[DaiCroParticipant]

[quote] [b]I forgive his mistakes, but not his certainties[/b][/quote]

([i]See the 'Choices' thread for Eva's full explanation[/i]).

Hi All,

At the beginning of each academic year, with each new class, I used to spend the first lesson with my students in negotiating 'Ground Rules'. There were a few that were based on college rules and were therefore non-negotiable (like not eating and drinking in class) but the rest were negotiable. I always asked them to consider an important one for me… no sarcasm, which I have always found to be a very negative and very intimidating for some people… seeing how important it was to me it was always adopted… but they soon found that the absence of one set of behaviours (sarcasm) left room for another set, open and frank discussion with no fear of being put down by negative responses. 😎

If prompted I would write down several examples of ground rules set by previous groups as a guideline but I always stressed that it was important for the group to 'own' their rules… that it was paramount that they created their own learning environment with rules that reflected their particular needs. I stressed that these rules would have to be policed by them… that I would only act as an individual within that group with the exception of the college rules. I was amazed but it always worked and the learning environment was always positive and dynamic.:-)

One girl stunned me and made me not only fight for her rule but also to re-evaluate my whole approach to teaching (and learning). She said that she felt it was important that we didn't accept anything as certain… that we should always consider, however 'sure' we felt, that there was the possibility that we might be wrong. We adopted her rule and I adopted a sea change in my way of thinking and my approach to teaching.

Hence my sense of relief when Eva made the assertion quoted above.

I have always thought that the kind of certainty, sometimes expressed as arrogance, that some Doctors project, is because their convvictions are based on 'good science' and solid knowledge… but surely, of all peoples, the field of medicine has proven time after time that there is always, new evidence, new findings, better methodology and better ways of doing things. This, together with advances in the medicines and procedures, should instil a sense of humility in Doctors… but it rarely does… and that frightens me.:-0

Doctors have a tough job, they have to make tough judgement calls and cannot afford to get too close to their patients… but that shouldn't stop them listening to us and it shouldn't stop them considering, in the case of some individual patients whose symptoms don't 'fit the bill', that their plan of care might be done differently… or in some cases they may be plain wrong.

As has been said in the 'choices' thread, in this country there seems to be a definite reliance on the SCT as the mainstay of the fight against MM. In the US there are more than a few very successful clinics and clinicians who disagree. Here it seems to be a case of 'hit them with the maximum dose' and then decrease if problems arise. In the US there is a definite move towards a 'little but often' approach… with an increase given only if it is deemed suitable.

I don't understand how two sets of clinicians can be so poles apart on the way forward with MM. The US seems to be producing results that are way ahead of Europe in general and the UK in particular.

I do know that some Doctors in this country feel tied by the NICE funding options and would welcome some degree of flexibility in trying for a true individualisation of treatment. So, for me, if I have to choose between one approach that is led by clinically tried and tested approaches towards a flexible, medicine led, 'small is beautiful' mindset and that of a 'hit them hard' and transplant soonest mindset then I will take the first. If we (the UK) are right then why is it that we are always looking over the water for the next new medicine? We are so fortunate to have the NHS… many, many ordinary working Americans do not have sufficient insurance to access some of the advances in MM, especially long stays in some of their excellent clinics… our Doctors are led by their care of duty where more than a few Doctors in the larger private hospitals are led by greed… pure and simple… profit (and therefore high salaries) comes first.:-S

I just wish that our Doctors would push the Govt. to make the NICE funding criteria as flexible as it needs to be for them to ensure the maximum individualisation of treatment. It is what they want, of that I am sure… but not certain… I am willing to concede that I might be wrong… now, if they could do the same.;-)

Dai.

[PerkymiteParticipant]

This is all a bit "deep" for me but I did think Eva's comment [i]forgive his mistakes, but not his certainties [/i] was excellent and did made me think.

When I hear people pontificating about this and that I always reminded myself of the eminent Doctor who upon the invention of the steam train announced that the human body could not go faster than 5 MPH 😀 and I remind myself that through history there have been lots of ?eminent Doctors?. Treatment with Leaches was standard practice not that long ago:-( .

At the end of the day we may well argue about various treatments but unless I could go private, like Eva, I do not believe I have any [b]real[/b] choice apart from refusing treatment altogether that is. But shall I go this path or that, no, I do not think so. And, then in the back of my mind would be the nagging question, ?Is this course of treatment being recommended for my health or because it brings in more money?? or ?Is this course of treatment being recommended for my health or because the NHS is trying to save the money??

At the end of the day I cling to the hope that the person sitting opposite me in the consulting room has my best interest at heart AND knows what he/she is talking about ? but does he/she really know or is he/she just two pages ahead of me! In Eva?s case one was at least 5 pages behind her!

Kindest regards ? vasbyte

David

[DaiCroParticipant]

Hi David,

I was thinking aloud because I couldn't sleep (too excited about my Dex dose this morning no doubt).

You said: [b]'At the end of the day I cling to the hope that the person sitting opposite me in the consulting room has my best interest at heart AND knows what he/she is talking about '.[/b]

I must say that I have no doubt about either of those statements. I just question the mindsets developed around what might be called 'best practice'… or the best available treatments and their efficacy.
😐
If… if our Doctors were to be given carte blanche, with no restrictions of costs or access to treatments… then I wonder, what would we receive and in what order? Generally our Doctors are wonderful and perform small miracles given the fact that they are forced to keep one eye on the ledger… they often get us onto trials (or create one) in order to get us the best possible treatments.8-)

I don't mean to knock our Doctors and I apologise if it seems that way… but I do reserve the right to challenge the overall thinking and the restrictions put on medical practice because of inflexible accounting. When I can see the US stance on MM, with demonstrable results, then I feel it only right to ask 'then why can't we?':-|

Its a laugh or cry situation in a way. The US have access to a wonderful array of medicines and dedicated clinics and expert clinicians.. but you have to pay through the nose for it. The UK has a National Health Service, free to all… but it is bound to archaic funding options, formed by committees, with little to no flexibiity AND still favours certain people by dint of their post-code.:-(

I think that our Doctors have one hand tied behind their backs in relation to their American cousins and given that I applaud their efforts… I just wish that a compromise could be found where a 'best practice' document of world-wide acceptance could be agreed between the medics… and then we would have something to knock on the door of No.10 with. :-0

Dai.

