I have had a very frustrating/depressing 3 months, battling with a surgical team to get a date for an operation to take my spleen out (decided last Sep to hopefully stop AIHA). There must be others who have done this better than me, so what are top tips for others that might have to face the challenge of non-communicative medical depts.?
To cut a very long story short, I had total non-communication (no response to emails/ansaphone messages, errors in out-of-office replies and certainly no-one actually answering a phone!) from the surgical team. Also lack of CLL understanding on the surgical side (perhaps no surprise - I think I am only 3rd case this year on my CLL/AIHA path, and I am in a major CLL centre).
However, key (I eventually found out) is I hit a low point of steroids for surgery (so it is like a flight path....you need to know time/destination to plan decent....something I explained v carefully at my surgery consultation). Also it turns out the Op will not only be in same NHS Trust as my great haematology dept.....it is in same building!
When, last week, I finally got a date (and not date range initially talked about, so I have had to change flight-path), I quickly realised they did not even know recommendation of an Ultrasound (USS - which surgery had commissioned) was that I needed an MRI (on a past hernia surgery), so they know what they are facing when wielding knife.........in the end, I sent them the USS results (which I had got from haematology)........
At the front of my mind is that I really do not want to annoy man-with-knife........should I have been more persistent/stroppy (not sure how I could have been)? should I have gone into clinic without appointment? What can you do in this situation?!
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I feel for you going through all this frustration and wish there was an easy answer. Who has the time or inclination to make sure that everyone is doing what should be done when they aren't the best? We should be able to trust that the process is working correctly. After all, it's not as if we patients are likely to know the process, though you do seem to have got them sorted! Obviously, the practices in the UK and Australia would differ, but somewhere along the line, someone would be taking your history prior to your surgery to work out what specifically needs to be done to maximise your outcome. Perhaps this person would be the right person to question on who is responsible for taking on the coordination role - if it isn't actually that person?
While it doesn't help that your situation is rather rare, this is why there are standard procedures to identify what preparations need to be done prior to surgery!
I hope you get some helpful responses, because you've touched on an extremely important issue. We aren't aware of the complex, behind the scenes processes that happen whenever we have surgery and that makes us blissfully ignorant of all that can go wrong until we experience a system breakdown as you've witnessed.
I'm glad you've now got an actual date and you are 'on the flight path'. Here's to a smooth, uneventful landing.
Neil
PS, I've categorised your submission under Health System and corrected Medical in your title - hence the "Last edited by AussieNeil" in your post.
Interesting point re 'someone co-ordinating'. Within the surgical team, I think there have been 4 or more already (in only 3 months).......surgeon (not met, no communication), registrar (who I met at assessment and sort of agreed an 'early New Year date - she has already rotated role, so a new one is there), secretary (well, three of them as cover during holiday of main one: during this period I was directed all over the place).
Very unclear who is making decisions/in charge! You would have thought the surgeon would be in charge, but who knows!
I have been given a specialist nurse with a name and a phone number. He's brilliant and although he can't authorise anything he seems to have the ear of my consultant. Does everyone have their own nurse?
I'm sorry you are being given such a run-around. I would hope that this most unsatisfactory situation is very unusual and that you'll soon see the level of professionalism you would expect when your life is in their hands.
I'll be interested in hearing if others have some key coordinator like mollyfletcher and more importantly, I hope you'll be given some guidance on what you should do to subtly hint towards getting a more acceptable process in place to manage your treatment!
As a physician turned patient I completely sympathize. Medicine is incredibly compartmentalized. Your surgeon may know very little about CLL, he has all he can manage to maintain knowledge, competence in surgery. Communication is also very bad among the various specialists who treat you. The very best is to have one doc, a "medical home". This is harder and harder to find.
Unfortunately we are left on our own to get knowledge, and coordinate our own care. Thankfully there are forums such as this. There is information and answers to questions that doctors and nurses are not that interested in, which impact quality of life when they are, rightly focused more on outcome. A supportive significant other is invaluable.
I have a local Oncologist, another at a referral center, a transplant specialist, and am about to see, hopefully, a CLL specialist. The care has been wonderful, but it is disconcerting how much I have brought to the table from my research. eg Pneumonia vaccine,flu vaccine, need for Ig and Vit D testing. Not entirely docs fault, they are busy, and a disease such as cll, has numerous facets.
