Your comments on our website

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

Moderator: Steering Committee

Your opinion on the website. Choose from below.

The website currently meets my needs.
16
14%
I find it hard to navigate my way around the site.
7
6%
I find it straightforward to navigate my way around the site.
15
14%
The design of the site puts me off using it.
3
3%
I am happy with the current design
13
12%
I can usually find the information I need from the site
16
14%
The Home page is a good overview of latest news
14
13%
The Home Page is too busy and confusing
5
5%
I use the website on a regular basis
12
11%
I rarely use the website
10
9%
 
Total votes: 111
chris
Posts: 577
Joined: 01 Dec 2009 21:52
Location: Essex
Contact:

Your comments on our website

Postby chris » 17 Oct 2015 13:24

Dear All

The MDS Committee is interested in your opinion of our whole website (i.e. not just the Forum). Do you find it easy to get the information you need? Is the layout suitable for your needs? What don't you like about it? I've done a little poll which should only take a few minutes to complete and we would be glad of lots of your comments, please!

If you would like to make more detailed comments, please contact Sophie.

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

Re: Your comments on our website

Postby sophie » 20 Oct 2015 19:42

Dear all,
we can see that 166 users have looked at the poll - but only 36 have participated so far. :?
If there is a technical problem - please do let us know.

We really do want your views on this topic to decide if it needs us to invest time and money to change it.

We'd rather spend these resources on other support aspects if the website is serving its purpose sufficiently.
Thank you :)
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.
Cheryl C
Posts: 9
Joined: 22 Oct 2013 12:47
Contact:

Re: Your comments on our website

Postby Cheryl C » 21 Oct 2015 01:20

How to I complete the survey? I just get results but nowhere to fill in the survey. Thanks.
Diagnosed with MDS RAEB2 Sep 2011. Now MDS RCMD + Hypogammaglobulinaemia. Main problem: WCC - neutrophils. In Watch and Wait mode.
Cheryl C
Posts: 9
Joined: 22 Oct 2013 12:47
Contact:

Re: Your comments on our website

Postby Cheryl C » 21 Oct 2015 01:24

I access US Marrowforums daily. I'm in Australia. I find Marrowforums more user friendly. I think there are just so many more members that there is a wider range of people posting. Also it's easy to follow a particular person and to "converse" with them. Have you thought of linking with them somehow?
Diagnosed with MDS RAEB2 Sep 2011. Now MDS RCMD + Hypogammaglobulinaemia. Main problem: WCC - neutrophils. In Watch and Wait mode.
chris
Posts: 577
Joined: 01 Dec 2009 21:52
Location: Essex
Contact:

Re: Your comments on our website

Postby chris » 21 Oct 2015 14:45

Hi Cheryl

Sorry if you have had problems accessing the poll. I can only think that it only lets you in once and after that it just shows the results. Having already voted under my own login I can't now see the poll! Am asking Sophie if she knows why this happened as other people seem to have been able to vote?

Thank you for your comments though. It is possible to converse with one person on the Say Hello topic on this Forum and you can use their Username to find all their posts. We can take a look at Marrowforums too - though you're right that being based in the USA there are so many more MDS patients that clearly there is a bigger "audience"!

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
JoannaM
Posts: 8
Joined: 19 Feb 2014 16:35
Contact:

Re: Your comments on our website

Postby JoannaM » 21 Oct 2015 15:44

Hi Chris,
I am also finding it hard to be able to comment. All I get are the results so far.
Joanna
chris
Posts: 577
Joined: 01 Dec 2009 21:52
Location: Essex
Contact:

Re: Your comments on our website

Postby chris » 21 Oct 2015 15:46

Hi Joanne

Oh dear. Sorry. I'll try to find out why this is happening! Sophie may be able to ask web people.

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
red
Posts: 67
Joined: 22 May 2013 14:25
Contact:

Re: Your comments on our website

Postby red » 21 Oct 2015 17:54

Hi Sophie and Chris, me too I voted and that was it could not do anything els.
Winnie
Red widow aged 70. MDS -20Q+t(1,9) diagnosed June 2013 on watch and wait. Lives in Somerset

Life is for living
chris
Posts: 577
Joined: 01 Dec 2009 21:52
Location: Essex
Contact:

Re: Your comments on our website

Postby chris » 21 Oct 2015 18:11

Hi Winnie

If you managed to vote, that was all we needed. So well done!! It looks like a few more people have succeeded. If you wanted to leave any comments Sophie has posted some written general survey questions on another post so you could reply to that too if you can?

Thanks again

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
Kes
Posts: 11
Joined: 14 Jul 2012 13:05
Contact:

Re: Your comments on our website

Postby Kes » 21 Oct 2015 19:47

Hi

I couldn't vote when I clicked on the link in the email. However once I logged in and then clicked on the link it worked. I hope that helps some of you participate.

Cheers

Kes
[color=#0000FF]I was diagnosed initially with RA. Now I'm told it RCMD with hypocellular marrow. It seems I also have a big autoimmune component to my MDS with lots of accompanied joint pain[/color]

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