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Welcome to Together in Loss, a website dedicated to a Winston Churchill travel fellow’s adventure across America, an exploration of grief support services across the USA for the benefit of the U.K.

As of 1st February 2018, Dr Erin Hope Thompson (me!) will spend 6 weeks travelling across America meeting with bereavement support organisations to learn about their models of support, with the aim of bringing back recommendations to implement for improving grief support in the U.K.

Keep posted on the latest blog updates below. Enjoy!

Last sentiments

My trip has come to an end.

I was going to write, “Sadly, my trip has come to an end.” But there really is nothing to be sad about. After planning my trip for a year I am naturally a little heavy-hearted to see it come to an end, but there is SO MUCH to be grateful for and excited about.

I have not been able to share every detail of every meeting in this blog because there’s never enough time, and that’s what my more formal report for the Winston Churchill Memorial Trust (WCMT) will be about. Whilst here I’ve also taken the time to explore other sources of grief support across the States – these are not organisations I have met with but have instead explored online. For example, the American Cancer Society, Modern Loss, What’s Your Grief, and more. With a country as big as the USA, I could spend years exploring avenues of support here. But if I did that I’d never have the time to take what I was learning back home to the UK to make some changes.

I have learned so much more than I could ever have hoped I would on this trip. And it’s not all been about learning what we can do better back in the UK, but it’s also been possible for me to become more clear on what we’re already doing really well and how we can expand those elements. It has also helped me feel confident that I can build The Loss Foundation to be the kind of organisation I always hoped it would become.

I have met local organisations, national organisations, hospices and medical institutions, non-profit and charitable organisations, those supporting the young, those supporting the old, those supporting the forgotten middle-agers, some supporting all ages, those with hardly any money behind them, those with lots of money behind them, people who make big decisions that effect thousands, those that sit by others when they take their last breaths, people who have built universal support networks out of their personal loss, people I had scheduled to meet months in advance, people I had scheduled to meet hours in advance.

I have experienced the differences between the level of activity an organisation provides and the way the organisation itself makes you feel. I have experienced and witnessed unbelievable kindness.

I have made friends, I have made connections, I have made memories, I have made plans.

I have cried when I’ve seen support in action. I have laughed when I’ve seen support in action. I have been inspired to do more when I’ve seen support in action.

And lastly, I have never felt more grateful for what I have. I tell people regularly that my bereavement work is the best perspective provider. I’ll run a support group in the UK and hear stories of tragic loss and pain, and it’s utterly heart-breaking. And it’s always been the biggest reminder to me to tell my mum, my brother, my partner, all family and friends that I love them. Because I know that life can take a turn in a day, and they or I will not always be here. It’s important to me that they feel loved by me whilst we’re here together.

This trip has been the biggest perspective providing experience I have ever had, and in multiple ways, personally and professionally.

My six weeks have been nothing short of incredible. I am so very grateful to the Winston Churchill Memorial Trust for giving me the opportunity to explore an area of work that is my passion. It has literally been a dream come true.

It has also been really fun to consolidate what I’ve learned by writing this blog, and it will be an extra bonus if anybody reading it learned anything new.

Thank you for sharing my journey. After reading this, why not take the chance to tell someone you love that you love them? 🙂

Two lasting photos from my trip…

I have met so many of these
Some of the answers were there to begin with

(Eternally grateful) Erin, x

 

Some photos from LA

A few photos from the last part of my trip, 12 days in LA… x

Amazing wall art everywhere
Movie stuff everywhere
Winston is everywhere
Oscar cookies
Books, books, books
Even a closed down vinyl shop embraces loss
Obligatory pancake breakfast
Muscle beach
An LA comedy show
Love this
Santa Barbara art market
View from Santa Barbara university campus!!
Women in science. Yes!
I love sunshine
The piece de resistance – a few days with family xxx

Lennon & The Dinner Party

My last meeting in LA was with The Dinner Party (TDP), who happened to be the first meeting I had on this trip too. I met with one of their founding members, Dara, in San Francisco, which you can read about here. This time I was meeting with Lennon, co-founder and Director of TDP. It felt special to start and end my trip with them because I am a big fan of their organisation.

