90%+ of Members Felt Less Alone After Joining This Community

[00:00:04] Announcer: You’re listening to Community Signal, the podcast for online community professionals. Sponsored by Open Social, community building for nonprofits. Tweet with @communitysignal as you listen. Here’s your host, Patrick O’Keefe.

[00:00:24] Patrick O’Keefe: Hello, and thank you for joining me for episode number 99 of Community Signal. On this episode, our guest is Priscilla McClay, online community manager at Sue Ryder where she has led efforts to build, grow, and measure online community at the more than 60-year-old charity which provides support around end of life care and bereavement.

If you enjoy the show, you can back it on Patreon at communitysignal.com/innercircle. Thank you to Dave Gertler, Serena Snoad, and Carol Benovic-Bradley for supporting our program.

Priscilla McClay has a BA in English literature and creative creating and a master’s in journalism. She has spent seven years working in digital in the nonprofit sector, five of which were in community management. Prior to Priscilla’s current job at Sue Ryder, she worked in the community team at Macmillan Cancer Support. Priscilla, welcome to the show.

[00:01:11] Priscilla McClay: Hi, thank you for having me.

[00:01:12] Patrick O’Keefe: It is a pleasure to have you. I had Serena Snoad on a while back, someone I’ve known for quite a while. She had a lot of really nice things to say about you and the work you do. Looking into your background, looked like it will be a great conversation on the show. I’m glad that you were able to make some time for us.

[00:01:28] Priscilla McClay: I’m glad to be here.

[00:01:30] Patrick O’Keefe: Professionally, you went from a very active cancer support community at Macmillan to a relatively new, at the time, online community focussed on end of life care. What was that shift like for you?

[00:01:43] Priscilla McClay: It was really interesting. At first, it was very challenging because when the Sue Ryder online community launched and I started in the role of community manager just a couple of months after it launched in 2015 and I was the first person in that role, it wasn’t big or active at all at that point because it had only just launched. It was a bit of a shock to me because I’ve been working in the team and on a very large, well-established community that had been running for years that has thousands and thousands of posts. Coming to something that was completely brand new and it being solely up to me really to kind of get it off the ground, it was quite daunting but it has been really rewarding as times gone on to see how it’s grown and developed and that people really have responded to it. There’s definitely a need out there that it’s meeting. I think it tested all of my skills a lot.

[00:02:39] Patrick O’Keefe: Going from a community or part of a larger team that was established, going to a new community where you can set the tone, set the foundation. A lot of time, we take jobs at established communities or places that already have an operation. But I have started communities before and I think that when you do that, it’s a different type of challenge but there’s a certain credibility that comes with it.

When you were there at the start, in the eyes of members, in the eyes of people probably at the organization that you were there from day one. When you say something or when you think that this is a challenge or that this is a concern you have, you have this credibility because you really helped to start this thing that is now so much bigger.

[00:03:18] Priscilla McClay: Yes, I agree. It was definitely a chance to take what I had learned and almost, I put it to the test, I suppose, in a more challenging situation. Yes, I think ‘credibility’ is a good word. You feel like you’ve earned it once you’ve built the community out from very early days. It gives you the feeling like you can be seen as a bit of an expert, I suppose, in this field, if that makes sense.

[00:03:40] Patrick O’Keefe: It does. I think it’s always harder to come in and earn the trust than it is to just be the one at the start who they actually ended up trusting because they enjoyed the community. There’s always a distrust at the start, which is understandable, from a community when someone new comes in so that you don’t have to deal with that. There are other things you have to deal with. Being new and maybe at relative and active and having to get things going. But you didn’t have to deal with being the new person coming in and then your intentions aren’t clear at first. I think that’s always a good thing.

[00:04:07] Priscilla McClay: Yes, there wasn’t really an established core of members who would have expectations of the community manager and anything like that because it was so new.

[00:04:16] Patrick O’Keefe: You consider that community to be a service offering. But at Sue Ryder, it doesn’t really sit within services, it sits in digital. Why is that?

