New suggestions for website?

A place to advertise your regional meetings, get togethers, formal or informal - so that others can find you - and you can post updates.

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sophie
Posts: 249
Joined: 20 Nov 2008 14:05
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New suggestions for website?

Postby sophie » 20 Oct 2015 18:34

As you are all hopefully answering the questions from our committee, please feel free to also list your suggestions in a reply to this message.
Let us know what you think is missing - or what we need to change.

Please do it in order of priority - as Urgent, or Nice to have.
As you know, time is the one really crucial thing - so anything we invest time in, means time taken away from some other service we provide to our members.

Please use these bullet points to reply.
Thank you.

Suggested changes for the MDS UK website

Urgent
1.
2.
3.

Nice to have
4.
5.
6.

Extra comments:
Sophie - Patient Liaison
For any queries:
Call 0207 733 7558
Email mds-uk@mds-foundation.org

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.
chris
Posts: 577
Joined: 01 Dec 2009 21:52
Location: Essex
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Re: New suggestions for website?

Postby chris » 21 Oct 2015 15:49

HI Sophie/ Web people!

People are saying that they cannot vote in the poll I set up - it just shows the results? Any ideas? Some people have voted. Presume you are locked out once you have voted but not sure why first visit would show results only and not voting buttons?

best wishes

Chris
Chris. (F) Age 67 (2017). MDS diagnosed in 2008. Sub-type CMML-1 but with anomalies! Normal-ish red cells, low white cells and platelets, slightly raised monocytes. Enlarged spleen. No current treatment - active monitoring 3-
monthly.SE Essex
GeoffC
Posts: 8
Joined: 25 Nov 2014 20:49
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Re: New suggestions for website?

Postby GeoffC » 26 Oct 2015 17:18

Hi Sophie

Just one suggestion from me, a nice to have really.

A section on the home page with links to newly published material elsewhere on the site.
I know there is a latest news section, but that doesn't cover for example updated "patient stories".

Other than that I'm happy with the site, glad I found it soon after being diagnosed.
Geoff C. Age 61. MDS diagnosed June 2013. Type - RCMD with del 20q. Red cells just below normal range, low white cells and platelets. No current treatment - active monitoring every 4 weeks. Lancashire.
“I’m not living with MDS, MDS is living with me!”
meerkat
Posts: 15
Joined: 09 May 2009 13:41
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Re: New suggestions for website?

Postby meerkat » 26 Oct 2015 18:59

Hello
Thank you for your efforts to review the website and its accessibility. From my perspective I was diagnosed with 5Q- MDS in 2007. I found the site informative and other peoples experiences were helpful and in many cases inspiring.

Unfortunately my MDS transformed to AML earlier this year. Suddenly I became an 'ex MDS' patient and the website became less relevant, as my focus changed to other matters.

As I'm sure a number of people with MDS may follow a similar pathway, then my suggestion would be to have some links to other websites, like the Anthony Nolan Trust or Leukaemia and Lymphoma Research.

Thank you and hope everyone's health remains stable.

Meerkat
MDS diagnosed 2007 and transformed to AML in April 2015
christina
Posts: 67
Joined: 07 Mar 2013 11:22
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Re: New suggestions for website?

Postby christina » 30 Oct 2015 17:40

Have just managed to log in after many months, so just testing this Christina
sophie
Posts: 249
Joined: 20 Nov 2008 14:05
Contact:

Re: New suggestions for website?

Postby sophie » 11 Nov 2015 12:04

meerkat wrote:Hello
Thank you for your efforts to review the website and its accessibility. From my perspective I was diagnosed with 5Q- MDS in 2007. I found the site informative and other peoples experiences were helpful and in many cases inspiring.

Unfortunately my MDS transformed to AML earlier this year. Suddenly I became an 'ex MDS' patient and the website became less relevant, as my focus changed to other matters.

As I'm sure a number of people with MDS may follow a similar pathway, then my suggestion would be to have some links to other websites, like the Anthony Nolan Trust or Leukaemia and Lymphoma Research.

Thank you and hope everyone's health remains stable.

Meerkat
MDS diagnosed 2007 and transformed to AML in April 2015


Hello Meerkat - please do not feel you necessarily have to leave our MDS website or forum because you are ex-MDS. We have been thinking to add some more information about AML, as indeed some patients do progress to leukaemia. Some of the treatments for MDS are also used in AML - so there is an overlap. Especially with regards to new trials coming up.

As for links to Leukaemia Care, Bloodwise (ex LLR), Anthony Nolan and Delete Blood Cancer, they are all listed on our Links page on the website, together with other helpful pages:
http://www.mdspatientsupport.org.uk/what-is-mds/useful-links/
If you have other links you think we should add, please do list them on this forum - so I can add them to the webpage.

Thank you so much for taking the time to reply - this is truly helpful to us.
The feedback of all our users is crucial to help us improve.

Warmest regards,
Sophie - Patient Liaison
For any queries:
Call 0207 733 7558
Email mds-uk@mds-foundation.org

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.
sophie
Posts: 249
Joined: 20 Nov 2008 14:05
Contact:

Re: New suggestions for website?

Postby sophie » 11 Nov 2015 12:10

GeoffC wrote:Hi Sophie

Just one suggestion from me, a nice to have really.

A section on the home page with links to newly published material elsewhere on the site.
I know there is a latest news section, but that doesn't cover for example updated "patient stories".

Other than that I'm happy with the site, glad I found it soon after being diagnosed.


Dear Geoff,
many thanks for your comments.
We'll see if we can add a feature on our website regarding any updates we make to various pages.
Not promising anything - but we will try. Our trusted webdesigners may have a solution to this :ugeek: :idea:

Thanks so much for following the progress of our website - and so glad you find it helpful!
Sophie - Patient Liaison
For any queries:
Call 0207 733 7558
Email mds-uk@mds-foundation.org

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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