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!


References

National Diabetes Audit 2010-2011 Report 2: Structured Education http://www.ic.nhs.uk/diabetesaudits

(download from right hand panel)

Diabetes fuels heart failure risk
http://www.bbc.co.uk/news/health-20629398

Remember, Remember…

Even though it’s the right day, the title of this blog doesn't continue with 'the 5th November' (as you might have been starting to sing in your head). Instead, the next line is 'remember, remember... all the basics of living with diabetes'. We're referring to those small actions and timely interventions that can make the crucial difference between diabetes fitting neatly into your life and you constantly feeling you're backpedalling to keep up with it and pick up the pieces.

Take blood testing for example... yes, it is a pain, can be messy, inconvenient, embarrassing even, but without it, maybe you get an embarrassing hypo, an inconvenient thirst or the annoying call of the loo every 5 minutes. You get the idea?

To celebrate World Diabetes Day this month, we will be publishing a brand new book with reminders of all these essentials, revisiting the basics of diabetes and answering some of those often heard questions-to-self 'why am I doing this?' or, more often 'how did I end up in this situation?' If you've ever experienced this, we may be able to help you - just watch this space and our website for more info on when this useful addition to your diabetes bookshelf is available!

And importantly in this blog, we also want to ‘remember, remember’ something else: World Diabetes Day itself. It's a day supported by the International Diabetes Federation and celebrated around the world on 14 November, the birthday of Frederick Banting. Banting was a member of the Nobel prizewinning team who discovered insulin back in the 1920s. Blue is the colour of the WDD symbol, and many countries, towns and cities light up their most iconic buildings in blue to mark the occasion. It's a day to reflect on what's needed in diabetes care here and now.

With so many days and weeks set aside for different conditions these days, it's easy to think this is just another one, albeit with a good gimmick. Here's why we think it's important...

In the 1920s, the treatment for diabetes looked simple: insulin transformed people from emaciated remnants of humanity to vital beings, restored like the biblical Lazarus to their families and to life. Many of those who were first treated with insulin went on to have long and fulfilling, even pioneering lives, like Elizabeth Hughes Gossett, who died in her 80s after over decades on insulin, and Robin Lawrence, the famous doctor and founder of the British Diabetic Association, still thriving as Diabetes UK.

A few years down the line and for very many more people with diabetes, however, the picture was not so rosy. From the miracle of restoring life, the ravages of long-term high blood glucose levels became clear. Lost limbs, blindness, kidney failure and miscarriage and stillbirth rates spiralled upwards among those with long-term diabetes. It became clear that there was much more to diabetes than taking a daily injection of insulin and preventing hypos at all costs. Landmark research studies followed, showing that these catastrophic complications CAN be prevented and careful surveillance of their health both for and by people with diabetes must be taken, throughout their lives. In addition, it’s now known that Type 2 diabetes itself can be prevented through specific identification and intervention among those at risk.

It's great to say that modern day diabetes care can offer this care and prevention. Unfortunately, though, modern day diabetes care is not everywhere and not for everyone. Some governments still ignore the vast problem of diabetes among their people and some people still miss their care appointments. Focussing on education and campaigning, and highlighting the tragedies of missed diagnoses and lost working lives, are all important features of World Diabetes Day, as well as celebrating the successes and massive strides forward that are made by dedicated scientists, health professionals and people with diabetes themselves each year.

So don't forget to remember World Diabetes Day and maybe mark it with something special, however small, that signals your commitment to spreading the word. We've put together some ideas to start you off...

• Tell someone (anyone!), a single fact about diabetes, or your own diabetes, to raise awareness about it and its impact
• Dress in blue for the day - and tell people why
• Make a small donation to a local or national diabetes charity
• Make some blue-iced cupcakes and take them to work or school
• Visit the World Diabetes Day website to find out more about diabetes worldwide and spread this information on your social networking site
• Make a commitment to yourself if you have diabetes, to find out more about a particular aspect, or get help with something that is concerning you about it

Whatever you do, it will make a difference. Oh, and another thing to remember… put 14 November in next year’s diary to do it all again!

Websites

World Diabetes Day

Successful Diabetes

Insulin pumps: an experiment or a solution?

