Good luck to those staying here...

I have to say I am dealing with it at the moment by doing NOTHING until I have logged in and don't even THINK of following a link from my email. Then it is almost acceptable - but I don't come here unless I have plenty of time to waste.

But even then I find I am waiting for ages for all the fluff do download - they may be pretty colours but they are only window-dressing and irritating in the extreme. Every post takes an extra few minutes waiting to get there and find the latest post in a thread, especially if it is a well populated thread, and that is the only way to be able to make a sensible reply. Who thinks you can reply to a post without being able to see it and the context it is in? Please!!!!!

Then you have to check the post you just wrote to see how much has been cut off - before you forget what you said. And that means going back into the thread AFTER posting. Only then can you go back to your forum to see NEW threads that you haven't yet participated in - that is particularly stupid.

Patient's Experience may have a larger range of discussion forums than any other known site (maybe not) - but if you look closely there are an awful lot with one post and no replies. That doesn't spell success to me. Success is a forum like the Polymyalgia Rheumatica one where contributors have been here for 3, 4 years - some since it was started probably. The community that had been formed has been destroyed by trendy rubbish. The whole point was to get info from patients with experience - and those of us who have been there, done that and, above all, DONE THE RESEARCH IN THE MEDICAL FIELD to go with the experience have been put to a lot of upset and most of us have now lost patience. Look at the numbers visiting and who they are - it speaks for itself.

Alan, Mr Moderator, I'm sorry about this rant but if Rick's had enough it must be bad. The pmrandgca forum has had some 700 posts in a WEEK, almost everyone from the US forum and this one are visiting over there. This used to be a clear and simple forum where info was easy to identify, in some ways it still is compared with the pmrandgca forum which is a permanent conversation and more like facebook in some ways, but this is now so time consuming you can't just drop in for a look. And as Rick says - we're still waiting for the improvements. I think we have been very patient. I have no idea how you can get through to your management and implementors how we feel but unless you do you will have lost ALL the experienced respondents. It will take a long time to get back where you were. Pity the people who need help.

Eileen

Hi Rick and Eileen

Thanks for your feedback - we know it is frustrating for you at the moment but I promise there is some light at the end of the tunnel!

I manage the digital team at patient.info and I promise you that we take your feedback very seriously as we want to make this the best and easiest place for people to come and discuss their health issues. I speak to Alan (mr moderator) on a daily basis and am very aware of your current frustrations.

We have taken all of your feedback and prioritised it into a development roadmap. I am pleased to say that development of our first priority list is now almost completed.

Early next week we will move into a testing and bugfixing phase which is likely to take around a couple of weeks. Once we are happy that the new functionality is working as expected, we will do a rollout and these features will appear on the site:

“Remember me” function so you don’t have to log in every visit

When replying, always display the thread users are replying to even if they click post reply and THEN sign in, or coming from an email alert

Ability to reply inline so you can answer directly in the middle of the thread

Ability to format text with bold and italics

Ability to add in a selection of emoticons

Change your avatar/profile picture

Speed improvements

Allow registered users to view and add to profiles including showing number of posts

On latest tab, order by latest reply not latest initial discussion and add dates to the initial discussions in these lists

Show alternate colours in the lists rather than the same grey to make it easier to read

Add time of posts in the actual discussions

I appreciate this is a frustrating period for yourselves - but we are working as quickly as possible to get the list above into the forums for you to use.

As ever, once these are out, please do let us know any other ideas you would like to see and we will take these into consideration for our next phase of enhancements.

Thanks

Ben

Thank you Ben - now I don't want this to sound too rude - but you'd make a great politician! I've worked in market research for many many years and have heard a lot of this sort of guff - in fact I was doing a translation this week about the way to handle complaints and I have to say that it all sounded very nice but I still had this feeling they didn't quite get what it is that we MOPs want (I don't come to any conclusions, I translate what they give me). We don't want smooth assurances, we want it left simple and got right. And that from the outset. This was programmed for failure - you stopped what worked before you knew that this would work. And it didn't.

