HCPs

Where Is The Patient Centred Care?

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When are you seeing your doctor? the Pathologist asked me as I followed her into the demountable Caravan that doubled as the ‘D’ block at my local hospital.

It won’t be until he has the results and calls me in for an appointment I replied. I already signed the release form to receive my results when I came in, but with Australia Post and the Easter long weekend I’ll probably be waiting well over a week.

When did you come in to have your bloodwork done?

Yesterday morning.

Seemingly puzzled at why someone would want to know their own test results, she typed my surname followed by my first name into the computer to check the status of my results.

They haven’t all been done yet. They’re about 80% complete.

Is my hba1c there?

There it is. Don’t tell anyone I told you! She half joked, acting as though she had just committed a serious crime in telling someone their own test results.

Fantastic! I exclaimed, my eyes fixed at where the Pathologist had motioned on the computer display that looked like something out of the 1980s.

Five years ago, I wouldn’t have given a stuff about some stupid test results. I certainly wouldn’t have made a detour on my way home from work because I was that eager to know. I probably would have just let my doctor vaguely lecture me in 2 weeks time, rather than making my own evaluations about the condition I live and breathe 24 hours a day.

I feel like the system isn’t even designed with the patient in mind. Why aren’t we making it easier for patients to engage in their own health matters? Why aren’t we encouraging, and praising self management efforts? Why is lived experience not more highly regarded?

Where is the patient centred care here?

Now you can go home and enjoy your Easter long weekend! the Pathologist replied as I thanked her for her time.

But don’t eat too much chocolate! She exclaimed as I stepped outside into the crisp afternoon, the door slamming shut behind me.

Putting Patient Centred Care Into Practice at #ADSADEA2017

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There are still a few more sessions from this year’s ADS-ADEA conference that I hope to cover over the next couple of weeks, as time and brain capacity allows.

One of the buzz words at this year’s conference was the concept of ‘patient centred care.’ As a consumer, it felt extremely frustrating to sit in on several sessions hearing all the talk about it, while knowing that in reality it’s not always being delivered. 

On the first afternoon of the conference, I ducked into a workshop chaired by Diabetes WA about putting person centred care into practice. In attendance were mostly diabetes educators and other healthcare professionals. Melinda of Twice Diabetes was also sitting in on the session with me, and she has shared some of her thoughts on patient centred care here.

Professor Timothy Skinner took to the stage to tell us that there was no ‘one’ or ‘right’ definition of patient centred care. He gave us four statements for attendees in the room to consider.

“All the decisions that affect the progression and outcomes of diabetes care are made by the person with diabetes.”

“All the barriers to effective diabetes self-management are in the individual with diabetes interpersonal (social) and intrapersonal (psychosocial) world.”

“All consequences of diabetes are experienced by the person with diabetes.”

“Every individual is always making the best decision they can to optimise the quality of their life.”

Professor Skinner noted that person centred care occurs when healthcare professionals act in congruence with these four statements. I still don’t quite know how I feel about these. In one way, I agree that the person with diabetes should be the ultimate driver of their diabetes decision making. Or, that this should be the ultimate goal. Yet if these are assumptions that healthcare professionals are making in light of an undesirable outcome, then they certainly seem to imply blame on the patient.

Our table then had to discuss this prompt.

I really thought that this statement reinforced one of the sentiments that I continually echoed throughout my time at the conference. I don’t represent all people with diabetes out there. Melinda and I were likely among the more ‘switched on’ and ‘connected’ consumers. While I might head into a clinic appointment with a list of notes and knowing exactly what I want to ask, this may not be the case for every other person out there.

I had a very frustrating economics teacher in High School who used to answer questions with questions. But in this instance, this is exactly the approach I would be giving to patients expecting to be told what to do. Healthcare professionals need to start empowering consumers to make their own decisions. Healthcare professionals should be arming consumers with information and resources that will assist them in making their own, informed decisions.

My attention waned towards the end of the session, and I think it was simply because I don’t believe the answer to providing patient centred care should be so complex.

