Wednesday, 17 December 2014

Reflections and Resolutions

It's traditional at this time of year to look back and forward, with reflections on the past year and making resolutions for the one to come. At SD, we're no different, except perhaps that our resolutions are really wishes for diabetes and healthcare in 2015 rather than our own ambitions (although we do have those, honest!). So here goes with our take on 'r and r'

It's been an amazing year, full of great experiences, both locally and abroad. We've proudly held workshops with groups of participants from Medway to Melbourne! All have been interesting, enjoyable and above all, useful to the health professionals attending, in developing their skills and experience. We've published papers on practical, person-centred care and taken part in national conferences and advisory boards. To celebrate World Diabetes Day in November, we've proudly made type 2 diabetes education available direct to individuals, through 'Diabetes Manual Complete'. Our ambition for providing and promoting personalised approaches to living and working with diabetes has continued to be realised. We'd like to publicly thank all our customers and colleagues for working with us and helping this message to get 'out there'!

Moving on to resolutions, then. As mentioned above, these are more wishes for developments in the coming year and where we can make a contribution. Firstly, we hope for improvements in the provision of diabetes education that match the rhetoric in most documents and recommendations. The current referral and uptake for people with diabetes is tiny, when the impact of it can be huge, if not life-changing. Currently, millions of people with diabetes are being failed by diabetes care services, which focus more on medical aspects than learning to live with the condition. Our contribution is to raise awareness of an effective and cost-effective programme that can be delivered in existing consultation time, the Diabetes Manual Programme, and its personal 'sibling', that people can now buy direct from SD,'Diabetes Manual Complete'.

Secondly, we hope for an even greater emphasis on emotional and psychological aspects of living with diabetes and enabling more people to access help and support. Whilst, rightly, medical services can make referrals to specialists, our contribution is to make available 'Successful Diabetes Signposts', a large collection of reliable self-help organisations and resources, so that people can invest their time in identifying their own needs and helping themselves to support alongside (or perhaps instead of), waiting for clinical referrals or appointments.

Finally, we wish for personalised, collaborative care for long term conditions such as diabetes to become far more the norm than at present. True collaborative care involves the person's thoughts, feelings and wishes at every stage of their care. In our view, central to this is results-sharing. Results-sharing shows the person what is happening to the all-important numbers on which their treatment decisions are usually made. Collaborative care cannot be happening if these results are not made available to the person on whom the consequences of these decisions will fall. Currently, several enlightened services have chosen to offer to share results with people with diabetes, with pretty universal approval. However, these tend to be specialist clinic 'pockets' rather than in diabetes care as a whole, for example in general practice. Our contribution is to offer workshops and publications on how personalised, collaborative care can be implemented and the evidence to back up its effects.

If these wishes are realised in 2015, it will truly be a year of progress in personalising diabetes, and other long term conditions, care. We are looking forward to doing even more, to make them come true!

In the meantime, all at SD join in wishing you and yours a very happy and healthy Christmas and New Year!

Tuesday, 30 September 2014

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.


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

Sunday, 6 July 2014

Will Commons Health Committee Help Turn Rhetoric into Reality?

Brilliant this week, to see a UK Government Health Committee report into the management of Long Term Conditions. It’s very long, over 200 pages and contains some very fine words indeed, based on a great deal of evidence gathered from a large number of organisations and individuals. It’s a fascinating read, including the transcripts of the discussions between the committee members and those giving evidence.

The committee gives its view that care for people with long term conditions cannot fit into the traditional model of health care, which is based on curable, ‘single episode’ illnesses. It says that more time is needed to hold more personalised discussions with people about their wants and needs, that the person, as well as the condition, needs to be treated, and that care planning, including results sharing and giving people access to their medical records is an appealing way forward. It urges NHS England to take note of their findings and implement new ways of long term conditions care. It seems to challenge the Government and NHS England’s response to the growing numbers and needs of people with long term conditions by describing their strategic response as unclear and insufficiently urgent.