Having already spoken a bit with Dara about what TDP do, my conversation with Lennon focused a lot on what helped them become who they are today, which is a very beneficial and international reaching organisation.

Lennon and Erin

Lennon said they almost consider themselves the punk rock of bereavement support. What does she mean by that? Well, they have very successfully created a brand that is something people are not embarrassed to recommend to their friends. In the world of bereavement support you’ll often see a website with candles in the wind, suns setting, an angel in the sky, etc. In other words, images of bereavement that are not representative of every day life when you are grieving. TDP have vanquished the old-fashioned look at bereavement support by creating a very cool organisation that people want to be supported by and tell their friends about. Massive kudos to them. They do it brilliantly.

And they do this by concentrating on relatability, aesthetics and the ‘we’ pronoun, which Lennon said has been transformational for them. No ‘you’, no ‘I’, just ‘we’. In other words, TDP stand with you – they are in this with you.

For TDP the focus is not grief but isolation. When TDP started out it was about finding friends. It remains so still, rather than a focus on changing grief. TDP isn’t necessarily for people who need a support group or who are struggling with a particular part of their grief. It’s not about therapy or leaving less depressed. It’s about people who want to socialise with others who have experienced something similar and talk about it over dinner. It’s a great model, and clearly there are a lot of people who want exactly this. With 30 tables hosting dinners in LA alone, this is a fast-growing organism.

Expansion happened reasonably quickly with TDP, and with that came the realisation that they needed to pause to reorganise things to work more efficiently so there wouldn’t be long waiting lists for tables or communication. So TDP took a very brave step. They took a “radical pause.” They pressed pause on accepting new dinner party guests for a good few months so they could get things in order. Lennon admitted she was terrified by the radical pause, as I would be too! You may fear that people won’t come back to you for support, or that they’ll take a pause as a negative sign from an organisation. These are fears I would have, which is interesting because when I saw TDP had taken a pause a few months back I was hugely impressed. If anything I respected them loads more. It was a sign to me that this organisation cared about how they grew and the quality of service people were getting when they came to them. So many organisations could benefit from a radical pause. Bravo TDP!

Like any grass-roots non-profit organisation, money is a barrier. But I don’t see this standing in the way of TDP in the long run because their model is like no others I have come across, not just in what they do but in who they are and what they represent. The world needs TDP. And for those reading this blog from the UK, check out TDP’s website as they also host dinners over our way too.

When our meeting finished and we were about to part ways, we hugged goodbye, and Lennon said it was great to meet a fellow soul sister. That’s what it feels like in this world of people setting up and working in grief support. We are like-minded souls trying to break barriers and help spread the essence and beauty of supportive communities.

I really, really liked Lennon. She’ll be a world-changer. She already is. I hope our paths cross again soon.

And that’s a wrap on my meetings. Wow, what a wonderful whirlwind.

(Reflective and grateful) Erin, x

Jacob

A friend put me in touch with a friend of hers whilst in LA. I love meeting new people and I’ve done very well out of friends of friends!

I got told I HAD to meet with Jacob. After trying to make two busy schedules come together, we finally made it happen, and I’m so glad we did. Jacob is another person I’ve met whilst here who does not work in the world of grief (although he is very interested in it) but something entirely different – applied entertainment.

I’d not heard of that phrase either. I can’t pretend I’m knowledgeable enough to describe it eloquently or even correctly, but it’s essentially thinking about how we use any forms of entertainment to effect behaviour change. For example, the gaming industry or film or books, etc. Behaviour change applications are all around us in so many different forms. For example, Fit Bit, which shows you your level of activity and in doing so increases your motivation to be active. Wouldn’t it be cool to positively effect behaviour change through applied entertainment?

