Is this the best use of £140 million?

Up and down the country of England, GP practices have been scrambling towards a deadline of today and are completely distracted by it.

This is the date by which many practices have to compile a register of a minimum of 2% of adults on their books who are at risk of an unplanned hospital admission by virtue of their previous history of emergency admissions, long term condition, age or frailty. The practices concerned are those who have signed up to a particular ‘enhanced service’ or ES – basically extra payments for particular activities, offered by NHS England, the body in control of delivering health policy in England.

The idea of the register is to identify and put in place a care plan, agreed with the person and any other relevant people involved in their care, for example, family carers or professionals such a social workers or mental health workers. The care plan aims to identify and share with everyone concerned, how a potential emergency admission to hospital could be avoided and then activate it when necessary.

For the register and associated actions specified in the ES, practices will be paid around £3 per head of their practice population, resulting in a typical total payment of around £20,000. This money is much needed, say the GPs who have signed up to the ES (it is not obligatory), whatever they need to do to receive it. And there are a lot of activities associated with receiving payment for this ES. If you want to read more, all the details are in the published specification. The total funding for this ES across England is £140 million. It was announced in the Spring and was initially to last for one year. However, it has been announced today that it will continue for a further year.

You may be wondering why we are discussing such an initiative, which might not at first glance have anything to do with SD’s speciality – helping people live and work with diabetes successfully. However, there is a link and it is the following:

The majority of people with diabetes and other long term conditions are not among the 2% of adults in a practice covered by this ES. They can easily take steps now to avoid becoming vulnerable to unplanned admissions in later years, as long as they are given the ‘tools to do the job’.

These tools are: knowledge and confidence to take appropriate actions, along with the opportunity to constantly participate and collaborate in decisions about their condition. Many of these skills are developed and reinforced in structured education programmes for diabetes – for example X-PERT, DESMOND and The Diabetes Manual Programme for Type 2 diabetes and BERTIE and DAFNE for Type 1 diabetes, to mention just a few nationally available programmes. The same body who has announced the ES, NHS England, has recommended that everyone with diabetes receives an education programme to actively help them learn to live with it.

The problem is that these education programmes are not available to all people diagnosed with diabetes, and even where they are technically available, the numbers of people being offered, or taking up the offer of a place, are vanishingly small. We have covered this, at worst completely iniquitous, and at best rather ridiculous, situation in previous blog postings.

Successive annual reports have shown that less than 15% of people with diabetes overall, are either offered or take up a place. Even among the areas with the best uptake, the highest number of people being referred for or uptaking education is just under 60%.

We believe that whilst it remains to be seen whether the avoiding unplanned admissions ES discussed above will really make a difference to numbers of admissions, diabetes structured education has been shown over and over again to provide people with the confidence and skills to look after their own condition and take avoiding actions themselves, without recourse even to their health professionals. And yet the money can be found for the former, but not the latter.

So the question arises in our mind: ‘why is a sum such as £140 million not also being offered to General Practices to incentivise them to provide proper, formalised diabetes education?’ The programmes are there, they are not expensive (compared in particular to a single hospital admission), they have been shown to work, and yet they are not being used.

In our view, it’s time there was an Enhanced Service for Diabetes Education – or whatever title suits – that is, a system which specifically rewards GPs for providing diabetes education. While the present situation exists, millions of people are being failed every day by the NHS which has vowed to look after them as much as the 2% of people in each practice covered by the unplanned admissions ES.

Successful Diabetes completely supports the provision of Structured Diabetes education in the NHS for all people with diabetes as recommended. We will continue to call for it ourselves, as we have in previous posts here and in many other activities. We will also continue to support other organisations’ efforts, as well as encouraging people with diabetes to lobby their local health providers to invest in their future health by commissioning education programmes.

However, while we wait – and wait – for money to be put where guidelines are, we will soon be offering something practical in addition.

From November 14th this year (World Diabetes Day), we will be launching the Diabetes Manual Programme as ‘Diabetes Manual Complete’, a one to one, supported education programme, which is available directly to people with Type 2 diabetes who wish to purchase a programme for themselves (much as they might any other form of healthcare such as a private operation or GP consultation or prescription).