This is very welcome news, and absolutely bears out our own experience when offering our training and skills development, which is that the rhetoric of policy is very far removed from the reality. This is particularly noticeable in relation to promoting person-centred approaches, and collaboration in care. Practitioners understand the need for this and are keen to put it into practice, but the systems that they are working in and with (for example the targets to be achieved to receive funding and payment) simply do not support it. A particular example recently has been cited in a number of our workshops. It concerns the target to reduce unplanned hospital admissions among older people. Each organisation needs to identify a certain percentage of people, upon which they are rigorously measured. It is taking up a great deal of time and effort, to the extent that trying to discuss, let alone implement, any other practices (for example care planning among the younger, able bodied) that might actually prevent people in future being vulnerable to admission, is almost impossible. The short term nature of these kind of initiatives is striking and the idea of ‘cart before horse’ often springs to mind, as does the expression ‘what gets measured, gets done’ (and, sadly, its reverse)

Two passages of the report are worthy of reproducing here as they so resonate with the above:

‘We are not convinced that focusing on measures to reduce admissions to the acute sector will effectively address the underlying issues in management of long term conditions which seem to be driving patients….into acute care (Page 5, Summary)


‘we have been struck by the mismatch between the needs of 15 million service users with one or more long term conditions, and the design of health and care system set up principally to treat and cure episodes of ill-health’ (page 43)

Although reports such as this one take time to circulate and get attention, we are at least cheered that it seems that some aspects of Government are not only listening, but hearing, and producing strong words. Seeing those words turned into action – and quickly – could really make a difference. We watch and wait, while continuing to spread the word about these important issues in our own publications. Well done, that Health Committee.


House of Commons Health Committee (2014). Managing the care of people with long-term conditions. London. The Stationary Office.

Person-Centred Practice for Long Term Conditions: a Concise Guide to Success

Thursday, 22 May 2014

Patient Activation – is this what we need?

The Kings Fund has released an interesting and, in relation to our last blog post, extremely topical, report, called ‘supporting people to manage their health’. You can probably see immediately why it caught our eye and attention here at SD.

The report is all about a measuring tool, a questionnaire called the Patient Activation Measure (PAM). People are asked to state in percentage terms, the extent to which they agree with a number of statements in relation to taking charge of their health and healthcare. The higher their score, the more ‘activated’ they are, for example to undertake healthy behaviours, seek help more promptly and stay out of hospital. The reverse is true, with low scorers tending to be more passive or ignoring of their health, resulting in more emergency visits, appointments or not taking prescribed medication. The implications of these different activation levels may make a profound difference to health outcomes.

The PAM has been around for a while, and it has been used successfully to show relationships between activation scores and health related behaviour in a variety of different populations and conditions. It’s a very useful measure, especially in the current health climate of encouraging more participation in healthcare and the need for active self management of long term conditions, such as diabetes. These conditions require relentless decision-making and action on the part of the person with it, day in and day out, 365 days a year. Knowing who is more likely to take this action and who needs more support to be successful is surely a good thing, and where this measure can deliver, right?

Well, that all depends on if the information from the measure is actually acted upon, and what approaches are used to intervene. So often, knowing something because it’s been measured and acting on it are two very different things and of course it’s much, much more difficult to take the required action than to measure it. For example, it’s one thing knowing that a group of people are at risk of diabetes (because their blood glucose has been measured) than it is to put in place the changes needed and the intensive support for those people to make the changes and sustain them to prevent their developing diabetes.

Arguably, we know more now about ‘the state of the art’ of diabetes care and education than ever in history, but despite these figures, there are still tens of thousands of people with the condition who are not receiving basic care and even more not receiving any formal learning programme, such as a structured education programme. This is despite care and education programmes being tried, tested and available.

One of the mechanisms for measuring outcomes in the NHS is the Quality and Outcomes Framework (QOF), which, briefly, gives points to health providers for taking certain actions. The points translate to payment. The QOF has recently had an overhaul for the year starting in April 2014 and now includes points for referring people to education programmes. Note, for referral, not attendance. The former can perhaps be measured much more easily, even though it is only the attendance at programmes that will deliver the positive outcomes to the people attending. To us at SD, this seems a triumph of measurement over gaining benefit and as far as we are aware, there are no plans to change the QOF to measure attendance, although we sincerely hope that will come to pass.

So, we have to be careful about reports such as about the PAM which extol the virtues of measurement, and be sure to ask much more searching questions about how the resulting data will be used.

To be fair, the report does mention the kind of interventions that will help people to become more activated. Unsurprisingly, these are all well-known and frequently mentioned here, and in other places: building confidence; coaching; encouraging learning and mastery of their condition; peer support and attention to emotional care and stress reduction. These are not widely commissioned in the present NHS. In diabetes care, they are often the very components of the education courses, mentioned earlier, which people are not receiving, which seems to be an ironic twist.

