I have heard nothing from HealthUnlocked since Tuesday this week. What is going wrong?

[Hennerton]

Help

[Hidden]

Hello,

We are as annoyed as you are about this new set up, and we are doing all we can to remind HU that this site needs to help people not frustrate them further. It would really help if you could please email HU and express your individual feelings to them too as we have no control over the changes they've made.

Thank you very much. Hopefully normal service can be resumed as soon as possible.

Jane Bull,

Thyroid UK trustee.

[shaws Administrator]

,I have had only one day of notification altogether from HU despite notification to them. I have no clue whether I should have replied to anyone, and it also means I have to peruse more often just in case. A huge nuisance.

[Kangagirl in reply to shaws]

I'm getting just the opposite! I'm getting scores of individual email notifications (instead of the previous 1 digest a day with 20 or 30 posts), plus some duplicates of notifications, plus some of the 'Top Posts today' which is one or two chosen for me, which I hated and opted not to receive.

When I turn on my computer in the mornings I'm faced with such a deluge of individual emails that I just can't handle it. I scan through the headings to see if there is anything that looks particularly important or relevant to me, and also to see if there are any other important emails from other people outside HU that are getting buried in the mess - (most of us do have some kind of life and other commitments outside HU, however shrunken and destroyed by hypo or hyperT).

Then I'm afraid I just delete everything else, otherwise I would end up with hundreds of emails to firstly get access to, which takes a few minutes even with fast broadband, then read, then decide whether or not I can offer any answer. Many many question now have no replies, or only one or two, which was unheard of before. When you feel so ill, you can't just spend hours and hours sitting in front of the computer - this is where the proper daily digests were so great - you could keep them and return to them when you felt up to it, and be sure nothing would get lost or go unanswered.

I posted a question myself yesterday and have had no replies, which doesn't surprise me. Guess I'll have to go back to working out the answer by myself. (I'm not blaming anybody, it's just the new system). I have emailed HU and used the Feedback button twice before it disappeared, and have had two replies from HU saying they are aware of our concerns and are going to improve things. No comment.

With no GP support, feeling like rubbish and now this - I personally feel abandoned and very alone again (although I know you're all still out there, it's now more or less pot luck as to whether anybody sees your post, isn't getting any notiifcations at all, or like me can't cope with the deluge and is deleting almost everything). This is just about the last straw. It would be difficult to deal with such a crazy system if you were feeling tip-top, and all this complaining and frustration merely wastes valuable time and energy which we need to conserve. Not to mention that polite feedback and complaining to HU is GETTING US NOWHERE, so why bother? Things are getting worse if anything.

I don't know what else to say. Obviously no amount of begging 'give us our old site back' is going to work - even if they could give it back with a few tweaks which would GENUINELY improve things, it would be better than this. Can somebody give a sensible answer to the question 'why can't we have our old, much loved and fantastic site back?'

I don't want to sound like a self pitying old moaner (even if I am ) but personally I feel very let down and upset - it's like being back at the GP's surgery, banging your head against a brick wall, with nobody listening and insisting that 'they' know what's best for you, like it or lump it.

Why can they not just admit that this has been a huge mistake which was not thought through properly, and IT JUST ISN'T WORKING for the very people that need it most.

OK, rant for the day over, and now I have a screaming migraine and have to go and lie down

[LouiseRoberts in reply to Kangagirl]

Kanga - just a note on the 'old site back' thing. The site was simply not able to cope with the amount of traffic and the software was 'fixed', it was simply not able to be updated in any way.

We have been told that this site is much more 'plastic' - I suspect he may have meant elastic...

The old site will not coming back, it's gone. They had to use the same 'space' on the web to host this one -which is why the other one had to go first.

L

x

[Kangagirl in reply to LouiseRoberts]

Oh - so the whole thing has gone for ever. We can't even get aspects of it back, like the proper digests? Well, that appears to be that then.

If it's so plastic or elastic or whatever, I don't see why they can't incorporate aspects of the old site that were so much more useful and made so much more sense, even if they have to recreate them - which shouldn't be beyond their capabilities, considering they have created this whole huge mess apparently without even consulting the very people who use it, need it and love it.

I didn't expect them to be able to just 'swap' back to the old site - but I didn't expect utter destruction of everything that made any sense either. x

[Hidden in reply to Kangagirl]

Believe me when I say we are on the same page!

The proper digests are being worked on as we speak though...!

We do really hope to see more changes over the coming months..!

L

x

[Marz]

..have e-mailed them again !

[LouiseRoberts in reply to Marz]

Hi Marz

HU will be testing the Daily Digest over the coming days - we are offering them help and advice on this. Please feel free to join in!

If you are not getting any at all, it may be that you do not have the right ticks in your account...

1) Click your name on the green bar

2) Click Email Preferences

3) Click 'Edit' on the 'Contact Preferences' section.

4) Tick your preferred choice/s. If they are already ticked, try unticking and reticking. If this still does not work, please email [e-mail]

Hope this helps!

Thank you for still trying!