There are 3 forums that are used a fair amount for PMR by the UK patients, yours was the best of the three for serious and uncluttered discussion of a problem and seeking well-founded recommendations for dealing with one. The other UK one is fantastic as a support group for building up people who have been messed about or who are having a bad day (and there are plenty of those in PMR) but that in itself has been leading to some confusion when it comes to talking about more medical things and several of us really felt this to be a refuge.

Some of your offers are still fluff - I couldn't care less if alternate posts are in different colours - it doesn't make it any easier to read IMHO. Remember me is a function I almost NEVER use, I'm capable of signing in, that isn't an issue. Replying in the middle of a thread isn't a big deal either to be honest although I suppose it helps be more directional with a reply if there has been a change of direction later inthe thread - but that isn't much use except for someone new much later. Time of posts, the only one that interests me is the most recent. I always scroll back to the last I remember reading anyway. In this forum for PMR, the main thing we want is to be able to get to the most recent post on a thread without spending at least 3 or 4 minutes doing so - and that is the case at present - together with the threads with the most recent posts being at the top of the list in order.

I do appreciate we are only one of many discussion forums - but we are one of the most used. Well, maybe it is more accurate to say "we were". Stuff the "next phase of enhancements", you need to concentrate on getting the clients back first - and one thing I have learnt in my years of market research is that, whilst losing them can be done in a very short time, getting them back is something that takes years. You are not a sole provider any more.

Eileen

Eileen, to focus on your 2 main things:

"Get to the most recent post on a thread"

If the thread goes over more than 1 page, just scroll to the bottom and click the last number in the row. Would it help if we added a 'last' button to that row too?

If you tick the 'remember me' function when it goes live this will also mean that email links will work and it will take you straight to the post rather than you having to log in first.

"Threads with the most recent posts being at the top of the list in order"

When the new features are rolled out this will happen.

All I can say is we are working hard to improve things, trying to be open about it, and we will continue to listen to what you have to say.

Cheers

Ben

Ben - I'm not so daft I haven't worked out how to get to the final post on a thread by now and I can work out that if the nos are 1 to 4, 4 is the last. I also said I can cope with logging in.

But please try to think about how an elderly person - and by definition the vast majority of people on this forum are over 50 since PMR is uncommon in younger patients - with stiffness and tendonitis in their hands feels whilst rolling that little ball or clicking and dragging the side bar to get to the bottom of a page that may have 20-odd posts on. I don't have much interest in the first of 4 pages frankly. The row of page numbers at the bottom should be at the TOP!

I also suspect you also don't quite understand how most of us deal with our visit to the forum. I log in and then work my way through all the posts since I last visited. I start with one thread, work my way through that, post if appropriate and quit back to the list of threads with new posts, select the second one - rinse and repeat. Many of us are professionals and used to logical and thorough examination of our emails - we use a similar process here. My email account would have been discarded very quickly if it had worked like you have set this up - email accounts have the most recent arrival at the top, some offer other options but that is the default.

I don't want to have to flip back and forwards between my email account and here - and, to be honest, I don't particularly want notification via my email account either. I have to spend too long removing the posts - I do have email notification for a couple of threads elsewhere that were of particular interest within a very broad field that I didn't want to read all of the responses. You didn't ask if I wanted it - you imposed it on me with the new site.

Ben, I checked over on the other forum: it is now exactly 2 months of chaos since you went live with this. There may be light at the end of your tunnel and you may feel you are being open about it and listening. I can assure you that a lot of the people who used to use this don't have that perception. That is exactly what led to Rick's post this morning - and if he can't cope with your foibles here with his experience of the internet how anyone else does it is a mystery to me. He administers sites himself - he knows what he's talking about. And I'm very much afraid you have lost them - the emotional aspect is very high on the user's list anyway and when that is abused by a simple thing aimed specifically at people who are vulnerable because they are ill suddenly being made almost unusable you've lost a big battle.

You can get neoprene fingerless gloves - get yourself a pair that is at least a size too small and cram your hands into them. Then try to operate a keyboard. That is the reality of life for many of your PMR and rheumatoid arthritis patients to mention just 2 groups - except the gloves are all over, from neck to ankles. You have ignored an important principle: the KISS principle.

