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Flat lining

A colleague (who is a dietitian, and an ultra-marathon enthusiast) recently shared a picture of her 24 hour libre blood glucose profile on Twitter. Nothing all that remarkable until you add in the fact that she also doesn’t have diabetes.

Image courtesy of Aisling Piggot @dietitianwales

While her overall time in range and average blood glucose are not surprising, people were shocked to see how variable her blood glucose was. What became instantly clear in the comments to her tweet is that people with diabetes, and parents of children with diabetes have been feeling immense pressure to achieve either flat lines, 100% time in target, or both. Now, this is definitely not an anti-technology post. I’ve seen people dramatically turn their diabetes management around because of having access to flash and continuous glucose monitoring, and the effects that the right tech can have on someone’s diabetes distress are often profound.

Having said that, we need to be clear on something:

Tech without the right education and support is less effective, and in some cases could do more harm than good.

Last year I attended a Diabetes UK Cymru event on Type 1 and Tech (available here: https://www.diabetes.org.uk/how_we_help/type-1-events/type-1-tech-conference). Two particularly striking messages stayed with me that day: firstly from Dr Pratik Choudhary’s talk, where he stated that looping algorithms using AI are having to make up to 100 corrections every day to keep people in range; secondly from the talk from Ashley Rolfmore of Quintech, whose researchers had identified more than 40 factors that could affect blood glucose on a daily basis:

Blood glucose modifiers from the Quintech talk

Bearing these issues in mind, is it any wonder that people with diabetes often feel like they’re facing an impossible task when it comes to achieving ‘good enough’ diabetes management?

When designing new technology and education, developers need to recognise that many people with diabetes might process information a differently from those who don’t live with a chronic condition. Judgement based on numbers has been drummed into PWD; numbers affect how many PWD feel not just about their diabetes management but about themselves as a person, and often more information just creates more opportunity for self criticism. It’s all too easy to assume that 100% time in target is what people should be aiming for – 100% is ‘perfect’, right? Similarly, when people see the peaks on a flash or CGM graph for the first time, it’s very easy to feel anxious about these and start to over-treat, not realising how long it takes for fast-acting insulin to start working.

So the implications for the ‘right’ education?

  1. It needs to be clear that there is no ‘magic’ technology, and that each form comes with it’s own benefits and downsides. While flash and CGM give us more knowledge about what’s going on, they don’t stop diabetes being an inherently unstable condition.
  2. Flat lines and 100% time in range should not the goal of monitoring, and are rarely achieved by people who don’t have diabetes. Showing reader data from people without diabetes during education sessions might help to communicate this.
  3. People who are highly anxious and/or have perfectionist tendencies might struggle with the increased information from flash or CGM. If someone’s psychological well-being is being compromised, they might need to think (with team support if they want it) about whether the tech is working for them right now.

All the technological advances don’t take away from the fact that people are complex and diabetes is hard to live with. Until there really is a ‘magic cure’ people with diabetes will need support, understanding and kindness. Now if only someone could develop an app for that…

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Where are the diabetes psychologists?

Medications only work if we take them… devices only work if we use them.

Dr Mary de Groot

In her presidential address at this year’s ADA virtual conference Dr Mary de Groot outlined once again the need for diabetes services to recognise the impact of psychological processes in diabetes management. This is not a new statement to make. The ADA, along with diabetes charities have been advocating for psychological support for people with diabetes for years; however despite high-profile addresses, consensus statements and campaigns, diabetes psychology is still overwhelmingly missing.

While the list could go on and on, here are five reasons why there aren’t more diabetes psychologists in the UK

