Moderator: Steering Committee
- Posts: 249
- Joined: 20 Nov 2008 14:05
Welcome to this patient to patient chat forum which is run by MDS UK Patient Support Group.
If you require specific assistance, or information for yourself or a MDS patient you are helping/caring for, please contact MDS UK first so we can provide the specific help you need.
Once we have your full contact details, we will also post you an information pack and add you to our regular distribution list as a registered member of the Support Group.
The chat forum is anonymous - so we do need the following details to send you an information pack:
New patients and/or relatives are encouraged to always contact our main office to register with us:
http://www.mdspatientsupport.org.uk/abo ... relatives/
or - for specific queries:
please email: firstname.lastname@example.org
or call Tel: 0207 733 7558
By calling us - you will have the opportunity to ask any questions before you post any messages.
It means we can help resolve any immediate issues you may have - and makes us aware of problems nationwide - which we can then address on your behalf.
WE ENCOURAGE ALL NEW CHAT FORUM USERS TO CONTACT OUR MAIN OFFICE - TO RECEIVE AN INFORMATION PACK - AND TO HELP RESOLVE ANY IMMEDIATE ISSUES.
SPECIFIC ISSUES AND ASSISTANCE WE CAN HELP WITH ARE:
FURTHER ADVICE OR EXPLANATION REGARDING YOUR MDS DIAGNOSIS OR SUB-TYPE OF MDS
REFERRAL TO A MDS CENTRE OF EXCELLENCE
ACCESS TO TREATMENT AND REGIONAL DIFFERENCES
ACCESS TO SPECIALIST NURSE OR COUNSELING
IRON OVERLOAD OR CHELATION INFORMATION
and a few more
To keep our message forum organised and pleasant,
we kindly ask all users to observe the points listed below.
Please read this before you post anything
This will save time and effort for users and administrators - and will keep this forum user-friendly for everyone.
Thank you - and we hope you will find this forum helpful and reassuring.
NEW REGISTRATIONS (and SPAM issues)
To add to a discussion or to start a new topic you need to be a registered member.
All email addresses are verified by a confirmatory email sent to the email address that you enter when registering - you must click the link given in the email for your user login to be activated.
Due to regular spam/fake registrations, all new registrations to this online forum have to be approved individually by a staff member.
This means it may take 1 to 2 days to be approved during weekdays - or the following Monday if you register on a weekend.
Apologies for that - but this is the only way to keep our forum spam free.
Your email address is carefully protected and we do not release email addresses to anyone - And we do not SPAM!
Confidentiality and safety for you
Please do not post your contact details (email address, telephone numbers, address etc) when posting content to this site as this can be viewed by the public at large.
Information in messages sent using the PM (Private Message) button is more secure and should be used if you are exchanging contact details with another member.
To report any abuse or raise any other concerns about this forum please contact email@example.com.
Which folder to post in???
Please, please, please try to find a relevant place under an existing heading/folder to write any new posts. This will help keep the forum more understandable - and it will be easier for everyone to find what they need.
What to post?
PLEASE BE AWARE THAT THIS FORUM IS NOT MONITORED FOR CLINICAL ACCURACY!
THE FORUM IS A "PATIENT LED" TOOL AND IS INTENDED AS A PLATFORM FOR EXCHANGE OF SUPPORT BETWEEN PATIENTS, CARERS AND OTHERS AFFECTED BY MDS.
And - please check our website first - which contains a lot of information - which may answer some of your questions.
It then will be much easier to chat to others on the forum.
We try not to get involved with the messages on this forum - as it is there for patient to patient support only.
Please do not send us private messages via this online forum - but contact us directly on our main email address.
Lastly - if you have benefited from contact to MDS UK - please do tell your haematologist and nurse specialist.
Ask them to always hand out our leaflets to new patients - on the day of diagnosis - this will help all future patients and families.
Thank you for reading
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.
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