L

x

[Marz in reply to LouiseRoberts]

Have all the ticks - but will do as you suggest and untick and retick ! Thanks for your help M x

[LouiseRoberts in reply to Marz]

Marz - if it doesn't help, please email [e-mail]

L

x

[Marz in reply to LouiseRoberts]

I'm sure they are fed up with hearing from me ! Appreciate your diligence....now go and put your feet up ! M xx

[LouiseRoberts in reply to Marz]

Me too! Back at ya! xxx

[Marz in reply to LouiseRoberts]

xxxx

[LouiseRoberts]

Hi Hennerton

HU will be testing the Daily Digest over the coming days - we are offering them help and advice on this. Please feel free to join in!

If you are not getting any at all, it may be that you do not have the right ticks in your account...

1) Click your name on the green bar

2) Click Email Preferences

3) Click 'Edit' on the 'Contact Preferences' section.

4) Tick your preferred choice/s. If they are already ticked, try unticking and reticking. If this still does not work, please email [e-mail]

Hope this helps!

Thank you for still trying!

L

x

[Kangagirl in reply to LouiseRoberts]

Louise, I have tried this, and I'm afraid the options offered are not very helpful:

Email me when a someone creates a post in my communities

Email me when a someone asks a question in my communities

Email me announcements from my communities

Email me when someone responds to something I've written

Email me when someone sends me a private message

Email me a daily summary of what's new in my communities

Email me announcements, and occasional news, tips and insights from HealthUnlocked

Contact me for research purposes (eg: clinical trial recruitment, surveys etc)

The first three mean you will get everything - which I do, and can't cope with the volume of individual emails. The next two mean you will get one or two only, (or nothing if nobody has messaged you or responded to your comment). 'Daily summary of what's new' could mean anything - probably the 'Top Posts' pre-chosen for you, usually one or two at most. The last two are pretty meaningless and wouldn't occur very often.

They are not giving us the option that I think most people desperately want, which is 'give us the digests with 20 or 30 posts/questions' that we could see all at once and could chose from and save and come back to. And, nothing to do with emails - once you were on the site, there were other posts down the side of the page in case you'd missed anything, and we didn't have to 'Browse by Category'.

Does ANYBODY have the time or energy to Browse by Category, when it could take hours and you might never find what you're looking for - especially as now even our tags are pre-chosen for us, and as far as I can see they just pick random words from the post which do not adress the main points.

I have been able to delete pre-chosen tags which have no relevance to what I have written, but have not been able to add my own. It's a shambles.

[Imogen in reply to Kangagirl]

Hi Kanga,

You always sum up to a "T" all the frustrations I feel with this new site. I feel as if there is a brick wall between me and any help. It`s so annoying to try and access anything, without it taking ages. Why is no-one listening to us?

Imogen xxx

[LouiseRoberts in reply to Imogen]

Hi Imogen

Thank you for your feedback.

We are listening - we are emailing constantly.

We are continuously informed that they are working on things.

We HOPE to see on-going improvements in the coming weeks/months.

L

x

[Imogen in reply to LouiseRoberts]

Hi Louise, It`s probably as frustrating for you as it is us, hopefully it will come right soon. BUT I have to say I did prefer the old format, one e-mail with loads of posts I could pick out if I were interested.

Thanks Imogenxx

[Kangagirl in reply to Imogen]

Hi Imogen - I think I said the same thing in an earlier gripe about it feeling as if there is a brick wall between us and any help or communication. I'm blowed if I can work out why it has to be such a struggle, like an insurmountable obstacle couse, when we least need it.

It's gone beyond us being a bunch of old crabby stick in the muds who can't cope with change. I don't know if anybody is listening - the admins are, and are doing their best but don't seem to be able to get anything changed.

As for the 'Powers that be' - who knows. I think they are getting plenty of flack thrown at them, but whether they are actually listening or intend to do anything to improve things is a moot point. The responses seem to be pretty lame so far, and my gut feeling is that they think we will just get used to it if they leave us to get on with it for long enough. WRONG.

People will just get fed up and drift away, and some people in very dire straits will never get the help or advice they desperately need. It's so sad and infuriating and upsetting to have it out of our hands completely - we can't do anything and it's entirely dependent on what they decide to do - or not.

I don't know how much point there is in incessant nagging and complaining. I'm losing heart over it all and probably won't bother if this goes on much longer. It's so exhausting, and to coin a phrase 'does your head in' - literally, my migraine is crippling me. xx

[Hidden in reply to Kangagirl]

All we can do is keep throwing things on your behalf!

We will not just lie down quietly - believe me!

We are also not the only group making noise.....

HUGS!!

L

x

[Kangagirl in reply to Hidden]

Thanks Louise, we really do appreciate it, honestly. It can't be easy for you, being stuck in the middle of the battle,

There may be some hope on the horizon, fingers, eyes and legs crossed. I had an email from HUL and it was like the old digests, with 'Is 25 mcg of levo enough, AND 33 OTHER POSTS' !!! It was very like the old digests, even down to the blue headings! I almost burst into tears of relief. Asked for my comments.

