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

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Old 31-08-17, 08:29 AM   #41
Cupcake
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Default Re: Moving from Message Board

I fully agree with you Crystal, having HD in the family is a very delicate, sensitive issue, unless you have lived with the trauma and experience of it in your life, you really cannot comprehend how life is. There are many ups and downs, suffered by family members as well as HD positive people. Families have their rifts, because people hide from it, won't acknowledge and basically don't want the whole world to know their business.
The HDA as an organisation is from what I can see over the last 7 yrs, a charity that raises money for keeping the big bosses in their highly paid jobs!!!!!! I feel very bitter about the whole thing, as I cannot see where they think truly help families. The few support people get out a little in the community, but certainly Sue Hill was no support to me, when I needed her, there are people I know who are not getting much support either. I have raised this issue in the past. HD sadly is not getting the awareness it needs, and I get really cross when I read everything on the HDA page being "exciting". There is nothing exciting in the day to day lives of families living with HD!!!!!!!! And is not likely to get exciting now or in the future with this exciting new page, that they are trying to move everyone to, so that the whole world can see you despair 😩 on a down day. As long as the powers that be can sit in their ivory tower, get paid a large salary, go on a jolly to Rome, which was obviously funded by the HDA,(what a shame they did not give that opportunity to a paid trip for HD sufferers) and take all the glory at the AGM, they will never get in tune with the families that need their support so desperately, I think as some one else mentioned a Mon-Fri 9-5pm job, that you forget once you leave the office.

I raised money for them again this year, thinking well we need the awarensss, I will, but now that this valuable source is going, I think that will be the end for me. I would rather support the people who are doing something to raise awareness for HD like Hounds for Huntingtons and Thumbs Up for HD.

Watching this post to see, if they have a change of mind reading the concerns of people on here, or just bulldoze on with their plans.!!!!!!!!!!!!!!!

By the way Crystal hope you are doing ok. Xxxx
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Old 31-08-17, 10:15 AM   #42
jacqueline
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Default Re: Moving from Message Board

Quote:
Originally Posted by Cupcake View Post
Bill I have taken time to look at the new site you are promoting. I am not the worlds best when it comes to technology, and have found the site quite difficult to manoeuvre around. Maybe it will seem easier when it is up and running, but I fail to see how you will fit categories into it, to me it looks like it will just have the most recent post showing. I found it very frustrating trying to choose a user name, the ones I was selecting to start with were not valid, I wanted something I could remember easily, and not have to create yet another user ID? I really can't see the advantage of using that site, and it makes me wonder whether it is because you don't want to have to moderate this board?

Just feels to me it is something else head office don't want to be bothered with. The face book page is not used to its full advantage and Joe Bloggs can't add anything to it, without being checked out, I just wonder about it all really. Why can't the message board continue as it is?
OH for gods sake Bill stop hanging around in the shadows and at least put SOMETHING on here. You have never needed this message board as we have and you have no idea how desperate we are at times. JUST ANSWER SOMETHING.
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Old 31-08-17, 11:57 AM   #43
william
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Default Re: Moving from Message Board

Thank you to everyone for your feedback. I am sorry for the delay in responding. We understand the message board has been an important place for help and support and we wanted to make sure that continues as technology changes and people’s needs and expectations change too.
The decision to move to this more modern platform was based on feedback from users. Users have told us that the message board is clunky, out dated and difficult for new members to use. Indeed, people who have posted on this thread have said that they rarely post to the message board now.
HealthUnlocked is clearer and easier to use. It has more features that people will find helpful, and we hoped it would make it easier for users to get the help and support they need.
In response to your questions, here is some more information about how HealthUnlocked works:
Privacy: HealthUnlocked is an anonymous platform that allows users to connect with others who are living with similar conditions. Signing up to HealthUnlocked only requires an email address, username, and password. The username is the only thing displayed on the site. Email addresses are never shared with any third party without the explicit consent of the user.

Posts have an optional ‘locking’ feature which stops a person from reading the full post and from seeing the poster's username if they are not logged in and following that community. This is an extra layer of privacy in place to protect users who wish to only share their stories with members of their community.

Private messages: Private messages can be moved over from the existing message board to Health Unlocked. In the case that one user chooses to do this while another does not, the user who does not wish to do this will appear in the thread with an anonymous user name (ie. user_123).

Topic threads: Posts appear under topic threads in the same way they do on the current message board. This means that conversations continue to appear in the relevant topic areas, which are also tagged. Within topics, each post essentially becomes its own thread as replies are grouped under that post – this works like comments under a Facebook post where you have replies threaded under the post, as well as replies to replies threaded together.

First posts: Once signed up to the community, users can post right away.