[00:04:23] Priscilla McClay: Well, it’s not actually possible because of the nature of the organization. Yes, I do consider it to be a service because —

[00:04:30] Patrick O’Keefe: Because it is, right? [laughs]

[00:04:31] Priscilla McClay: Yes. It’s a peer support service but that’s still a service. It’s bringing people together and it’s helping them with the kind of situations and the emotions that they’re facing. Yes, it’s very different from the rest of the digital and marketing and communications which is my wider department which, obviously, all about promoting the services that we do have and, obviously, fundraising for them.

But the structure of our organization, of our charity, traditionally, it’s been very much based around physical services. We have hospices around the UK. There are services for patients and families based in and around those hospices. Unlike a lot of other healthcare charities, we don’t actually have something that’s like a national service. It’s all based out of those local services or that’s how’s been in the past. There isn’t really like a centralized services team for me to be a part of.

That’s part of the reason why the community has been a really important development for the charity because realizing that there are a lot of people out there who aren’t near one of our hospices and can’t benefit from those offline services. Trying to do something that would have a wider reach, and it’s not delivering the same kind of thing that you get in the hospices. It’s quite different, but it is really widening our reach.

For example, I do annual surveys of community members. What that shows is that, actually, the vast majority, up to 90% of our members who are using the community, they haven’t actually used any of the charities or other services. They’re a brand new audience to us, which is a really interesting and important step forward.

[00:06:10] Patrick O’Keefe: That is interesting because Sue Ryder’s been around for so long. It’s been around since 1953; has this huge, huge offline presence. Change is slow, you’re hinting at that, “This is how we’ve done services forever, for 60 plus years, and now this is sort of a new thing, so it’s in digital right now.” It’s amazing that you can bring so many more people. I think you told me that a majority of the people coming into the online community, it’s their first time connecting with Sue Ryder, is that right?

[00:06:38] Priscilla McClay: Yes, that’s right.

[00:06:40] Patrick O’Keefe: It’s amazing. You created a whole new channel for such an old charity.

[00:06:43] Priscilla McClay: Yes, it is a very old and well-established charity. But if you’re in an area that’s local to one of our hospices, some people will know a lot about us, and really support that local hospice. But if you’re in a different area of the UK and you’re not covered by one of our hospices, you might not really know what we do or you might know we have a charity shop in your high street, but not really know what it funds. It is quite an interesting situation to then develop this national digital service offering, that’s quite different to what we’ve done in the past.

[00:07:10] Patrick O’Keefe: Well, maybe you’ll be the catalyst that pushes it to a national service [chuckles] or this community be the catalyst for that.

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The Sue Ryder online community launched in June of 2015, and it came as a result of research that was done with service users of the Sue Ryder hospices. What did that research show?

[00:08:01] Priscilla McClay: It showed that there was a need for people to have a source of peer support and someone to talk to when they have a family member or loved one who’s receiving hospice care or who’s approaching the end of their life. They wanted to be able to talk with people who understood, to be able to access advice easily 24/7 and so on and that they wanted to be able to talk to people in similar the situations.

It also came out about that they wanted to be able to access expert advice as well. That led to us developing a lot of online information resources because we didn’t even have much online information as part of this project. Our website was mainly a place where you could go to find out about the offline services or to support the charity.

We also created some online information resources that try to answer frequently asked questions about terminal illness or at the end of life or practical concerns, such as tips to plan ahead for the care that someone wants to have by the end of their life and also, emotional issues, like bereavement. As you mentioned, that research because it was largely showing that people would need this resource, like pre-bereavement, when a loved one was dying. There was also some inclusion of bereavement support.

Post-launch, what we’ve actually found is that it has moved away from that a bit. Actually, the vast majority of conversations on the community are about bereavement now. The kind of palliative care, hospice care discussions make up much more of the heart of the community than we anticipated.

[00:09:36] Patrick O’Keefe: What has that meant for the community itself? I imagine when you first launched, obviously, you were there right after, but when it first launched it was responding to that survey, right? The need for information, the need for someone to talk to, they’re finding out the news that this is happening and it’s a big change, and they want someone to talk to.

Now, you’re finding that the majorities, after they have lost this loved one, how has that shifted in the community as far as your own strategy or organization or even the sections of the community?