Insulin pumps are being used increasingly in diabetes, and a comment made by someone with diabetes before they started using one got us thinking. They said that they had undergone so many discussions to make sure that they were suitable for a pump, that they were scared of what might happen if it didn't work for them. They felt pressured to make it work, and also got the feeling that they had a one-off chance of trying a pump, so if using it didn't go well they would never get the chance again.

Hearing this reminded us that insulin pumps are still not seen, in most diabetes teams at least, as a standard choice for the treatment of Type 1 diabetes. Despite the clarity of NICE guidance (NICE, 2008), people still have to undergo relatively rigorous assessments from their diabetes health professionals, and also insulin pumps are used in many cases as a 'last resort' rather than just one of the potential insulin delivery methods to choose from.

Why is this? Well, insulin pumps are regarded by many diabetes teams as an expensive luxury that should be reserved for a select few people with diabetes. However, expensive relative to what? Many long-term conditions have far more expensive investigations and treatments, including sophisticated scans and surgical procedures, and by comparison the 'routine' treatment for diabetes to keep people healthy and prevent complications is relatively cheap even when insulin pumps are included. They also have the added advantage of taking away the sheer tedium and public nature of insulin injections, two aspects that have such an impact on how people cope with having type 1 diabetes. In these cash-strapped NHS times, there is a danger of diabetes health professionals succumbing to the pressure to use the cheapest treatments rather than those that people might prefer long term if given a real choice.

So come on, the world of diabetes in 2012. Let's start putting insulin pumps in their right place - as a real choice for the majority of people with Type 1 diabetes, in common use in every diabetes team, with all health professionals trained and competent to use them.

To pump or not to pump? Let us know your thoughts…..

Reference
NICE (2008) Diabetes - Insulin pump therapy (TA151)
http://www.nice.org.uk/nicemedia/live/12014/41300/41300.pdf

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

Let's Hear it for Listening

Yesterday the Department of Health announced a new rating for GP surgeries – marks out of 10 for ‘patient experience’. The rating is designed to enable people to make comparisons between surgeries when deciding which surgery to register with. A score of 10 is high and it is based on information given in the patient’s survey, a questionnaire given to a random selection of people visiting their GP after their consultation. You can see the ratings on the NHS Choices website.

A key new factor included in the rating is ‘whether doctors and nurses are good at explaining things and listening to people’ – part of the job description of a health professional, you might think, and certainly this factor is welcomed by the Patient’s Association who say they hear increasingly from people who are not listened to effectively. However, this seemingly straightforward aspect of a consultation being rated has raised some strong feelings among healthcare staff. A comment from a practice manager in the health professional online magazine ‘Pulse’ yesterday was that maybe patients should be rated on their ability to listen as many problems arose because of people ‘failing to remember the basic information they have been told’. This comment drew a number of ‘well said’s from other contributors, among them a GP who felt that ‘It’s about time patients' responsibilities were highlighted as well as doctor’s’.

It sounds from all this, as though both patients and doctors feel frustrated – patients because they don’t get enough time to take in information properly, and doctors and other health professionals because their attempts to give the best care are hijacked by government pressure and targets, for example having to deal with a number of medical issues in only a 10 minute consultation. When stressed like this, it’s not surprising that both parties are tempted to blame the other.

But could there be another suspect entirely that is to blame for the mismatch between expectations and reality? namely the system in which care is delivered. For example, we have often heard from health professionals who have been given extended consultation time alongside undertaking a course, to help people manage their diabetes more effectively (‘Insulin for Life’: Chaplin, Widdowson and Reeve, 2012). They report that they found the benefits of conversing with people in a more relaxed way about their lives, challenges and hopes and dreams was incredibly useful, not to mention satisfying. Even more importantly, this approach improved outcomes for both patient and health professional.

This would seem to suggest that, in long term conditions at least, that systems need to change to accommodate the needs. In the above example, many GP surgeries also began dedicated clinics for diabetes as a result of their experiences, and have found it a really effective way of meeting the needs of people with diabetes. This suggests that there needs to be a practical and meaningful stimulus to make change happen.

