Revolutionising bereavement support during Covid: Community Engagement

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Our Community Engagement Manager, Sally Muylders, has helped to diversify St Clare’s bereavement support during the pandemic – ensuring that the needs of bereaved individuals in our local communities are supported throughout the nation’s greatest challenge in decades.

Our Community Engagement team aims to connect local people together with others in their communities; whilst connecting communities together with the support of St Clare Hospice.

The team’s mission is simple; to encourage local people to help and support each other throughout death, dying and loss. However, during the COVID-19 pandemic, their usual activity ‘out and about’ in the community has had to diversify, to ensure that people can stay connected whilst faced with strict social distancing regulations.

With a focus on connecting local, bereaved people together during the UK’s ‘lockdown’ period, Community Engagement Manager Sally Muylders has stepped into the future – bringing the emotional and social benefits of St Clare’s Bereavement Café project into the online realm for all to benefit from now, and in the future.

Sally Muylders

Adjusting to the ‘new normal’

“When the UK lockdown period began, we were all advised to work from home. I initially thought that I’d have lots of time to sort out all those little jobs I’d never had a chance to do, and eventually, get my teeth into other, ‘big’ jobs. For example, continuing my work on launching a Community Shed at the Hospice in Hastingwood, or building a network of volunteers to help local people navigate the healthcare system when faced with a life-limiting illness. (Some little ‘teasers’ of what is to come later down the line!)

“On my last day in the office, I packed the stuff into the car boot and set off knowing that I might not come back to the hospice for a while. Well, that was three months ago – and I only got that stuff out of the boot last week!

“I soon realised that there were different plans waiting for me; that my previous work would go on hold. I’d be busy developing new projects to meet people’s needs during lockdown.”

“In those first couple of weeks working from home, I found it quite difficult. Half the time, I was having an existential crisis about what I was really going to do for the foreseeable future; you see, a lot of my work is all about bringing people together in a community space – whether they’re volunteers, St Clare patients or local people. I’m all about connecting people together in the room, to learn, share, and listen; but that wasn’t going to be possible anymore, due to social distancing.

“Even though I didn’t fully understand that the lockdown period would go on for such a long time; I did have an inkling that I was in this crisis where I didn’t fully know what I would be doing for some time. That was quite unsettling.”

Sowing the seeds

The Compassionate Neighbours team in December 2018
The Compassionate Neighbours team in December 2018

“On the other hand, I knew that it was fortuitous for my team to have sown such powerful seeds in the past few years at St Clare.

“In 2018, we’d launched the Compassionate Neighbours project at St Clare, bringing together a team of incredible people who wanted to volunteer their time to help tackle social isolation. As an organisation, it signified that we’d started thinking about how we can harness the power of volunteers who have some autonomy in their roles at the Hospice; and elements of ambassadorial characteristics to help spread the word of St Clare.

“We’d also sown the seeds of the Bereavement Café project, bringing together another group of volunteers who were the volunteer facilitators. For Compassionate Neighbours and Bereavement Café, the most important part of both projects was always the volunteers.

“As I started to realise my ‘new’ role during lockdown, I felt really lucky when I reflected on what we’d achieved over the past few years. Those groups of people whom we’d brought together and nurtured as a team for the past couple of years were about to play an instrumental role in diversifying the support we had to offer local people throughout the pandemic.”

Diversifying bereavement support

“Since 2019, I’d been raising a little ‘extra-curricular’ project, outside of my role at St Clare, called ‘Bereaved Sons and Daughters’. I initially set up a Facebook Group alongside the project, as a marketing tool, to help me promote ‘meet-ups’ for those who had lost a parent in my own local community of Billericay.

“Similarly, to St Clare’s Bereavement Café project in West Essex, the aim was to meet and connect – face-to-face – with other local people who had also lost their mum or dad. However, it was the Facebook Group that had caused a bit of a realisation for me…

“Within weeks of setting up the Group, 120 local people had joined it because they wanted to meet and connect with others who knew how it felt to lose a parent; something that happens to all of us, but is never easy.

“It confirmed my own beliefs even more: that sometimes, the best kind of bereavement support you can get is through talking to others who understand.

“I’d hosted our couple of ‘meet-ups’ with Bereaved Sons and Daughters at a local venue, just before the pandemic had really hit the UK. It went really well. We had the date in the diary for the next one, but then the lockdown came into force, so we had to cancel it. I decided to try and bring everyone together on Facebook instead, and encouraged our members to share a photo and a memory of their parent within the Group, as a reflection and memorial.

“It was phenomenal. Double the amount of people who’d attended the first event participated – all sharing, and chatting, and resonating with one another. I even had feedback from people who said they’d never want to attend a group in person; but that this online support was so much more accessible. We were reaching new people.

“It dawned on me that what I’d created was this inclusive, self-sustaining community, full of like-minded people who were each providing a network of social and emotional support for each other.

“It was beautiful. This was the moment that I realised we had an opportunity to develop a similar online community for the Bereavement Café project at St Clare Hospice. I’d finally found my calling whilst working from home!”