[00:10:01] Priscilla McClay: It’s affected a lot of things in terms of our engagement strategy, the structure of the community and how we promoted it. Starting with the structure of the community, yes, it was launched with relatively fewer categories because we didn’t make the structure too complicated. But there were several categories around receiving a terminal diagnosis, treatment and palliative care and end of life and then a couple of different categories about coping with bereavement, both immediately and then more long term.

What I have done recently is actually to reduce the number of categories that focus on terminal illness and increase the number of categories that focus on bereavement because people want to connect with people in similar situations. There was an awful lot of discussions to wade through in the bereavement categories and not many and the others. By splitting out the bereavement categories a bit more, I’ve hopefully made it easier for people to find the most relevant content.

We now have three new bereavement categories which are around losing a parent, losing a spouse or partner, and losing a child. Those are the relationships that we found where there were the most people in those situations of the people who posted the most. They also gravitated to talking to other people who were going through those similar situations.

We do still have our general bereavement categories as well. If anyone doesn’t fall into one of those situations, or they want to talk about a general issue, then they can talk to with all users and they can still use those. But I think that’s an important change because the amount of bereavement-related content was quite significant. It was important for people to be as a filter of it and find the most relevant stuff.

[00:11:40] Patrick O’Keefe: That’s shift, right? That shift from pre-bereavement to bereavement and the use to the community. Why do you think that is? Is it because when their loved one is still here, they’re going to doctors, they’re seeing people, if they are having people talk to them, maybe more directly but after the loss occurs, maybe more often they’re not there alone?

They go home, they’re by themselves and they have it computed online and it makes more sense to them, they go online to seek other people then. I don’t know if that makes sense.

[00:12:07] Priscilla McClay: Yes, I think that is a possibility that if someone is, for example, being cared for through a hospice, then there is a lot of support for the family. That might be part of it, as you say, all through the hospital or whatever services they might…with bereavement, there definitely is a gap. We hear that from a lot of people that they have struggled to find bereavement support.

I think maybe this is speculation, but also, there are in the UK a lot of condition-specific charities and communities that offer support. If that person has cancer or a specific condition, they might be getting support from a community, like a cancer support community or a general cancer support community. There’s also various specific cancer type communities. There are those types of support out there.

Maybe if someone is getting support regarding their loved one having that condition, and then they get the news that it is terminal, they might still be likely to carry on getting that support in the condition-specific community because that’s where they are. That’s a possibility that they identify more as, “My loved ones has terminal cancer or another condition.”, then everyone with all terminal conditions coming to the same community. But that’s a theory, I don’t know how you would back that up.

[00:13:21] Patrick O’Keefe: When they are still in the moment of dealing with that specific condition, they’re more likely to gravitate toward an organization dedicated to that condition. But once they experience the loss, then it’s possible, it makes sense to me that they might shift to some other community or look to a different outlet, rather than staying in that community with people who are still dealing with that condition, I don’t know how to say this without maybe sounding insensitive, but still have a chance or still fighting that condition. That makes sense to me.

[00:13:45] Priscilla McClay: Also, what we’re finding in our community now is that although we are a hospice care charity and terminal illness was the original focus, not all the bereaved people that come to our community have lost their loved ones through a terminal illness. There might be a different cause of death, they might not have getting any support beforehand because they might not have been expected. That’s a very different situation.

Therefore, there’s a lot of those bereaved people out there who don’t have any existing support network.

[00:14:10] Patrick O’Keefe: That’s really interesting. They weren’t even part of the hospice care, it wasn’t the end of life, it wasn’t terminal illness. It could have been a car accident, it could have been a shocking death that no one expected.

I’m on your homepage right now, your community’s homepage. I’m going to read the titles of the conversations that are currently featured as the most recently active, just briefly. I’m going to start from the top. “Dreading Christmas”, “Year from hell”, “Not living, but existing”, “Writing the Christmas cards”, “Losing my dad”, “1 year today”, “Anxiety”, “Christmas without my husband”, “Loss of our son aged 27”, “Should I take pills?”, “Mum died”, “Can’t cope”.

