[DaiCroParticipant]

Thank you all, especially Eve for getting the ball rolling and keeping it going. 🙂

You have certainly given me food for thought and I shall re-read all your comments, suggestions, opinions and experiences. From what I can tell from Craig's original post and the agenda of the conference he/they want to know how their work can be of help to us as individuals and the individualisation of treatment from the work they carry out on behalf of the hospitals. They want this paraphrased into a short report based on the patient's perspective. I believe I can put something together based on this thread and other POV and arguments put forward on the forum during this past year.

For me the biggest problem lies in us knowing exactly what they do, what they can do in the future and what influence they carry in terms of offering services and procedures that help us maximise individualisation of treatment in the short and long term futures.

I imagine I will put my short perspective together on Tuesday 8th of November… so please keep all contributions coming until Tuesday am. 😎

Dai.

[eveParticipant]

Hi Dai
IT looks if Craig is the man that gets bits of my husbands body:-/more than I get at the moment LOL.

On a serious note I got the impression,that bone marrow bloods and urine go to Birmingham,which does the testing on Mm samples could be wrong!!!
If you want to speak to him look at third posting down on old correspondence will give you qualifications and tell you were he is in Birmingham,which in turn you should be able to phone him at work.

If I think of anything before the 8 I will let you know the posting by Ellen was interesting,have you put any questions to Ellen.? love Eve

[GillParticipant]

I would be interested to know why treatment varies so much not only from one area of the country to another but from person to person.

Is it because mm is such an enigma of an illness and so individual or is that the medical profession cannot agree how to treat mm? Or, more worringly, is it because of the cost.

I know that Stephen's second SCT was around £40,000.

All the best for the 9th

much love from Gill xx

[eveParticipant]

Hi Jo
Sorry for not replying before,been a bit busy ,with trying to get soft furnishings as decorating finished,only trouble is shows up rest of it:-P

I would like a copy,thought they might put something on here about it,Debs went but she sounds very busy.It would be a GOOD idea if Myeloma UK did videos of INFO days,for people like us who live so far way,its not just the travelling its getting across London,plus the fact that Slim cannot do the length of time required with out a rest.

Slims doing much better only problem being when he feels good,he does far to much,He has gone from 91/2 stone to 11.That in its self is good.Turn my back for 1 minute and find he,s doing to much,so hard for him,he says he feels so useless.
Chemo brain,has a lot to answer for,memory has gone to pieces,very hard for him,makes the best of it,but He knows it is effecting his memory,I just try to make light of it,tell him it will get better,He has always been a man who loves crosswords, telegraph gone now does mail easier.

We wait to see what next week bring,we both have appointments on Monday bloods for Slim. on Tuesday for cycle 5 Velcade and Zometa,then 2 trips on Friday for bloods and Velcade,and may be we might get an appointment to see Consultant to find out results.If we do that,s 6 appointments in a week with mine as well.Have a talk about the cd if you manage to get copy.Love Eve

PS dog is a he Oscar,he is a cairn terrier,but he is are Battersea Brat,a lovely rescue dog ,had him for 10 years now.

[eveParticipant]

Hi Sue
Had to look up fish genetic testing,I actually thought this was being done in this country,as part of trials but not individually ,would be interested to know more about it,do you have much info on it? Eve

[PerkymiteParticipant]

I think Helen's interesting point that the Blood Test "belongs" to the Doctor is where we are wrong.

All information regarding a patient should "belong" to the patient. The Hospitals and Surgeries have it and control access to it but the information should be the patients and if the patient wants a copy of it, it should be freely available.

I know you can get access to your records from the Doctor?s surgery, for a fee, this is not the same.

Kindest regards ? Vasbyte

David

[eveParticipant]

Hi David
Can you just visualise the file that belongs to you.
The consultant reads it
His secretary can read it because all your results go through her
clerks can also read it,
every department that deals with individual parts of it can read that individual part.
when you go into hospital any nurse,o/t physio,doctor has access to your file its left on ward,the only person not allowed to look at it is YOU.
Even the receptionist can see when you are attending hospital,the name goes in and joe bloggs,comes up.

ethically this should not be done,i accept they have to have access to run the departments,but were does the patient come in to this equation.
Some times I feel like taking a pound out of my pocket,because I have asked for some results,and have not received them,and feel like saying to them there,s a pound if your worried about the cost of paper.
As you have guessed,it,s my bee in my bonnet,I once looked in Slims file in the hospital to find out the name of a doctor,because the information i received from a nurse was wrong,when I asked for the doctor,s name she said she did not know,but all she had to do is ring down and ask for consultants registrar name.I was informed the file was private,so I asked how come everybody else looks at it,but not the patient,she hid behind the dater protection act.
I suppose we can blame the government,does animal farm spring to mind.Eve

Does anyone know the shelve life of VELCADE???????

