Better pay and referral pathways—along with improved education and training—are desperately needed to help tackle diabetes, say award winning credentialled diabetes educators, consultant pharmacist Kirrily Chambers and registered nurse Jayne Lehmann.
Credentialled diabetes educators (CDEs) need more support including better remuneration and training as well as improvements in referral pathways to optimise the support they provide for people with diabetes, say Kirrily Chambers and Jayne Lehmann. The two South Australian women—who between them have more than 75 years’ experience and numerous awards for their pioneering work—also insist the language we use around diabetes must change.
After 10 years’ clinical, education and research work as clinical nurse consultant of the Diabetes Education Unit at a major Adelaide teaching hospital, Lehmann started EdHealth Australia in 1996. Since then, the diabetes care and education business has been engaged by a range of organisations across Australia to design, innovate and implement high quality diabetes care and support policies, resources and services, including for people with disabilities. She also designed, developed and introduced the national pharmacy program, Diabetes—Getting Back on Track. While in 2016 she created DE@Connect to provide grassroots health professionals with information to support more people with diabetes to reach their glycaemic targets.
Chambers was the first pharmacist-CDE in Australia and has continued to spearhead the evolution of diabetes care by inspiring more than 230 pharmacists to follow her path—and even larger numbers of pharmacists to pursue graduate courses. She runs a dynamic, pharmacy-based diabetes “one stop holistic practice”, with education and links to NDSS services. She also finds time to broadcast the regular podcast, P2 Diabetes Chat1 with Lehmann.
“Pharmacists are at the forefront of care because they’re 14 times more likely to see people with health conditions than any other healthcare professional and well placed to offer advice and help with diabetes care. But I think we need practical resources and training to fine-tune those processes,” Chambers tells the AJP.
Lehmann agrees with Chambers about the value of pharmacy. “People were very comfortable talking about diabetes in pharmacy. Pharmacists can make a very big difference. They can pick up a lot about a person from the products they buy. It could be as innocuous as buying lots of jelly beans—a red flag to check for hypoglycaemia and potential intervention from a pharmacist to say, ‘Is everything okay? I’ve noticed you were getting a lot of extra jelly beans?’ Or if someone comes in to buy wound care products, it’s an opportunity to ask a few extra questions around their glucose management, because people don’t heal if their glucose levels are high.”
“I use the term ‘diabetes detective’, continues Lehmann. “When I was sitting in a pharmacy (which is what I did for hours when I was doing the Diabetes Getting Back on Track Program) you just have to look around to see there are many diabetes-linked products, on top of those distributed via NDSS. I noticed people’s health mindset was open in that setting. If the health mindset is open, there is an opportunity to influence and provide a more holistic approach to healthcare.”
But providing a holistic approach to diabetes care requires dedication, training and importantly, practice—skills gained after graduation.
Lehmann points out a Nursing Diabetes Education Framework2 was launched in 2020 stating the expected diabetes education knowledge and skillset from foundation through to expert level and that this is also needed for pharmacists.
To become a CDE, pharmacists must undertake a one-year post-graduate course and complete at least 1000 work hours’ experience, Chambers says.
“It’s quite an extensive learning course to get the experience, knowledge and the skills to be able to talk to people about diabetes, it’s not easy and it takes practice, practice, practice. It takes a lot of counselling skills and you need to know about food, hormones and stress and exercise, and how they all can have an impact on blood glucose levels.”
In 2019 Chambers was also named Innovative Pharmacist of the Year, after being CDE of the Year in 2016. She also has a diploma in Nutritional Pharmacy. But being a CDE brings a crucial difference to the care she can offer.
“As I have a provider number as a CDE, I can offer a person an EPC or enhanced primary care plan appointment for people with diabetes. I’ve set up a model in pharmacy, like a one stop shop under that chronic healthcare plan. People can come to see me in pharmacy in an education room.”
She can also offer government-funded pharmacy services such as Diabetes MedsChecks. However, she is perplexed why people with type 1 diabetes (T1D), prediabetes and gestational diabetes are not covered by the scheme.
“Diabetes MedsChecks aim to improve someone’s understanding of why they’re taking the medication. But people with T1D often end up on cholesterol medications, and medication to help protect their kidneys or their eyes. They need to understand why and what to do, so there’s a role for pharmacists to have a conversation so they understand why they’re on other medications. That would be in the scope to do it under a Diabetes MedsCheck. I have no understanding as to why the government wouldn’t pay for that.