Patient centred care is simply delivering what the consumer wants, rather than what the healthcare professional wants. If the consumer doesn’t know the answer to this question, then healthcare professionals need to be supporting the consumer to find out what it is that they want.

Disclosures: Diabetes Australia provided me with a media pass to attend the ADS-ADEA 2017 conference, with the view that I was interested in attending and delivering my own honest insights to the wider diabetes community.

How I Wish Mental Wellbeing Was Approached on Diagnosis

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Another week, and another column up over at Diabetes Daily. This week I’m reflecting on how I wish that mental wellbeing was approached on my diagnosis.

“I personally wish that my diabetes healthcare professionals had asked me how are you going more often. Not how are your blood sugar levels going. Not how is your diet and exercise going. Not how are the number of hypos you are having every week going, either. A new diagnosis is a huge thing to deal with. A little empathy and understanding would have gone a long way in helping me to acknowledge that sometimes it might be okay not to be okay.”

You can check out my full column over at Diabetes Daily right here.

Championing Peer Support at #ADSADEA2017

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One of my favourite sessions at this year’s ADS-ADEA conference was the peer support symposium. Not only did it cover one of my favourite topics, but it also provided me with valuable insights into the work carried out by the Australian Centre for Behavioural Research in Diabetes (ACBRD) and Diabetes Victoria.

Renza took to the stage with her personal story, which I’m sure many consumers in the room could identify with. People with diabetes only receive a few hours of clinical support each year. They turn to peer support because it’s easily accessible, and in the case of the Diabetes Online Community, it’s available 24 hours a day.

The point that most resonated for me was the importance of timing. I know that I wouldn’t have been ready or willing to meet other people with diabetes at the age of 17, nor would I have seen any value in doing so. But today, having connection to people who simply ‘get’ it is so very valuable.

It brought me to this idea of the strong bond that diabetes creates among peers. As Renza touched on peers helping peers with diabetes, it really reminded me of how much more trusting we are of each other because of our condition. I’ve certainly gone out of my way to help other people with diabetes, some of whom I barely know. If only more of our healthcare professionals could foster this much trust, imagine how much better they would be able to support their patients?

Later in the session, Dr Jessica Browne of the ACBRD took to the stage to highlight some recommendations for peer support in Australia. Only 11% of survey respondents were taking part in peer support, suggesting that many programs did not have enough reach.

When I look at some of the communications from diabetes organisations, I would have to agree. I don’t often see weekly OzDOC chats promoted. People’s insightful blogs aren’t often shared. I don’t see cross promotion of events here in Perth from some of the leading diabetes centres. Technology companies are too focussed on marketing their products, and could definitely employ a bit more of a community focus. We are not enemies, nor should we be viewing each other as competition. We really should be supporting each other in order to better serve our communities and promote choice.

Unsurprisingly, 1 in 3 survey participants had not discussed their involvement in peer support with their healthcare professional, and 1 in 10 believed that it would not be endorsed. Dr Browne touched on the need for more heathcare professionals to link their patients up to peer support, which I wholeheartedly agreed with. It took me five years before I began to uncover some of the many forms of peer support out there. Online alone there are closed Facebook groups, Twitter chats, diabetes Instagrammers, people’s blogs and forums such as Reality Check and TuDiabetes. The possibilities are endless, and without peer support I would not be in such a good place today both physically and emotionally.

The elephant in the room was addressed, with Dr Browne and many consumers in the room expressing that peer support complements, rather than replaces the advice of a healthcare professional. Yet I felt that a conference targeted at diabetes healthcare professionals and promoting patient centred care really missed a golden opportunity to give them a taste of something that we were telling them was so valuable. There were no Tweet stands or promotional material in the conference bags to encourage healthcare professionals to get online. There was not one tweet throughout the whole conference from the @ADSADEA twitter account. The #ADSADEA2017 hashtag was largely flooded by the consumers in attendance.

