We spoke with Devika Chowdhury, who is instrumental in the Dying Matters In Essex partnership, which supports the national campaign, Dying Matters.
Devika explains how the partnership began, grew and what it means to her and the people of Essex.
When I began in my Engagement Lead role at Farleigh Hospice, I came across the Dying Matters awareness week campaign and was immediately engaged by the concept and key messages. When I found out that the Comms Team usually led on the campaign I was a little sad, so I offered my support to the team in the hopes that I could at least be involved in the campaign. Luckily for me, the Comms Team were very busy and I took the opportunity to take it on with their support. I was given guidance to work collaboratively with other local organisations and started by reaching out to the local Clinical Commissioning Groups (CCG) and other contacts who already had positive working relationships with the hospice and things seemed to flow very organically from there.
In the beginning, my role was not all that clear, I had begun inviting people but I was unsure of what the group was or should be and in all honesty, I didn’t feel experienced enough to take the lead. I developed a good working relationship with Paul Gilham, the Engagement Manager at mid-Essex CCG and he took on that role (phew!) and I was quite happy to administrate. That meant that I arranged the meetings, invited people to attend, organised the agenda and wrote up the key points and actions from the meetings. On the occasions when Paul was unable to attend, I had the opportunity to step up, practice leading and build some confidence in that area!
Since our first Dying Matters week together in 2019, our group dynamic has blossomed. We began as a handful of organisations and today we have over 50 people on our email list. These people attend from a range of charities, community groups, public services, businesses, and individuals. Initially, our focus was solely on the mid-Essex area, as that was my remit at the hospice and no one appeared to be keen to lead on the other areas, but now we are working with other CCGs and organisations to cover the whole of Essex. This makes a lot of sense since many of the organisations in the collaborative cover the whole of Essex anyway. We have been able to get to know each other better and understand what different organisations and people can contribute to the cause, so we have a bit more of a structure now which we are hoping to formalise in the near future.
For me, this is important because life is hard enough as it is. The older I get, the more I realise that having conversations with people (about all sorts of things) is SO important, especially if the thing is scary. Having conversations can help us to feel less frightened, they can help us understand how and where to get support and it can mean that we feel a little bit less alone in our experience. And a bit more like it’s okay to be human. Our current society is still pretty concerned with how “successful” we appear to others and has some deeply unhealthy unspoken guidelines on what that looks like. I feel that it is my duty, as someone who does not fear what others think (except of course when I do!), to dismantle these outdated constructs, create space for people to learn, model what healthy conversation is and understand how it can benefit us as individuals and ultimately as a community.
Dying Matters awareness week is important because it creates a space and a platform for people to safely and legitimately talk about death, dying and bereavement. It also provides a single point of access for people to find activities and other opportunities that they are interested in. I often hear from people who want to talk about death and dying that they have been told that they are morbid or weird for being interested in having these conversations and that makes me feel quite sad and a little bit angry (we call it 'sadmad' in my home). Many people have told me that they wished that they could talk to their friends and family but feel (for a variety of reasons) that they can’t. It is essential for people to be able to speak about their feelings and experiences without fear of judgement or shame. I think it’s also key for us to practice getting it wrong, getting things wrong is a natural part of the learning process, you can’t just pick up an instrument and start playing perfectly, conversing is a skill that takes time to develop and there are so many different ways to do it. This awareness week gives us a chance to practice mastering this skill and to learn new ways of communicating with one another.
I am honestly unsure, this really depends on who turns up and participates. I’m keen for the group to remain flexible and open to new, creative and challenging ideas, but everyone has a day job too and the reality is that we are often not able to do all of the things that we dream about, at least not right now. What I’d like to see going forwards is a small kitty for us to be able to spend a little money on our events and marketing, so that we can do more of those things that we dream about. However, we are keen for the events to be free to attend as much as possible (a real conflict for us). I hope that we will gain new partners who are able and willing to share their skills and resources with us, to complement those of our current partners and who really believe in the cause. I hope that we are able to provide a space locally in Essex where people can find information and events that are of interest (or at least intrigue!) to them. I hope that our calendar of events continues to develop and becomes ever more creative, insightful and useful to those in our community who are ready to learn and understand more about death, dying and bereavement.
Death literacy is something that I am really interested in, this means being able to access knowledge and understanding of the death system, this then enables the development of skills that make it possible for individuals and communities to make informed decisions and take action. Part of this skill set is about having a common language to be able to talk about how we are feeling but also to be able to sit and listen to someone else talk about how they are feeling. Improving death literacy in Essex will support people in the community to be empowered, or armed with the tools that they need to look after one another. Getting ‘professional’ help isn’t always easy, sometimes there is a long waitlist or there are financial implications and sometimes you don’t want to talk to a stranger about it. Other benefits include; finding the experience of death and dying more peaceful or less stressful; feeling included in the decisions that are being made; an ability to find closure sooner than expected; contentment in being able to do things the way someone wanted them to be; the ability to focus on the person and make the most of the remaining time together rather than trying to understand what is happening medically or biologically; and many many more. Of course, this will not be the case for everyone and traumatic experiences will always be traumatic. Whilst we can’t stop people from dying (and I’m not convinced that’s what any of us want anyway), we can change the ways in which we respond to death as a society to be better at looking after one another.