Bereavement Café Online Communities

“In May 2020, our Bereavement Café project entered a new phase – the online community phase. We have set up six, local Facebook Groups, and a Youth Bereavement Café Group available to people aged 18-30, to help connect bereaved people in West Essex even whilst in lockdown.

The online communities provide a ‘virtual’ space for local people to engage with in a way that best suits their needs. Whether it’s meeting and talking to others, recommending supportive resources, sharing experiences or simply reading about what others have shared. Anyone who has experienced the loss of someone close to them, no matter how recent or long ago, is welcome to join a Bereavement Café online community, and it’s completely free to join.”

You can read more about the Bereavement Café project, and find your local Facebook group, by clicking here: stclarehospice.org.uk/bereavement-cafe

A person sits in front of a laptop looking at a Bereavement Café Facebook group
Bereavement Café online communities

My experience

“On Monday 25th May, it was the 2 year anniversary since my dad died. And I have a message for others… I spent my entire adult life feeling anxious about my parents dying, knowing that, eventually, the day would come. I was really obsessed with it, and imagined that when one of them died, I’d fall apart.

“When my dad did die, it was the worst thing that had ever happened to me. It was the worst day of my life. But I’m alright.

“I’m alright – I survived – and that has released me from that anxiety I held for so many years. However, there are so many people, like me, who don’t know that they too, will be alright. They hold the same anxiety that I held for so many years.

“I think that lots of people harbour this idea that their lives will completely fall apart when they lose a loved one, because we as a people don’t talk about bereavement and its impact. It’s shut away, and we think people grieve only in private. But actually, bereaved people are walking around among us all the time! Of course they are; everyone, sadly, has to face loss at some point in their lives. But we don’t realise or think about the fact that they do, because these people look alright! They are alright; they’re functioning.

“It’s something to do with… When the worst thing that you can possibly imagine happens to you, and you survive it, you can do anything. I need to tell people that.”

“This realisation came when my friend, Elaine, came round to my house a few days after my dad died. Elaine’s parents had died a few years earlier. She said to me, “You think you will fall apart, Sally, but you won’t. You will get through this, and you’ll be OK”. It was the most powerful thing she could have said to me. She knew then, what I know now.

“If she hadn’t said that to me, it would have taken longer for me to realise that I did indeed feel alright, and that it was OK to feel normal, and to function normally!”

The importance of connections

“What I’m trying to do at St Clare, is bring people together who have been bereaved. I want us all to connect in our experiences, like I did with my friend, Elaine.

“There are feelings and thoughts that we probably all share, but we’ve just got no opportunity to verbalise that and resonate with others – so we can each realise that we are not alone in our grief.

“Of course, all bereavements are different, but I want to help people to understand that on the whole, most of us have got the internal resource and resilience to, A) Manage a significant event in our lives like bereavement, and, B) Support others through bereavement – which we all also think we cannot do!

“Bereavement has been so pathologised due to the fact it’s not spoken about, nor seen as a normal part of life, that we all think we need to be a professional to help other people, but we don’t. Most of the time, all we need is a listening ear and to connect with others who know how it feels.

“That’s what I believe: the most meaningful bereavement support is from other people who have had similar experiences.

“I believe that professional support should be reserved for only a few who really need psychological support. Yet, it’s due to the lack of opportunity in society to meet others who will talk about being bereaved, that everyone asks for, and thinks they need, counselling.

“I’m not the only one who thinks this; we know that this kind of ‘lighter-touch’ support encouraged by the Bereavement Café model is important because we have a team of volunteers who are committed to helping deliver the project. Lots of them are bereaved themselves, and they see the value in this project because they know what has helped them throughout their journeys.

“A survey we conducted in 2019 also concluded that support from friends, family and neighbours is most commonly effective as a means of support after bereavement (according to 76.5% of participants). 68.4% of participants said they wanted to see St Clare deliver drop-in services, and 56.6% said they’d like to see social groups. It’s the social and emotional support that is most effective.”

The impact

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“So far, we have achieved 500 attendances from local people at a Bereavement Café. And we hope to reach many, many more people through our online communities in the coming weeks. We want to continue developing this arm of the project, too. Not just as a response to the pandemic, but as a valuable facet of the Cafés that will help us to reach new audiences, in new ways.

“I feel increasingly confident that our approach to bereavement support is new, needed and will be successful. People are asking for it, and we are delivering.

“Developing the Bereavement Café project in this way has also led to personal revelations for me, about my whole career and work.

“Being a youth and community worker for all of my adult life, I’ve always been about bringing people together, meeting and connecting – ‘the more the better’! I now realise that while that remains important, my focus has been at the expense of people who would never come to a social group because they cannot, or they do not want to. Everything I have done up until now has excluded those people in some way.

“But developing online communities has shown me that there are spaces that can be created to reach different people who previously may have felt isolated. This new way of working needs to be integrated into my work, forever. Because I believe that nobody should face their journey alone.”

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