It’s brutal. I’m tearing up a little bit just reading the titles. This is your day in day out as a professional. How do you personally deal with that? How do you stay optimistic? Self-care is important, we talk about that on the show. But how do you personally, just as a person, how do you cope with day in and day out of managing the community?

[00:15:05] Priscilla McClay: I think that’s a really good question. It can be quite emotionally intense. At Sue Ryder, I’m the only person working full time on the community. But there are some other people in the digital team who are trained in the moderation and so on because I need to have cover sometimes. I think the people that cover, for example, they say, “Well, I just did it during your holiday. I found it really overwhelming, so I don’t know how you do it all the time.”

It is a hard question to answer because maybe I don’t entirely know how I do that. But it was useful to me that I worked on the Macmillan community beforehand because that was a cancer support community. There was a lot of difficult content there as well, although, obviously, there was more happy endings as well. But that being a larger organization, it was good because I had a team around me then. We could debrief with each other which I think is a very important thing to do.

I’ve had to transfer that by finding ways to debrief with other people in my team now, even if they’re not full time working on the same thing as me. At Macmillian, as well, we also had some kind of support for the people who were working frontline. It was called ‘supervision’ which is a term from generally from people who work as counselors or in the case of Macmillan, people who worked on our helpline. It’s like a professional support thing where you can talk out.

Well, we had it once a month, when we talk about any issues in the past month that we found particularly difficult and why those particular issues might have phased us. It was just a good space outside of the day to day to just process and talk out some of that stuff.

Although I don’t have that now in my current role, I think I learned some really useful coping strategies from it. I’m glad that I had that experience before coming into my current role. The supervisor in those sessions, he used to talk a lot about restorative activities. Those activities, the draining, which can obviously include, working on quite draining content like that. Then there’s those activities in your life that restore you and charge your batteries back up. It’s about identifying and making time for whatever those activities are for you which is obviously different for everyone. I think that’s a really important thing to think about and something that I try to bear in mind.

I think that restorative activity, I guess that’s very similar in concept as self-care, which you mentioned. I also took away from those sessions that actually, it is okay to be affected by these things, to find it emotional, you don’t have to be some professional robot. In fact, if you’re the kind of person who’s not at all affected by it then maybe, you’re not really the kind of person who would get much out of working on a charity support network community where you’re dealing with these kind of things.

It is important to debrief sometimes and to talk about the most difficult issues. To be able to switch off as well, like with any kind of community or social media job, there is a temptation to take it home with you because it’s extremely easy to access from anywhere.

[00:18:10] Patrick O’Keefe: It’s right in your pocket.

[00:18:11] Priscilla McClay: Yes. I had to try and be really strict with myself about my holidays, my off days and my evenings or whatever. Not to get dragged into it because I think even at general, like social media or a regular community job, it could take over your life. But you have to be especially careful not to let it do that when the content is so emotional because it’s not just for time then, it’s all of the emotional draining of it.

[00:18:34] Patrick O’Keefe: I take up a lot of different things from your answer. I mean, obviously, taking time for yourself, restorative activities, having things that you actually like doing and having a life outside of your work. Being able to debrief, being able to have people to talk to. Several organizations make counselors available, for example, like being able to talk to people.

But one of the things that you mentioned that I thought was interesting, it’s just I guess the build-up of reaching to this point in your career, in other words, this isn’t your first job in this space and the charity space. You came from Macmillan. But even previously, I assume maybe when you were in school, you mentioned that you had done volunteer work in nightline, student peer support and listening service.

There’s something in you that gravitated you toward this role from early on when you said this is something that appeals to you, you want to do it. You want to help people in this way. You have something, I don’t know what that is. That something, however you describe, but also, that you’ve been doing this for a while to build up you to this point where you are running this community by yourself and can cope with it.

[00:19:29] Priscilla McClay: Yes, I think the build-up is definitely important because maybe someone coming straight to this community as their first community job would probably find it a bit more overwhelming. I guess I have learned a certain amount to not to entirely detach myself because I don’t think you want that, but to have a little bit of ability to remove yourself.

