Getting the best from our community?

Every so often I wonder how we are meeting the needs of people who come on to this community, and think about whether there are things we should be doing more, or less of?

Every month there are about 40 people who join as new members, and in the last 18 months the  number of active members has increased from 271 to 375.   The 'sessions logged' and 'Page Views' have nearly doubled, but the average duration of people staying on the site has fallen, to just over two minutes at the last count.

We started this community five years ago, primarily to link up people who had undergone surgery to their oesophagus and/or stomach who would not be able to attend a patient support meeting - and it has really been a lot more successful than we hoped for or dreamt at the time.   That is really due to the spirit and wonderful contributions of many different people.   Thank you so much!

We have a wide variety of different kinds of post.   Some are tentative enquiries;  others quite technical medical stuff.   We want to encourage people to ask simple questions without fear of feeling daft, and believe it is important to answer those questions at the right level.    Some people have got quite complex problems and do need to check out some quite tricky medical issues;  so if we can help with those, that is also important.   I think we have to leave it to our readers to sort out the posts you want to read, and those you give a miss to.   With such a wide range, this is inevitable.

My guess is that as people make progress after their treatment, they may no longer need to visit HealthUnlocked.   This seems perfectly sensible, but if there is anything that turns poeple off, as it were, it would be good if we could hear about it.

As the community becomes larger, the spirit and tone of contributions is even more important, and we must all do what we can to respect each other.   The HealthUnlocked guidelines make this clear.   There are many people who want to help others who have not been down travelling along the same road for so long.

So, if you do have ideas, suggestions, or topics you wish to raise, please do make your contribution.   There is also a new poll that aims to clarify the different conditions that people using this community have, and this may help us to understand where we are all coming from.

Thanks for reading this!

Alan

8 Replies

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  • Alan, this site has been such a great help to me. I didn't realise it had only been started five years ago, and so must have been quite new when I joined.

    It's like chatting to old friends, people who understand that the oesophagus doesn't  "regrow" and we get better. We get better than we were, yes, but the problems of having been "replumbed" remain.

    Alan, thank you for everything you do.

  • You and your colleagues are doing a superb job with this site. I refer to the site often and read most posts in my inbox. I am 2.5 years post surgery (Ivor Lewis) and draw confidence and reassurance from your posts. PaulR

  • I am a 9.5 year survivor at this stage, I have helped a few people through this and have also unfortunately lost some friends from this and other cancers, I also have relatives with Barret's and one with stage 4.  I was 32 at diagnosis and am 42 now and and had children post surgery, I also have other medical conditions.  I will always be involved in trying to help others with this and would love to one day speak to another woman who had children post a total esophagectomy.

  • This site was a huge comfort to me when my husband was recovering from surgery (keyhole at Southampton) early in 2012 and I want to record heartfelt thanks to Alan and other volunteers. I continue to look at all posts, some of which make me realise how very lucky we've been to be able to live a good life, "new normal" notwithstanding.

  • I feel very lucky to have found this site when I needed so much information in 2012 after my IL. All those little twinges or big pains were answered by others. Such a great comfort they were normal. I don't pretend to understand the technical side, but always read it. My heart goes out to those who have other issues or just starting on this road. It is very scary. I tell everyone about this site and how many 'special' people there are out there. Because we are special. Thanks for being there.

  • I am now nearly 10 years post op and this site as been invaluable for me.

    An oesophagectomy saves our life but does cause various on going problems and it is good that we can all share and give support when we can. You always feel that you are part of a special group that understands. Keep up the good work Alan your comments and advise are always valued and appreciated.

    Phil

  • You are all doing a great job but definitely think it's lacking in content and some info very superficial - could be more links and more up-to-date info. Too much centred on surgery and not whole process. Hope input helps.

  • Thanks for this. Can you give some examples of the sorts of things you would like to see more of? Then we'll see what we can do?

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