Gaps in diabetes psychology
  1. There aren’t enough posts – there’s a serious chicken and egg problem in diabetes psychology, and it underpins everything. In the UK (and probably further) diabetes psychology posts are extremely rare outside of paediatric services. Where posts are commissioned they are often as part of a general ‘health psychology’ remit, and budgetary restrictions mean that posts are often provided either at, or below the bare minimum level required for the population. As a result services quickly become swamped, and practitioners are forced to spend their time fire fighting waiting lists, rather than being able to work on service development or innovation. Not having enough posts means that there aren’t enough people with expertise available to demonstrate what diabetes psychology can do, and to advocate for diabetes psychology where it matters, so it doesn’t get ‘seen’, which means it gets forgotten.
  2. The guideline gap – One of the factors contributing to increased paeds diabetes psychology posts in the UK is that the ISPAD guidelines explicitly outline the need for diabetes psychology and stipulate that posts should be included in service planning and peer review. It’s not the same for adult services. The current NICE diabetes guidelines for adults recommend that diabetes healthcare professionals know how to identify anxiety and depression, and that appropriate signposting is provided once issues are identified, but no mention is made of diabetes specific issues like diabetes distress or repeated DKA admissions. Unsurprisingly, diabetes psychologists were not involved in the development of these guidelines. The NICE guidelines are currently under review by a panel of experts that now (after considerable pressure) includes a psychologist, so things may improve in the future, however NICE guidelines can only support practices with significant evidence…
  3. The research gap – when cases are made for comissioning diabetes psychology posts, they are consistently required to produce evidence that diabetes psychology will have a significant impact on reducing costs and HbA1c. While this seems reasonable (nobody in an under resourced NHS should be gambling tax payers’ money), the kind of large-scale RCT studies that make the case for other aspects of diabetes care simply don’t exist in this field. There are a number of reasons for this: firstly, in order to run an RCT participants need to have the same therapy every time. Some therapies like CBT lend themselves to this as they are manualised, and this is the reason that CBT has become so prevalent in NHS services despite being deeply unpopular and perceived as outdated by most psychological practitioners. The vast majority of diabetes psychologists will not use CBT and will instead tailor their approach to the needs of their clients; this does not lend itself to RCT evaluation. Secondly, when research does happen, it’s often being run by people with no or very little experience in diabetes psychology, so as a result it’s often of poor quality and unlikely to get good results (see the recent reviews of impact of talking therapy in diabetes outcomes). Third, we’re back to point number 1 – where posts have insufficient capacity to meet their clinical remit, research will never be a priority. But it’s not all bad news: in research things seem to be progressing in terms of shifting towards more meaningful measurements like time in range; it’s hoped that in the future that more holistic measures like quality of life, which would strongly support diabetes psychology, can be given as much weight as biological markers.
  4. The training gap – while most practitioners working in diabetes psychology will have received extensive training on therapeutic models that can be applied to people with long-term physical health conditions, very few will have received specific training on the biology of diabetes and the daily management tasks involved. Similarly, those training in traditional diabetes care (e.g. as diabetologists or diabetes specialist nurses), will tend to receive little if any training on psychological issues in diabetes, and will often have no concept of the potential benefits of working with a diabetes psychologist. As a result of these training gaps professionals often work in silos, and significant opportunities to increase potential gains from integrating basic psychological concepts into routine diabetes care (e.g. in patient communication) get missed.
  5. The representation gap – as there’s no specified route into working in diabetes psychology, those currently in the field come from a range of professional backgrounds including psychotherapy, clinical psychology, health psychology and psychiatry. While each group has very different approaches to training, skills, and overarching ethos, those outside of mental health fields are (unsurprisingly) often confused by the differences between these groups and what each can be expected to provide. Not only does this confusion make it difficult for non-psychology specialists to understand us, there is an additional layer of difficulty in that each of these groups has a different professional body. This makes it all the harder for organisations to include diabetes psychology representatives in planning and development, thereby continuing the cycle of absent psychological support.

The entire diabetes community must recognise that the behavioural study is a fundamental need in diabetes research and embrace the idea that behaviour is an equal partner to medical innovations

Dr Mary de Groot

If we’re going to improve psychological well-being for people with diabetes things need to change considerably. But there is hope- if services play an active role in growing diabetes psychology by ensuring psychology voices are represented and that psychological outcomes are truly valued, we stand to make significant gains. Surely in an age where it is accepted that the mind and body cannot be treated as separate entities, it is time for services to start truly working together?

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The Big Picture

Photo by Pixabay on Pexels.com

It’s diabetes week 2020 and this year’s theme is ‘The Big Picture’. This theme has been chosen partly to bring together people living with all types of diabetes; by encouraging people to recognise that despite many of the differences between the conditions (particularly type 1 and type 2), there are shared experiences and struggles.

One shared struggle is the lack of psychological care and support in diabetes services. It’s a well established fact that people with diabetes experience higher levels of distress than people who don’t have diabetes, and that this distress impacts on a person’s ability to manage their condition. Distress can often manifest in common issues like depression or anxiety, but people with diabetes also experience issues that only come along with diabetes, like diabetes distress, diabetes burnout and some diabetes specific eating disorders. Years of campaigning by people with diabetes and charities like Diabetes UK has brought increased attention to psychological issues and the lack of specialist support, yet progress on getting support in place has been frustratingly slow.

During the recent COVID outbreak, psychological advice has been crucial in helping people manage the difficult effects of living during a pandemic and going through lockdown. This will continue to be an essential area of work as the immediate threats of the virus subside, and people are left to manage the longer lasting psychological harms like grief and trauma. As diabetes services work on developing new ways of working for COVID and beyond, surely seeing the ‘big picture’ of the whole person, with mind and body together must be key in delivering effective care for everybody living with diabetes.

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The first post!

Photo by Sebastian Hietsch on Pexels.com

It’s the very first blog post and I’m pretty excited about it! I’ve been talking for a long time about setting up a blog or a site as a place for people with an interest in diabetes psychology to find out more about what we do, and to publicise some of the exciting new developments in our field. Fresh off the exciting ride that was the @_diabetes101 account on Twitter, and still in the midst of a global pandemic, now seems as good a time as any to get things started.

Diabetes Psychology is one of the most underdeveloped areas of health psychology practice and research, despite diabetes being one of the most prevalent long-term conditions in the UK. What few diabetes psychology posts there are tend to be scattered and isolated, so I’m hoping that in time this site will help us stay connected as a community by publicising CPD events being a resource for those new in post or looking to update their practice.

This is new and uncharted territory for me, but then again so is most of the job for many of us in the NHS at the moment- here’s hoping that things go smoothly and we come out of the other end with new skills, more knowledge and continuing kindness.