End of Life group

Perfect 

Thinking of you, hope you're being very well looked after. Let me know if you're up to a visit but absolutely no pressure m'dear.

xx

Hi 

I have read discussion with interest. I have already made my views known a number of times - that I’m against separating out the end of life group for all the reasons that Nicky Nosher laid out so eloquently. It seems to me that there is no consensus about whether to have an end of life group as a separate group or a sub group of incurables as present and that there are good arguments on both sides. I do not think that recent upsets should be seen as adding to the case on either side as that sort of upset could happen wherever the group is - and it will happen again, it’s in the nature of the subject material. 

So can I make a suggestion? Create the end of life group as a separate group as a trial - just as it was first established here. If it does not thrive as a separate entity without the cross over traffic from incurables, then move it back. 

Hi everyone,

Thank you so much for sharing your thoughts with us on this thread. It’s really important that we have your feedback and input into decisions like these.

We initially created the End of Life group on a trial basis, based on feedback from members in our Living with Incurable cancer group that asked for a space to for those closer to end of life to openly and safely discuss their feelings and experiences. Unfortunately, due to technical restraints, we weren’t able to separate out the discussion threads between the end of life and incurable group. This meant that all discussion threads appeared in one place. Sometimes members from the incurable group would be posting/reading threads in the end of life group and vice versa which has caused some upset and distress amongst members.  

The intention behind separating out the groups is in no way about isolating either of the groups, or creating barriers, but simply to allow the end of life group to inhabit it’s own space. We do not intend for the group to be hidden or exclusive of anyone who gets support by reading the group or being in the group and it will be subject to the same processes as our living with incurable cancer group in that members will need to request to join before they’re able to post. This is so we can ensure the space remains as supportive and as safe as possible for those who wish to use it. We will still keep the links between the groups in place so that people are able to move between them more easily.

In terms of how the groups look and feel, the only difference you should be able to see as users is that the discussion threads are separated out and that if you would like to post in the End of Life group, you’ll need to request to join (just as it is currently in the living with incurable cancer group).  

We have not had feedback from users in the carers space that they feel they need a more specific place to talk about end of life and so this space will remain a patients only group.

 your suggestion of a trial is great and we’re more than happy to revisit this as and when the needs of our users change. This Community is for you, our members, and so we will look for your input and feedback to ensure we are supporting all of our members as best we can.

We’re still awaiting to hear a little more about the tech side of separating out the groups – I will update you as soon as I know more.

I hope this has answered some of your questions and allayed some of your concerns. In the meantime, please do continue to post your thoughts here, or by emailing us. This is really helpful for us to see so thank you for taking the time to openly share with us your feedback. 

Best wishes,

Ellen
Macmillan Community Team

Hi everyone,

I just wanted to post a quick update. It looks as though it'll likely be next week that we're able to make the above changes. This is due to some technical errors we want to iron out before we go ahead.

Thank you for your patience and if you've any worries, concerns or questions, please do get in touch.

Best wishes,

Ellen
Macmillan Community Team

Hi everyone,

I'm posting to let you know that it looks as though we've been able to find a resolution which means we no longer have to 'separate' out the End of Life group from the Living with Incurable cancer group. 

We've been able to prevent the discussion threads from the End of Life group from appearing in the Living with Incurable cancer group. Although the groups themselves are still linked, they both now inhabit their own space.

I'm hopeful this will ease the issues that we were experiencing. There shouldn't be any noticeable difference in how you experience using the group - though you may now be required to 'join' the End of Life group should you wish to begin a discussion here. 

I hope the above makes sense and I'd like to say thank you for your patience with us on this one and for taking the time to share your feedback with us. If you have any questions or there's anything myself and the team can do please don't hesitate to get in touch with us on community@macmillan.org.uk. 

I'll also make a post in the Living with Incurable cancer group to let them know of the changes. 

Best wishes,

Ellen
Macmillan Community Team