End of Life Forum and Incurables

Thanks for raising this, ownedbystaffies. I raised the same point with the community team some weeks ago as I felt the same. I will flag this post with them again now. 

xx

Hi ownedbystaffies, 

I hope you don’t mind me responding here. My name’s Ellen and I work on the Community team here at Macmillan. A few of our Champions spotted your post and wanted to ensure we were aware it was here.

Thank you for taking the time to raise this. It’s really important to us that the Community is able to support all of its members and that everyone feels safe and comfortable to get support, in whichever way is most relevant for them.

We initially asked the group whether they felt they would like a space to discuss issues more specific to End of Life as we had received some feedback about an End of Life group.

The majority response at the time was that this was wanted, and needed for some members. As a result of this, we created the End of Life group on a trial basis to see whether this would be a helpful space for members to use. We then asked for further feedback which led us to the decision to keep the group, but to keep it sitting under the Living with incurable cancer group so members could more easily go between the two.

We never intended for the group to take anyone away from the groups that support them and nor would we want to put members in a position where they felt they couldn’t post in a place where they felt comfortable to do so. The End of Life group is there as an option for those who feel they would like to use it and we would like to reassure you that members are more than welcome to continue to get support from the groups they feel are most relevant to them and they are able to post in whichever group they feel best suits them.

Having said this, the Community team are always open to feedback and we are committed to creating a Community that supports everyone, no matter what their experience is. I know this has been raised more recently by and one or two others.

We would be really grateful to hear from you, and others in the group to better understand what you would like to see moving forwards. Please do post any of your thoughts below, and we'll look to begin another review of the groups.

Best wishes,

Ellen
Macmillan Community Team

Hello

I would agree with the previous comments. I don't like to think that anyone is missing out on support.

Thank you.

It’s a difficult decision.  Whilst I have incurable prostrate cancer I am not ready to face end of life issues yet. I’m hoping my treatment will keep me going for a number of years.

I would always consider myself incurable rather than terminal. 

Hi ownedbystaffies,

My recollection is slightly different although I am sure that some people did want to avoid certain topics.  Some of the members were saying that they did not feel that their views were accepted in the incurables forum.  Some members had posted about trying to prepare for death but the response was often that they should not give up hope and that it was wrong of them to do so.  As a result they felt excluded and that their situation was being talked down as other people could not face their reality and took over the thread.   When the possibility of the end of life group was discussed it became quite personal and several of the incurables who wanted to create an end of life group left the forum.

I supported the people who wanted to form the group and if it is not working then have no difficulty in people posting these discussions in the incurables group.  If I do not feel I can add anything to a discussion I am happy not to post.  However, if that is to be the case then I believe that care must be taken that their voices are not drowned out as they were previously.  My concern is that the members have not been able to offer enough support and understanding in the past and it might require the Macmillan staff to intervene quicker if this situation recurs.

Gragon.

Hi All,

Gragon, my recollection is hazy, I do recall there was some acrimony and some people left the forums. No voice should be drowned out, and I feel that those who need to talk about end of life should be free to do it, without being silenced by others who find it too hard to hear.

As I say, I had no objections to the end of life group being separated out if it helped, but I think it has not. A lot of people have joined the EOL group, but nobody has posted for ages and it must be really hard to join a group with such title and then to post if it looks like others are not. I dont know how many of those people also joined the Incurables group and are just watching for now. It would be good to hear from some of the recent joiners to the EOL group what they wanted from it and how it felt to find it an inactive forum.

Thanks to for already having raised it, and maybe others too. Glad that Macmillan are happy to consider views. I guess it would be good to have ideas for overcoming the problems which appear to have arisen in the split. For my part, I wonder if the two groups could cross post again but with some way of flagging that a post was originated in the EOL forum. People can then avoid it if they wish.

It is as you say Gragon an area that requires support and understanding, but who needs that more than those entering end of life? The onus would seem to be on those of us not there yet to offer it and to respect whatever people want to post, without trying to gee people up to positivity. I feel, like you, that if I have nothing useful to say, then not saying anything is right.

Absolutely no voice should be silenced. When it comes to our future no-one should disregard someones acceptance of their future. Hope is a great gift, acceptance is also a gift.  Wisdom is knowing when to hope and when to accept.

I hope when the time is right I can accept. I also hope I can live my life hoping that will be for many years yet.

Hi All, I think it is a shame that the people who wanted the End of Life Group seem to have forgotten about it now, maybe they could post here to say what has happened to this group and how they would like to move forward.

I agree with ownedbystaffies I think it would be good for the two groups to cross post again, so everyone can have their say! As suggested if maybe in the Subject of the post, it could be flagged up as sensitive or originally from the EOL group so that if people prefer not to read them, they are being forewarned and they need go no further.

Like some others here, if one of the discussions was about EOL care. I would be able to give support but if I didn't feel that was appropriate, I would not comment at all.

I completely agree with Gragon and his recollection of how it all came about. To be honest it's one of the reasons I do not very often post on this part of the forum.

I felt very strongly about the drowning out of people's voices when they needed to discuss some things and made personal decisions to no longer getting involved in areas of the forum I was actively trying to encourage help to all I could.

Since then, whilst meeting the 'criteria' to post as an incurable, most times I do not feel 'comfortable' to bring up topics here and only post in response to someone I am particularly fond of is asking for help here.