since it changed a couple of months ago ,it seems to have gone downhill rapidly
not many replies to posts anymore,and very limited people on here
IS ANYBODY THERE ?
this site: since it changed a couple of months... - Vasculitis UK
this site
Written by
quinnster
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56 Replies
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hamble99bVolunteer
sadly, this has happened on many hu sites.
I check in most evenings.
if you want to set a discussion off, I will join in if I can.
many members read but don't feel they can, want or need to reply which is their right.
I suggested to HU that we have a "read" or "seen" button so that we would know our messages have been noticed and not feel we've been ignored. - as opposed to "like" as I might read a post but not like it.
just think its a shame,sandra
there used to be plenty of answers to peoples posts and discussion,but all that is gone
Hi everyone, on the old site there was a Blog section that was easy to find, is it still there and if so how do you find it?
If you go the top green bar and click on posts you can blog there. The Name Blog has been changed to post now. The Posts (blogs) are on separate pages to the questions now, but both still appear on the home page ( latest activity) . Hope this helps Sima.
Thanks John, is there anyway you can see the old blogs/posts that I personally wrote without having to scroll through loads and loads.
if you go to members on the green bar it will bring all members up, put your name in the top left hand box and all your personal activity will appear. Past Blogs (now posts) questions etc. John
Thanks John, found them.
if you go to the bottom of this post (blog) we have tried to explain a little how the VUK/HU community works. 
I'm also here. I have to agree though that navigating this site is not as easy as it used to be. If something isn't picked up it tends to slip down. I have been told that one gets used to the set-up and all becomes clear. I'm not so sure and I doubt I am on my own - obviously I'm not.
However, none of these changes are anything to do with Vasculitis UK. They were changes which were considered necessary to the HealthUnlocked platform.
Many years ago I was told about Hutber's Law. This basically said that "improvement means deterioration". I think this is a case of never a truer word - well that's just my opinion, of course.
PatriciaAnn
agreed pat
I too find the changed site rather confusing, it also seems to be "less interesting" if that's the correct term....maybe not. The "old" site seemed colourful and busy - but this seems dull. If it wasn't broken they shouldn't have tried to fix it. By "they" I mean the HealthUnlocked itself, not John and Susan.....lol
However, i'm not moaning, just commenting along with other folks as whatever it looks like - i'm so glad I have the use of it.
mandi
I haven't posted a single thing since this site changed. One minute I wasn't getting emails, the next it's doubling up. Definitely not so interesting and 'chatty' as it was. Shame really, so I suppose it's now up to all of us to make that extra push to ensure help and responses whenever possible. The people posting all need a response in some form, so let's do it, even if it is just to tell them we're here.
I joined the group just before the site altered and was just beginning to navigate it when it changed and haven't had too much trouble using the new site but maybe that"s because i hadn't had time to know the old one.
I admit I don't post much because I am new to vasculitis and am still trying to get a definitive diagnosis instead of just 'you've got vasculitis' 'you had an anca positive result' and we'll see you in 6 months and see how you are then'. It's frustrating and I have symptoms I don't know if they are vasculitis or not, aches and pains I don't understand BUT this site is my lifeline, I check it a couple of times a day (minimum) and learn alot from reading other people's posts.
I live off mainland, am not part of NHS and do feel isolated because of that as I don't know anyone with vasculitis or any experience of it.
Thank you to everyone who contributes and shares their experiences because it helps people like me understand more and we know we aren't alone and support is there if we need it.
hello,thanks for the reply,dont know where you live,but obviously sounds like your isolated,feel free to ask any questions and I and am sure othes will try to help
Third time lucky, keep typing answer then losing it- pilot error, new phone !
I live in Guernsey. The rheumatologist visits the island once a month.
oh right ,lovely place,i lived in jersey for a number of years
I totally agree that this site has gone way down hill since being 'upgraded' .. grrr!
I have complained to Support about a few things not working, which they are supposed to be fixing, such as ...
1) the 'automated' tagging system is very poor, so you are no longer able to ADD new tag which is relevant. But the mass of tags put on automatically mean you have a new post with tags which most are not relevant and far, far too generic for that particular subject. But who is going to take the time to delete these, when you can't even dd the ones you want .. not many I suggest?
2) in My Symptoms section of My Profile, it is no longer possible to delete symptoms which you no longer want to display
BTW: hardly any new members have bothered to complete their Profile, so we know nothing about their background when trying to offer advice .. why is this?
Such a useful profile, specific just to the member's details relevant to that group (not their 'home' Profile), is something that Facebook support groups lack currently, I plan to log that as an upgrade request.
FACEBOOK VASCULITS SUPPORT GROUPS
As stated in previous posts, the level of posting and interest has deteriorated significantly on this site, so I now use many excellent support groups on Facebook. I am a newly diagnosed Churg Strauss Syndrome patient so I tend to use those specific ones more often. ...(read my Profile to see my details) ....
