this site

4 minute read time.

This Site

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In my opinion this site was messed up the day the macmillan people changed the site from " share" and " what now " and in my view its never been the same..

so many people couldnt use this site and ended up with no place to go, so many threads and posts vanished never to be seen again...

no one even wanted the changes..infact everyone DID NOT want the changes only those that run this site didnt listen and didnt care a dam...  It sure was not something the members wanted thats for sure

many warned what would happen when the mac people turned this into a facebook style site and stuck a version of this site onto facebook.....

all the dam spam messeges we get bombed with and all the times we have asked something to be done about it and all we get is o something is getting done....BUT still i get these dam messages....its pointless reporting it because nothing ever gets done...

in my opinion , this site doesnt reflect the reality of having cancer....on here ever since the change over every other new member is terminal, diagnosed as terminal with weeks to live, or someone has just died...

but in reality the majority of people when diagnosed have a chance or recovery or  remission.....but not on here...

were have all the patients gone ? 

since the change over its become more of a carers site and if a patient gives his opinion he is stamped on by carers.....

someone said lifes not worth living......well i am a patient fighting to live.....as are others....maybe the problem is as i say when we log on we get a list of ALL the latest posts and we do NOT see that was posted in a coping with loss forum....blame the people who changed the site.....as i say we use to get a list of all the different forums come up and we could then go to the forum related to what we was looking for...

to be honest to me i think any new genuine patient just coming on here will just freak out and end up scared stupid if straight away the read a bad death thread.....that should be in a " death forum" and not on the main page....

coming on here its more like a bereavement forum and a death forum nowadays

try posting a posative thread and see how no one will use it......

i started the today i had a good day......only 2 people used it in 3 days....BUT hang on...the tv advert says it not all about cancer its about good days as well...only its not is it ...not on this site....

i remember there once was a big " jokes thread " on share.....its died a death....

there was a dance cancer away thread were people would share music....but its died a death as well...

think what you like but this site is not a shadow of what we once had...

why do you think so many people wont post on here anymore.....and so many have made there own pages on facebook and then invite people they trust to join them...so dont think its just me who is thinking the same things...

also......on the old sites we all trusted everyone on here.....i can only remember a couple of fakes on there...

but on here ???

half the time you dont know who us genuine and who is not.....again dont think its just me thinking the same......why do you think that on the old sites every new member got lots of replies.....now half the time new members dont get a reply or more then a couple of replies...

a message to the fakes.....we are not stupid...you might read stuff on the internet but your still easy to spot sooner or later...

course no one agrees with me but i think everyone should have to fill in a profile..and stop just putting   " iv got cancer"      "my friends got cancer and is dying"  " x had cancer for 4 years and died yesterday "    [ so why didnt you join during x"s 4 year fight but the minute x died you found the site and started posting about x and his / her horrible death ? ]  .....

are you trying to scare genuine patients ?

personally in my opinion thats just what some people are tying to do..

id like the profile to include....type of cancer.....type of treatment if know and even hospital of treatment or town people live in....

but i know no one wants that do they...

so i predict this site will get worse for scammers , spammers and fakes...

if you was on the old sites you will know what i mean ...

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so just like many others...i am on facebook.....and i wont bother with this site again apart from replying to my good friends who pm me...

its a shame...

it shouldnt be like this...

the blame is with those who messed the site up with there pointless changes that no one wanted...

my advice to all genuine people on here......just be carefull...and dont ever be afraid to ask anyone things like what hospital do you go to.....were do you live etc etc...

because the people who run this site sure arent going to do anything about making it more safe for genuine people...

and most important.....

no one has to agree with one thing i say....

it matters not....

im not a person who gets depressed...far from it...

but if this site is making me feel depressed then i doubt if i am the only one....

.....................

Anonymous
  • FormerMember
    FormerMember

    Can I play Devils Advocate for a bit......what if and its purely hypothetical (Macmillan pay no attention to the next bit)

    Macmillan just closed the site due to all the problems?

    How would we feel then? Where would we go?

    I don't use this site much anymore, I don't like it and I am competant in webdesign and computers but still have a lot of trouble navigating this one.  It's slow, I have to sign in each time I visit in a day even though I have checked, remember me!