Eileen

Hi all

Glad to see its not just me. I have COPD and there was quite a long term group there at one time. We have all given up and looked elsewhere. I can't understand why it was @improved' when it was a great site before. Even if they wanted to improve the overall site, could they not have left the patient forums alone? Is there no way of reverting back to them? Some forums were serving people who don't have many years left due to thei condition. Our COPD forum was special even if we didn't always post, we checked in and read. Two of our group died during the forums time, and it was a special place for us. Now it's hard to find anything there. I give up. Hugely dissapointed - Vanessa

Eileen, I agree with all you have said. I don't have a real problem with this, but then I am used to it - it's all those who do not have much experience with computers/internet, they are the big worry.

As well as being (in many cases) suddenly ill with something they have never heard of AND having to go on steroids AND wanting to find reliable information from a medium with which they are not wholly comfortable - it's enough to make a lot of them lie down and chew the carpet!

As for the fluff - give us a break, guys! It might look pretty, but it won't make it WORK any better!

Catie

hi eileen ever thought of standing for parliment if you were englands prime minister all our problems would be solved ,thanks for airing so clearly all the faults of this new site .I must admit i am reluctant to leave because it does or did concentrate on the medical issues and supporting people with the same condition seemed a wothwhile thing to be doing .however i have looked at the other forum and as always gain more insight into pmr from other peoples experiances , keep on fighting the cause eileen and although i am unable to contribute in such a knowledgeable way i totally agree with all that you have said .carolk

Hi Eileen

Thanks: your feedback has been very detailed, honest, and given really good context around how some use the site.

I'll ensure that the row of page numbers are added to the top of the page as part of this next release.

I'll also make sure that on the forum index, the words 'Last reply' are linked and this will take you to the last reply.

The updates we are making to the 'latest' tab will mean that you actually see the latest discussions at the top so the process of you going through each new thread should be much easier.

I appreciate that you may have left these forums by then, but if you are still around when the changes do roll out please do let us know what you think - and more importantly what we can do even better in the next round of updates.

Ben

Hello and Goodbye to you and all the friends I made while suffering from PMR(still am), losing my son after 10 months of cancer agony then nursing my husband for 4 months till he died of the same.Took me ages to finally sign in. I wanted to have a moan but it`s all too complicated. Bless you all for the support and comfort you gave thru those bad times Shebob x

please dont give up unless you can get some support on the other forum my background was in palliative cancer care and i lectured on bereavement ,plus supported carers through the nightmare period of the illness and the empty void thats left behind so although this site is a pain at the moment if i can help i will if you cant bear to cope with it please find support ,i am fully aware of the pressure there is to find a way through loss but sometimes you have to stop fighting and just have a really good moan !!!! because its really hard work and if someone tells you to think positive grit your teeth because they have no idea what its like thinking of you carolk

Hi shebob,

The direct link to the NE forum if you want to use it is http://pmrandgca.forumup.co.uk/ where a lot of users from this site arestill very active with their posting.

We are getting on with making changes to this site so I hope you and others will come back when these are live.

Regards,

Alan

Emis Moderator

Oh shebob - I'm so sorry to hear your news and I do hope you come back at least once to read these posts. And it's such a shame none of us can give you a big real hug. None of this will have helped you at all with the PMR either will it. You have done a wonderful job supporting them and now it is your turn - shout and scream and whinge and moan all you like to us.

Alan has given you the link to the newer forum that started just over a year ago - please give it a try and, what is even better, there are now several support groups where you can meet people from here in the flesh! I can't for the life of me remember where you are from.

It is very different from here - slightly mad and may be a bit OTT for you yet - but we do have moans and then laughs to improve the bad days and there seems to be a 24/7 presence what with US and Aussie contributors and night owls. And emoticons. And private messages. Though they are suppoed to come back here too.

Please come back shebob - we don't want you feeling too lonely.

very best wishes to you

Eileen

shebob I am so upset reading your post..... please use the link and come and talk to us on the other forum....... you will find so much friendly support....... hope you will come back in and see these posts..... look forward to seeing you on the other side xx

Alan, should have said a huge thankyou for giving shebob the link...... very much appreciated