We had a discussion about embracing technology to help people help themselves better but also others too. Jacob told me about Be My Eyes, an app that allows you to lend your eyes to the blind. You can help blind people with everyday tasks. Visually impaired users can request help from a sighted volunteer. A live-video connection allows you to assist the impaired user, for example, they might be making lunch and they’re asking if the can on the left or right in front of them is the chickpeas.

Be My Eyes app

I signed up to it. I’m waiting to be notified when someone needs help and then I’m going to try it out. I’ve been told by the app that I’ll receive a notification when someone needs help but that it might take some time because they have so many volunteers. I’ve never heard that before!

That’s a LOT of volunteers
Brilliant!

The easiest and smallest act of kindness can change lives, and technology is a wonderful tool to help facilitate that. It’s much easier for people to volunteer to help someone for 5-minutes using their phone than it is for them to carve out larger chunks of time at specific locations.

We spoke about scaling up with this kind of technology or approach in mind. It’s obviously hugely important to maintain quality when scaling something up – the reputation of an organisation is contingent on the quality of support being provided. Good quality care also increases the chances of a person wanting to continue a relationship with an organisation.

Jacob and Erin

Our discussion went on to talking about the various models of scaling up, with and without technology. Suddenly we were talking about a project we’d love to do together. It happened again – meeting someone outside of the world of grief led to collaborative ideas on how to better increase grief support.

Scaling up is about collaboration. No doubt about it.

And LA is full of creative people!

(Buzzing) Erin, x

Our House, Los Angeles

Next up in LA was my meeting with Michele Prince, Executive Director of Our House. Founded in 1993 by Jo-Ann Lautman in response to recognising the lack of grief support, their mission has always been to provide safe and comfortable spaces (support groups) to help people start the process of rebuilding lives after the devastation of the death of someone close. They support children and adults.

Michele shares that the model evolved a lot at the beginning but has remained steady since then – they started with groups for adults and children and that will remain their main focus and provision. Along with this they do a lot of education, for example, training nurses and other professionals in contemporary models of support. Training is provided for free in some cases and for a fee in others (if a company is sizable and has the money to pay for it, there is a charge). And they do on-site grief response when there has been a death in a workplace, congregation, school, etc.

Our House is another organisation providing child bereavement support that does not follow the Dougy Centre model. Michele says they take a slightly more clinical approach. There are some similar elements, such as the splitting by ages, but they are less play oriented because they believe it’s equally or more important to focus on grief. Their clinical focus encompasses utilising Worden’s tasks of mourning (this has been a very popular approach across the organisations I’ve met). This also means that their pre and post measures encompass questions related to Worden’s tasks/objectives. The questions they ask are their own rather than any validated measures looking at specific constructs. I ask what their main finding is? “98/99% would recommend one of our groups to another child.” It sounds like more of a qualitative focus than anything quantitative.

Some of the work on the wall

Space is also an issue here in LA much like it is for the organisation I met in Miami, which means hosting groups for kids and their caregivers at the same time from the same location just isn’t possible – there isn’t the space for it. Our House have a great approach to lack of space – their daytime offices are support group spaces in the evening. Apparently this approach has been very favourable with funders – it’s a great use of resources and it means less relying on spaces in the community to be affordable and reliably available.

A group space that is part of one of their offices
Office by day, group room by night

They currently have 450 volunteers and 24 staff members, and with those numbers manage to have a high volume of service. Volunteers mainly get involved for personal reasons but they have an increasing number of student interns as the work with Our House counts as a credited placement for them.

So who funds this machine? They function without any government funding, and rely on grants and donations. Michele admitted it’s hard to fund-raise. They also charge for some of their support services, for example, there is a sliding scale for their adult support groups (they can pay anything down to $1 but $35 a session is the suggested amount). Michele believes paying can help with engagement. Their school support (the run groups in 60 schools) is free, their camp places are free (they run two Camp Erin weekends a year), but they again offer a sliding scale for the children support groups run from their locations.