The government needs to understand the need for CGM is not about avoiding finger-pricking.
“In fact, there’s no scope to get paid as a pharmacist to educate people with T1D about medications unless you are also an HMR-accredited pharmacist.”
Chambers really feels these anomalies are unfair given that people with T1D may face extra costs and barriers, such as those associated with continuous glucose monitoring (CGM).
“You have to be on a healthcare card, on a low income—and even then, people only receive the continuous glucose monitoring—and not the pumps.”
As a person with T1D herself, Chambers feels strongly about the issue.
“The government needs to understand the need for CGM is not about avoiding finger-pricking. I use the analogy of a car: imagine driving down the freeway and opening your eyes every 20 kilometres hoping you don’t hit something, versus getting in a car equipped with a reversing camera and Google Maps? Well, that’s what CGM does—it tells the person whether they are going to hit something, where they are going, and how long it’s going to take. To have to tell people they cannot have CGM in Australia when many other countries offer it for free is beyond my recognition—the government is so short-sighted to not give it to people! But we cannot get the government to understand the difference in quality of life it can make,” she says.
She also points out that without CGM people may increase the risks of developing further associated health conditions, which add to costs in the healthcare system.
Additionally, people with T1D don’t have access to other funded resources available to people with type 2 diabetes (T2D), such as exercise physiologists—despite the potential benefits of exercise3 on blood glucose levels and overall general health.
“However, when you educate people how to manage diabetes, and they are supported well, their health literacy is improved. Even though it’s not easy, we do and can make a huge difference. Whether you’re a nurse, a pharmacist, or a dietitian, it doesn’t matter what their primary health profession is. But if CDEs are paid appropriately for these services and given the support they need, then the outcomes can be exceptional, even in challenging circumstances,” says Chambers.
For example, Aboriginal and Torres Islander (ATSI) people with diabetes often have associated health issues early as a result of a lack of resources and emerging genetic changes.
“When you are working in indigenous health it’s a whole different approach again because of the challenges these people face,” says Chambers.
“As a result of changing genetics, Indigenous people are experiencing T1D whereas they did not before. We’re also seeing Aboriginal children developing T2D as young as six years of age. And because their bodies are developing, the glucose is more toxic to their developing cells and so they experience associated health issues like renal failure, amputations and eye disease in their 20s. All of these issues are compounded by a lack of resources and funding.
“Pharmacists working with high-risk groups, such as Aboriginal people, need to link with healthcare workers in the local community to find out about appropriate educational information or courses available.
“Services need to be targeted and streamlined, given rates of diabetes continue to rise.4 The government needs to focus because it’s not going away. It’s getting worse. And people often don’t do anything about it until they get associated health issues so we need to educate people early,” says Chambers.
Helping people with an intellectual disability
More than 10 years ago Lehmann began investigating the issue of healthcare and support for people with diabetes and an intellectual ability (ID), inspired by her experience of caring for her own daughter, Sarah. Lehmann’s subsequent work in this area has established her as an Australian expert, co-authoring a 2014 peer reviewed meta-analysis on diabetes in people with intellectual disability6 and pioneering the first online insulin management course for disability support workers, Diabetes 4 Disability Support, now eligible on the National Diabetes Insurance Scheme (NDIS). Most recently, Lehmann was appointed a member of the Intellectual Disability Roundtable and Emergency COVID Response group.
“Sarah needed us to consistently advocate for her needs to be met. It became obvious there was a big problem with the way health services supported people with an intellectual disability. Because of the lack of health training provided to support workers, people’s needs were being ignored or forgotten in a way that was just not okay.”
Indeed, people with an ID die 27 years earlier than someone without one and it’s mainly due to the way their health issues are ignored, misdiagnosed or inappropriately treated. A large study5 of NSW residents found adults with ID experience premature mortality and are over-represented in avoidable deaths. “A national system of reporting of deaths in adults with ID is required. Inclusion in health policy and services development and in health promotion programs is urgently required to address premature deaths and health inequalities for adults with ID,” the paper concluded.
A meta-analysis6 of the prevalence and impact of diabetes in people with an intellectual developmental disability (IDD), of which Lehmann was a co-author, found there was a lack of research into the area. However, people with IDD had a high risk of developing T2D, attributed to genetics, obesity, reduced activity, poor nutrition and elevated blood pressure. While people with Down’s syndrome had between four and 10 times the rate of T1D than the general population, which “should be a matter of concern”.
