Comments on: The missing link in chronic disease care

By: Lorraine Gradwell

Lorraine Gradwell — Sun, 11 Aug 2013 18:04:58 +0000

[…] Next week I’ll be seeing both my GP and my neurology consultant, not together, more’s the pity, however I plan to get the most out of these two separate though linked events. I haven’t always managed this in the past. Don’t get me wrong, I’m not knocking the NHS: I’ve placed quite a few varied demands on it in the last couple of years and several times it has delivered over and above expectations. The trouble seems to be that as I get older (just had a BIG birthday) and my impairment progresses I’ve made the mistake of adding new conditions into the mix. Having lived practically all of my life with the effects of an acute polio infection in childhood, and then succumbing some twenty years ago to diabetes, damn me if I didn’t go and have a heart attack. And not just any old heart attack, oh no, but a ‘widowmaker’ – the majority of which are fatal. This is where the NHS shone, did the plumbing, and remarkably I came out of it with no heart damage. Rather shaken up, but that’s another story. This tendency we have as we get older to add more impairments or conditions into the mix is called ‘co-morbidity’ in the trade, and whilst the medics are beginning to recognise co-morbidity, they seem to be struggling to address it. Following my heart attack, as a wheelchair user I was clearly a bit of a puzzlement to them in cardio rehab: couldn’t climb the steps, throw the medicine ball, ride the bike or walk the circuit. How to deal with the conflicting situations, I wondered? My cardio programme required increasing amounts of activity and exercise, whilst my post-polio is characterised by increasing fatigue and loss of muscle function. Was there a medic who could help me? Well, apparently not. My GP and my three specialists (neuro, cardio, diabetes) never met each other, and communicated (sometimes) via letters that often they hadn’t read by the time I got to see them. I would often raise an issue with one of them, and they clearly thought I was speaking to the wrong person. What does this mean for the punter? The various specialists don’t always know, or ask, what’s happening in the different areas of your life, so they might recommend or prescribe something inappropriate or impractical. You may even get conflicting advice (‘drop the statin’ vs ‘I’m not happy that you’re not taking a statin’) and wonder which advice to take. And then there is the combining and managing the various regimes and medications, lifestyle changes, self-monitoring and adjustments. For more see here […]

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By: Carolyn Thomas

Carolyn Thomas — Fri, 08 Feb 2013 17:32:39 +0000

Thanks for this link to your post “Too Many Decision” – you are so right on the money! And yes, it’s an absolute relief to know that there are actually doctors like Dr. Montori out there who ‘get it’ and are working hard on our behalf to address the workload of being a patient.

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By: anet37

anet37 — Fri, 08 Feb 2013 17:16:29 +0000

Has some relevance to “decision fatigue also which is my new post.

I look forward to reading yours about Burden of Treatment, especially as work is being done on it.

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By: Carolyn Thomas

Carolyn Thomas — Fri, 08 Feb 2013 15:51:54 +0000

Thanks so much for sharing your unique persective here, Hilarey. What you’re talking about is what Dr. Victor Montori at Mayo Clinic and his team refer to as “the burden of treatment” and the patient “workload”. I’m working on an article about their project for my other site, HEART SISTERS. You can also find out more at his excellent site Minimally Disruptive Medicine.

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By: Hilarey

Hilarey — Fri, 08 Feb 2013 11:23:21 +0000

I really relate to the concept of “simultaneous control”.

I’ve now been diagnosed with nine different conditions and I’m burning out. I need to keep a spreadsheet of medical appointments and tests; entries in a diary just don’t cover it anymore. There are more things that I am supposed to do for myself than I can fit in a day, particularly considering that I often feel exhausted. And I’m not even sure what’s causing the exhaustion — the conditions, or the medications, or probably both. It often seems to me that, if one condition is under control, another is out of control.

Yes, it is depressing. And I dread some of the medical appointments because I know I’ll be dealing with doctors who will not understand why I couldn’t do everything they want me to do. Medications are particularly hard. I’ve had problems with allergies, severe side effects, and even toxicity. Some doctors act as though I’m deliberately obstructing their wonderful treatment!

And of course other people don’t really want to hear about all my problems. They want me to be “positive” about everything. One woman even told me that I was only sick because I thought negative thoughts. I couldn’t get past that — I just don’t see her anymore.

I’ve found writing a daily journal helps a lot. It’s just for me, no-one else is ever going to see it, and I can be entirely honest about my feelings.

I’ve probably gone off topic here, but it was such a relief to find this page and see what other people in this situation have to say.

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By: Basques

Basques — Tue, 11 Dec 2012 15:25:35 +0000

When are doctors and nurses and all healthcare professionals going to finally GET this important message? People are not merely collections of symptoms or problem organs. Emotional and psychological influences affect every aspect of our physical health. Why is this NEWS to some?

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By: My Lymphoma Journey

My Lymphoma Journey — Wed, 07 Nov 2012 12:42:47 +0000

[…] The missing link in chronic disease care | The Ethical Nag. […]

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By: Carolyn Thomas

Carolyn Thomas — Mon, 05 Nov 2012 13:00:16 +0000

Good point, Andrew. And sometimes seeking meaning and purpose is an hour-by-hour or day-by-day goal!

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By: Andrew

Andrew — Mon, 05 Nov 2012 10:53:58 +0000

Good, very helpful post. I am a great believer in journal writing or the equivalent, as it helps gets the ‘demons’ out. The challenge for many of us is to find something that works for each of us and, to use Viktor Frankl’s approach, find meaning and purpose that help us keep going.

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By: Carolyn Thomas

Carolyn Thomas — Sun, 04 Nov 2012 22:53:11 +0000

Hello Jane – I love that gravel road analogy. So true. Keep on hanging on for that ride! 😉

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By: JaneWaterman

JaneWaterman — Sun, 04 Nov 2012 22:37:25 +0000

I’m glad I found this post. Thanks for writing so eloquently about a difficult problem. Indeed, the “juggling” act is near impossible. I don’t even dream about simultaneous control. It’s kind of like being in a car with poor suspension on a gravel road. You hang on for the ride.

Blessings,
Jane

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