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Post by trishbrazil » 29 Oct 2009 19:52

My husband has MDS and we would like him to be referred to Kings College Hospital because it is a centre of excellence. We mentioned this to the consultant's team member yesterday, but he didn't think it was necessary. We would like to know more about available drugs and the severity of his MDS. The doctor we saw yesterday said that a drug might be considered if he was having too many transfusions, because it would be cheaper. He has had 3 transfusions in the last 7 weeks.I know that we are waiting for NICE to make their minds up about a drug used in Europe since 2004.
Does your GP make this kind of referral or is it the hospital consultant you are seeing?
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Joined: 20 Nov 2008 14:05

Re: referral

Post by sophie » 30 Oct 2009 11:01

Dear Trish,I would be happy to help with your questions, but please contact me directly - unless you just wish to hear from other patients on the subject you raised.
If you contact me I can also send you a booklet on MDS, which will answer your questions regarding severity and available drugs.
It is available online as a link on this discussion Forum - Under Useful Links - Patient Handbook.
Alternatively check the main website - Links page - MDS Foundation - Patient Handbook - here is the direct link to it:

And of course I am always available to talk you through any of these details if you wish to call me.
I will always call you back so you don't incur telephone charges.

Both GP or consultants can refer to Centres of Excellence.

I look forward to hear from you Trish.

Note for everybody:
If you wish to exchange experiences with other patients - please kindly leave a message in "Contact requests" or "Comments and Issues about MDS".
If you have a request for assistance - please contact me directly, as I am unable to read forum messages regularly - this online forum is purely a platform for exchange between patients.
We also very much welcome suggestions for improvements to this website and discussion forum.

Thank you for your cooperation and understanding.

EU Patient Liaison
020 7733 7558
Sophie - Patient Liaison
For any queries:
Call 0207 733 7558

Please do not send me PM messages on this forum - I do not check it often.
This forum is purely for patient to patient communications. Thanks for your help.
Posts: 19
Joined: 31 Mar 2009 15:41

Re: referral

Post by whiskers » 30 Oct 2009 17:28

Hi Trish
With regards to your question concerning referral to King's College team. There are a lot of articles within the MDS Patient Forum pages, but at present it is not easy to navigate around without opening lots of different headings and subjects. But you may get some ideas if you open up the pages as follows:- 1) Open MDS Patient Support. 2) then open (article headed----Comments and Issues about MDS. 3) Open sub-article ----- Is there an MDS Specialist out there? Here you will be able to read a number of messages/replies concerning the referral question. I always believe in pushing both the current consultant at the local hospital and your GP as well, as it is your right as a patient to have a second opinion and to be referred to a Centre of Excellence if you have a serious illness. So have a read of the articles and insist that you are referred, it is your right!

GoOd luck and keep the members on the Forum informed, there are enough people here who have all kinds of experience with MDS and can give you advice from their long experiences on all matter of things. Do not worry, just keep in touch and ask anything you are not sure of.

Best wishes Whiskers (John)
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