    But through all the bad stuff and stuff I don't like, here I can still find some wonderful friends and support, the likes of which I can't get or won't ask for with my family.  I too have lots of people from here on my facebook but when my own younger two children are not aware of the severity of my brain tumour....I have to be careful about who I trust on FB and what's said.  At the moment, people wish me luck with MRI's and we have a laugh, my whole family could be devastated long before they need to if someone slips up.......so here is the place where I air my fears and worries, away from family that I don't want hurt.

    I agree the opening page is very misleading, I've clicked many a subject heading only to find it wasn't what I thought it was..........ok so I do the mature thing and don't reply but I would prefer an opening page where forums, groups and blogs were just listed in separate area's.....can still have 'latest post and by' that would be great, but I won't hold my breath.

    I hope I didn't upset or anger anyone with my post - after all if it was out of order, I'll blame Buttercup my brain tumour, like I do for all the bad stuff in my life ;)

    Love & Strength

    Debs xx

  • FormerMember
    FormerMember

    Hello again everyone,

    First of all can I apologise if my message came across as patronising in any way, I can assure you that was not my intention.

    Also it was never my intention to censor complaints or criticism in any way - I was just pointing out that there are dedicated channels for doing so to ensure that they are read by admin. Of course you are free to post wherever you like, the only thing is they may just get missed by admin.

    Please be assured that Emelia and I, and as a result our managers DO listen to your feedback. I have a spreadsheet on my desktop right now called 'user issues' on which the team and I log all of the complaints and suggestions you make to us about the site. We are using this spreadsheet in our upgrade process and we are fighting for as many of your suggestions as possible to be included.

    Unfortunately I cannot give you an accurate timeline of when these changes will be take place, as I do not have one myself.  This involves a lengthy process with developers but please be assured it is something that is being worked on right now and the changes are scheduled to take place within the next 3 months

    Emelia and I care very deeply about this Community and the members. It is not just a job to me, I want this to be the best site of its kind - and I'm working really hard to make that happen. The thought of any of you leaving or feeling that you need to leave because the navigation is so poor is upsetting, which is why we are changing the site to try and make it better for you. You are the reason there is a Community in the first place after all.

    I have been in this job for 5 months now, so honestly, I don't know exactly how the old site worked. However what I can see though that many of you miss the structure which is something that we are working on with this site. Please be assured that we are listening and we do care.

    Christine, please can you let me know which of your emails have not received a response as we aim to answer every query we receive. I will look into this for you.

    Rebecca.

  • FormerMember
    FormerMember

    Rebecca said "If you would like to comment on the site, the staff, the content or the organisation as a whole then please use the 'Suggestions for Improvements' thread or contact a member of the admin team."

    That's all very good Rebecca - but we've been hearing this since the old site disappeared, and all we see are tweaks round the edges. The whole design philospohy of the site is wrong. With the old sites, if there were dozens of posts (to take the example Graeme uses) on death and dying, you would only see one heading, and all the posts are under that. Now you see every thread - and you've still no idea in which forum it is posted.

    Rebecca goes on:

    "As I've stated several times before, we are addressing the issues with the site navigation. We understand that it is not ideal and we do not make any claims that it is. We again ask for your patience and understanding in this matter. Things simply cannot happen overnight."

    Its not just the navigation - the whole of the Macmillan websites need a rethink - why isn't there a single sign on to all the Macmillan sites, instead of having to have users names and passwords for each site? Why have we gone for the multiple column approach, rather than a single easy-to-read page, like other fora have?

    As for things happening overnight - how long is it since the old, perfectly acceptable, sites were removed? That's how long we've been waiting. All it needs it someone to click a button and roll back the change.

    John

  • FormerMember
    FormerMember

    Hi again John,

    Thank you for your response. At this moment there is a man called Kevin working on single sign on. It's just over a year since the old site was changed for this one, and we hope to have the upgraded version in place early next year. It has taken this long to ensure that we fully understand what we are changing so that we do not repeat our mistakes and to arrange development resource to do so.

    We cannot 'click a button and roll back to the old site' - nor would many of our members want us to. We will however be making significant changes to this site, taking into consideration all that has been said over the last 13 months.

    Rebecca.

  • FormerMember
    FormerMember

    There  are other cancer chat sites to go to if Mac close this down, juts search the web and you will find them.  Much better than this one too!  I only pop in to see how some people are and leave straight away.  So instead of all the moaning and groaning look for an alternative site if this one doesn't fi the bill.  They are going to run this site as they see fit and spend copious amounts of donation monies in this endeavour.  I think many would be surprised by the Year End Accounts for MacMillan as a non-profit making organisation!