Eve

[MinParticipant]

We were told that the vecade is made up specifically for each patient and that the shelf life was only a few hours so once it came up on to the ward there could not. Be any delay.
The data protection act is to do with information kept on computers not necessarily paper records
the data protection act says if information is held on computer about YOU you are entitled to see it in order to confirm the data is correct.
This is not necessarily the case with regards paper records,
In the police force, if a criminal had a record he was entitled for a fee to see what information was held.
If a witness made a statement which included there name and address as it was a paper document the defendant could see the statement
But not the details of the name and address. Hope this helps to put things into some kind of order. You can apply for a full copy of slims medical record at fee and they have to get you a copy. But some times too much information is not good. Or accurate. My daughter asked the head of department before she went on holiday if it was safe for her to go and he said yes her dad was tuff old boot and would probably live for a further 12months but he was wrong.
Medicine is not an exact science as we all know and I think we expect too much when you live on a tightrope.
Love Min

[DaiCroParticipant]

I will make the decision tomorrow (or rather my GP will) but my attendance is in doubt because my chest infection is hanging on after three weeks of coughing and hacking. My GP gave me anti-biotics 3 weeks ago which were superseded at the end of that week by the hospital medics with two lots of 7 day anti-b's… 9 days later and I am still coughing up gunge and don't feel up to going to the local shops, never mind a conference in Birmingham.

As I say I am going to see my GP tomorrow and I'll be guided by him… if its a no I'll email Craig tomorrow… a pity because I've been looking forward to this for quite a time – I'd be more understanding if it was treatment or MM related but I went into remission on October 3rd and I've been down with this infection ever since.:-(

Dai.

[HelenParticipant]

Hard luck Dai hope you can shake it off soon, must be miserable for you.
Helen

[GillParticipant]

I am sorry you are feeling so rough Dai. The last thing you need is to put yourself in the middle of a crowd of people.

There will be other conferences just concentrate on getting well.

Love from Gill xxx

[eveParticipant]

Hi Min
Thank you for your reply,I must admit thought the DPA applied to paper work work as well as computer information.
What I was trying to emphasise was every one has the ability to know more about Slims illness than himself.
(As for to much information is not good or accurate) Well I would have to disagree,I think if information was more forth coming,from doctors or scientist we would be better informed and have better knowledge of treatment and expectations of this illness.

Infections and DVT ,can be prevented if caught early,I know we cannot wrap patients in cotton wool,but we can be made aware of early symptoms.In my case I should have made sure that Slim was seen to properly on Easter Saturday when he was discharged,but because lack of knowledge and having the attitude doctor knows best.It nearly cost Slim his life,and he was in no condition to help himself.

Dai I am sorry to hear you are ill,please look after yourself first and fore most,May be you could do a speech that Craig could read out,or anyone looking in,could step into the breach.
Is there a local MM support unit in your area??

I had my own experience of care at the same hospital as Slim yesterday.
I had minor surgery in the day unit,very impressed.I was dreading the conveyor belt experience,I was amazed at the speed and efficiency.Names are called space allocated,informed of procedure,see doctor and anaethetist(spelling?) ,procedure completed recovery time then out.the whole unit was very impressive,and staff worked as a team,we might have looked like drones but into days world,were efficiency money and care are important,they did an excellent job.

Best wishers to everyone Eve

[RozParticipant]

Hi Dai,
I don't know if you remember me but I belonged to many disability groups and still do when I'm up to it again.

I don't want to sound rude but your health comes first!! Also what you are trying to do and show is what we the disabled have been saying for years everyone is different but we get labeled as the same. Money and post codes come into alot of health decisions. Michael got treated better at Sheffield than at Doncaster. We got told by them at Sheffield if a BMT was done and you were in hospital or getting treatment it would be up on the computer in so many hours. But if he had it at a day appointment and back home without treatment, then appointments would be booked to give out results. Thats another cost issue.
I havent been keeping tabs on your posts so I will shut up now but what I'm trying to say is all the best for what your trying to do but as we the disabled have found out it takes more than 1 person or a few people for change you need many to get A VOICE.
Get well first l
Love Roz

[jmsmythParticipant]

Dai sorry to read that you are not feeling well. Please take care of yourself, that's most important. Get well soon.
Love Jean xx

[ellenModerator]

Thank you for your questions Eve.

It may be best to contact either myself or Maggie directly. Email to askthenurse@myeloma.org.uk or on the freephone Myeloma Infoline on 0800 980 3332. We will do our best to answer your questions in order to clarify things for you.

Kind regards

Ellen

[Author]

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