Carolyn Jones was the final person to take to the stage, and she provided an impressive insight into how Diabetes Victoria engage with their peer support groups to more effectively deliver programs and events that consumers want. She touched on the need for choice so that the consumer could pick the option that suited them best, as well as the need for any peer support to empower the consumer. There are 80 peer support groups running across Victoria consisting of type 1, type 2, mixed groups and online groups. I feel that other states pale in comparison. There were more in rural than metro areas. More of the in person support groups were type 2 specific, which was reassuring to hear given that type 2s aren’t very active in online support.

A massive thank you to everyone involved in putting together such an insightful session. I felt that our consumer perspective on peer support was both championed, and nicely complemented with the research and evidence.

Disclosures: Diabetes Australia provided me with a media pass to attend the ADS-ADEA 2017 conference, with the view that I was interested in attending and delivering my own honest insights to the wider diabetes community. 

People With Diabetes Panel Discussion at Roche Educators Day

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Last Tuesday, I was a part of the ‘People With Diabetes Panel Discussion’ at the Roche Educators Day. This is the first time that consumers have formed a part of the day’s proceedings, and I do thank Roche for having us there frantically tweeting away! It was also extremely humbling to see consumers being championed throughout the day by some of the presenters and attendees asking questions.

In a refreshing change of pace, West Australians on the panel outnumbered Eastern Australians. I was introduced to fellow type 1 Samantha, who is also Mum to two type 1 children, and Stephanie who lives with type 2 diabetes. The Eastern Australian contingent was represented by Ashley of Bittersweet Diagnosis and Renza of Diabetogenic.

Having two people on the panel who weren’t as immersed in the online world as myself, Ashley and Renza made the discussion richer. It was very insightful to hear Stephanie’s experience as a type 2, and not feeling very enlightened with her diabetes management until completing a DESMOND workshop. Samm’s perspective of “don’t wish for your problems to go away, wish for better skills to deal with them,” has also stuck with me for a number of days.

The highlight of my day was being able to tell a room full of healthcare professionals the importance of building a good support system. A short three years ago, I didn’t know a single person living with diabetes. I was feeling relatively isolated and alone with my condition before I began writing my blog and connecting to others through social media and eventually offline.

Our discussion shifted towards the illusive concept of ‘control,’ and this really challenged a belief that I had held for a long time. I was told I would live a normal life on my diagnosis, more so from my parents than from my healthcare professionals. I long imagined reaching a point where I would feel in control of my diabetes. As much as I wanted to believe that diabetes doesn’t make me any different, it does. Diabetes is not normal. We can only do our best to minimise the disruption of a very lousy condition.

I got the crowd laughing when I began talking about how my healthcare professionals continually bang on about not having more than two hypos a week. Despite their well meaning intentions, it’s simply not a realistic goal. I’ve certainly found that it’s an unfortunate trade off with spending more time in range. Then at the other end of the spectrum, I was ecstatic to see numbers in the single digits after my diagnosis while my diabetes educator told me that I needed to be correcting a blood sugar of 9 mmol. Ah, such a fine art…

So, what is the best thing that’s come from being diagnosed with diabetes?

Confidence.

Diabetes has made me a more confident person. I have learned to speak up for what I want from my diabetes healthcare professionals, and to make sure that they are working for me and meeting my needs. Three years ago I’d hardly have imagined myself being so open about my diabetes, let alone being an advocate for others. I really do think that this confidence has spread beyond my diabetes alone.

We weren’t supposed to talk about our peers as a positive of diabetes, because we talk about them all the time. However, I said it anyway. Diabetes has made the great big world around me a lot smaller through the people I’ve been lucky enough to meet, both online and off. 

When I think about how hard it was for me to say goodbye to each of these amazing individuals on Friday after four days together, I think that peers are definitely the best thing that have come from diabetes.

Disclosures: Roche Diabetes Care Australia covered my registration and travel costs to attend Roche Educator’s Day. I am also being paid an Honoraria for my giving up my time to speak in the People With Diabetes panel discussion. There was no expectation that my participation would bind me to a particular view of Roche, nor was there any expectation that I would blog or Tweet about the event.