A house with a tile for each their biggest supporters

Michele told me about a documentary they contributed to, One Last Hug (and a few smooches). Three Days at Grief Camp. This was a HBO documentary about childrens’ grief and centred around a weekend at Camp Erin. Filmed in 2012, it aired in 2014 and went on to win an Emmy award. That’s a pretty big deal. Given that grief is hard to talk about for so many people, it can be a topic that people do not want to engage in, so it’s great to hear about grief support being publicised in the media. It’s even more exciting that a company as big as HBO took it on, and exceptionally exciting to hear it won an Emmy. More of this please.

A poster for the documentary (and my reflection ruining it)

So, what’s the future for Our House? “Continuing as we are but doing more and efficiently,” says Michele.

They say on their website, “From a staff of two to now 24 employees, from one group room to 11 group rooms in three offices, over 450 volunteers, satellite and school groups throughout LA County, OUR HOUSE serves grieving children and adults of all races, religions and ages, from 4 to 94.” That is scale to be proud of without a doubt. Michele was able to give me some exact figures she had just received – in 2017 they supported 23,000 people across all of their programmes, 3,400 are with their direct services, and this is a 16% increase on the year before.

What did I think was most different and interesting about them? I tend to come across organisations that are either solely focused on children OR adults, but Our House provide for both. I was also intrigued by their use of resources and space, as well as their deviation from a widely adopted model to stick to what they believe is inherently more helpful. Thanks Our House for giving me more food for thought.

My drive home. This is SO LA – cars everywhere, but palm trees and pretty skies too

(Hating driving in LA) Erin, x

 

Kaz, Curious Catalyst

A friend highly recommended meeting with a friend of hers, Kaz, whilst I was in Los Angeles. Any suggestion this particular friend makes is a DEFINITE YES for following up with, and Kaz very kindly agreed to meet me.

Kaz does not work in bereavement. She runs an organisation called Curious Catalyst, and does really cool and interesting work discovering opportunities for innovation and impact in cities. When I met her she was in prep mode for running a workshop on the pursuit of mastery. (She spoke a bit about the factors that contribute to mastery: imagination, narrative, embodiment).

As soon as I met her I realised why my friend had suggested it in the first place. It was like looking at my mind in the mirror – we were talking about the work I was doing and she asked me the most interesting and thought-provoking questions I’ve been asked across the whole trip – the questions that have been circling my very own mind. Woohoo!! It was exhilarating and inspiring to meet with someone who was fuelling my fire in minutes.

Erin and Kaz

One of Kaz’s first questions was whether I have been visiting organisations with set questions in mind or whether it has been about getting a feel for an organisation. It has been both. Of course I have had curiosities in mind for each of the organisations and people I have visited, but how an organisation makes you feel is equally as important, if not more so. I say this because I want The Loss Foundation to be an organisation in which everybody who comes into contact with us feels our values without reading them on our website. That’s a whole other discussion.

Kaz and I spoke about loss, taboo, innovation, mastery, trying but not trying too hard, taking risks, saying no, the importance of technology and humanness. Our conversation went in so many interesting directions. I can’t summarise the conversation here well enough to do it justice, but it did get me thinking about so many things. And I thought I’d share a couple of the really cool things she shared with me.

Firstly, the New York Times article written by brilliant author (and doctor) Siddhartha Mukherkee about cats and robots predicting death. Yeah, you heard me right, cats and robots. It’s an article that poses fascinating questions about the challenge of predicting death in those that are terminally ill.

She also told me about Death Over Dinner, an organisation that is inviting you to have difficult conversations over interactive experiences. The first sentence on their website: “How we want to die – represents the most important and costly conversation America isn’t having.” They have transferred the question into an uplifting interactive adventure with the aim of transforming the difficult conversation into one of engagement, insight and empowerment. Anyone can do it. Follow their intriguing online prompts, such as the one in the screenshot below, and get sent all you need to engage in the experience.