I emailed back and said it would be fantastic and brilliant if they could deliver the digests in this way again. Profusely thanked them and also said if you could put back the 'most popular posters' down the side of the page instead of 'Browse By Category' - or even in addition to it, and let us add our own tags, or at least have the option of adding our own instead of just deleting the random ones that appear at the moment, that would be even better.

I practically grovelled, so hopefully something positive might be on the way. Mostly down to you guys and everybody else who has been nagging incessantly.

I haven't had any more like that - still getting hundreds of individual emails - but at least it shows that it IS possible, and hopefully they will take notice.

Wondering if anybody else got the same email? Please tell me I didn't dream it

Kanga x

[Hidden in reply to Kangagirl]

So glad to hear it! Yes - that it was they were testing! I sent them some feedback about it - as it's not perfect - but at least it is a VAST improvement!

Re too many emails - make sure that you don't have any of the top 3 options ticked - if you don't, and you are still getting loads, let me know and I will report it directly for you!

Drop me an email if it's easier and we can try and figure it out together! [e-mail]

L

xxx

[Kangagirl in reply to Hidden]

Thanks Louise - a VAST improvement indeed! I will try unticking the first three options, I was only trying NOT to get the 'Top Posts chosen for you' which numbered usually two, and was next to useless.

It's like being between a rock and hard place - I don't want the two posts 'chosen for me', (snarl) but neither can I cope with a deluge of individual notifications. So if unticking the top three options means I might get something akin to the 'new but old' digests, I'll do it straight away.

I will email you and see what we can figure out.

Kanga x

Edit: I see they've now split the options into categories, so the formerly first three are now nos 3 - 5. Anyway, I've unticked them.

[LouiseRoberts in reply to Kangagirl]

Hi Kanga

I am not disputing this.

They are currently testing the Daily Digest and hopefully it will soon show ALL of the latest posts and Qs like it used to.

The downside is that - at the moment, unless I can get them to change it - it will contain all of the posts and Qs for ALL the groups you are a member of...

I had not thought about the lack of 'latest' that we used to have - I will flag this up.

Tags is on the list of 'sooner rather than later'....

L

xx

[PinkNinja in reply to LouiseRoberts]

I think Lora said in a response a couple of days ago that the 'latest' thing was being fixed but I may have misunderstood so perhaps another email is a good idea

[LouiseRoberts in reply to PinkNinja]

Are you offering Carolyn...!? I think Lora is sick of me today! xx

L

x

[PinkNinja in reply to LouiseRoberts]

I can do I shall have a quick look first for the response and then email if I'm not sure.

[PinkNinja in reply to LouiseRoberts]

It seems I can't message her

[LouiseRoberts in reply to PinkNinja]

Not to worry Carolyn. x

[Kangagirl in reply to LouiseRoberts]

Thanks Louise. PLease don't think I was in any way critcising the admins, I know they are doing their absolute best on our behalf and am very grateful.

In my case I only belong to TUK and the PA Society (and they don't seem to be all that active as regards emails), but I can see it might present problems if you belonged to a dozen different groups, if there is a dozen.

But I do still think that most people preferred the old digests where you could see everything a a glance, decide which to reply to and keep them to return to when you were following a thread or had something to say. When you get absolutely everything by individual emails, it's just impossible. And I'm also getting them from the PA Society as well, though not nearly as many.

I also much preferred the 'top posters' posts down the side of the page once you got onto it, rather than 'Browse by Category' which is worse than useless. Might it be worth mentioning this as well?

Thanks again

Kanga x

[LouiseRoberts in reply to Kangagirl]

It's ok hon - I didn't think you were! xx

[Hennerton in reply to LouiseRoberts]

I seem to have unleashed a hornet's nest of furious thyroidies. Sorry Louise and thank you for all you have been and still are doing. Since my question I have had lots of emails with replies but still no daily posts. So confusing but at least something is happening, I suppose. xx

[Hidden in reply to Hennerton]

lol! It's no problem! We need to know what people are not happy about - and more importantly, so do HU!

Check your email preferences to make sure you have the Daily one picked.

You will get an email every time someone comments on your thread - unless you untick that option! x

L

xx

[Hennerton in reply to Hidden]

Thanks but have checked and I am all ticked, so I await the daily posts when HU can sort themselves out. xx

[Hidden in reply to Hennerton]

Hi Hennerton

Have you tried unticking and reticking? The Dailys should be close to being sorted - Kanga's getting hers!

If this doesn't work - please drop me an email and we'll see if we can figure it out... [e-mail]

L

x

[Hennerton in reply to Hidden]

Hi Louise, since I asked the original question I have had plenty of emails but no dailys yet. Hope they start soon. I have unticked a couple, as I could not cope with the deluge! Thanks and will keep hoping. Btw, I keep writing replies, which then disappear as I am about to send. Has that happened to you? x

[Hidden in reply to Hennerton]

Hi

No, sorry, not had that problem.

As far as I am aware, if you have dailys ticked, it should be coming through now - if this is not the case - please report it and your comment problem to [e-mail].

L

x