[wendyduffieldParticipant]

I second that Dai, I do trust my Consultant to come up with the best possible treatment regime for me when the relapse comes but know she is tied by funding constraints.
A worldwide best practice protocol would be fantastic. Surely not that difficult in this online world we now all live in. Surely not that difficult to link up trials internationally?

I dont know if the treatment in the US is better or not. I was told by somebody I forgot who in the haematology unit that treatment of myeloma is better in the uk because when/if your insurance runs out in the states, you run out of options and are subject to their rulings on whether you get and what you get (not much different to NICE). I do however have a sneaking suspicion that the novel therapies and combinations of them that are current over there are because they make money for the drug companies who are pushing the

[eveParticipant]

Hi Wendy
I thought the Myeloma X1 trials were world wide with all data being combined and results published world wide,to come up with results that will eventually be accepted as given results of CTD against RCD.May be I am wrong.Eve

[EvaParticipant]

Hi everybody,
Maybe there is one area where we can express our choice.
Outcomes of any illness are difficult to predict: even a flu or cold is still a mystery. And yet myeloma is supposed to be an umbrella for a huge number of genetic changes in our plasma cells and environment of our bone marrow. We have barely begun to scratch the surface of the knowledge that will be there in the future. A transplant can give someone years of remission or it can make someone worse! Patients with one kind of translocation or deletion can benefit most from Velcade early on in the treatment cycle; others with a particular deletion( 17p) are supposed to live shorter if they get lots of Thalidomide! Mini-allos are available for some older patients overseas, but the cut-off here is generally a few years earlier – even if we climb mountains, run marathons, have no co-morbidities and have the body of someone much younger. I have read papers signed by experts ( some of whom are in the UK)verifying that MM consultants here are doing research just like everywhere else. And yet, almost no effort seems to go into determining what our gene testing shows.It's an early and imprecise Science, and maybe money stops us being tested in this way. Though I can assure you that trials conducted in London seem to have begun collating such info.The NHS is onto it, but it will be a long time, I think, before it affects treatment decisions.
So what can we do?
Well first of all we must try and become the best version of the person we are. Our MM consultants must feel quite conflicted at times. If we are the kind of person that wants them to decide on our part what is best( and after all they will always know more than us and they understand the budgetary constraints, too), then this may be the healthiest option for us. We can show good grace towards our doctors and nurses when treatment decisions fail and work with them on these challenges, by displaying positivity and faith.
On the other hand, we may be the kind of person, who for the sake of 'self-determination' and curiousity, has opened certain Pandora's boxes of knowledge. Such a person can still act with grace and doesn't have to be in an adversarial relationship with their doctor. But such a person might need to ask lots of questions – some penetrating, some stupid, and we might need a consultant who can put up with that. If they can't, then we may to find the courage to say that even though our consultant is wonderful in certain ways, there might be a personality clash. The courage to ask for another doctor, even though our consultant hasn't done anything terribly unprofessional or negligent. The NHS is supposed to allow for that. Why do I think this is important? Because we are facing the biggest fight of our lives with this illness, and there's a big difference between
dreading a visit and looking forward to a chat with our doctor.
My blood test results had shown irregularities in my plasma cells already years ago, as well as anemia. I'd been told that by one doctor, and assumed that if it mattered, they'd have taken it further. I waited patiently. I was a classic myeloma case in terms of symptoms. One day when I was feeling particularly awful, I went to my GP and said I wanted tests until we found out what was really wrong and I didn't care that it was a Friday and 4.30 pm. I got my diagnosis and my treatment,but by then the bone damage was rather widespread.
Both compliance and pushing are good, as long as they reflect who we are. And we should show concern for the psychological and emotional health of our doctors, as they have a very difficult job indeed.
I'd like to finish with a story about a woman called Cath in Australia, where I came from 18 years ago, before we settled here. I've slowly become the second type of patient – the one who wants to know what all the little numbers mean. Cath had gone through all the treatments available and was in a hospice getting palliative care. Someone in her family had researched a new drug on the Net. It was called Revlimid and they told her about it. She asked her doctors and they looked into it. It was unavailable. One doctor contacted the pharma company. Permission was granted for her to try it. She did. She had four years of wonderful response,left the hospice, and did a lot for many other cancer patients in Melbourne and in the area she lived in. An entire big phase of her life in which she grew and developed and changed in positive ways. Maybe her greatest achievement was not finding the Revlimid, but who she became in those four years and the satisfaction she experienced.
A rare story, I guess, but one that has always moved me.
Best,
Eva

[wendyduffieldParticipant]

HI Eve
I am not sure, I thought it was just a UK trial but obviously results will be published worldwide.
Regards

Wendy

[wendyduffieldParticipant]

Hi eva
very interesting story
you are right we have a choice about how we are with our medical teams and how informed we wish to be about our illness. I think knowledge is power and am the latter like you. I ask questions, some very difficult ones for my consultant to answer and some very stupid questions too. We dont have an adversarial relationship, in fact I think we have a good one but I know if I needed to I could get a second opinion, when the time comes and she wouldnt be offended. So yes we do have the choice of getting a second opinion if we feel one is needed, it was certainly needed in your case.

All the best

Wendy

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