One of the online prompts on the Death over Dinner site

And another one that came up, On The Table, which is a strategic initiative run by the Silicon Valley Community Foundation. They provide a kit for hosting a dinner along with a theme to discus for the night. It has spread nationally, which means thousands of people end up talking about the same topic on the same evening across the country. Their last dinner, on November 2015, had 700 hosts leading conversations with 7000 participants.

After talking about different organisations doing cool things, and reflecting on the change I’d like to make back in the UK in regards to grief support, Kaz asks me, “What’s your end game?” I tell her I want equality in bereavement support across the UK and I want The Loss Foundation to scale up to be a part of that, but I don’t quite know what that looks like yet. Then ensues a really thought-provoking conversation about how to extend impact and she tells me about a Stanford Social Innovation Review article on exactly that topic.

Needless to say I left Kaz feeling full of beans. A meeting that was not on my agenda, nor related specifically to bereavement support, ended up being the most inspiring. Now, more than ever, I am reflecting on the value in joining forces with people who don’t work in my world to better those in my world.

This trip is the gift that keeps on giving.

(On top of the world) Erin, x

Heal Grief, Los Angeles

I made it back to the west coast for my second leg in California, all of which will be based in Los Angeles. First up to meet with – HealGrief.org

HealGrief is a social network, providing support online. I was eager to meet with them given how different their support model is, being marketed as web based only. I met with Fran Solomon, Founder and President of the organisation, at her very beautiful home in Beverly Hills. She took me back to the starting point for her…

Fran used to be a career woman over in New York. Her dad died in 1998 and she adopted a very practical approach to her grief for a short amount of time, and then metaphorically packed those feelings away in a box. She moved to LA, got married, had a child and then boom! Back came those difficult feelings. Fran noticed that having a child triggered grief for her in a really big way. She said her father wanted nothing more than to be a grandfather, and now here she was a with the thing he wanted most but without him there to share it with.

Fran felt a pull to help others losing parents and she trained as a facilitator of groups with Our House, another grief support organisation in Los Angeles. She learned a lot about her own grief in the process, and soon realised that running groups was not her calling (she was taking the distress home with her too often) but wanted to be very involved with the organisation. She ended up as one of Our House’s board members for 8-years.

Fran and Erin

She noticed that people started contacting her regularly looking for support nationally, and this spurred an interest in online support that could be accessible to all. Fran decided to lead that ship herself and set off to build HealGrief.org, which officially launched in 2014. Fran said she had to search high and low for good and helpful grief support information online, but recognised that the people who are searching might not have the energy to do that, so she wanted to make something more accessible. It was initially going to be an online database of grief support and resources across the States, but ended up developing to have many different elements.

So what exactly do they do? I’d say all in all their work falls under one of the following categories; online memorials, grief info, sharing projects, and student support.

Let’s start with online memorials. HealGrief market themselves as taking over the traditional obituary. People can go on the site to write an obituary that can be seen by anyone and is free of ads. People can upload photos, and light online candles in memory. Fran says some people go online and write something once, others go online to write regularly, creating what she believes is a legacy of someone that can be seen by their children’s children.

Secondly, we have grief info. The site houses a lot of information on grief which seems to be separated into different categories for ages and types of loss. Fran says they do a lot of research to source the info so people can learn how to cope and understand grief. From a quick glance it seems the model of grief they share is the 5-stage model (Kubler-Ross) which, as many of you might know, is not actually a model of grief (it was designed as a model for people under palliative care). It is quite old-fashioned and outdated by more modern models of grief.

Thirdly, HealGrief are very open to sharing loss-related projects online for all to see and get involved in. For example, The Loss Project, created by Susan Mah as an artistic exploration of the human condition as it relates to loss. Peoples’ photos are uploaded and shared. Another project they’ve shared widely is the Before I Die wall. These are just a few projects HealGrief hosts on their site, and Fran says more projects are welcome, “We want to collaborate with other in order to serve more people.”