Facebook Support Groups for Vasculitis (these are the ones that I'm familiar with, but others exist) .... member numbers are shown in brackets ....
1) Churg Strauss friends (252)
facebook.com/groups/2286319...
2) Vasculitis Family (137)
facebook.com/groups/2930889...
3) The Lauren Currie Twilight Foundation - Vasculitis Support Group (2025)
facebook.com/groups/Vasculi...
4) Vasculitis Foundation (2052)
facebook.com/groups/vasculi...
5) Vasculitis-UK (Stuart Strange Vasculitis Trust) (968)
facebook.com/groups/1635100...
6) Vasculitis (624)
facebook.com/groups/3856212...
7) Churg Strauss Syndrome Association (503)
facebook.com/groups/5955484...
One big advantage of these groups is that they have a folder on the top menu called "Files" where a whole mass of useful documents are located to be downloaded. Plus any member can add a file as needed.
The main advantage of these groups is that 'most', but not all have regular, new postings (questions) and comment updates, often many per day. My advice is go and have a look
That is the end of my moan, but HealthUnlimited need to get their act together before more members don't bother any more.
I agree that the facebook site is better for information,but unfortunately due to circumstances beyond my control,i am unable to post on there,which is really frustrating when you need advice
so I just plod on on this site and talk to myself
So Facebook site are open sites so I don't like to post much in them. I don't want family and friends reading what i write, they worry enough. At least here it is a private site.
Very good point. I will request that John Mills make that site 'Closed', so membership can be controlled. In my opinion, any group site dealing with support of medical issues, should be CLOSED!
Of the 7 sites that I listed, here is their current security status. Total:- OPEN: 3, CLOSED: 4
1) Churg Strauss friends (252) - CLOSED
2) Vasculitis Family (137) - OPEN
3) The Lauren Currie Twilight Foundation - Vasculitis Support Group (2025) - CLOSED
4) Vasculitis Foundation (2052) - CLOSED
5) Vasculitis-UK (Stuart Strange Vasculitis Trust) (968) - OPEN
6) Vasculitis (624) - OPEN
7) Churg Strauss Syndrome Association (503) - CLOSED
I have just requested that the FB site is made CLOSED ...
Just to remind you all that the #5 site on my list of Facebook groups above, is in fact the one that Vasculitis UK set up. It has 968 members, and regular postings and comments appear every day (much more than appear on this site, and I guess the 'regular' members are all much the same .....
5) Vasculitis-UK (Stuart Strange Vasculitis Trust) (968)
John_MillsVolunteer
We at VUK have discussed this many times over the last few years. We made a conscious decision to keep the FB site open. This is often the first port of entry for many new people with Vasculitis. We don't want to make this any more difficult than it needs to be. It is also a window for people trying to find out more about Vasculitis, maybe friends and family for those who have Vasculitis. It is quite clearly labelled as an open group so one would expect fb users to know that anything posted there is available for all the world to see. From time to time we do pin a post to remind people it is an open group, especially when we see that someone is being indiscreet about their personal details. There is the HealthUnlocked group which is closed for serious discussion. There are two 3 closed VUK sub groups on FB for Young Vasculitis UK, Bereavement and Caring for Carer's. if anyone does not like the VUK FB group they are free to use all the others on FB which have been have listed. We do not want to create on FB an inclusive club. VUK exists to help and support people with Vasculitis and their families where ever they are. I personally, have been contacted by three people in the last couple of days, through the VUK FB open group who were desperate for help and support. I always direct them to the VU/HU community, if they choose to join.
Best Wishes John
Well said John. As I was initially very sceptical about fb, and still am to a certain extent, my first enquiries were via the hu site. However, I have since joined fb and found the vuk fb group to be more active. I agree with those who are not too happy with the changes on the hu site, but am getting used to it, although it does seem to have been quiet lately.
I totally agree - I used to look forward to my daily blogs but not anymore. Why change something if if is working okay?
John_MillsVolunteer
We will be talking to the HU admin on Monday about all the above comments about the new HU changes.
best Wishes
John
John_MillsVolunteer
I am a member of 4 Health Unlocked communities and Susan is a member of 3 HU communities. So if a page pops up with Communities on the top bar, click on this and all the communities where you are member will pop up. you then click Vasculitis UK. which will take you to the latest activity (Home Page) . You can then scan all the questions and posts (blogs) and reply as you see fit. If you want to post (blog) or ask a question just go to the green bar and click on one or the other. You then click on either "submit a question/post (blog"). At the bottom of this page is a button to click that says "all things Vasculitis" click this button if you do not want to share your post/question with other HU communities. Susan belongs to the Lupus UK community and you would be surprised how similar the blogs and questions are with Vasculitis UK. Hope the above helps everyone. As I have mentioned we will be talking to the HU admin tomorrow morning.
best wishes John
well at least my post has opened up the conversation about the problems with this site,cant believe the moderators and people who run the site hadn't picked up on it already
but there you go,sometimes it needs someone to be proactive,
I find the site not as easy to get around as the old one ,Yes change is good but not if it confuses most people .which this seems to have done.
