Month: June 2020

A Cluster Randomized Trial Comparing Strategies for Translating Self-Management Support into Primary Care Practices

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.

17. June 2020

On the self-management of three chronic conditions – a story of perseverance

Health and wellness care requires the pro-active involvement of the patient. In this blog, Raymond Nangle describes his journey to self-manage three chronic conditions, and others – Asthma and COPD, Severe Stroke and Hypertension, and Obesity and Alcohol Addiction/Depression, through self-education, self-care and support groups as well as perseverance.

A bit of background – At 71 years of age, I now live with three chronic conditions: Asthma and Chronic Obstructive Pulmonary Disease (COPD), severe stroke and hypertension, and obesity brought on from alcohol addiction/depression. Each condition came at a different time in my life; asthma when I was a teenager, followed by hypertension in my mid-twenties; in my late thirties, I developed an addiction to alcohol, and depression as a result of painful events in my life. I also successfully recovered from a severe stroke in my late forties, which destroyed 15% of the left hemisphere of the lower cerebral cortex of my brain. Then, I was diagnosed with COPD and subsequently developed significant obesity related to my medications to manage COPD in my fifties.

The disruptive technology necessary to achieve a paradigm shift will have to come from emerging technologies, and from the patients themselves sharing their experiences!

Hope in a dark moment

Some of these conditions – my progressive COPD – threatened my life! My doctor told me that it was the end stage, and there were few things left to do but carry around oxygen and let the disease take its course. This prognosis emboldened my determination to manage my conditions and live well. You see, years before, I watched my uncle die in hospital in an oxygen tent gasping for his last breath, a big man I admired as a child gasping for his last breath. It was a memory that stayed with me, and most importantly, I promised myself that my children would not have to watch me die this way. It was a very traumatic moment when my doctor told me there was nothing more he could do and my future was going to be carrying around oxygen with me for whatever time I had left; it was then I considered putting an end to my life to end things quickly. But I didn’t.

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Raymond Nangle

Raymond Nangle is an independent patient representative, and member of the COMPAR-EU patient panel. Most notably, Raymond contributed to the COMPAR-EU core outcome sets workshop in Berlin, 2018. Originally from Ireland, Raymond currently resides in the Philippines.

Turning the corner

I thought about all of the times the odds had been stacked against me – I beat alcohol addiction, even though the head of the rehabilitation unit told me that with my attitude I had not got a good chance of survival unless I changed my attitude radically; I was discharged from the hospital after my stroke and told I would never lead a normal life again as the damage to my brain was permanent and irreversible; along with all of the aforementioned I had been successfully managing my asthma since my teens and had led a full and exciting life.

This gave me hope. Instead of ending things, I made an active decision to live and take responsibility for my chronic conditions, learning everything I could to make a full recovery and lead a full productive life. This is when I began my journey of health / wellness self-management.

Over these last three years, I have successfully managed my conditions as a result of 1) Self-Education, 2) Self-Management, and 3) Self-Help online and offline groups. Of course, some of my disease management has also been thanks to the intervention of the existing healthcare system especially my local Pharmacist – helping me monitor my conditions and find both short-acting and long-acting solutions for my conditions.

Time for a change

I joined the patient panel of COMPAR-EU as part of my journey to manage my COPD once and for all. It was at this time that I was put in touch with the project by my physiotherapist. My community pharmacist and caregiver joined me for the group meeting in Berlin in 2018, where things clicked into place for me.

I have come to the realisation that changing the well-established system-centred reactive health care (sickness care) to patient-centred wellness care is going to require a paradigm shift in the current system-centred Medicare philosophy which can only be evolved step-by-step within the structures of existing government health care systems over time. I believe the disruptive technology necessary to achieve global adaptation of a paradigm shift from existing reactive illness care system will come from patients themselves communicating with each other and their front-line clinicians in real time through emerging mobile technologies while educating themselves and taking proactive responsibility for their WELLNESS! It’s time for the status-quo to begin to change.

In the future, I believe existing government health care systems and resources will interactively morph together more easily and efficiently into care systems once patient-centred, self-learning, and self-care systems take hold and become the norm in every local community.

To that end I am launching my own personal online patient advocate initiative to help change the global health care system one small step at a time from corporate-centred reactive illness care to a true patient-centred self care wellness system for everyone. The journey of a thousand miles begins with the first step.

PS. A special note of appreciation and thanks for the financial and moral support of my pharmacist Geraldine Hetherton MPSI (Powers Pharmacy Kilmihil), my brother Brian Nangle and his medical sensor monitoring R&D tech start-up company (Filter Health Ltd). My friend, mentor and life coach Rachel Dungan MPSI and the invaluable moral support of my daughters Lisa and Aine and their mom Ann and my sons Richie and Raymond and their Healthy School Lunch company.