Moderator: Steering Committee
Following my original post, I thought I would relay some responses recvd to date from patients and clinicians. So here goes in no particular order :
Every individual is different post a diagnosis. Some patients want to know every thing others nothing.
At best (Jayne's experience) there is plenty of information, with leaflets, handbook, relevant signposting from health care professionals from the GP through to the Consultant.
At worst zero marketing material or signposting to relevant support groups.
Hospital red tape regarding display boards /competition to display literature in busy multi disciplined clinics. Often a lack of space.
Consultants concerned that patients are not bombarded with too much info.
Not every patient has access to a computer. So the availability of literature important, to those that want it.
A willingness by medical representatives to help as they are visiting hospitals weekly.
Information leaflets need to be reprinted and redistributed, in certain areas.
Personal stories, written by professional journalists are important and help to raise the profile of MDS.
Feedback very useful for the Committee. Please continue to post comments.
Footage exists of interviews with Consultants talking about MDS (Kings) - currently being assessed to see if any of this could be useful for this site.
MDS UK - 2nd newsletter should be out in July.
Improvements to web taking place.
More people to use the forum and post replies. (A personal apology to Jayne - I missed your post, hopefully if you read the Southborough School of Dance Charity Show 9th July, you will understand why.
Spread the word about MDS to help raise public awareness and support.
I know I must be dense but I do find it very difficult to use, Its more by luck than judgement I find my replies maybe it it will all become clear as I use it
Keep up the good work
Thanks for your response. I looked quickly and thought, that's strange, I am sure I posted a response to Jayne. Then I noticed page 2.
Have a good day.
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