Return to HDA home page HDA Message Board
HDA About the HDA HDA What is HD HDA Juvenile HD HDA Children & Young People HDA Professionals HDA Resources HDA Research HDA HDA News HDA Events HDA Contact the HDA HDA Home Page

Outside of office hours if you need someone to speak to you can phone the Samaritans on 116 123


Go Back   HDA Message Board > Message Board Categories > General HD topics

General HD topics Open forum for all other issues concerning Huntington’s disease

Reply
 
Thread Tools Display Modes
Old 24-08-17, 10:59 PM   #11
Crystal
Approved Member
 
Join Date: Sep 2015
Posts: 212
Default Re: Moving from Message Board

Quote:
Originally Posted by shiraz View Post
So....is the message board here just going to vanish? Or is it that if you want you can also go on HealthUnlocked? Having had a quick look at it and the page after page of alphabetically listed conditions....I don't like the look of it at all. It's like a massive machine that you'll just get lost in and boy does it look dodgy to an old dinosaur like me. Not happy at all..........
From one old dinosaur to another!.........I'm always advocating more awareness, change etc etc.....blah, blah, blah! Now, not sure if I feel like 'migrating' anywhere .... unless it's to somewhere where the sun is shining, life is good, worries drift away and contentment reigns! Dream on......so feeling the same Shiraz!
Crystal is offline   Reply With Quote
Old 25-08-17, 01:14 AM   #12
shiraz
Approved Member
 
shiraz's Avatar
 
Join Date: Oct 2014
Location: Merseyside
Posts: 873
Default Re: Moving from Message Board

I've just clicked on the link....typed in Huntingtons Disease and an odd post came up...silly more than anything followed by monkeybusiness's answer and browse....so all and sundry can look in outta boredom/mischief/etc and the page contained lists of stuff which are nowt to do with hd.....it's all so "showbiz" and confusing and will end up a load of drivel that no one can follow. There doesn't seem to be specific areas for posts, just one long bang it on, gets lost, bang it on gets lost - it is just crazy to me. What about PM's? There are folks on here who only communicate via PM's for privacy/the hd-hydes holding them hostage almost - they are just gonna be cast asunder?? Yet again....who cares - head office don't really seem to care obviously Empower/encourage/community/friendship/improvement - it's all just jargon.....I am obviously in the 25% who think what a load of ballcocks....Bye Everyone...and good luck in the brave new world coz the future is now....bleaker.
shiraz is offline   Reply With Quote
Old 25-08-17, 09:02 AM   #13
Moderator
Administrator
Site Admin
 
Join Date: Oct 2016
Posts: 6
Default Re: Moving from Message Board

Quote:
Originally Posted by shiraz View Post
I've just clicked on the link....typed in Huntingtons Disease and an odd post came up...silly more than anything followed by monkeybusiness's answer and browse....so all and sundry can look in outta boredom/mischief/etc and the page contained lists of stuff which are nowt to do with hd.....it's all so "showbiz" and confusing and will end up a load of drivel that no one can follow. There doesn't seem to be specific areas for posts, just one long bang it on, gets lost, bang it on gets lost - it is just crazy to me. What about PM's? There are folks on here who only communicate via PM's for privacy/the hd-hydes holding them hostage almost - they are just gonna be cast asunder?? Yet again....who cares - head office don't really seem to care obviously Empower/encourage/community/friendship/improvement - it's all just jargon.....I am obviously in the 25% who think what a load of ballcocks....Bye Everyone...and good luck in the brave new world coz the future is now....bleaker.
There is the option to private message on HU:

1. Click on your username on the top menu and select "Messages". Alternatively, click here to access your private message page
2. Click the "Compose" button in the top right-hand corner of the page
3. In the "Add recipients" box, type in the username of the member you want to message and select it from the drop-down menu. You can add up to 20 recipients for each message
4. Type in your message!
5. Once it is ready, click the “Send” button
__________________
To contact head office email info@hda.org.uk
Moderator is offline   Reply With Quote
Old 26-08-17, 12:57 AM   #14
frankie
Approved Member
 
Join Date: Nov 2006
Posts: 544
Default Re: Moving from Message Board

Quote:
Originally Posted by Moderator View Post
Will you be part of a new online community for Huntington’s disease?
Do you want to ask questions, get answers and connect with other people online?
Later this year, we’ll be replacing our current message board with an exciting new social network for the Huntington’s disease community.
This new online community is your community. We really hope that you’ll want to get involved. A big part of the support available to people affected by Huntington’s disease is the encouragement, friendship and advice that you share online.
Your new online community will live on the HealthUnlocked website. https://healthunlocked.com
HealthUnlocked is the world’s largest social network for health. The site is completely free to charities, users and visitors. HealthUnlocked communities are designed to empower, engage and inform. 75% of people joining HealthUnlocked report increased confidence in managing their health – because of their online community.
Your HealthUnlocked pages will include new features, will be easier to navigate and more user-friendly. You’ll still be able to see previous posts from our current message board on HealthUnlocked.
Our online community has been growing for over ten years. We’re making this change based on feedback from current message board users.
We hope that you’ll want to be part of this next step and get involved in HealthUnlocked for Huntington’s disease.
We will be looking for volunteers to support the new community; people who feel they are able to spend time online, welcoming new people to the community and supporting them from their own experiences. If you would like to get involved please let us know.
We’ll be sharing more details about how to register as part of your HealthUnlocked community soon.