‘Diabetes Manual Complete’ fulfills all the current recommendations for a structured education programme in the NHS and is provided by diabetes and education specialists. More information about it is available now by request from SD, and will be published publicly from the launch date. People will be able to help themselves to quality, specialist education, with no referral, no waiting times and no extra appointments.

We are excited to spearhead this unique development in diabetes education, but sad that it is necessary. The Diabetes Manual Programme is available now for the NHS to commission for local people with Type 2 diabetes, and has been for many years. To date, not one local organisation has seen fit to comprehensively commission this cost-effective programme to people with Type 2 diabetes. As we have said, other programmes, such as group-based education, are also not purchased in enough quantities to meet the need.

By making ‘Diabetes Manual Complete’ available, we can help people to help themselves to the quality and expert education that they deserve and are entitled to, but are not likely to get anytime soon, partly because the NHS is ‘looking the other way’ with short- term measures like the unplanned admissions ES, and partly because commissioners and managers have not yet grasped the vital importance and long term impact of 100% coverage of diabetes structured education. As the saying goes ‘desperate situations require desperate measures’. This may be desperate but it will be effective, and in a good way, too.

References

NHS England Proactive Care Programme for Unplanned Admissions

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

Contact us about Diabetes Manual Complete

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'

Help with Hurdling: Getting over the Barriers to Self Management

A recent review article in the journal 'Diabetic Medicine' described in detail the kind of barriers that get in the way of people with diabetes from being able to successfully self manage their condition, that is, taking the actions that are likely to promote and maintain health, such as measuring blood glucose, taking and adjusting medication, looking after feet, eating healthily being physically active and taking steps to prevent or deal promptly with hypoglycaemia and high blood glucose levels.

While a review article doesn’t aim to make recommendations for changes in practice, in describing the evidence for each of the barriers, it does reveal what is effective or less effective. This is helpful because, ideally, it gives the chance for diabetes services and health professionals to use the evidence base to implement effective strategies for promoting and supporting self management and ‘lose’ the less effective ones.

Unfortunately this is not always what happens. Translating knowledge into action in relation to living with diabetes is in fact cited as one of the barriers. For example, the knowledge that persistent high blood glucose levels can lead to long term complications does not lead most people to keep their blood glucose levels within recommended ranges all the time. And it is exactly the same with health professionals – the knowledge that telling people what to do, advice giving and ‘warnings’ about complications is not effective in helping people manage their diabetes, does not stop them doing it regularly. There are other factors involved in effectively taking action and some of these are illuminated in this review article.

In keeping with previous blogs, I would like to suggest that in the evidence for effectiveness cited for each of the factors, there are as many messages for people working with diabetes as there are for those living with it, and reflecting and taking action on these could potentially help us all to feel more successful and satisfied in our efforts.

So, to make it easier than reading the whole paper in a lofty journal – who has time for that?! - here’s an SD 'key points' guide for both health professionals AND people with diabetes, along with some of the strategies that really work to promote and prize self management of diabetes, based on the evidence in this review. Think of it as your ‘hurdling guide’ - ideas for getting over the barriers when they arise!

‘Your SD Hurdling Guide’

Knowledge is important in self management. Unless someone knows what to do, why and when, they are unlikely to take useful action. However, Knowledge delivered once, or in a didactic or authoritarian way is not effective. Knowledge given in the context of an opportunity to use it, for example as part of an activity or as a result of someone's questions is much more helpful and likely to be remembered. Also, information given at diagnosis, is particularly likely to be forgotten, so must be revisited and checked. So, health professionals need to provide education and ask if it has been received, and for people learning about diabetes, they need to generate questions they need the answers to, and also check from time to time, to ensure their knowledge is accurate.

Motivation to take care of diabetes is influenced by how severe someone thinks their condition is, and how likely they believe themselves to be at risk of problems from it. Also, taking a particular action, for example starting insulin or taking up a new activity, will have benefits and barriers which will also determine whether it happens. So, health professionals need to explore with people what their perceptions are of severity, personal risk and benefits and barriers, rather than just dictate what actions they should take. For people with diabetes, being aware of the pros and cons for them of taking a particular action, and being prepared to discuss these in a consultation is very useful.