“The health system doesn’t understand the disability system and the disability system doesn’t understand the health system. These people have decreased communication abilities and are often caught between two systems that don’t understand or communicate well with each other and people get lost in the middle of it,” says Lehmann.
“I developed this understanding and a number of skillsets from Sarah’s care and realised I could pair that with my diabetes expertise and change the system.
I suspect every pharmacist is preparing a lot of medications for people they never see.
“For instance, I’d learned to use the symbols that people with a disability use to communicate with Sarah, and started to use them to develop low literacy diabetes strategies and resources for the people with intellectual disability I was seeing in my clinics. I would also have these epiphanies—like the one I had after Kirrily came to my house for a meeting and met Sarah for the first time. She had been dispensing her medication for two years when Sarah lived in accommodation near the pharmacy where she worked and made the comment, ‘Oh, that all makes much more sense now’, when she put together the observations that came from seeing Sarah and the medications being dispensed.
“In that moment, I realised Sarah and others with intellectual disability often do not go to the pharmacy and they needed to become more visible if they are to get better healthcare. Her scripts were taken to the pharmacy by her support workers. Her pharmacist, Kirrily, had not seen Sarah and was missing vital information and contact to fully understand her needs and provide additional information, like the benefits of a home medication review.
“Sarah was now connected with part of her life previously denied to her—to see the pharmacists who were treating her. This is important because people with an ID can have syndromes that alter their genetics and there’s no evidence base to their response to medications because they are removed from most clinical trials. Every time a medication is administered to people with an intellectual disability no one knows how the person is going to react, and they are often on lots of medications for things like epilepsy and diabetes.
“From a safety point of view, Sarah being in the pharmacy provided the opportunity for more sets of eyes on her to keep her safe. It also let her live her life with her support workers doing things with her, not for her. When it comes to people with intellectual disabilities, I suspect every pharmacist is preparing a lot of medications for people they never see.
“I’m now a national NDIS provider for specialist nursing services to help people with intellectual disability to manage their diabetes, including the training of support workers, and Individualised Diabetes Management Plans and low literacy support information and resources. This is vitally needed if we are to change the mortality statistics. It is also discriminatory not to have information available to people in a format they can understand.”
Sadly, Sarah passed away unexpectedly at the end of 2019.
“Sarah taught me so much and continues to inspire me. Anecdotally, my Diabetes Management Plans are making a huge difference. Prior to my work there was often no plan for support workers to follow around each person’s diabetes care needs, other than medication orders. There is a complete system I can wrap around a person to deliver well-trained support and a diabetes management plan that pulls in all the latest information from the professionals involved, as well as my specialised input. I can clinically review the individual’s care, and liaise with other healthcare professionals, so we get things like insulin dosing well managed.”
Better insulin management in people with intellectual disability is urgently needed, Lehmann believes.
“Unfortunately, in this area people are often not well catered for and an unconscious bias from health professionals can influence the health targets set when a person has an intellectual disability.
Lehmann was a witness in the Health Hearing of the Disability Royal Commission in 20207 and observed: “It is wrongly assumed people with an intellectual disability don’t experience the world in the same way as those without this disability. They do… but they also have many individual differences that place them at higher risk. For example, Sarah had a high pain threshold, but that didn’t mean she did not experience pain. It was different and you had to really look out for changes in behaviour to identify when she was in pain. You only have to look at the Health Hearing from the Disability Royal Commission7 to see the depth of the problems we have in providing equal access to healthcare for people with disability.
“Pharmacists are behind in their ability to offer quality services to people with intellectual disability because of their lack of visibility in their pharmacies. It is very important for low literacy handouts and strategies to be designed for pharmacists to use to engage with a group of people and their support workers. They will achieve significant improvements in their health if they can access the information others take for granted.
“I have noticed people with intellectual disability are often not being referred for HMRs. Pharmacists can encourage people to ask their GP for a HMR referral and to ask more questions about medication side effects when the prescriptions are picked up.”
Lehmann also runs a ‘Kitchen Cabinet’, bringing together health and disability stakeholders with the NDIS quality and safety commissioner, Graeme Head.
“We’ll be talking about the intersection between disability and health and there are two pharmacists involved—including Kirrily and Dr Manya Angley, consultant pharmacist and researcher who provides an HMR service for people with intellectual disability and autism.
