For many of us, CLL is not the only chronic health problem we are living with. This is a recognised issue in CLL treatment, with papers covering the challenges of dealing with patient comorbidities*. Further, with our higher risk of infections and secondary cancers, we are more likely to find ourselves in the situation of needing medical care involving multiple specialities. Some members have already recounted the frustration of dealing with 'silos' of different medical specialist streams and the difficulty in getting them all communicating and working together to help us through a health challenge.
* In medicine, comorbidity is the presence of one or more additional disorders (or diseases) co-occurring with a primary disease or disorder; or the effect of such additional disorders or diseases. (Wikipedia)
With that background, this article by Don Campbell, Professor of Medicine at Monash University, Melbourne, Australia is particularly interesting:
While much of the background is Australia specific, the article notes that "This is also the case in the United Kingdom, where the Royal College of Physicians recently recommended a radical overhaul of the purpose and role of hospitals. The college argues that in future, hospital will need more generalists and fewer specialists."
Also note the reference to the Mayo Clinic in the USA, a recognised centre of excellence for CLL research and treatment: "This fresh approach is starting to appear in a diverse range of settings, such as the Mayo Clinic, where the Center for Innovation’s mission is to transform the experience and delivery of health care through the application of design thinking.
Will our health care systems be up to the challenge?
Neil
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I think we have a long way to go in Canada, and may run out of money before we get there.
I can attest to the fact that bouncing around between specialists is no fun... The one saving grace I have is that my medical records are online, so all my doctors are on the same page... I get a blood test and my GP and Cardiologist and Dermatologist have the results... I see my GP for a lump and my Onclogist sees my referral for a CTscan...
Having integrated medical records is the first step... it is not 'rocket science' but privacy and government lethargy appear to rule the day...
Sharing information is the first step in my opinion...
I have been a lurker for a few months, following both CLLSA professional experts, patient-experts, and the multiple links provided. Having lost my go-to site at CLL Topics when Chaya Venkat moved on last year, I can only say that this community is marvelous. You guys scour the whole scene and keep us on point about everything relevant. This post and link on coordination of care is especially timely. I have had this very discussion with my oncologist who will likely release me to a hospitalist should I need a future admission. Neither my primary nor oncologist follow patients into the hospital. I have been concerned about that since I have always assumed that one needed someone knowledgeable about the individual history to drive the boat during complications need. But I have noticed over the years that my primary just refers me to specialists anyway. This article makes the point that it is better to have a specialist whose specialty is coordinating specialists.
After several months here, I am reaching the sense that this community will be my personal second opinion when the time comes for more treatment. I am most gratefull for all of you and your diligence. Hope I can return the favor sometime.
Thanks for your kind words acknowledging the contributions of our regular posters Bud. I don't think anyone can come close to replacing Chaya's legacy, with excerpts from her sites still quoted regularly here a testament to that. I too learnt from Chaya that it was very much in my interest to learn what I could about CLL and along with the mutual support, that's really what this community is all about - sharing information that may help us live better and longer with CLL. The high level of involvement by our members (about 40% of our 1,400 members contribute each month) provides members with an invaluable 'yard stick' that they can use to assess the quality of care they're being given. That sharing of knowledge and experience can also arm them with the knowledge of what questions to ask and whether it would be advantageous to seek what could be a life changing second opinion.
With the heterogeneity of CLL and our international membership, we all have unique perspectives of the challenges of living with CLL and dealing with our respective health systems. That richness of experience means that there's a pretty good chance that someone, somewhere can pass on lessons learnt that could be a life saver for another member. That's a pretty good reward for becoming more involved.
Sadly, you aren't alone in lacking a "specialist whose speciality is coordinating specialists" and given that that much needed innovation looks to be a long time coming, if at all, for our health systems, for the moment it seems that we or our carers will have to personally take on that role. Perhaps you'd like to kick off a topic on that if it doesn't follow on from here?
Perhaps I could do that. I have not given thought to that in any organized way. But as I head to my annual visit to Duke University's specialty CLL clinic for a second opinion later this month, I have been actively following our community posts to glean insight about questions I should be asking at this point. Since diagnosis and immediate FCR x 6 months with normal labs since and absolutely no subsequent events, I do know the clock is ticking. My oncologist does not see any practical value of further studies until labs change and symptoms arise, saying that I will know soon enough the decisions to be made. He is of the mind that clinical trials can be pursued then. Actually, unless I am remain ignorant of important things I really should be considering now, I am not inclined to be looking for definitive details about when I am most likely to croak. But I do wonder if there are things I could beneficially be aware of that may be helpful in planning for my future treatment. For example, the combination trials with ABT and other novel agents are most encouraging. But I don't have the sense that there is anything to do now in preparation. I had flow cyto/FISH revealing 11q deletion. But that's it so far.
Thanks for the good deeds. And the photographs that are nothing short of inspiring.
Yes in secondary care in the UK, the demise of the general physician appears to have evolved into a specialist for every part of the human body with fiercely guarded demarcation points. It's often argued that the only true medical generalist is the pathologist!
My recent post, 'I'm collecting 'ologists' links in with this subject;
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