A higher level of confidence in self management makes it more likely that someone will do this effectively. Confidence can be measured on a simple 0-10 (high) scale, with discussion of the number given and working out what the barriers are if confidence is low. Discussions about confidence are vital, to shed light on what a person feels more or less able to achieve. For health professionals, this means giving people an opportunity to consider and assess their confidence and discuss it with them. For people with diabetes, it means being able to work out what they feel less confident about and why and what might improve their score in these areas.

Day to day problem solving is associated with better self management. Problem solving involves first acknowledging a problem, then working out what would improve the situation (a goal) and what action needs to be taken to achieve this. For health professionals, this means that consultations need to be based around what problems the person with diabetes is currently troubled by, then working together to set a goal and action plan. For the person with diabetes, reflection on their key problems and their preferred ways to solve them, and actively practising problem solving is helpful, to make it become an everyday habit.

Finally, social support, that is the availability of help from others, is an important factor in self managing diabetes. Support refers not only to practical, but emotional and informational help as well. People with more support seem to be more successful at taking care of their diabetes. This means that health professionals need to explore with people what kind of support they have and ways they could access more if they need it. For people with diabetes, the implication of this is to consider who and how they receive support and affirmation in managing their condition, and where there are gaps. Also, to recognise that they may need to ask for, or set up support rather than feeling like they have to 'soldier on' alone or ignore their condition for fear of what others may think.


Reference

Ahola, AJ., Groop, P-H. (2013). Barriers to self management of diabetes. Diabetic Medicine, 30, 413-420

'Doing Diabetes' - A Very Human Mission

One of the most interesting and lively discussions that often arise during personalised care planning workshops is about behaviour change and motivation. Health professionals often raise concerns about people with diabetes not meeting recommendations for their blood glucose or HbA1c levels, weight, exercise or taking medications as prescribed. They recognise it is hard for people to do these things but also express frustration that their efforts to advise and encourage seem to fall on deaf ears. As one health professional recently put it ‘they don’t seem to realise how important it is to look after themselves. I feel like I’m wasting my time’

Indeed they might be wasting their time and also that of the person with diabetes. For although the intention is excellent and the desire to help is paramount, there is a flaw in this way of thinking about helping people change. That is the underlying assumption that ‘they’ need to do something different because they have diabetes.

The reality is that, as we have mentioned before, having diabetes – or any other long term condition for that matter – does not make you automatically more motivated or successful in your efforts to make healthy changes than anyone else, or, crucially, to heed advice however well meant, from health professionals. Nor would health professionals be more successful at it, if they developed diabetes themselves tomorrow.

During such a discussion, I might ask health professionals how well they manage to adhere to ‘everyday’ health recommendations around taking exercise (150minutes/week), drinking alcohol (maximum 20 or 14 units/week for men and women respectively), calorie intake (3000/2000 a day for men and women) and eating oily fish (1 or more portions/week) Often, this produces a ripple of rueful laughter, as people realise that they don’t necessarily practice what they preach and this is nothing to do with having diabetes.

Further discussion reveals that the reasons they give for not being able to meet these recommendations – typically time for exercise, having a busy lifestyle, eating what’s available, family pressures around food preferences and not making themselves and their health a priority – are much the same as those with diabetes would give, with many more diabetes related activities to perform, for example blood testing, insulin dose adjustment, hypo prevention and foot checks, not to mention clinic appointments.

So what we establish is that motivation and behaviour change are influenced because of humanity, not the condition you live with. The key drivers are not what someone else advises you to do or recommends, but how important you think an action is, how many barriers to it are in your way, whether you believe your actions will result in benefits, whether you have confidence in your ability to take whatever action it is and also what past experience of success or failure you have had – to name but a few.

The consultation that simply gives information and advice is not going to be very helpful and might well be the waste of time and cauldron of frustration mentioned by that health professional earlier. Much more useful is one that explores the human side of behaviour – what makes you do something? What stops you? How important do you think it is to deal with your diabetes? How confident do you feel about doing what is recommended? These are all questions that could use the time much more effectively and even ones that someone could reflect on in advance.

Such an approach is truly a human collaboration and makes life much less frustrating for everyone ‘doing diabetes’ in their life or work. Thankfully it is an approach firmly ingrained in the new health policy rhetoric. The challenge now is to make it a reality.


Reference
Personalised Care Planning Workshops by Successful Diabetes

‘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?

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.