By coincidence, an editorial in recent edition of Diabetic Medicine (Cradock and Cranston, 2012), addresses just this point. The authors suggest that much more ‘emotional mastery’ - support for people with diabetes to deal with the stress caused by taking care of their diabetes - is needed alongside ‘insulin mastery’ (dealing with the practical aspects). This suggestion is based on research showing that at least some diabetes-related stress may actually come from the diabetes consultation itself. This is because traditionally, the consultation places medically-based expectations on the person with diabetes, causing feelings of anxiety and guilt and thus contributing to raised HbA1c levels. Creating a system of care which places much less emphasis on insulin and much more on reducing the emotional effects of diabetes may well be an important factor in reducing HbA1c – the ‘holy grail’ of most current diabetes services.

Perhaps the findings of such a model could be shared with health services as a whole and adapted so that both health professionals and people using their services can feel less pressured, less blamed and become more healthy as a result? After all, as Einstein himself said: ‘doing the same experiment over and over, and expecting different outcomes… is the definition of insanity’. Perhaps given its benefits, healthcare professionals may not be so defensive about changing the experiment to include more listening?

References

Chaplin, S, Widdowson, J., Reeve, B. (2012). The Insulin for Life programme: nine years on. Practical Diabetes, 29, 2 (supplement)

Cradock, S., Cranston, I. (2012).  Type 1 diabetes education and care: time for a rethink? Diabetic Medicine, 29, 2, 159-160

Department of Health (2012). Government opens up data to benefit patients and GPs online

http://mediacentre.dh.gov.uk/2012/06/07/goverment-opens-up-data-to-benefit-patients-and-gps/

High blood pressure: Plenty of hype about hypertension

It’s fantastic this week to see diabetes as a front page headline on the BBC Health website, the subject of a new report on the national diabetes audit for England. It shows that only about 50% of people with diabetes have blood pressure below the recommended levels. Hypertension, the term for blood pressure higher than the recommended levels, is an important issue in diabetes as it is common but often silent, and can cause all sorts of problems, including strokes and kidney problems, both cited in this report. It can only be a good thing that public awareness is kept high about this condition.

However, it’s a rather less good thing to read some of the terminology used in the report. This kind of suggests that people with diabetes themselves are deliberately putting themselves in the way of these raised levels. It says that people with diabetes are ‘failing’ to control their blood pressure, and are ‘told’ to keep it under 130/80. The implication is that they are not doing as they are told or making the grade, as if it were some sort of exam they have to pass to gain approval. Added to this, for good measure, a fear factor is thrown in, namely that people with diabetes suffer ‘record levels of stroke and kidney failure and are dying years younger than the rest of the population’. 

Whilst we are sure these implications and scaremongering are not conscious reprimands to people with diabetes, these kinds of messages are not necessarily helpful in enabling people to take action to rectify what’s going wrong. For a start, blaming people or telling them off is rarely effective in changing behaviour and making people fearful of consequences is more likely to lead to inaction than proaction. Equally, it is not the fault of individuals that they are more susceptible than others to a particular condition.

The Department of Health is also cited in the report telling people what to do. In this case, health professionals are exhorted to ensure all people with diabetes (which they term ‘diabetic patients’) have their blood pressure checked and to give them advice and treatment. Again, this gives the suggestion that this is not already happening, and is more likely to cause indignance amongst health professionals than make a useful contribution to their work.

How about other, perhaps broader ways of looking at the issues? Are there other factors which might contribute to so many people having high blood pressure? Firstly, a few ideas about this in relation to the suggestion that it might be people’s own failure to control their blood pressure that has led to this problem:

·      Someone living with type 2 diabetes once told us in a meeting ‘diabetes doesn’t come to the party on its own, it brings its friends’ – in this case high blood pressure, high blood lipids and being overweight, all of which are frequently present alongside type 2 diabetes in particular.

·      Type 2 diabetes is a condition whose progress is not always easy to understand. Even with the best efforts of all concerned, it becomes harder to manage over time and co-conditions such as hypertension can be equally hard to control.

·      When treatment is prescribed for high blood pressure, it often involves taking multiple different sorts of tablets, some of which are not always palatable or tolerable. To get the right mix for an individual, a series of different combinations may need to be tried. The more tablets there are prescribed, the more risk of confusion and forgetting of doses.