Having listened your concerns, the message board will continue in its existing format. We would like to thank you for your comments and insight.
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Old 31-08-17, 12:38 PM   #44
jacqueline
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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?
We’re making this change based on feedback from current message board users.
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. ]
Bill it would be very interesting to know who these invisible "current message board" users are.
We have been offering support to you as volunteers for years and you have never taken us up on it.
But all of a sudden now that you want to ship us out you seem willing to ask for volunteers now. The HDA have made up their mind that we are going so stop pretending that you care.
Plus I have to add that there nothing even remotely exciting about having HD in a family.
This HU is about getter better. REALLY is someone with HD going to get better. It aint gonna happen is it.
Plus it is about the patient with HD being on HU. Not their carers.
Explanations would be good bill. Not ignoring us after putting this bomb shell on.
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Old 31-08-17, 04:40 PM   #45
william
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Default Re: Moving from Message Board

Quote:
Originally Posted by jacqueline View Post
Bill it would be very interesting to know who these invisible "current message board" users are.
We have been offering support to you as volunteers for years and you have never taken us up on it.
But all of a sudden now that you want to ship us out you seem willing to ask for volunteers now. The HDA have made up their mind that we are going so stop pretending that you care.
Plus I have to add that there nothing even remotely exciting about having HD in a family.
This HU is about getter better. REALLY is someone with HD going to get better. It aint gonna happen is it.
Plus it is about the patient with HD being on HU. Not their carers.
Explanations would be good bill. Not ignoring us after putting this bomb shell on.
Feedback from MB users said that the MB was clunky, difficult to navigate and difficult to search previous posts which is why we started to look at other options. The suggestion of creating more specific volunteer roles was to recognise the role established users play in giving and advice and welcoming people to the board.
We have said that the MB will continue.
No one is suggesting that having HD in the family is exciting and HU is for anyone living with HD which includes carers, it was recommended to us from several charities/supporters of other charities with similar conditions.
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Old 31-08-17, 08:07 PM   #46
Cupcake
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Default Re: Moving from Message Board

I think this is the text that suggested exciting.

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.

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 Health Unlocked.

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 Health Unlocked for Huntington’s disease.

We’ll be sharing more details about how to register as part of your Health Unlocked community soon.

If you have any questions, please contact Bill at bill.crowder@hda.org.uk or Ruth at ruth.abuzaid@hda.org.uk
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Old 31-08-17, 08:10 PM   #47
Cupcake
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Default Re: Moving from Message Board

Bill

If the message board is remaining, why can't the existing posts remain where they are?
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Old 31-08-17, 08:32 PM   #48
Trish
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Default Re: Moving from Message Board

Quote:
Originally Posted by Cupcake View Post
Bill

If the message board is remaining, why can't the existing posts remain where they are?
The way I read it is that the posts will be staying as they are and, in effect, the status quo applies.
__________________
I tried.
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Old 31-08-17, 10:17 PM   #49
jacqueline
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Default Re: Moving from Message Board

Quote:
Originally Posted by william View Post

Privacy: HealthUnlocked is an anonymous platform that allows users to connect with others who are living with similar conditions. Exactly the same as here then.Signing up to HealthUnlocked only requires an email address, username, and password. The username is the only thing displayed on the site. Email addresses are never shared with any third party without the explicit consent of the user. Again Exactly the same as here then

Posts have an optional ‘locking’ feature which stops a person from reading the full post and from seeing the poster's username if they are not logged in and following that community. This is an extra layer of privacy in place to protect users who wish to only share their stories with members of their community. Which is what this message board has needed and been asked about for a long time


Private messages: Private messages can be moved over from the existing message board to Health Unlocked. In the case that one user chooses to do this while another does not, the user who does not wish to do this will appear in the thread with an anonymous user name (ie. user_123). Have you used it Bill

Topic threads: Posts appear under topic threads in the same way they do on the current message board. This means that conversations continue to appear in the relevant topic areas, which are also tagged. Within topics, each post essentially becomes its own thread as replies are grouped under that post – this works like comments under a Facebook post where you have replies threaded under the post, as well as replies to replies threaded together. Very similar to this one Bill is it not?

First posts: Once signed up to the community, users can post right away.

Having listened your concerns, the message board will continue in its existing format. We would like to thank you for your comments and insight.
Bill we didn't want a new house. We wanted new soft furnishings and modern appliances to this one. Of course it can be done. It seems mighty funny that Marc Sutton who does this one has also done the HDYO website which is modern. WOW I see that Dr Ed Wild is company secretary too. He is one busy man isn't he? If someone has the techy skills they can anything. So now you will have washed your hands off this one then and spit the HDA dummy out of the pram. What happened to asking for volunteers? Is that thrown out too. I don't come on here very much now because of the personal reasons which I explained to you and everyone on here. But if it was made so that everyone had to sign in before looking at message boards posts (AS HU) and they was shown to be signed in by name it would help. It would be a start wouldn't it? Answers please asap.
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Old 31-08-17, 10:20 PM   #50
Crystal
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Default Re: Moving from Message Board

Am I missing something here! If the consensus has been that this message board was 'outdated' needed changing, more 'user friendly ', easier to navigate etc. Was it not possible to implement those changes needed on THIS message board!?.....as I said...I don't quite get it!?
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