John_MillsVolunteer
The Health Unlocked Admin team are well aware of the problems with the new site and there have been more problems than they anticipated. But we can assure everyone they are working behind the scenes to improve the technical problems. The new site does take some understanding and it has taken me a while and with further instruction to find my way around. I think Richard posted a video back in May explaining the changes that were to take place and what they were, but I still needed further instruction. I am used to the set up now and use it more than I did the old set up. We will be talking to the Amin team tomorrow, I believe members have been giving feedback to the HU admin team about problems they have encounted especially at the beginning in June and July. The HU admin team have also put intermintent messages in all theHU groups apologising for any inconvenience they have caused as they try to sort things out. As I have already mentioned all the comments made in this post will be looked at by the HU team tomorrow when they are back in the office. Please can we move on now as people are trying to post questions about thier Vasculitis and these questions are getting lost in all the comments made on this post.
Thank you
John
I don't believe this,for the first time in a very long time,we have a discussion in which a lot of people are willing to contribute,so to say can we move on because comments are getting lost,is really not on
anyway ,I hope something is done by the admin team ,to make this site better for everyone
I concur, well said quinnster!
Totally agree! This site has the potential to be really good, and users need to be able to express their frustrations. After all the subject on the posting is quite clear what it is about ...
"this site ... since it changed a couple of months ago ,it seems to have gone downhill rapidly"
The main Vasculitis UK website is excellent and is currently let down by the current state of this one ....
Could we not go back 6 months to the site we all knew & loved.
Since the changes, I rarely bother to look at the site, as I find it confusing & unfriendly, which is a shame as I used to enjoy the fact that I was part of community of like minded people.
It`s not the technical problems, but the actual look & feel of the new site, which seems quite alien to the feeling of support it used to have
Tony
I agree tony,thats why this thread is important,its getting people to air their views,which is what the community is all about,not hiding behind the problems and hope they go away
please give your feed back to the HU Admin Tony. Best Wishes
John
I agree Tony. Surely it would be possible to go to the site which we all liked. I am not so computer literate and I am trying to keep working so I don't really want to spend too much time with this. I always just dropped in so to speak and found some very interesting information in doing so.
You have probably hit the nail on the head amms43, computor literacy is not my best subject and coupled with the real problem of memory lapses which, I assume, many of us V sufferers may experience particularly if coupled with a TIA or worse. It can be up hill all the way. Not forgetting that some sufferers' may be totally reliant on their family or friends to keep them in the loop.
hamble99bVolunteer
I appreciate all that john & susan & co put into this site.
my issues are the same for all the hu sites :_
I think that "recent activity" should be an option and not the opening page - I know from others, and for myself, this is very off-putting.
I miss the "members near you" map. I was able to use this as a helpful guide to source local services for members who needed help, advice, advocates and information.
the notifications mails are very hit & miss at the moment.
regards,
sandra.
have you spoken to the HU admin team about this Sandra? and if so did you receive any feed back.
not all of them, and not for a while, hu said they were working on things, so I've left it to settle down.
I too am very grateful for all that John and Susan do. Don't mean to winge.
Sandra, I agree with your comment about it's a great pity to no longer have the "Members near You" button.
When I first saw that I said to my wife .. "Wow ... look at this feature, you can see what patients live nearby .... this is a really smart site"!
So they took it away 
One very nice feature on this site, but is lacking on Facebook medical support group sites, is the ability to click on a member's name and view their previous Activity, split into Questions and Posts.
Looking at a person's previous questions/posts provides useful background information, just as the Profile does, which is also lacking in FB medical support groups.
So fix this site .... and get back to #1! Then the resulting comments and questions are made shorter and much more relevant having read previous ones.
Good afternoon,
I do read the notes people make, however, it is mainly to educated myself as such with regards to WG. My son has the illness and is totally uninterested in it, it's effects etc. so I just read to see what happens to others and what they do - occasionally I do feel that I can chip in.
A read button may be a good idea as there is nothing worse than thinking you are talking to yourself
What is a "read button" please?
Similar to a like on face book. If you do leave a comment you just tick as such to say that you have seen it. I asked quite a few questions when my son was first diagnosed but the need drops off as time goes on. You see this with other support groups, such as NAPAC, I still read it daily but the 'active' names change as time passes and needs lessen
OK ... but a Facebook "Like" button only shows that you 'agree' with that particular comment, and therefore obviously 'read' it. What about all the other comments that you have read and don't like .. there is no button to signify that?
I`m going to look at it from a different angle, are there many people who didn`t like the old site? I ask because, most of the posts seem to be people who want the simple life, & happy with the one click site. WHERE ARE THE POSTS OF 2 MONTHS AGO? the answer is in many of the replies above
I`m another who won`t go on F/book again
Tony
Yes, I am. But then I'm like the 'Bent penny'-always turning up!"
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