I really fear alienating any of these folk, am aware of the odd things that influence people, not least is ego. I try to factor in their response to my questions. Also try to get them to see me as an individual, someone with hopes, fears, intelligence. Again a response to knowing how a clinician must maintain some distance for objectivity, how absorbing too much of a patients pain can become unbearable. A thin line between empathy and self destruction !!
thank you, Lenny, for bringing a perspective to the forum.
The balance a patient, who has the drive to research the subject, has to walk with their medical professionals is always going to one thrown by a presumption of right to knowledge by the medical professional, but many of these professionals are finding these days that their patients can be "specialists" thanks to dedicated sites and peer networks, like CLLSA, and the availability of internet information (carefully filtered by referral back to sites such as this). At all times the patient should be prepared to challenge the medical community by asking the questions, not by dictating their own desires based on gained (perhaps mistaken) information. The patient's information should always be used to assist the medical professional by asking those difficult questions but without unnecessarily challenging the medic's right to be the professional in the arrangement. Also the medics need to correct misconceptions! Fortunately I'm finding my GPs and Haematologist do not underestimate my knowledge nor desire to have it included in the mix and I feel I'm part of the partnership rather than a subject! Although I am always happy for them to correct any misunderstanding I may bring to the mix.
But God bless the hubric for their ability to show their inadequacies quickly by not giving the patient the right to join in the conversation. May we always be able to identify them!
Thanks Lenny, for providing that personal insight into the challenges faced by the medical fraternity. I hope you'll be able to provide much more in future.
This community is well aware of just a fraction of the new information constantly appearing on just one rare condition - CLL. It is mind boggling just thinking about what that means for a just a haematologist, let alone a GP!
shows the challenges American doctors face in trying to stay in business with the squeeze on funding. What a challenging environment in which to try and obtain the best outcomes for all involved...
One of the primary aims of this site is to provide the means by which patients can be better informed on their condition so that they can engage their medical team in pertinent discussions that will result in a better outcome for them, while saving valuable time for both patient and medical staff.
It is great to see some long overdue discussion on the different perspectives from djgolding and you. This community would benefit from much more discussion on this vexing subject. In this new world where patients can research so much about their condition, how can patients best help their medical team and how do medical professionals work with patients that are trying to learn about a very complex subject in which they have little or no background?
Yesterday I met with local oncologist, who is a colleague, went over tests, plans. good visit but little tensions are there, I am not sure that he is happy with my planning to see a cll expert as well. I want local and cll oncologist to work together.
Managing your doc to best advantage, may well be a survival tool. Funny to say that as the patient may be the dependant, less knowledgable one. There is actually a whole disipline called “managing form behind” which is what we are, at best, doing. It is about positively affecting outcome, even when one is not the leader. But, for us, it is about commitment and involvement.Sort of like an omllette, the chicken is involved, the pig is committed !!. So the patient’s job, or of their caregiver, is to select as well,as possible, their doc. Keep all keenly interested in your welfare. Docs as well as their staff( nurses even receptionists). It requires people skill, reserch, self knowlwdge and awareness. A bit much for someone trying to live as well as possible with a chronic disease, or even their caretaker. But what better use of our time and efforts ??
Sorry to be blunt, Lenny, but what is more important, you colleague's ego or your life?
I'm glad you've mentioned that excellent analogy where you are the pig and your colleague is the chicken. In a perfect world, people wouldn't let personalities get in the way of what is best for others, but as you've observed, in real life it takes people skills which not all of us have and which we aren't probably going to be using if we do have them when we are stressed by serious concerns about our health.
In any other field where we need to engage someone on an important project for us, we'd prefer to engage someone who has had considerable experience in the field. Why should the medical field be any different when our quality of life if not our very life is at stake? CLL experts recognise that knowing when to treat is as much of an art as a science; treat too early and the patient may have reduced quality of life from the often permanent side effects of the treatment. Treat too late and the patient may not survive the drops in blood cells lines from the impact of the chemotherapy on the bone marrow (the myelosuppressive effect). There is an incredible range of variability in how CLL patients progress and react to treatment. Mayo Clinic recently released a paper that found that patients that went to CLL specialists survived on average more than 2 years longer than patients that did not go to a CLL specialist. When your are in treatment and have an adverse reaction, who would you rather have deciding what to do? Someone that hasn't seen that happen in a CLL patient before or someone who has experience in what to do?
I hope you can achieve your aim of getting your local and CLL oncologist (ideally haematologist) to work together. Some CLL patients successfully achieve this - having a distant CLL expert working with a local oncologist.
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