If you have any questions, please contact Bill.
bill.crowder@hda.org.uk
Well I don't use this MB anymore but it's a godsend for those seeking help , support and advice .
I'm part of Health unlocked for other health issues and it certainly hasn't got the same support and friendship that I found on here .
Personally I think the message board should stay with the HDA and there should have been voluntary moderators to assist and offer advice for those in need . We're dealing with Huntington's Disease , and not other chronic health conditions . The Parkinson's disease charity have a dedicated message board .
frankie is offline   Reply With Quote
Old 26-08-17, 01:06 AM   #15
shiraz
Approved Member
 
shiraz's Avatar
 
Join Date: Oct 2014
Location: Merseyside
Posts: 873
Default Re: Moving from Message Board

So....this MB will still remain? Therefore we at least have a choice? We will still be able to PM on here as per norm or do you just mean til Sept when this will vamoosh?? I keep having a looksie on this HU thing, which I have never ever seen advertised, would ever think of typing in to google...and it just seems like a massive organisation and you are just a tiny cog in the wheel of, a guinea pig infact coz everytime a health question bombards me...if I am turning up "desperate" do you honestly think I would feel safe? It's bad enough on here with spiders and such....but it is a community not a flaming galaxy. I just feel like this has been done without any regard whatsoever for those already on here and you have never, ever posted on here to ask our opinions which seems strange, insensitive, uncaring, unprofessional and downright rude. You make us all seem like such a burden. I wonder how those who post on here who have hd are meant to address this? do you care at all - have you even thought of it? But you are still there saying fundraise and send the donations in so we can have another jolly and whizz off to see the Pope - then don't even mention it!! I don't think you've thought things through at all and when I turned up here...boy oh boy was it a godsend. Now? It's it's like just *** off. HU? Never.
shiraz is offline   Reply With Quote
Old 26-08-17, 01:47 PM   #16
Crystal
Approved Member
 
Join Date: Sep 2015
Posts: 212
Default Re: Moving from Message Board

Quote:
Originally Posted by shiraz View Post
So....this MB will still remain? Therefore we at least have a choice? We will still be able to PM on here as per norm or do you just mean til Sept when this will vamoosh?? I keep having a looksie on this HU thing, which I have never ever seen advertised, would ever think of typing in to google...and it just seems like a massive organisation and you are just a tiny cog in the wheel of, a guinea pig infact coz everytime a health question bombards me...if I am turning up "desperate" do you honestly think I would feel safe? It's bad enough on here with spiders and such....but it is a community not a flaming galaxy. I just feel like this has been done without any regard whatsoever for those already on here and you have never, ever posted on here to ask our opinions which seems strange, insensitive, uncaring, unprofessional and downright rude. You make us all seem like such a burden. I wonder how those who post on here who have hd are meant to address this? do you care at all - have you even thought of it? But you are still there saying fundraise and send the donations in so we can have another jolly and whizz off to see the Pope - then don't even mention it!! I don't think you've thought things through at all and when I turned up here...boy oh boy was it a godsend. Now? It's it's like just *** off. HU? Never.
I am interested in the comments made by 'Moderator ' when this change was announced which states ' we are making this change based on feedback from current message board user's.....!!? This message board has been a 'godsend'
to me also and whilst I appreciate and understand that changes were going to happen to the format of this message board..... this seems something else altogether! I too, keep checking the HU site........Sadly it won't be for me....already decided. Such a shame.
Crystal is offline   Reply With Quote
Old 26-08-17, 02:28 PM   #17
Trish
Approved Member
 
Trish's Avatar
 
Join Date: May 2010
Location: England
Posts: 2,316
Default Re: Moving from Message Board

Quote:
Originally Posted by shiraz View Post
So....this MB will still remain? Therefore we at least have a choice? We will still be able to PM on here as per norm or do you just mean til Sept when this will vamoosh??
I may be wrong, and I hope the Mod will correct me if I am not, but I got the impression from speaking to HDA that there won't be two Boards working in parallel so it will be HU or nothing. That makes it even more important that there is a proper migration of data from here into HU so that it is not all lost, and that there is proper navigation in place to make it easy to access the old messages. I can't see how PMs would migrate so it may be better to copy and paste what is in your messages if you want to keep anything just in case you can't get access one day.