·      People respond to medication differently at different ages, ethnicities and with other illnesses or complications of diabetes.

·      It’s much more difficult than anyone makes it sound to apply the commonly cited ‘simple lifestyle advice’ such as losing weight, taking more exercise and eating more healthily to manage high blood pressure, and even more so when you also have diabetes.

Secondly, some thoughts in relation to healthcare professionals giving advice and treatment:

• There can be flaws in the way advice is given – for example, a blood pressure check may be taken, but people are often not informed of the actual level, just given a broad message that it is ‘ too high’ or ‘it’s better than last time’. This is not necessarily meaningful and is unlikely to lead to concrete action.
• While there are nationally agreed treatment recommendations for what medication can be prescribed and in what order, sharing these plans with the people actually affected is not common. This means that they have not necessarily been informed whether a new tablet is an additional treatment or a replacement, which can result in under treatment of the condition (and also unused supplies cluttering people's cupboards). 
• Even when the best advice is given, and care taken that it is clearly understood, there is also the question of how it can be practically implemented – for example, a tablet regimen that involves taking different pills at different times of the day can be really tricky to fit in to any lifestyle.

As ever with reports such as this, the headline news is often the most dramatic. Short reports need to have soundbites to capture the media’s attention and it’s great that this is obviously the case with the announcement of this report. But behind the headlines, let’s not forget that living with diabetes and hypertension is a marathon not a sprint, and people need some practical ways that they can make a difference to their blood pressure levels that give them a sense of control and reward rather than being thought of as at the mercy of health professional and medication instruction.

We’d like to offer a few other suggestions that could make a difference to high blood pressure, but are less often talked about in the excitement of the medical side of things. So if you have high blood pressure and want to try something different, these practical ideas could help:

·      Relaxation – from taking 2 or 3 deep breaths and exhaling gradually a few times a day, to formal relaxation tapes or classes: it all helps to calm you and your blood pressure down

·      Take your own blood pressure with a machine bought from the high street chemist, keep records and look for trends. This puts you firmly in control and will give you levels to compare ‘before and after’ when you make any changes in tablets or your lifestyle

·      Ask questions of your GP or practice nurse, and find out what your actual level is and what you are aiming for it to be. The more you know about your blood pressure, the better.

·      Find out more about blood pressure in general, on Internet sites or through books and leaflets. Being informed like this helps you think about your blood pressure in the context of your overall health

·      Talk to other people who have high blood pressure or who have treatment for it. Can you learn anything from their experiences?

·      Check with your GP or pharmacist about possible interactions among the tablets you are taking when new ones are added and ask them to ensure you are taking the least number possible per day. The less tablets you have, the less likely it is you will forget to take them!

·      Keep a mood diary and see if you can link your high blood pressure to the way you are feeling emotionally. It may be that you need treatment for anxiety or depression as well as, or even rather than high blood pressure

Reference

http://www.bbc.co.uk/news/health-17626129

10 April 2012 15.00

Whatever your role, what’s your experience of high blood pressure, diabetes and discussions about it with health professionals in consultations? What works or doesn't work for you or someone you live with or know? This blog is open for discussion!

Diabetes UK Annual Professional Conference 2012: Forwards with a Backward Glance...

They say that past experience can influence the future and there was definitely a flavour of this in Glasgow this year. Over 2000 health professionals from around the globe gathered at this annual event for a cornucopia of clinical and scientific updates, professional networking, product exhibitions and of course socialising! This conference is a fixture in our calendar and this year we had the honour of presenting a main session entitled ‘patient centred practice: what it really means’.

The sense of retrospect came mainly from the named lectures: these are peer-nominated invited lectures in recognition of the contribution made in a particular field. The lectures themselves are named after people the organisation wishes to honour personally. By definition, the speaker looks back on their work and describes its importance and value. Two examples stood out for us this year: the Janet Kinson Lecture was given by a speaker who emphasised how much maths is needed for living with diabetes, for example for carb counting and calculating insulin pump rates,  and how a lack of maths ability can hinder diabetes management (other sessions described diabetes education courses which are starting to include maths lessons alongside the diabetes lessons, to help with this)

Another was the Arnold Bloom Lecture, which looked at the development of DAFNE, an education programme for Type 1 diabetes, through the determination of a group of professionals to emulate European models of teaching about diabetes. However, the current picture is that the UK is still short of the availability of places on this course and other similar ones, so there is still much to do going forward.

