Your comments on our website
Moderator: Steering Committee
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Your comments on our website
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
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.Trustee,Patient Support Ambassador (Essex) (F) Age 73 (2023)).Diagnosed in 2008. CMML-1. Normal red cells, low white cells & platelets, slightly raised monocytes. Enlarged spleen. Not had any treatment - active monitoring 6-monthly.
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Re: Your comments on our website
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
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
Queries:
Call 0207 733 7558
Email info@mdspatientsupport.org.uk
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.
Queries:
Call 0207 733 7558
Email info@mdspatientsupport.org.uk
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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Re: Your comments on our website
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.
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Re: Your comments on our website
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.
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Re: Your comments on our website
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
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.Trustee,Patient Support Ambassador (Essex) (F) Age 73 (2023)).Diagnosed in 2008. CMML-1. Normal red cells, low white cells & platelets, slightly raised monocytes. Enlarged spleen. Not had any treatment - active monitoring 6-monthly.
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Re: Your comments on our website
Hi Chris,
I am also finding it hard to be able to comment. All I get are the results so far.
Joanna
I am also finding it hard to be able to comment. All I get are the results so far.
Joanna
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Re: Your comments on our website
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
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.Trustee,Patient Support Ambassador (Essex) (F) Age 73 (2023)).Diagnosed in 2008. CMML-1. Normal red cells, low white cells & platelets, slightly raised monocytes. Enlarged spleen. Not had any treatment - active monitoring 6-monthly.
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Re: Your comments on our website
Hi Sophie and Chris, me too I voted and that was it could not do anything els.
Winnie
Winnie
Red widow aged 70. MDS -20Q+t(1,9) diagnosed June 2013 on watch and wait. Lives in Somerset
Life is for living
Life is for living
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Re: Your comments on our website
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
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.Trustee,Patient Support Ambassador (Essex) (F) Age 73 (2023)).Diagnosed in 2008. CMML-1. Normal red cells, low white cells & platelets, slightly raised monocytes. Enlarged spleen. Not had any treatment - active monitoring 6-monthly.
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Re: Your comments on our website
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
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
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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