On a linguistic note, which you may know we consider very important, it is a shame that the measure and such a well-titled report which is about all our lives and strives as humans, still refer to ‘patients’. This persists the apparantly patronising delusion in healthcare circles that there is some divide between ‘patients’ and ‘others’. Unless there is to be a sibling measure entitled ‘a health professional activation measure’ or ‘a non-patient activation measure’, perhaps a more accurate title might be the more neutral and accurate ‘health activation measure’?

Having said all that, it’s always welcome to have a publication which cites evidence and good practice to add to the many ‘arms’ who push for change and implementation of effective practices that people benefit from so successfully. In that respect it is a valuable addition to the literature and SD is already ‘activated’ to help spread its words very widely.

Supporting people to manage their health: an introduction to patient activation. London. The Kings Fund. May 2014.

Mind Your Language – Oz Style! Successful Diabetes Blog December 2011

Sunday, 16 March 2014

Being Person-Centred – Are We Nearly There Yet?

Regular readers will know that Successful Diabetes is firmly founded on a person-centred philosophy, following the principles originally articulated by Carl Rogers and more recently described in diabetes care specifically, as empowerment, by Bob Anderson and Marti Funnell and their colleagues.

Our person-centred philosophy informs all SD’s activities, including the structure and format of our books and workshops. The central question in designing any of our activities is ‘how can this material be made meaningful to the individuals experiencing it?. Answering that question gives rise to the order and type of activities included for learners in a workshop, for example and to the language and style of the writing in our books. As described by Rogers himself, a person-centred approach is not something to be applied, but ‘a way of being’. In this way, work flowing from philosophy feels very natural and it also offers a ready made source of evaluation and quality assurance.

As previous SD blogs have mentioned, with such a philosophical background, it is extremely welcome to see the current emphasis on personalisation in UK health policy, with documents describing and exhorting the importance of prioritising a person’s own wishes and needs, and sharing decision making, especially for long term conditions. Evidence supports the positive impact of this on people’s health and health service use and also on cost and satisfaction with their experience of care.

The Health Foundation in particular has released a number of practical reports on the subject, including the recent review ‘Helping Measure Person-Centred Care’ which includes detailed descriptions of the measures and tools available, advice for undertaking measurements locally and several hundred references. The same organisation also recently launched a dedicated online person-centred care resource centre, which seeks to promote the approach throughout the health system.

Our own contribution to spreading the word about person-centred care is embodied, for example, in our recent ebook about person centred practice, in other books and in training for personalised care planning (PCP). The latter is a way of organising care for those with diabetes and other long term conditions to prioritise their thoughts, wishes and needs as much as those of the health professional. It contrasts with the traditional model of the health professional being the dominant force in the relationship, with their knowledge and opinion prized more than that of the person consulting with them.

The PCP approach has been born out of the changing world of health, with people no longer suffering predominantly with acute, ‘fixable’ or short term conditions, but increasingly living with incurable but long term conditions that require a multitude of their own daily decisions to be made, without the guidance of a health professional. Hence, care services must be geared towards promoting such decision-making skills for self-management.

Most recently, it was a privilege to be a co-presenter of a workshop about consultations at the Annual Professional Conference of Diabetes UK*. Our 5-strong team created an experience for the participants, which enabled them to reflect on their own struggles with consultations and consider them through the issues raised in short but ‘real life’ scenarios by the presenters. Much discussion and insight ensued, especially about the final scenario which focused on ‘why isn’t a person-centred way of consulting more prevalent in diabetes / long term conditions care, given all the encouraging documents and evidence as to its success?’

The opinions given in response included that there is a gap between the rhetoric and the hectic reality of everyday practice, that change among health professional practice takes time and that reflection on practice to plan and evaluate changes is not valued sufficiently. Most memorably, the comment that we are so busy trying to listen well, that we may forget to shout about the importance of our consultations and their style. It was also a conclusion that showing person-centred practice by example could be powerful.

While we may not be able to directly change others, we can indeed change ourselves and / or continue to be true to our principles and philosophy. In that spirit and to answer the question in the title, no, we are not yet at our destination, but the activities described in this blog and others, are one more contribution to continuing the journey.


Health Foundation Person Centred Care Website

Person Centred Practice: A Concise Guide to Success

Personalised Care Planning Workshops

*You can download the ‘take home messages’ of workshop participants from this page

Monday, 13 January 2014

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