I did want a career where I was really making a difference and helping to support people. Although a lot of people, having a look at the community and seeing the titles as you did, would go, ” Oh, my God. This is bleak and this is hard going.” And it is. But there are great things that happen there as well.

We just had a discussion happening very recently where a number of people that had lost their spouse were reminiscing back to their younger days and saying things that they remembered back from the ’60’s. There were people saying, “God, it’s really cheering me up to talk about the old days with people who remember those times.” Just lots of people who really connect and people who you can just see the difference that it makes. People are so relieved to find other people who are in similar situations.

That, to me, it doesn’t seem to be all bleak because you can see amazing things happen as well even though there are good things in a really bad situation.

[00:20:48] Patrick O’Keefe: That’s a fair point. I know you can look at that, it’s like, “Don’t judge a book by its cover.” almost is the statement. Yes, you can look at those titles but beautiful things happen in online communities. People’s lives are being changed for the better.

You see that when you’re there on a day to day basis that these people who came in and maybe were not in the best state, now, because of being a part of your community, they’re able to go on with their lives or to live productive lives or they’re happy people that are helping other people.

To that end, I wanted to ask you about the members you retain. You help people cope with, again, we’ve talked about the end of life care of a loved one and a loss. But some people stick around long after that person is gone and maybe they’ve coped with that situation. Why do you think they stick around?

[00:21:34] Priscilla McClay: One of the things that I’ve learned from working here is that the process of grief is not really like a particular specific timeline. You can’t really say as to when someone will be over it and they’ll move on. A lot of the users actually say, “don’t get over it at all.” It’s more that they learned to manage and live with it. But that’s something that’s always there. It is a possibility for them to be triggered back into a bad day or bad period by some memory or some difficult time.

[00:22:05] Patrick O’Keefe: Ongoing support almost? They still need support.

[00:22:07] Priscilla McClay: There’s ongoing support. But I have also seen people who posted when they’re having more positive time to say things like, “Don’t give up hope.” or, “I’m feeling better.” That’s really interesting because it suggests a desire to give something back and to support other people.

That’s something that I hope will develop more as the community goes on because in a community with one-year long-standing members who’ve had support and who want to give something back to the community by supporting other people. That hope that that’s something we can bring out even more in the future because I think that’s really important to help communities grow and strengthen the relationships within them.

[00:22:46] Patrick O’Keefe: You are working on bringing that out in the future because you’re developing a superuser or volunteer program right now right now to tap into the willingness of those members to help others who are now going through what they went through. As you are looking at that program and developing it, what are some of the challenges that you see?

[00:23:01] Priscilla McClay: One of the key challenges is something that I guess I just slightly touched on in that. The ideal, like superuser is somebody who probably has come a little bit further along the process and does feel strong enough in themselves to be able to support others. But they are still vulnerable and there is still the possibility that they’re going to have bad times themselves. I still want them to be able to feel that they can use the community for support, that they’re not purely there to support others.

One of the things I really need to think through in this is how do we make sure that anyone who’s in our superuser or volunteer program with us doesn’t feel obligated to do too much or to just have to give and not take as it were, or to feel overwhelmed by the task of supporting others. There might be times when they need to take a step back from other people’s sadness.

I want to be very careful to set up in a way where there’s enough of them and also, they feel supported enough by Sue Ryder or by me as the community manager that they don’t find the role too much for them. I think that’s one of the key challenges.

The other challenge that’s important is that it’s difficult to anticipate how much stuff they’re going to report or how much support they’re going to need from me. But I’m aware of being only one person. For example, if they’re reporting stuff off hours, how quick a response are they going to get? I just don’t want them to feel that like they’re out there on their own and that they’re not supported by the organization.

These are the some of the things that I think through. But I do think it’s important to do because as I say, we are already seeing the beginnings of these tendencies of people to support others. I want to really encourage it because that’s a really important way that communities can grow. It’s an important way that you can increase the sense of community and the relationships within the community.

You can do practical things that just making sure that there aren’t posts sitting around without replies. The new members get welcomed. The issues get reported. That’s another important part there. I try and read as much of the content as I can, but as it goes bigger and bigger, then reporting problems is really important part of it. Not that we have that many, we didn’t really have moderation issues at the moment, touch wood. But bigger you get, the more the likelihood that things can happen sometimes.