Looking to the future, a number of reports were published at the same time as the conference. These were both timely but moving, since they inevitably showed gaps in services. In particular we noticed the report on the gaps in structured children’s services, including psychological care and transitional care. This stood out because the presentation that launched the report contained video clips of parents and young people who ‘told it like it is’. Many eyes filled with tears at the bravery of a mother recounting how she had been told at clinic that ‘we only deal with the medical side of diabetes’ when she sought help for the huge emotional tsunami that had engulfed the family’s life since the diagnosis of her son’s diabetes. Another report included the variation by geography in the number of amputations for diabetes- related food and leg complications, and concluded that the lowest rates were found where services were structured and resourced properly. In a way, none of the information was new, but what Diabetes UK have been able to do is continue the fight to highlight the massive importance of these issues to individuals as well as populations and we salute them for this unwavering mission.

One very noticeable and unarguably new aspect to the conference was its colour! Diabetes UK have changed their logo and branding recently* and instead of a sea of blue and pink and the familiar pink hummingbird, the 21^st century DiABETES UK had arrived! This took a bit of getting used to, but 3 days in the ‘conference bubble’ made it feel a lot more normal. The sight of 150-plus fun-runners in the new style T-shirts, gathered bright and early on one of the mornings to run 5 kilometres round the conference venue, also added to the sense of recognition of the new colour and logo.

Other ‘snapshots’ from the conference which we felt give some clear messages for today and for the future, included:

• A recognition of how difficult it can be to manage diabetes day in, day out – the reality of self management is HARD WORK!
• How technology is really contributing to making life with diabetes easier, including the latest apps for carbohydrate counting, and insulin pumps
• How even the newest insulins’ profiles don’t always match exactly the timings of a rise in blood glucose levels after food, making it still tricky to achieve recommended levels
• 2 presentations on the subject of listening well, including the quote from one ‘listening is a healing and therapeutic agent’
• The symposium about Diabetes UK’s Peer Support telephone and email helpline**

And what of our own presentation? We were delighted that so many people attended – over 50 – considering the time slot, which was at the end of the 2^nd very busy day at conference. All those present took part in the activities we had designed, including a multiple choice quiz to work out the most person centred statement and a worksheet to share in groups how they could improve the environment in which people experience clinics and surgeries (for example how they are welcomed on arrival) as well as the consultation itself. Many good ideas and points were raised and discussed, including the memorable contribution from one participant at the end: ‘this has really made me wonder if I am as person centred as I think I am, I am definitely going to make changes’. One lucky participant also won one of our workshops in our prize draw at the end of the session and we are really looking forward to providing this later in the year.

The conference seemed to be a great success and we came away even more inspired and ready to work on the issues revealed by the research presented, and provide even more useful information and resources to meet the needs identified. Thank you Diabetes UK!

*         www.diabetes.org.uk

**         www.diabetes.org.uk/peer-support

To attend clinic or not to attend it - but is that really the question?

A short article, published in the latest issue of Diabetic Medicine (the professional journal of Diabetes UK), describes research into whether young adults in the UK choose to attend their clinic appointments or not. The authors looked at records of attendance and also interviewed 17 young people about what influenced whether they attended or not. 

The results showed that, rather than might be expected, having ‘poor control’ (defined as having a high HbA1c level), made it less likely that people would attend, because of the fear of being judged by health professionals. Another major reason for not going to clinic was literally not being able to get there because of work or study commitments, including the attitudes of employers to taking time off for health-related appointments. The authors conclude that health professionals need to be more supportive and non judgemental, and also that reminders about appointments and flexible clinic hours are factors which will encourage people to attend more.

