Month: October 2020

Using Nudges to Enhance Clinicians’ Implementation of Shared Decision Making With Patient Decision Aids

Self-management not only means to deal with the current condition, but also pursuing a holistic approach to mental and physical wellbeing. Self-management complements medical treatment to become more effective and successful. “Self-management has empowered me to better know and understand myself on so many levels” explains Jacqueline Bowman-Busato in her contribution.

For at least the past 23 years, I’ve been living with two complex chronic, relapsing diseases: Autoimmune Hashimoto’s and obesity. And yet, I can only say that it’s been the last 18 months where I have finally felt in control of my two diseases in any meaningful way. And this has been due to finally understanding and embracing responsible self-management.

Let me explain from a patient’s perspective. When I consciously started the journey of firstly realising that I had “a thyroid problem” which eventually was diagnosed as autoimmune hashimotos, I didn’t understand that a simple pill wasn’t enough to minimise symptoms. Critically, none of my medical specialists seemed to know or care about this fact either. The resultant search for energy in the wrong places aggravated my hashimotos symptoms (severe malabsorption of vitamin D and B as well as iron which all present as depression and severe anxiety). And all very quickly led to developing obesity. I never discussed obesity with my GP for 20 years (the average is 6 years according to a new study Action IO). I “dealt with it” by following holistic diets which always had a beginning, middle and very quick end!

Self-management has empowered me to better know and under-stand myself on so many levels.

It´s time to change

It was not until 18 months post bariatric surgery on 4 July 2016 that everything finally clicked into place for me. I realised that regardless of the good intentions of the public health environment, the sad fact of today’s chronic disease environment is medical treatment of physical manifestations rather than a holistic approach to mental as well as physical wellbeing, not to mention a lack of positive motivation to work together with health professionals in an empowering and empowered way.

Self-management has meant that I have had to take a very long and hard look at myself, the good, the bad and the very ugly truths in order to forge a personal pathway towards managing my life in such a way to optimise my mental health and wellbeing. Armed with my newly gained (and acknowledged) self-knowledge, I forged my own objectives-driven processes for achieving my goal of “mental clarity”. For me, brain fog has been my biggest barrier to sustainable management of both hashimotos and obesity. Having an objective of brain clarity rather than weight or specific blood values has meant that I’ve been able to take control of my health much more than if I solely relied on medication and then wondered why I was still malnourished to the point of continuing to seek energy in foods which are basically poison to me. Giving myself parameters with well-defined processes has significantly empowered me and raised my confidence levels to collaborate with my health care team. I am now listened to and heard.

Jacqueline_Bowman-Busato

Jacqueline Bowman-Busato

As a patient representative, Jacqueline has advised the Innovative Medicines Initiative (IMI) on patient engagement strategy, and provides expert advice to the European Commission on self-care policies. She works extensively on European as well as global projects bringing the key stakeholders together to build lasting consensus on global, regional and national levels.

Empowerment through self-management

Science very clearly states that obesity is a chronic relapsing disease. It‘s not the fault of one or other individual. In my world, that does not mean that I have to accept whatever medication I’m given in isolation. It means that I use the treatment (in my case the radical treatment of bariatric surgery) as a tool and I supplement with my own process for mental and physical wellbeing to put me on an even playing field to be able to optimise the medical treatment. Self-management empowers me to engage with the system and my health professionals. It allows me to give myself a bit of certainty which is not anxiety causing. It allows me to feel a partner in my own health. Self-management has empowered me to better know and understand myself on so many levels.

23. October 2020

Climbing the Eiger at 60?

The medication I take has a huge positive effect on my quality of life and makes such a mad plan thinkable. But there is a big difference between feeling ok, with bearable pain and being able to manage to get through the day, and feeling really, really fit and strong and confident. And that is the change in the last two years since I became aware of the power of “lifestyle medicine”.

“You’ve got to be kidding!” said my friend Jeannie about my plan to climb the Eiger over the Mittellegi ridge. Or maybe she thought that I was mad. After all, I have suffered from severe Spondyloarthritis and moderately severe Inflammatory Bowel Disease for decades. Thanks to “lifestyle medicine” I managed my disease and improved my well-being. It was a gradual process. No clinician has advised me to adopt these practices. I have had to sort through the available material and decide myself what is quackery and what is responsible advice.

I believe that without all these lifestyle changes…. I never, ever, could have climbed the Eiger at the age of 60!

What is lifestyle medicine?

According to the American College of Lifestyle Medicine, it uses evidence-based practice to help people adopt and sustain healthy behaviour that affects health and quality of life. Some Lifestyle health factors are now well-established: don’t smoke; keep your weight under control; exercise regularly. But the benefits of taking these lifestyle changes even further don’t seem to be recommended by most doctors. Perhaps they aren’t proven enough, or not well-known, or not believed in. For whatever reasons, these are all things that I have found out more or less for myself.

Sleep: Worries, overwork or medication have all affected my ability to get a good nights’ sleep in recent years. One source of support has been from Dr. Guy Meadows and his approach called ACT (Acceptance and Commitment Therapy). At the Sleep School he teaches how to overcome insomnia by observation and acceptance. It often works for me. However, the most important factor affecting my sleep is nutrition.

Nutrition: There has been a lot written about diet as a factor in controlling inflammatory diseases, but what I have discovered in the last 6 months or so, is that it is just as important when I eat, as what I eat. Through fasting I give my digestive system a period of down time when it doesn’t have to digest new food and can rest and repair. I can feel how my gut is more relaxed, how much better I can sleep, and how energised I am.

Exercise: To keep my spirits up during Lockdown I made a plan “5 tips to manage your day” which included daily exercise. I used an online fitness programme with a huge of variety of options from stretching and yoga through pilates to PIIT (professional intensive interval training). It was amazing how doing this every morning for several months made me fitter than I could ever have imagined, despite never going far from my own house, let alone to the mountains.

Stress reduction: The key to stress reduction for me is a few minutes of mindfulness or meditation before starting the day. Collecting my thoughts and intentions by keeping a journal also helps.

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Judith Safford

Judith is an economist, who has dedicated her professional life to excellence in non-profit management. Affected by inflammatory arthritis since early adulthood, she works as a consultant and patient expert. Her special interest is the involvement of patients in healthcare. She is a member of the Sciana Health Leaders Network, a TED speaker and
writes a blog at arthritisandme.ch.

Future research

There needs to be much more research to provide evidence-based, mainstream recommendations for the benefit of all patients. The Spondylitis Association of America recently published an excellent webinar on lifestyle healthcare, but otherwise it’s hard to find trustworthy information. I believe that if healthcare research were more centred on patients’ well-being, rather than being driven by commercial considerations or personal aspirations, these areas would be given much higher priority.

An extended version of the blog post can be read on my own blog “Living with Spondyloarthritis”.

22. October 2020