have been offered structured education and if they participated or not? Asking for the individuals’ reasons for not taking up the offer would be much more informative, because so much could depend on how education is offered. Given that for many, including health professionals, diabetes education is an ‘also ran’, it follows that this ambivalence might well be communicated to the person diagnosed, giving them the impression they can take it or leave it. Indeed, reasons we have heard from people with diabetes as to why they cannot be offered structured education range from ‘because we don’t have it in this area’ to ‘you probably don’t need it as you seem to be getting on ok’. Health professionals themselves often also say that they don’t believe that group education (which is recommended and has been shown to be effective), is right for everyone, so they end up not offering it to anyone. Given these examples and pre-judgements, it is not surprising that it is a bit hit and miss who gets offered an education programme.

Finally and amazingly, people still debate whether diabetes education ‘works’. It’s true that programmes studied often show little effect on diabetes control measures such as HbA1c. However, this is not always the case so this is not in itself a good reason to abandon it.

Here’s another way of looking at this argument: if you think that education is not designed to show medical outcomes, but is designed to show learning, and if the learning is done effectively, then it is a fantastic achievement. Imagine results in terms of many more people with diabetes keeping themselves out of hospital, fewer making costly phone calls to diabetes specialist nurses and practice nurses to ask about dose adjustment, and all able to confidently defend their decisions about what and when to eat. That’s what learning to live with diabetes effectively is all about and indeed, many educational programmes do show effects on these educational outcomes – increased confidence in day to day managing the condition, such as increased understanding of diabetes itself, increased self esteem and decreased anxiety and stress related to diabetes, to name but a few.

Here’s our suggested framework for success that might just tick the box for improved information AND improved education for people with diabetes and boost these audit figures no end

• Everyone diagnosed with diabetes follows a pathway straight to a group-based education programme within 3 months of their diagnosis – this is seen as the treatment for the first few months.

• There are few and specific reasons why someone should not undertake this pathway: for example, they are admitted to hospital or they are mentally or physically ill to the extent that they cannot manage their life alone, or they are in an institutional setting (although there’s no reason not to provide diabetes education in prisons or secure hospitals, is there?)

• The initial, group-based education programme is followed by update group education sessions every 6 months, which could be followed by one to one appointments if necessary

• Medical annual reviews for diabetes complications screening are scheduled at the appropriate time each year.

• Attendance and appointment logs for the education programmes are kept for each individual, which include invitation information and the person’s own reasons for not attending (if this is the case), and these are what is submitted to the national diabetes audit each year.

Not only would these data provide a much more accurate picture for the National Diabetes Audit, but this kind of pathway would encourage all diabetes services to be truly educationally focussed, staff to gain badly-needed skills and qualifications in education and learning and, most of all, people with diabetes to feel that they are getting what they need – information, answers to their questions and support from other people experiencing the condition, often one of the most overlooked and under utilised resources in the educational toolkit. Having all this would certainly be a welcome tick in the box!


National Diabetes Audit 2010-2011 Report 2: Structured Education

(download from right hand panel)

Diabetes fuels heart failure risk