[DaiCroParticipant]

Reading the general problems we have in getting hold of information about our treatments and tests etc it seems to me that it would not take too much effort or research to centralise and standardise a basic reporting method for Myeloma patients.

I know that sorting out these confusions is only a matter of organisation… and perhaps there is a role for MMUK in this. How about a standard reporting form that gives a brief summary of areas of discussion, treatments offered/accepted with start/finish, dates/times and then a page 2 with any bloods and other tests results (including CT and MRI etc.) We are talking about a few lines from the consultant alongside general/specific tick boxes… with the understanding that the form is for basic information only and not a prescribed treatment plan.

The patient could either leave with their copy or have it emailed or posted. I am sure that funding could be highlighted and raised for any software/publishing costs and alongside a glossary (explanation of terms) and a brief explanation of each tests, bloods etc., in layman terms… i.e. what each test is looking for and how to read/understand the basic results.

If I had anything akin to the document above I would be a very happy bunny indeed. Imagine a thin file with a record of all your visits, complete with test and blood results in a format that you could read and understand. I would also advocate a series of explanations of processes and procedures for all standard treatments… i.e. where, what, who, why, when etc of starting CDT (or equivalent first frontline treatment) + Velcade + Revlimid etc… etc…

These patient info sheets/reports need not be complicated… as a matter of fact they need to be in plain English with the minimum of technological or medical jargon (although the basic glossary will help with the necessary tech/jargon).

It needs a central body to produce such documentation/records and who better than MMUK? Of course they will need input from a crosss section of patients (here we are, ready and willing to contribute I am sure) 🙂 .

What do you think people?

Discuss. 😎

Dai.

Dai.

[mhnevillParticipant]

Hi Dai

I think this is a great idea – the trouble might be getting the medical staff to co-operate. I take my MM Diary along to each appointment to get my blood results, as they can't provide me with a print out – my Consultant says they don't have one!! I'm not sure that she really agrees with me keeping the results and I have only seen the specialist Nurse once, and then with the Consultant. I suspect they both deal with the range of blood cancers/disorders.

However, on the up side of your suggestion, it would then be easier to create some kind of cross referencing.

I also read the Myeloma Beacon (from USA) not all their postings as many are irrelevent, but I like the way each person's postings are follolwed by a brief synopsis of their treatment. It helps you to see who is on a similar path to you. If, like my, you have no support group nearby it is so helpful to make contact with someone whose myeloma pathway seems a bit like mine. I have have really appreciated my recent exchange with Julie for that reason.

You are right – it can't be beyond the wit of man to devise such a proforma.

Best wishes to you, Dai, as you look forward to your holiday.

Mavis

[cajjerParticipant]

Dai

This is a very good idea, however I receive treatment for other conditions as well as MM, to get these treatments I have to visit hospitals in 3 PCT's, none of them use the same paperwork for blood tests for instance and I have little doubt there are other examples.

I have little doubt that the form you suggest will be altered, altered and altered again by some faceless administrator and you won't see the finished article for years

Charles Jude

[CarolBradley1Participant]

Hi Dai
We have something on those lines and maybe everyone does. Anyway, we got a folder when we first started treatment which logs all visits and treatments – it also provides a brief intro to chemo,basic glossary etc. To be honest I haven´t really used mine as it was just yet another thing to cart around (and lose on bad days) but I can see the advantage of it.
Does everyone get this do already?
Cheers Carol

[DaiCroParticipant]

Not here… Occasionally I manage to blag a print-out of my bloods but that's about it. Everything else disappears into the big (Red) medical records folder.

The other week I opened my records folder – I was waiting for a Velcade infusion and I had to fill in my record sheet of aches and pains etc… I could see where it was lodged and so I opened up the folder, pulled it out, rested it on the file and filled it in. The nurse working with me noticed what I had done and she asked me nicely but firmly never to do it again. Apparently it is a big no-no… and it costs [b]£150-00[/b] to get (written) permission to delve into your own records. :'-( >:-) >:-(

Dai.

[MinParticipant]

WHAT £150 you got to be havin a laugh!
Who on here knows anything about Data protection?
I know criminals are allowed to see a copy of there record and the charge is zero theres got to be something wrong here… oops I feel a momentary annoying letter to my MP coming on if this is true! As you can see I am in Rant mode. And its not due to any Dex! There is plenty of natural steroid in me now I have read that. HEE Hee
Nurse rang this morning to discuss next appointment and I asked for Peters discharge letter. She said she wold post it out. I asked her to e mail it. Said she was not allowed. How much money would be saved by e mailing appointments letters etc instead of postage.
Min

[DaiCroParticipant]

I used to be full of natural steroids… although I was a landlord of a real ale pub and good, fresh food restaurant, I hardly ever bothered with alcohol… I enjoyed the lift of a natural buzz that came from somewhere within… but these days my natural buzz has been swatted by years of daily meds.