That sounds fairly straightforward, doesn’t it? Or does it? Sending a text or email reminder is a good idea and a very simple task, but does simply knowing about an appointment mean that people will attend it? The decision-making sounds much more complex than that, given the information about potentially feeling judged. In our experience, this complexity is not confined to young adults and whether to attend is often based on what the answers might be to questions such as these:

‘I already know my glucose levels have been high recently - will I hear bad news?’

‘Do I trust them enough to tell them how bad things are at home at the moment?’

‘Can I deal with MORE criticism right now?’

And even when things are going well, the questions or thoughts might include:

‘Is it a good use of my day off, to wait for ages, just to be told to come back in 6 months and keep up the good work?’

‘It’s a welcome break not to have to think about it all at the moment while things are going well’

On the other hand, health professionals pride themselves on being available to help people who are struggling and of course, know very well the potential negative outcomes of not attending clinic appointments or having longstanding raised glucose levels. Some health professionals, such as GPs, are actually paid higher amounts of money if people in their care have better diabetes  (measured by HbA1c). They often genuinely worry about people who don’t attend and also become frustrated about empty appointments that could have been used for other people, and other upsets to the ‘system’. It’s no surprise in a way that a judgemental attitude can creep in, although most health professionals would be horrified to think they were being seen in that light.

So the real question is, How can we achieve success with lifelong attendance at clinic visits without damaging the delicate mix of emotions, self esteem and ‘having a life’ for both people with diabetes AND health professionals? Here are a few ideas of what could happen, which both people with diabetes and health professionals could influence:

·      Start as you mean to go on, with a view that a consultation is a partnership, not a dictatorship. You are working together on the ‘diabetes project’ that is everyday life with diabetes for the person with it

·      Build in a bit of preparation for the consultation, for example, the person with diabetes requesting or being offered the chance to see their test results before they attend, so that they can decide what aspects they want to discuss. Also, considering their own priorities and questions for the visit

·      Starting every consultation with a discussion of how the person with diabetes is feeling and thinking and what questions they have, rather than with what the health professionals think. This way of doing things is known to increase satisfaction and attendance rates

·      Thinking of the person with diabetes as a person rather than a patient, and a health professional as a supporter (and also a person!) rather than an authority figure. Terminology, as we explored in an earlier blog, can make a huge difference to attitude and relationships

·      Finally, recognise that there is always a reason for the way people behave. Having some curiosity and care, and being brave enough to explore what is keeping people away from clinics, or why the relationship between health professional and person with diabetes doesn’t seem to be working, could make a vast difference to the future.

What do you think of these ideas – and how does all this fit with your experiences of either providing or receiving care in a diabetes clinic system?

Reference

Snow, R., Fulop, N. (2012). Understanding issues associated with attending a young adult diabetes clinic: a case study. Diabetic Medicine, 29,2, 257-259

Indecision about me, without me? A survival guide to the new NHS in England

The UK government’s health reforms are edging ever closer to being enshrined in law. They represent a massive shake up of the structure and funding of health care in England, and the care people receive for long term conditions is right at the heart of the changes. But that doesn’t mean the NHS and diabetes care is safe – far from it. Read on…

We have followed the progress of the health reforms carefully since they were introduced in the White Paper ‘Equity and Excellence: Liberating the NHS’ in 2010. This paper lays out the plans to hand funding for local health care to groups of GP practices, to be called Clinical Commissioning Groups (CCGs). It also shows how public views of health services will be incorporated more effectively into planning, through an organisation called Healthwatch England. The CCGs will be able to commission, or in other words buy, care from any provider that meets the needs of their population. Some services will be centrally commissioned by a body called the NHS Commissioning Board.

Public health is also receiving a makeover, with Directors of Public Health being appointed for each locality. These posts will be closely linked with local authorities, and detailed plans for this service are being announced shortly.

Meeting people’s health needs more locally and more effectively is one of the main promises of the reforms. The aim of making sure that people are much more involved in decisions that are made about their condition and treatment is also emphasised. The phrase ‘no decision about me, without me’ is used to describe this, and indicates the ambitious nature of the proposed changes. More choice is envisaged too, with, for example, the chance to choose a GP away from the area where you live (for example, nearer to your workplace), and also the ability to change your GP more frequently and easily. 