Loss Project photo

Fourthly, and this is my favourite part of HealGrief, is their student support arm, Actively Moving Forward (AMF). AMF was taken over by HealGrief from it’s initial Founder, David, who became too unwell to pursue it. AMF is a program that connects college students who are grieving so that they can create their own spaces on campus to support one another. A student who gets in touch with HealGrief will be directed to their campus support or given all the tools needed to set it up themselves. They currently have support on 30 campuses.

With 6,000 new visitors a week on their site, and 34,000 Facebook followers they are clearly quite popular. I ask what is the most popular element of their website. Fran says it’s online obituaries, those looking for information on grieving the loss of a child, and their Pets Count Too section. Yep, another organisation providing pet bereavement support. Fran says she was initially hesitant to do this until she thought about it from a particular angle – a child’s first experience of loss is often a pet, and helping them grieve a pet can provide them with a life-long ability to be able to be in touch with grief and difficult feelings rather than avoid them. “A pet is a family member for people – why should their grief be treated any less?”

What’s the benefit of online support, I ask. “We’re open when their doors are closed,” says Fran of in-person support organisations. Very fair point – anyone can access online information at any time of day and whilst at home in their pyjamas.

What’s tricky about online support, I ask. A lot of money is needed to host a very interactive and responsive website with all the functionality required to make it a beneficial experience.

What’s the future for HealGrief? Webinars and online support groups, and increased collaboration with other organisations says Fran, as well as having AMF student support on every campus across the States. She dreams big this one, and I love that. These aren’t dreams for Fran, they are plans.

Big thanks to Fran for welcoming me into her home for a really interesting meeting. It was useful to meet with a different type of organisation to those I’ve been meeting with on my adventure, and given we now live our lives on the web, it’s hard to ignore that online support will be a big part of all of our futures. It’s ironic that my personal favourite across HealGrief’s services, which are all online, is their in-person support option for students. But that’s because I’m an in-person kinda person.

(Scared and excited by technology) Erin, x

Some photos from Florida

A few photos from my 16 days in Florida…

Patriotism even on the beach
Community pool
Old school cinema
Modern day cinema
A toolbox for kids from Suncoast Kids Place
At Camp Erin campgrounds
Reading on the beach
Fun fact
This gym gave out free pizza and bagels. So I joined.
The biggest and best fruit /smoothie stall
The Everglades!
Spot the alligator
Spot the alligator
My mum is going to kill me
So much wildlife
So many herons (that is a heron, right?)
So many of them
Marsh central
Jeez!

CBC, Miami

My last stop in Florida was in Miami to meet with the Children’s Bereavement Centre (CBC). I met with Mindy (Founder and CEO), Chira (COO) and Daniel (Chief Program Officer). Our meeting, initially scheduled for the morning, got moved to the afternoon because CBC have been very involved in responding to the recent school shooting further upstate.

So obviously my first question was about how they’re responding to the shooting. Mindy explained it’s much more about outreach than crisis response. As I’ve learned and mentioned previously, schools have their own crisis teams that respond, so organisations like CBC focus on getting into communities to share what they do so the appropriate referrals can be made to them for support.

How did CBC get started? Mindy worked as a psychologist and noticed a lack of grief support for kids in the area (a common starting point) so her and a colleague started researching how to start something to fill the gap. They went to the Dougy Centre to learn about what they did. They did some research. They opened a group for people to chat amongst themselves. One year later it had 100 attendees. They threw in the addition of a facilitator. And it continued from there.

To achieve its goal of helping families adjust to the loss of a loved one, the CBC utilises it’s ‘Healthful Grieving Model’, based on attachment theory and the dual processing model of grief, which includes the following principles:

  • Grief is a normal, natural and individualized process.
  • People have the ability to heal at their own pace, in their own unique way.
  • The intensity and duration of grief is unique for each individual.
  • A caring, accepting environment greatly enhances the healing process.
  • The camaraderie among grieving individuals plays a vital role in their healing.
  • The group experience helps children and adults regain a sense of control and empowerment.