But like you, when I heard about the £150: 00 charge for entry into my own records my flabber was truly gasted.

Now, it so happens that I haven't quite finished with my former consultant but I need access to my records for the period when I was in his 'care' – and yes, its going to cost me. Apparently I have to apply in writing to The Queen's medical Centre, in Nottingham (which I assume is the central records office for the area hospitals) and they will arrange for a view… and extra costs for any copies of records.

Funnily enough I didn't want to bust a gut when I found out… rather I was truly amazed and just as amused. I think the amusement factor will soon dry up when I get the list of charges.

Dai.

ps… thanks for the link/download… I'm off for a coffee while I read it. 🙂

[ellenModerator]

Dear Dai

You might be interested to know that Myeloma UK is in the process of setting up something very similar to what you have described, via the discussion forum – an online diary if you like.

The idea is to enable the patient to generate a ?treatment profile? and log down their experiences during their treatment course. They would then print this off and take to their doctor to help ask the right questions at the consultation and provide the doctor with an accurate account of what the patient has experienced since this last visit.

While this project is still in development, it could be modified so that it requires doctor input allowing patients to get the information they want from their doctor and this could be added to the patient?s profile.

So watch this space as they say

Ellen

[PerkymiteParticipant]

I think this is a very very good idea. It would make so much difference to Consultant appointments.

Well done Dai and MMUK

Kindest regards – vasbyte

David

[cajjerParticipant]

Dai

If you go to the attached you will see the fees that can be charged, I assume that these are the current charges. I hope this works computers and me don't always work in the way intended

Charles

http://www.nhs.uk/chq/Pages/fees-for-accessing-medical-or-health-records.aspx

[ElizellenParticipant]

That looks a lot better than the £150 Dai was told!!

[DaiCroParticipant]

It is Elizellen… I will make enquiries when I return to active duty on September 12th. 🙂

If those charges are universally applied then I will have some cash left for other things.

Let's see:

A fresh box of 'Celebrations' every clinic £ ?
A personal hand-warming pillow: £ ?
A spare vein tightener jobbie £ ?
A personal footstool for the waiting area £ ?
A really good mirror so I can put in my own cannulas £ ?
A new red folder for my records £ ?
(My old one is massive and is held together by chewing gum and knicker elastic)

Not too expensive… except for the sweets… but there could be a rota from within the regulars. 😎

Dai.

[CarolBradley1Participant]

I simply don´t understand why adults who are fighting a life threatening condition are now allowed a record of their treatment progress.
Whilst I was undergoing my conditioning chemo prior to sct I asked my specialist for a photocopy of my prescription which included my monthly blood results including neutrophils etc. etc. I was on such a complicated tablet routine that I needed it just to know what what tp take each day and when. My specialist was quite happy with this and understood that it was a useful memory aid given that I did everything myself at home. This was provided free so I can´t see why we can´t be given a copy of our results automatically – after all in our pct we are supposed to get a copy of any letter sent from our specialist to our GP which can be quite technical so where is the difference?
Carol xx

[eveParticipant]

Hi Carol
You are allowed a copy of all results,you do have to ask for them,I have most of Slims results,but some take a couple of weeks to get back as test are done in London,Leeds and Birmingham.
Any department in hospital can only give you result they deal with,computer does not allow them into anything not connected with there dept.
What your not allowed to see is patients notes,comments by doctors,thats what you have to pay for.
It was £20 years ago,for admin cost of someone photo copying them.
The funny thing is my daughter,often has to visit 2 hospitals in one day,and see different consultants in different parts of hospital with her son,and they actually give her his file to take with her around the hospital!!!
I took Slims KappA Light Chain results to my own doctor,and she was very honest,she said she did not understand them!!!
I saw a Myeloma Trials Team Nurse and she explained the result to look for the MRI and Cat scann results I can read myself and anything i do not understand,I know a person who does or I google it.

I agree we should not have to ask,we should be given a folder with all results as they come in,I have made my own,in ITU it came into its own,as doctors could see results from different dept with out having to go to the computers,even simply thing like information leaflets on condition,I became known as the lady with the file.

My beef is when something unusual eg:bone marrow taken as only way to know how Myeloma is progressing——-they have told us this,but not why????
and trying to find some information is hard.
regards Eve

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