HEALTH UNLOCKED is poorly today

Oh dear Health Unlocked is very sick today. I hope all the problems can be sorted out and we see you back on your feet very soon.

It's always difficult for users of a web site adjusting to a new format.

The image was derived from a Google Search for 'Bad Websites'. Please don't join them Health Unlocked as we loved you the way you were.

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47 Replies

  • We promise we are working hard to fix all the kinks - this won't last long. Please just bear with us for now and things will get better.

  • It'll be interesting to see if the above post, and Chrystyn's comment will be deleted later on today though I don't think Ovacome will be too upset about Chrystyn recommending another online community as there is little effort made to increase usage of this site. It's such a shame.

    I've been actively involved for over a year demonstrating Health Unlocked Ovacome to patients in my cancer centre. I go along with a laptop and an Ovacome pull-up. Computer literacy is really poor in Wales, particularly amongst the older generation so wonderful facilities like these remain inaccessible to many. There's a small group of us who've been doing this because we think the Health Unlocked site is a god-send and a life-line and we want other women to be able to benefit from the friendships and support you give us.

    Hope the work on the new site goes well. xxx Annie

  • Annie,

    You are well aware that we delete any posts which contravene the rules of the site as reported by other members. To imply otherwise is disingenuous at best. We do so for their benefit, at their request.


  • Sad to hear you have created a private group on fb. The traffic here amongst regulars may well decline and relative newbies, like myself, are unaware of such groups, thus excluded, thus cliques develop....

    Im not naive enough to think folk dont talk away from the site but Im saddened to realise the friendly, open community I joined has an exclusive room for those chosen to be invited.....

    Coupled with unexpected web changes this little oasis I was growing to love is fast loosing appeal.

  • Hi belle

    I have been a member of this group for over a year

    and this is news to me that a private group has been

    created on face book. Obviously I didn't qualify to be

    a member.

    Best wishes


  • awww you can be in my gang Angie ! lol

    I probably over reacted earlier....having a stressful week x

  • Angie! We are not excluding anyone with OC! It was the group of us who met up before members' day who started the Facebook Group. All you have to do is ask to join! We did not recruit members!

  • You can be in my gang too Angie teehee love x G x

  • Dear Anne

    I'm really sorry you've had a rotten day. Hopefully I can explain why some of us welcome the new PM facility where we can reach out to a small known and trusted group of friends.

    I've been an active member of this site for about 18 months. It's given me a huge amount of pleasure and I've made some really fantastic friends. I've met quite a few women and we've always had a brilliant rapport straight away. Through this site a few of us got together and we have started a support group for our local area.

    Break-out groups are no more than this. Friends getting together and having a chat. I agree with you about having an entirely open group but we can't be aware of who is reading our posts, our chats, our worries? We can not possibly know who's out there. Anyone can register as a member and read our posts. This to me makes the support side of the site less effective. When I have a bad day I can't post on here, if I'm worried about something intimate I can't ask a question here. I do, however post when I'm feeling happy and confident. When I really need support I don't get it on an open group.

    You're most welcome to join us. Sending you a PM too. xxx love Annie

  • Belle! Please see my separate post and other responses! This is too public a forum for some stuff and a lot of us are on Facebook already! BTW I do not like this new format!

  • Margaret! I did see you thread entitled 'exclusive group'...wasn't sure what to make of the title at first!

    Perhaps now existence of the 'additional' group is more widely known, and its function explained, you may get more joining, though my personal reservations remain the same :)

  • I so agree Belle love x G x

  • I am sorry but I still don't see why you changed it, and you are going to lose too many people, it has now caused too much dissention, and for me in particular on my third chemo I needed support at the time you started messing about not only when I have just started new treatment, but it was on my birthday you decided to change it,when a lot of members had planned a surprise for me...(I know this has nothing to do with it) but you have caused me distress.

    There was another cancer website a couple of years ago that did the same thing and that too lost a lot of members and never recovered.

    But unless the site is ack as it was I am not staying. :-(

  • Confused, why is my last post up in the early posts which was after other posts?

  • This group is invaluable, not everyone has facebook, and having a facebook page for a group of friends is separate from this group surely? Not be able to post here? That sounds elitist to me, I would hate anyone, whichever group they went to, to then decide they would not post here especially for the newbies and the technophobic.

    When I was diagnosed I ended up here and am very grateful to everyone for their help, guidance and support, I would never have looked on facebook for such a group, and I believe that this group is a valuable resource, long may it continue.


