[eveParticipant]

Hi Dai
The 9th is coming up,have not seen anything about,patients perspective or view point on site,do you want any input or are you all prepared!!!:-)

I have no doubt in my mind that you will do a tremendous job,and put our concerns across,it is so nice that they are actually taking on board how patients and carers feel.
Please let me know if you need any input.
Looking forward to your view point.Love Eve

[DaiCroParticipant]

Hi Eve,

I would welcome any input by the way of ideas, questions or experiences. They are asking for a short (I imagine 20 minutes) contribution on the topic of the 'Patients Experience'. Janet has been asking me about the practicalities of the day but I can tell her very little as I just don't know. I have been waiting on further instructions from Craig Webster and coincidentally received an e:mail from him today which says:

[b][i]Hi Dai,

How are you doing? Are you still available for next week? Do you need any help from me?

Cheers
Cr[/b]aig[/i]

The day has been organised by Craig… he posted here on the forum stating:

'[i]I'm in the process of organising a meeting on the "Multi Disciplinary Approach to Multiple Myeloma" the outline of the days is below.

We are scientists and clinicians from a wide variety of backgrounds that work together to provide services. Whilst not generally serving patients directly I believe it is vital that we get the views of patients on the services we provide. I'm therefore looking for a volunteer to come to our meeting and give us the patient perspective on the laboratory side of MM. [/i]'

After a good while (and a repost from Craig trying to boost interest) I volunteered on the basis that my attendance would be determined by my health at the time. I emailed Craig on the 23rd August confirming my attendance (complete with the health condition clause). As I said on this Forum at the time:

[b]13.30 – Multiple Myeloma ? A Patient Perspective[/b]

'Will be my perspective on how we can be helped on our path towards individualisation of treatments by laboratory and technical services – especially, or specifically, on how we can be proactive in the management of our treatments. We will need guidance about the work of the labs – what they do, what they can offer and how we, as individuals patients, can influence the decision makers to best practice on our behalf. '

Well I have yet to receive any information re: guidance about the works of the labs… but I will e-mail Craig again. As for the rest of it… over to you folks! 😎 😀

If you have any idea, views, opinions, suggestions etc., then please post them here. Don't worry about sounding ignorant or naive etc… this will be a sounding board for ideas… from which I can hopefully gather a general feeling from the forum with one or two specific questions.

I truly and profoundly welcome any input. 🙂

Dai.

[b]The outline of the day:[/b]

Association for Clinical Biochemistry West Midlands Region
Wednesday 9th November 2011

Event Suite, thinktank Science Museum, Millennium Point, Birmingham B4 7XG

Joint Scientific Meeting with the Royal College of Pathologists

10.00 Registration & Coffee
10.40 Introduction and welcome.

Morning session ? Robert Gaddie Award and RCPath President?s Lecture
Chair: Dr Clare Ford

10.45 Grade A Trainee Presentations for the Robert Gaddie Award
11.45 Multidisciplinary Approach to provision of pathology services – Professor Archie Prentice
12.30 Lunch

Afternoon session ? Multidisciplinary Approach to Multiple Myeloma – Chair: Craig Webster

[i][b]13.30 Multiple Myeloma ? A Patient Perspective (Thomas Crowther)[/b][/i]

14.10 Shared Care Pathways and the Diagnosis of MM and MGUS

14.50 Tests for polyclonal and monoclonal immunoglobulins in the diagnosis and management of myeloma Professor Mark Drayson

15.20 Tea

15.40 Myeloma – New test for an old disease and new application of an old test S Anandram, Stephen Harding, Supratik Basu

16.10 Molecular Techniques and Their Uses in Multiple Myeloma
16.40 Close

[BADGERParticipant]

Hello Dai

I am reaslly glad you are representing us you are so good with words and seem to say just the right things good luck 🙂
Love Jo

[eveParticipant]

Hi Dai
I will see what I can do,I know boffins deal with the fact side of the treatment,understandable so ,but first and foremost I am a carer to some one who is very ill and is going to pass away,either from Myeloma or a related illness,so as such I tend to be emotional about it.So you Dai are going to have to bear with me.I do write as I think,as you well know,so hang in there and sought the good bits out.:-P

1. I would like information to come directly to patient his results his body not wait for a consultant to decide what you should be told.

2. As you say treatment should be directed personally,not same treatment for all patient,how can they decide a patient treatment,when every one knows Cancer caught early has a better chance of remission.

3. On a personal point of view I feel, we were told Slim has Myeloma,the rest I have had to find out for myself,although this is to do with the hospital,I would not have been in this position,if all results that have to come from out side of hospital,were sent to us,It is fine for them to say any questions,but if you do not know what to ask!!!!

4. I think patients fall into 3 sections
The ones who give up before they have started
The ones who go in to treatment with doctors know best.
The ones who want to know everything and do not see doctors as knowing everything

5. We all know just from this forum,how hospitals differ in there approach,to treatment,decided by the consultant and team,the problem is someone forgot to include the patient,On a personal level I get fed up asking something and not getting the answer explained why that decision has been made.So most thing are third hand and the interpretation is in it self not explained enough to the patient,if patients who wanted all the paper work were given it,it would make life a lot easier for staff and patient.