So as you can guess, CBC’s main provision of support is running groups (open-ended, no curriculum, loosely themed). They have 9 group sites and are opening their 10th this year. They say it’s all about helping families come together to share a language of helpful grieving.

However, they don’t follow the Dougy Centre model like so many other organisations working in children’s’ grief support. Why not? Mindy thinks the Dougy Centre provide a good model for training, but she is not a fan of having children going from so many rooms to rooms (talking space to art space to emotion room to medical room, etc.). She says they do also separate kids by ages and embrace many of the therapeutic elements (games, art, songs, talking) but in one room, which she thinks creates more interaction. Space is also an issue for the room swap model – in a city like Miami there is less opportunity to have endless space to play with.

I spoke about going along to a kids’ bereavement camp recently. Mindy wasn’t the biggest fan of the traditional camps saying that she thinks they imply/assume a quick fix. That’s not the impression I had gauged, but I did agree with her next point about the segregation traditional camps can build between kids and their caregivers in terms of grief work. Mindy said CBC have done camps before and for part of their camp program they brought caregivers in for part of it, e.g. the kids and caregivers doing certain exercises together.  This is fitting with their approach of bringing families together in loss.

With a name like Children’s Bereavement Centre it might be hard for an adult looking for support to realise that it’s available to them at CBC, even without having participating children, but it is there for them in the form of adult only support groups. And their new inner-city program is aimed at reaching and supporting the more diverse communities in Miami that are not accessing support, despite high need in their areas. They aim to increase access by having volunteers speaking other languages and having groups run from within the communities themselves. “We need processes, procedures and people to grow this.”

CBC had recently hired Daniel to clean up some of their programs and to focus on the data / research side of things. He told me about some of their service evaluation and outcome measures. At a first group session a questionnaire is filled out that encompasses questions on social support, continuing bonds, positive growth and the Hogan Grief Reaction checklist (Nancy Hogan is a consultant with CBC and helped them create a shorter version of the checklist with and for them). Questionnaires are filled out again 8-months after their first group session. People can access support as long as needed, and the average length of time people stay with their organisation is a year (I’m not sure why 8-months was the time-point at which they measure).

So what did they find from their questionnaires? Mindy says everything they had hoped to find – a robust model of support that evidences positive growth, continuing bonds and increased sense of social support, but there are no publications yet, which they are currently working on putting together.

A psychology coordinator is responsible for a site and the volunteers under it. They aim to look after their volunteers well with post-group supervision, volunteer awards, and they make a point treating them like professionals rather than ‘just volunteer helpers’. Training is a big element for them – they provide a lot of education for their volunteers even within supervision and debriefing itself, always trying to link things back to theory. And it seems there is a good retention rate of volunteers at CBC, but they do admit it’s about finding the ‘right’ people rather than just anybody to volunteer. As it happens, four of their current board members were supported by CBC as children. Now that’s a full circle right there.

Let’s talk about the dollar. CBC don’t get any government funding. They are donation and grant funded. And as they grew, so in turn did the income. CBC have a good relationship with Vitas, a national hospice organisation, who partner with them and cover the cost of their staff (6 full-timers, some part-timers). Mindy made it clear that partnering has been a vital component of their growth and expansion, and recommended the same approach for any organisation looking to scale up.

Mindy thinks they are one of the top three children bereavement support centres in the country based on the number of people they support and the fact that they have a team that look forward and see opportunities not barriers. With 95 support groups a month they support approximately 1500 people a year. Chiara shared that efficacy comes with a protocol, education, continuity and organisation (especially if multi-sited like them).

This was the most research savvy organisation I have met so far, in that they are evaluating the benefit of what they do in order to measure some of their impact. This is no doubt useful for scaling up and for getting funding.

Showing Chira our Virtual Reality campaign film

Thanks Miami, now it’s time to get back to Los Angeles for the last set of meetings.