  • I think it's important that we're aware of all resources - whether it be Facebook, Ovacome HU, Ovacare HU and many more. Nobody should be getting upset that members of this forum are posting elsewhere or joining other support groups.

    I have been hugely grateful to this forum for support and friendship. I have told Ovacome and Health Unlocked it has been a lifeline and long may that continue.

    I'm getting used to the new look and really like some of the facilities.

    xxx Annie

  • I don't think it is for any one of us to say what another should or should not be getting upset about. Clearly this issue HAS caused upset feelings, not because others may belong to different support groups, but because an atmosphere of exclusion and cliquey ness has insinuated itself into this group.

  • Once again Moique you have my vote ( if there was one) love x G x

  • Sorry I meant Monique xx

  • Dear Gwyn, I have never done so much blogging since I joined well over a year ago!! Happy belated birthday and I know a lot of lovely ladies were thinking about you. I echo all you said, it worked well before and people could private message if that's what they wanted to do. I liked and knew the site but now I think it's very disjointed, just look at the posting times they are all over the place. You are a very strong caring person and we are all behind you edging you forward. I, too, decided I might not bother with the site anymore with this new format but when I read your blog and others, I realised that the same lovely ladies are sticking together on here as ONE. Hope you have a sunny, restful weekend. Big hugs Gill xxx

  • Dear Gill

    We are all ONE on the site but this doesn't stop us all having our own support circles such as local support groups, other HU sites, Inspire, etc. You will find the same members on a number of fora.

    Please don't stop using the site.

    Love Annie xxx

  • Thank you Gill love x G x

  • Dear Gwyn, so sorry you are having more chemo, hope it goes ok for you and a belated Happy Birthday. It's all a bit confusing isn't it? Love Dawn xxx

  • Thank you for my belated happy birthday Dawn, and for bringing normality into an otherwise stressful situation. (the changes to this site are awful) love x G x :-)

  • Hi LoraHU,

    I understand you have teething problems, although why you should want to fix what isn't broken is beyond me. but speaking for myself (and I am sure many others on here) Ovacome on HU has been invaluable to me as a patient with a progressive disease... and I would publicly like to give recognition for the wonderful support and help that the Ovacome charity gives to me and many others best wishes x G x

  • Gwyn, I echo everything you wrote to LoraHU. One glitch that I have noticed about the new site is the fact that when we write or reply to a post it is not recorded in the order of the time it was written. This makes it very disjointed and things can be read the wrong way. I hope this can be sorted as I have only just started blogging. I, too am very grateful to Ovacome and all you great guys on this site and long may it continue. Gill xx

  • This will probably be deleted by the post police but can I suggest that we all join the OCNA Inspire community? It has e.g. facilities to limit your posts to friends only (you decide who), members, the public, etc..

    It works and has worked for years. Maybe the reason it works for so many mostly sick and disabled people is that changes are kept to a minimum. The site looks exactly the same as it did when I joined nearly four years ago.

    I am NOT going to download IE10 to get HU working. This comes from Google Chrome.


  • I will try to be positive about the new changes.

    I think the biggest mistake was not informing us by email that would have cut out a lot of people having stress, and assuming it was there fault or there computers, very worrying when you are a novice computer user. Most websites do inform people when they are changing or working on websites..

    It would have saved you having to reply to emails, me for one. Can you tell me if we no longer have our daily updates sent to us anymore, I have found they invaluable. and usually its the first thing I read as all contributions are very interesting and informative. Do we have to log in ourselves everyday?

    Thank you for reading. It would be beneficial if we could have a post to explain what the changes that we can adjust to the new system..

    Regards Barbara

  • Very sad what I have been reading about elite group doing something on FB. I thought we were all in this together. I was just going to post how my recurrence has suddenly vanished according to my latest CTscan when the site "vanished" but don't quite feel the camaraderie is the same anymore. Such a disappointment. Gill xx

  • Sorry we are not excluding anyone but, most of us, met up before members day and wanted to continue those friendships. It is not always about OC either. Why should we then be excluded from Ovacome? I for one raise money and am about to become an ROCC! I also belong to, and work on behalf of Target OC and Dignity in Dying! Does that mean I should be excluded from this forum!

  • Dear Anne

    I think your post is really helpful. When we meet people face-to-face we can understand each other so much better because we read body language, we can move away from someone we'd rather not talk to etc. Online it's so much more difficult and it's easy to step over people's personal boundaries without realising it.