Some of these ideas sound pretty good – more choice, and having more of a say in your consultations, can be a good thing. So too giving more purchasing power to local GPs who well know the needs of people using their services. However, it’s one thing to commission economic and prompt services for procedures such as cataract surgery or hip replacements, but quite another to ensure that diabetes is looked after properly. This includes a lifetime of screening for complications, the provision of regular and accurate prescriptions, occasional unpredictable acute episodes that might require hospital stays, plus an ongoing structured education programme being in place and monitored.

The changes proposed above have yet to become law. The Health and Social Care Bill is still going through parliament, and there is still a huge amount of detail being argued about. There have been a number of amendments already and may be more, as those who are against the current format try to curb its more extreme measures and protect the NHS as a national organisation by ensuring the Secretary of State for Health retains overall accountability for its performance. 

There is so much to consider, and so much associated politics, it would be easy to patiently await the ‘brave new world’ when the Bill becomes law. On the other hand, there is much at stake. The last decade has seen unprecedented advances in diabetes care in terms of treatments which are inevitably more expensive, as well as more structured care and an increased emphasis on the availability of structured education. It has resulted in more people than ever receiving systematic appointments for annual review, which in turn results in less complications or at least the complications being detected and treated earlier. It’s possible that ignoring the impending NHS changes might mean sleepwalking into a minefield of disorganisation and fragmentation of all this good work. Another huge ‘but’ is that the changes are already starting and they have to be delivered at the same time as 20 billion pounds worth of savings have to be found by the NHS, on the Government’s orders,  to help deal with the ongoing economic crisis in the country as a whole. 

Everyone knows that reorganisation is costly, even thought it is meant to save money in the long run, and it’s also said that ‘the best way to predict the future is to invent it’. Since the consequences of any changes made will affect people with diabetes themselves, we have created a mini ‘survival guide’ to the new NHS so that you can look after yourself or your loved one with diabetes, and you come out of it with your diabetes care intact, even if there is chaos in the system during the changeover period. 

The SD Survival Guide to the New NHS:

• Find out what’s going to happen locally – via your diabetes service, your GP or your Primary Care Trust website – find the contact details via www.dh.gov.uk or www.nhs.uk. You don’t always have to make an appointment in person, you can phone or email them and ask them to update you regularly, and some websites allow you to sign up to be informed of the latest developments
• Read about the NHS reforms in relation to diabetes, for example via NHS Diabetes (www.diabetes.nhs.uk) or Diabetes UK (www.diabetes.org.uk)
• Keep track of the changes and the Health bill’s progress towards law, via its pages on the UK parliament website, at www.parliament.uk (search Health and Social Care Bill, 2010-11) and sign up for automatic updates
• Spend a bit of time thinking ‘what if’ in relation to your own diabetes care. For example, ‘what if my GP decides to buy care from a different hospital than the one I go to at present?’; ‘what if I decide to change my GP?’ ‘what if I don’t’ receive the recommended level of care from a new provider?’ etc. The issue for you will be individual, but from this you can create questions to put to your local services
• Contact your MP and ask about the changes and how they will provide for diabetes services in your area. Again, you can email or tweet as well as attend their surgery in person. If you don’t know who your MP is, now is the time to find out! There’s a complete list of MPs at www.parliament.uk/mps-lords-and-offices/mps/
• Be aware when your annual review for diabetes is due, and ensure you have an appointment for it as the time approaches. If your appointments are postponed or changed, ensure you have a new date rather than an open invitation to attend
• Be proactive: if there are changes to your local service, don’t assume you will be given information or a new service will understand exactly what you need – ensure you have a contact number and remind yourself to check regularly what is happening.
• Ask questions: you or your loved one with diabetes are the ones who will be affected by changes, especially as a new system is put in place. Keep a list of questions and don’t be afraid to ask them!

We want the new NHS to be even better than before, and also to provide the very best diabetes care. The proposed changes offer a lot of potential – but it can’t be realised alone. We all have to do our bit as architects, building the system that creates the reality of ‘no decision about me, without me’. 

What’s your view of the NHS changes?  Are you worried what might happen to your diabetes care or confident that your needs will be met?  The discussion is open!