I am currently opening up word docs and copying and pasting posts/Threads that I could not bear to lose (for example the Thread Another HD Angel. A thread here I announced Steve's death in Jan 2011 and had such lovely messages of support. I shouldn't need to do that but I don't trust the IT migration etc enough to feel comfortable that I could still access if the plug is pulled in here overnight as it were. Talking of which... where did you get the Sept date from?
__________________
I tried.
Trish is offline   Reply With Quote
Old 26-08-17, 02:40 PM   #18
Trish
Approved Member
 
Trish's Avatar
 
Join Date: May 2010
Location: England
Posts: 2,316
Default Re: Moving from Message Board

Quote:
Originally Posted by Crystal View Post
I am interested in the comments made by 'Moderator ' when this change was announced which states ' we are making this change based on feedback from current message board user's.....!!? This message board has been a 'godsend'
to me also and whilst I appreciate and understand that changes were going to happen to the format of this message board..... this seems something else altogether! I too, keep checking the HU site........Sadly it won't be for me....already decided. Such a shame.
Quote:
based on feedback from current message board user's
It was news to me too so I dunno who these 'current' users are who are supposed to have given feedback although I have now said I will contact Bill if I have any questions/comments re' HU.

I am considering whether I want to be one of the so called volunteers to help with whatever it is when HU Community goes live but until I know what it would actually involve I can't say if I am in or could commit time.

It would be lovely if this and the new HU site ran in parallel for a time to allow for user testing properly but I suspect it may be HU or nothing at some stage. I just hope, if that is the case, the front page or the MB button on here takes people automatically to it as it's not the most obvious of sites to navigate yourself into.
__________________
I tried.
Trish is offline   Reply With Quote
Old 27-08-17, 04:16 AM   #19
shiraz
Approved Member
 
shiraz's Avatar
 
Join Date: Oct 2014
Location: Merseyside
Posts: 873
Default Re: Moving from Message Board

Does DataProtection come into this at all...as in I frankly don't like the idea of all the posts I did when I was at my lowest now being transferred across to some mammoth A-Z search engine new site. No one's asked my permission....no one even posted on here saying what do you think of these plans....just bam we're closing down, moving, if you don't like it tough. Like Crystal HU ain't for me. A perfect example of how not to go about things.....
shiraz is offline   Reply With Quote
Old 27-08-17, 07:32 AM   #20
jacqueline
Approved Member
 
Join Date: Feb 2008
Posts: 43
Default Re: Moving from Message Board

Quote:
Originally Posted by frankie View Post
Well I don't use this MB anymore but it's a godsend for those seeking help , support and advice .
I'm part of Health unlocked for other health issues and it certainly hasn't got the same support and friendship that I found on here .
Personally I think the message board should stay with the HDA and there should have been voluntary moderators to assist and offer advice for those in need . We're dealing with Huntington's Disease , and not other chronic health conditions . The Parkinson's disease charity have a dedicated message board .
Frankie I totally agree with you,
I haven't used this message board for a long time. My faith in lots of things with the head office as gone. I am not even going to the AGM this time because of how I feel and that would have been out of the question at one time to mss the AGM. But nobody at the top is truly bothered. I have even spoken to the trustees about my lack of faith in the HDA but once again nobody seems bothered. So why make my life even more complicated by trying to get my feelings across to the uppers. I have enough on my plate with HD in my family and its effects.

When I joined in 2008 I was so truly desperate to receive any kind of " well mine doesnt look so bad now" feeling from the other members. I also didn't care who joined under a Non de Plume name because HD was new to me and my affected family was small and I wanted support by people who was going through the same thing and knew what I was talking about. I was so so truly desperate.

Now nearly 10 years later my affected family is massive and my grandchildren and other family members 10 years older and some don't want my feelings showing, or theirs to be honest on here.

Now I DO care very much who comes on here under a Non de Plume and wants to look at what is happening in my family because they just want to peep into my life and I would never know who they are. They could be my next door neighbours or my precious grandchildren who I would never want them to know how hurt I get by whats happening.

I don't feel that the HDA head office has ever been bothered about what happens on the this message board and we are just a bit of a nuisance to be honest. Plus its not because I havent tried to speak to Bill about how I feel about their non care about the Message Board because I truly have. But Bill can be like a politician and nod and shake his head in the right places.
The HDA head office truly don't know how we feel in the background because they never ask.
I haven't even looked at the HU and don't want to because like someone else has said, the message board long standing members should have been at least asked how we felt. But we on here wasn't even considered.
It seems to me just another way for the HDA to get this nuisance message board off their backs and pass it over.

PS, Bill told me it was a "peer to peer" message board so that even though the HDA moderate it (really) it is up to us to sort it.
If it is the "peer to peer "that Bill says then like Frankie says why cant it be moderated by people who are willing to help others by even just welcoming new comers etc etc.
jacqueline is offline   Reply With Quote
Reply

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off

Forum Jump


All times are GMT +1. The time now is 03:10 AM.


About the HDA Message Board

A UK-based forum for people whose lives are affected by Huntington's disease and wish to share their experiences with others. Moderated by SHDAs from the HDA, a UK registered charity.

Please Remember

The HDA Message Board is not a substitute for professional advice. Consult a relevant professional before making decisions that could affect you or others.

Donate to HDA


Powered by vBulletin® Version 3.8.5
Copyright ©2000 - 2017, Jelsoft Enterprises Ltd.
Registered Charity No. 296453. Website Content © HDA 2010

HDA