Despite the ongoing challenges, both women feel that in some areas Australia is making some headway.
“I’ve read it takes 15 years for a movement to take hold,” says Chambers. “I think in the area of language we use around health there’s some movement. For example, we don’t call people demented anymore and we openly talk mental health with people with diabetes and we never did that five or 10 years ago. We’ve started talking about eating disorders and framing T2D around genetics rather than lifestyle. There is much more openness, and less guilt shaming that it’s a person’s fault they have diabetes. The trickle has sped up, as has grassroots advocacy in part thanks to social media.
She’s seen other positive developments.
“I’ve had T1D for 38 years and I’ve seen more changes in last five years in technology.
“Social media has helped people find a voice. And we’re seeing more people who support this positive approach to diabetes,” adds Lehmann. “And the NDIS has also provided someone like me with a funding stream to design innovative services to a group of people who were not getting them before.”
To find out more about Jayne and Kirrily’s work go to www.Edhealth.com.au or contact Jayne at Jayne@edhealth.com.au. To subscribe to the podcast, P2 Diabetes Chat, go to https://podcasts.apple.com/us/podcast/id1479346755 or your podcast provider.
Mind your language!
Changing the language used around diabetes is important because words don’t just reflect reality they create it, said Diabetes Australia (DA) in a 2016 position statement.1 DA believes optimal communication increases the motivation, health and wellbeing of people with diabetes…[and] careless or negative language can be de-motivating, is often inaccurate, and can be harmful. Despite this well-intentioned move, both Chambers and Lehmann believe the policy hasn’t taken hold.
“Changing the language used around diabetes is one of my passions,” Chambers says. “Such as using the words ‘diabetic’, ‘test’ or ‘control’. The term ‘patient’ is problematic too because it can disempower self-care.
“Even terms like ‘Diabetes Medscheck’ can be misinterpreted.
“People automatically think it means that they’re doing wrong or need to be checked up on. And so, nine times out of 10, people don’t want to have that service done. So, there’s this misconception about what the service is and how it’s utilised, as a result.”
Even healthcare professionals are creating fear with the language they use around the condition—not always intentionally, she says.
“Some healthcare professionals still say things like, ‘if you don’t behave yourself, you’ll end up on insulin’—that failure technique gets used a lot.
“Or it’s a punishment: ‘If you don’t do the right thing. I’ll put you on insulin’,” says Chambers.
“This adds to the misconception that when people don’t do the ‘right thing’, then they’ll have to go on insulin but it’s none of those things—it’s just it’s a supply and demand,” stresses Chambers.
“The majority of people when they come to me after they are first diagnosed, almost every single time, tell me they definitely don’t want to go on insulin.”
On the other hand, sometimes the language used needs to be amped-up, says Chambers.
“Healthcare professionals could improve how they talk about the potential impact of overweight and give people the tools to help manage it.
“It also drives me mad when I hear healthcare professionals telling people they have a ‘touch’ of diabetes—you either have it or you don’t—it’s like being on the border of pregnant!”
- Position Statement: A new language for diabetes. Diabetes Australia. Available at: https://www.diabetesaustralia.com.au/wp-content/uploads/Language-position-statement-2016.pdf
- The P2 Podcast Extra Stuff. Available at: https://www.edhealth.com.au/consulting/power-of-2-diabetes-consultancy/p2-podcast/the-p2-podcast-extra-stuff/
- The National Diabetes Nursing Education Framework. Available at: https://www.adea.com.au/ndss/the-national-diabetes-nursing-education-framework/
- Colberg SR, et al. Physical activity and type 1 diabetes: time for a rewire? J Diabetes Sci Technol. 2015;9(3);609-18. doi: 10.1177/1932296814566231
- Diabetes in Australia. Diabetes Australia. Available at : https://www.diabetesaustralia.com.au/about-diabetes/diabetes-in-australia/
- Trollor J, et al. Cause of death andpotentially avoidable deaths in Australian adults with intellectual disability using retrospective linked data. BMJ Open. 2017;7:e013489. doi: 10.1136/bmjopen-2016-013489
- McVilly K, et al. Diabetes in people with an intellectual disability: a systematic review of prevalence, incidence and impact. Diabet Med. 2014;31(8):897-904. doi: 10.1111/dme.12494
- Disability Royal Commission. NDIS Quality and Safeguards commission. Available at: https://www.ndiscommission.gov.au/news-media/disability-royal-commission