The things that need to reported are not just moderation problems. But also they might be one, someone is at risk or something. We did have our safeline process that’s in place, but we need to be made aware of somebody who might require us to trigger that safeguarding process.

[00:25:25] Patrick O’Keefe: I’ve dealt with the volunteer moderators a lot in my career. I still do on the communities I manage outside of my day job. For most of us, that when we go to find volunteer moderators, at least for me, I look for people who, yes, they’re active and they’re really nice, great people. They’re exemplary members and they might be able to understand how the software works, right?

[00:25:43] Priscilla McClay: Yes.

[00:25:43] Patrick O’Keefe: In your case, you’re almost looking for something else. You’re looking for, I don’t know, not an X factor, but there’s something else there. It’s the person, the stage of where they are at, I don’t know, in their grief in their life, whatever it is. As you think about that, is there a certain type of person that’s going to be ideal for that? Is there a certain characteristic or a certain point they’re at, where you’re like, “Okay, this person could possibly do these things”? But if they’re not at that point, then they’re really not ready.

[00:26:12] Priscilla McClay: I think I’ll be looking for them already exhibiting the sorts of behaviors that you’d want the volunteers or superusers to do. I’d be looking for the people who are already posting in support of other people as well as about their own issues. In general, I would expect that probably most of them would have a little bit more time on from their bereavement that it wouldn’t be too raw and immediate. Although, that I wouldn’t care to put a figure on it because I think it’s very individual.

[00:26:38] Patrick O’Keefe: No, that makes a lot of sense. You mentioned before this show that in surveys you’ve conducted, you have found that more than 90% of your users found the community help them to feel less alone and to cope with their situation. That’s an amazing data point, right?

[00:26:54] Priscilla McClay: Yes.

[00:26:54] Patrick O’Keefe: That sets an amazing data point. What does that mean to you just managing the community, first of all? Then I don’t even know how you talk about that in the wider organization, like, “This is why we should be doing community. Look at this, more than 90% say that this helped them.” I’d love for you to talk a little bit about that.

[00:27:10] Priscilla McClay: It’s really important. It means a lot to me, obviously, to know that the community is having this impact. It is important organizationally and in terms of reporting to do these user impact surveys. Because a lot of community managers, that community is for a business. Their business goals are to deal with, is it making them sell more products or is it a support thing, like reducing cost, your helpline and resolving technical issues online or something. Quite measurable, right, those things?

Whereas if you have a charitable objective of, “We want to help more people cope with bereavement.”, that is a lot less of a simple metric to actually measure. You can measure how many people are visiting your community, how many people are posting, how many of them are active, which are all really important metrics for community health.

But you want to know is all that activity meeting our end goals. Some of those end goals were yet around supporting more people with bereavement and around and reaching and supporting new audiences that our hospices can’t support.

Doing the user surveys is a really important way to try to demonstrate that we’re actually achieving what we set out to do. Due to what I mentioned about it being, a really new venture and a new thing for the organization and the fact that this is our only national service at the moment, I think that means that, there’s fair amount of scrutiny. I suppose people are interested and people want to know how it’s doing. That reporting that I have to do, I feel that it gets attention to quite high levels of the organization.

Yes, it’s really great to have these metrics and be able to say, “This does give us evidence that we’re achieving what we’re aiming to achieve.”

[00:28:47] Patrick O’Keefe: Priscilla, thank you so much for being a guest on today’s show. I’ve really enjoyed talking to you.

[00:28:52] Priscilla McClay: Yes. I’ve enjoyed it too. Thank you very much.

[00:28:55] Patrick O’Keefe: We have been talking with Priscilla McClay, online community manager for Sue Ryder. Visit their online community at sueryder.org/community and follow her on Twitter @MillionMonkeys.

For the transcript from this episode plus highlights and links that we mentioned, please visit communitysignal.com. Thank you to Serena Snoad for her input into this week’s episode. Community Signal is produced by Karn Broad. See you next time for episode number 100.