6. Dai you are aware of our position,we have now for the last 12 weeks been in limbo,as kappa light chains no longer show true readings,today Slim had bone marrow taken,it will be at least another 10 days for results,that will be 14 weeks of treatment without knowing if Velcade is working,I am told there is nothing they can do about it,sorry I do not buy that,I do not know what can be done to give us some peace of mind,Sharon has PET scan which shows any activity,told its not suitable for Slim,so how can this treatment be so different,but chemo is dictated by cost.or trials.

7 I would like to talk about trials and I am aware,that you Dai are not on any.
The Myeloma x1 trials are more or less set in stone concerning actual chemo,they do have other restrictions,but doctors are allowed to low doses,but they do not automatically give you blood thinning drugs,every drug has a special day to take them,no one has ever explained why,the answer always seem to be you are on the trial and it must be followed.

I am starting to ramble a bit Dai so I am going to stop.
May be someone else can give you more input,I do realise that what we offer to the professionals is only a small insight,My main concern is lack of information
But I would say to them would you walk a mile in Slim shoes,it sought of puts everything in to perspective to me.

I will sit down tomorrow and put my thinking cap on.Love Eve

[tomParticipant]

Hi Dai and everyone else

Many Thanks dai for taking this difficlt job on, as you know me I have said that am Happy if the Dr is happy and am realy trying to change that Veiw:-S

As Eve says we are in 3 catagries and I am "The ones who go in to treatment with doctors know best." type of guy its worked for me but I know what you all say I should know what they are throwing into my body:-/

I will try harder 😀 but good luck with it Dai and once agin Many Thanks for stepping into the breach 😎

Eve I hope Slim's BMB went well today and Good Luck with the result's xx

Tom "Onwards and Upwards"

[eveParticipant]

Hi Tom
I believe what ever works for you as an individual:-)that,s what is most important you are the person living with it,and it seem to work very well for you,all ways cheerful,never worry unless the doctor is not smiling,were would we be if we did not have people like you Tom on this forum.
So consider yourself an asset. Love Eve

[eveParticipant]

Hi Jo
How are you doing,thought you might post to let us know about info day.Did it go well. Love Eve

[MinParticipant]

Dear Eve
With regards to section 6 of your discussion. I have some personal experience of bmb and the time factor which I will relate if you don't mind for your future consultations. When peter had is 1st ever bmb to confirm his diagnosis the consultant took the sample at about 2pm. He explained to Peter that the results would take several days. (Reasonable)
At 7pm the same evening during visiting time peter was relating the above conversation to me from his hospital bed, when there was,knock at the door and the consultant was there to tell him/us that they were now in a position to confirm that they had discovered that he did indeed have myeloma. Why say 3 days or morei when the results were available within 5-6hrs
When he was unconscious in the ITU the same consultant took a bmb at 9am and by 12 noon they were able to come back with the result that his bm was overwhelmed with myeloma and plasma cells.
So it can be done if they want to. His consultant apparently had overall control of the haemotology labs who fell under his supervision, therefore he was in a positions sto insist on early results but then Birmingham university hospital had to issue the initial finding officially and that took weeks.
I suggest you get on your high horse and start gaining some respect by getting angry. My experience was the times I got angry I got a better service. Just towing the line and being compliant was not help full ifact it was a se one class service and age was in my opinion a definate factor throughout as I watched some v
ery young leukemia patients having every whim catered to. We often felt like second class citizens when young patients were around.
Min

[jmsmythParticipant]

Hi Min

When Frank had the Bmb we were told to go and have some lunch and come back to the Unit. This we did and the results were ready. Maybe 2 hours. Does it differ from lab to lab?

good luck Dai. You are very eloquent a d will get the points over.

Love Jean. x

[HelenParticipant]

Hi Dai
Good luck with the presentation, I'm very keen to know how you get on. I think eve's suggestion that each patient keeps their own results and is told exactly which sort of myeloma they have is important too.Helen

[eveParticipant]

Hi Min
It all comes down to lack of knowledge and when you get conflicting answers from the professionals, it does make you question everything around you.
I know what your saying Min as when he was first admitted they took bone marrow,full body xrays and MRI and result confirmed and talking about Myeloma trials within days.

I do not have the knowledge to know how they measure the % of Meloma in bones,the first time they never gave me a % second time told it had gone up to 80% in bones after 6 cycles of CTD,asked what it was before told me he did not have figures in front of him,but the file was there and a computer was on the desk!!!!
Finished 4 cycle and after 12 weeks still do not know if Velcade is working until bone marrow results come.I do find it hard to believe that there no other way of knowing what is going on,and if Velcade is working,I have questioned every body and they all say the same,and I do not have that knowledge ,Sharon on here has the same problem as Slim,she has PET scan too show any activity,they tell me it will not work in Slims case.

If any of you professionals are reading this I would be grateful of a little knowledge!!!!