    I haven't been posting up blogs recently becuse I've felt uncomfortable with the forum for a while but still want to chat, have a laugh, receive a hug and all that.

    love Annie

  • I am sorry but I am with Anne on this one even though the FB group wasn't intending to be exclusive... the fact is this is what it has become :-(

    Love x G x

  • Dear Gwyn, I'm afraid I disagree with your idea that the FB group Margaret has mentioned is elite. She has just posted up a blog to make sure it's known to everyone. There is another FB group for anyone affected by OC. I think it's reasonable for any of us to join whatever support group meets our needs, whether it be a local support group in the community, something run by one of the charities, or other fora such as Inspire and FB.

    Nobody should feel excluded. xxx An

  • Can I join please xx

  • Yes I agree that she has posted it up now to make it known to everyone, but it is too little too late, and we are all guilty of this. (excluding people)

  • I agree Annie no one should feel excluded but the fact of the matter is that they do feel excluded.

    Love x G x

  • Hi Gill

    That's fabulous news you must feel over the moon.

    Long may it continue that way.

    Oh and just to let you know I am not part of the elite group

    on FB so please continue to post.

    Best wishes

    Angie xx

  • Hi Angie, thanks for that. I hope you see this reply as who knows where you will find it. You have to read through everything again to see a reply as they post it at the bottom of the page, its so disjointed. My last two CTscans have shown a small nodule but this time they can't find it!!! I will never know if its about the supplements and special diet I follow but my oncologist said to keep doing what I am doing. I have to send a copy of my scans to a cancer research centre in Switzerland and I had an email from them to say the same. It's a mystery!! I had also lobbied my MP about OC with questions and I have had a letter back from Health Minister with replies and was going to see how I could post this up as its in a PDF file. But now the site has changed and I don't feel it's the same now, such a shame but thank you for your kind comments. Take care Gill xx

  • I'm not quite sure how to stop this. There is no elite group Angie. Gwyn was one of the group who met up and made friends on Members' Day. You are also welcome to join. xxxx

  • See my separate post about this! Not "elite" just a more private way to chat. It is only restricted to actual sufferers as we do tend to exchange very intimate information that we do not all, necessarily, want to put in a public forum.

  • Dear Anne

    I'm trying to help resolve this. I think there is a case to have a forum for patients only. this doesn't exist on Health Unlocked and of course it can't be monitored anyway as anyone could join and say they're a patient. What Margaret has done is to make the FB group open to anyone. Please do join us. xxx

  • If for whatever reason some of you feel the need to set up a separate group, fine. If you feel that you can't chat about certain things here - ok. You've got your FB page, go off and use it! One of the things that is starting to irritate me, and I think it is disrespectful, is the regularity with which "the other place" that is "only for women" is mentioned. If it's what you want, go off and do it, forever hold your peace and allow those of us who don't need such a place to enjoy the community that suited and helped us enough to become and remain members of it for all this time.

  • Dear Gill There is no 'elite' group. That's surely why Margaret has mentioned the FB group she has joined. There are many different fora to join - as you'll see from Chrystyn's post. There needs to be a choice so that everyone's needs are satisfied. It is US after all who are dealing with cancer and many of us are dealing with a short life expectation, and a worrying future of treatment that will give us horrid side effects, we might be in pain, feel sick, frightened and all sorts of other things. It's important we find a way to support everyone and you are most welcome to join FB groups. There are two for Ovarian Cancer to my knowledge. One is for anyone affected by Ovarian Cancer, and another is for women who have had a diagnosis so they have lived with it. I think Margaret was just trying to alert everyone to this. If you PM me your email I can send you details.

    Hope this explains things a bit. xxx love Annie

  • Thanks for the offer Annie but I have no need to join anything else as I was extremely happy with this forum before. It's absolutely irrelevant to me what other people want to do. We are all our own person and can do what we like in life but need to remember to be caring and considerate along the way. Gill xx

  • This group is invaluable, not everyone has facebook, and having a facebook page for a group of friends is separate from this group surely? Not be able to post here? That sounds elitist to me, I would hate anyone, whichever group they went to, to then decide they would not post here especially for the newbies and the technophobic.

    When I was diagnosed I ended up here and am very grateful to everyone for their help, guidance and support, I would never have looked on facebook for such a group, and I believe that this group is a valuable resource, long may it continue.


  • I feel sad. I've always felt that this is such a positive supportive site. Reading all the posts it just feels as if something has gone really wrong! I want to wave a magic wand and move things back a few days. Am I alone in feeling this?


  • Hi Zannah,

    You are definitely not alone, and I feel sad too, a very valuable support, group (spoilt by a few) love x G x :-)

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