(Jet-setting) Erin, x

Camp Erin, Sunday

Sunday at camp starts with yoga again for anyone who wants to start the day with a stretch. Then it’s breakfast time, after which the kids are invited to share on the microphone in the dining area anything that they would like their caregivers to know. Deborah and Kim make note so they can literally pass these words on later in the day. The things the kids shared were really heart-warming. For example, “Try to remember the good times as well as the bad.” They had arrived scared and were leaving with some advice for their own caregivers.

The green surrounding camp

Before caregivers are reunited with their kids, Deborah and Kim talk to them for an hour about what took place over the weekend. They’re reminded to be compassionate with their kids, and are given some tips on how to follow up on the camp weekend with them, e.g. to not ask so many direct questions about the weekend itself as soon as they hop in the car, in case the kids are feeling overwhelmed by it all. The tips that are given to the caregivers are really nice: what to expect after camp, a reminder to actively listen, some conversation prompts and how to take it all forward. Caregivers are reminded that it’s ok to have difficult conversations, and told that if they avoid them their kids avoid them. There is a way to talk about it together, even if it feels super hard to do.

Caregivers are given the chance to ask some questions before wrapping up, and they posed some really great ones, “How do I help take forward what happened over the weekend?”, as well as the sharing of some fears, “What if my child has moved on but I’m still in the same place I was when I dropped them off and I bring them down or backwards?” It’s a valid concern to have. There was a response along the lines of it being possible that seeing positive change in your kids can have a positive effect on you. However, I don’t think that can always be the case or be enough. My first thought was – these parents need a retreat of their own. Not that Camp Erin aren’t doing enough! Adults need an equivalent opportunity that helps them connect with people who have had a similar experience to them, in an environment that facilitates connection and depth more than a couple of hours at a support group.

Whilst caregivers are in the meeting campers pack their bags and do a closing activity of their own – pass the parcel – but not as we know it. Along with a little gift in each layer comes a sentiment they are invited to give to the person it reminds them of most in the room. One of the campers hands me one, bless her heart:

Then kids and caregivers reunite for the ending ceremony. Everyone forms a circle and ending sentiments are shared as well as words of encouragement to carry forward what they have learned and gained, and then it’s time for the balloon release. Each kid lets go of a balloon and the sky fills with colour. Then they say goodbyes and head home.

Up they go!
Up, up, up!

There’s a lunch for volunteers before they head off, and they are invited to share thoughts from the weekend. Nearly every single one of them did! And I believe there were over 100 volunteers there. There was a lot of love and gratitude in the room. Like one of the volunteers told me, as soon as you’ve volunteered once you just want to do it again without question.

I loved that volunteers were thanked for ‘giving their time’, rather than ‘giving up their time’, which is so often what people are told. I have to admit that it’s a phrase I use all the time with our own volunteers – thanks for giving up your time. It’s not what I want to say, nor what I mean.

With the brilliant England cabin volunteers

Volunteers leave, and it’s time for the Clinical Team’s debrief. All cabin leaders and the SKP staff come together to talk about things that went particularly well and the things they think they could improve upon. Anything that cabin leaders feel warrants following up with individual kids is passed on the SKP team and all loose ends are tied up. It’s a job very well done. And then it’s time for them all to go home for a well deserved rest.

I was truly sad to say goodbye to the SKP team. Out of all the organisations and people I have met, they have without a doubt been the most welcoming, supportive and loving. They opened their arms to me and let me get stuck in with them, making me feel like part of their team and like an old friend.

It was my first children’s’ camp experience. Given that I run an equivalent for adults, Time After Loss, it was really interesting to see the similarities and differences. I had not heard of any bereavement camps for kids in the UK – camp is not as big a part of the UK culture as it is in the USA. A quick web search led me to find a residential camp that is run for grieving children in the middle of England by Childrens Bereavement Centre. I couldn’t find any others – there may or may not be others. Either way, this is definitely something that could be spread more widely across the country for the benefit of so many more young people and families.

Who knows, maybe Camp Erin will make it over to the UK. I’d be the first to jump on-board and help.

Thank you SKP. Let’s be friends forever.

(Full hearted) Erin, x