[GillParticipant]

Good Luck Dai and thanks for representing us all Gillxxx

[PerkymiteParticipant]

I have read the brief several times and correct me if I am wrong but this is a meeting of Laboratory staff, and or, people who work in the background, who supply information to Doctors who then supply that information to us.

When in a chain of information the question is always one of interpretation. We have all, I think, have heard of the Chinese Whisper; where it starts out as "get me some fish and chips" and ends up as XXXXXXXX by the time it has gone through ten people. We are, as Patients, at the end of the Chinese Whisper and it is how the Consultant interprets the information he is given that he gives to us.

Clearly, then what the Patient needs is the information that the Laboratory gave originally which the Consultant and the patient can then discuss and not the information he decides to pass on. So that brings me to my point. The information that the laboratory gives should have a copy for the patient.

I can hear the cries of two technical already in the far of distance! So the information should be clearly laid out and include for example Blood Test result – white Blood Cells; Norm i.e. normal healthy person, Patients result. any comments or directions. The patient can be given this prior to his consultation so that he can study it and formulate any questions PRIOR to the consultation. You will quickly learn which the relevant reading to observe is.

I agree with the three types of Patient and each will treat this information differently I know but one of the things I learnt in Business is that you ?cannot please everybody any of the time? (this is my correction on ?all of the time?). And, you just have to accept that at one end of the scale some Patients will see it as waste while at the other Patients will see it as a valuable tool.

Consultants will not like this I think for many reasons; first and foremost Knowledge is Power and by this action the patient would be given the Knowledge and therefore the power that information bestows is passed to him/her. Consultations would be longer – for the more inquisitive of us shall I say; at the moment I am in and out in a flash.

Finally one of the things I least like is that I do not see the same Consultant every time, I accept the reasons for this but it adds another variable into the information I receive i.e. not only an I at the end of the Chinese Whisper I have a different person relaying that information every time. By having a copy of the Lab report I would have consistent information each time regardless of who the Consultant is.

I rest my case Your Honour.

Thanks Dai for representing us, I hope this is of some help.

Kindest regards ? Vasbyte

David

P.S: I thought I better add a post script of how I see it working in relation to me.

Appointment 09:30. I normally book into the main receptionist at 09:20. When booking in the Receptionist finds my Hospital files and makes necessary notes and places my files in the Consultants case load. I then wait in the main reception area to be called through to the Consultants waiting area, normally about five/ten mins. I then wait in the Consultants area to be called through for my consultation by ?a? Consultant, normally another ten minutes.

I would expect that when I book in at the main receptionist she, when collecting my hospital files (which already contains the Laboratory report on my blood, would give me MY copy of the Laboratory report. I could then study it whilst waiting to go into the Consultation. A very simple procedure with little extra work.

[eveParticipant]

Hi David
I have no problem getting blood results I ask for them at the beginning of each cycle the nurses print them off,and I can see straight away if there are any problems.I find the chemo nurses are willing to expain anything I do not understand,and since Slim has been on Velcade take more of an active roll,concerning his general health,which did not happen on CTD.

It is the bloods,urine,bone marrow,that are sent away to,Leeds London and Birmingham for trials,most patients never see these results,I have some copies,received on asking for them,nothing since the end of July although I repeatedly asked for them,they have explained the kappa light chain results are no longer viably,and we wait for BMB.

Everybody want a cure for Myeloma,and the way forward Is trials and results through labs.We know there is no cure,only remission as David said not in our lifetime some people have an extra 20 years some very little time.

To get it diagnosed sooner,the gp has to have a better knowledge of MM but to have a guide line for test,as you know Dai from your doctor in Wales
If they have a procedure to follow in surgeries and in hospitals that is set in stone,patients would not feel left out,I can only speak for what MYELOMA UK,has done for me,the booklets given at hospital,the help line,this forum,all have been a life line as a carer.
I think Dai it might be worth getting in touch with Ellen to see,what patients ,questions are put to her

Last but not least in to days modern technology,why are results still taking,the same length of time to be given to the patient as 20 years ago.
I asked could we be given the results on the phone or may be they could e mail them,it would give us time to consider options,be calm for consultants meeting,and by then we would be composed and know what questions to ask,
It does seem very strange that more people know about my husbands health and condition,than he does himself
I think they call it the Data Protection Act. LOL>:-( 😛

[PerkymiteParticipant]

Well the way it works here Eve, in the Beacon Centre, Taunton, Somerset, is that I give blood 5 days before my Appointment. I then get the results, if I ask for them at the appointment. I find, and perhaps it is my age, that I have not got time to think about the implications then. Normally, I ask for the PP count and I get the rest IF it is included in the standard letter that goes to my GP after the appointment. Personnaly I would like the results of ALL tests [b][u]prior[/u][/b] to my appointment so that I can consider them and compare them with previous tests and then formulate any questions properly before my appointment. Of course this may not be what Dai's mini lecture is all about but it is my two penny worth anyway 😀

Kindest regards – vasbyte

David

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