Dying Matters Awareness Week
Children’s hospice at home charity, Jessie May, is inviting the Bristol community to get talking about death, dying, and bereavement during this year’s Dying Matters Awareness Week (4–10 May 2026).
Every year, people around the UK use Dying Matters Awareness Week, led by Hospice UK, as a moment to encourage all communities to get talking in whatever way, shape or form works for them.
Death, dying and bereavement affect us all. Yet 27% of people find it hard to talk about death with family or friends, and 30% bottle their feelings up.* If we don’t talk about death, dying and bereavement, it can be harder to cope when we experience it.
The mission of Dying Matters is to break down the stigma and taboo of talking about death and dying. But sometimes, it’s hard to know where to start.
This Dying Matters Awareness Week focuses on the importance of conversations about death and dying – with family, friends, employers, and anyone in your life – helping people to get the conversation started.
How Jessie May Supports Families Through Grief
Jessie May provides personalised bereavement support for families whose children have died, offering time, space and compassionate listening in whatever way feels right for them – at home, on a walk, or over a coffee. This flexible, gentle approach helps parents talk openly about their child and navigate life after loss at their own pace.
Alongside one‑to‑one support, Jessie May also offers informal coffee mornings, relaxation days and community‑based meet‑ups, creating safe spaces where conversations about grief can happen naturally and without pressure.
One family who has benefitted from this support is Lisa and Julian, whose son Sacha was cared for by Jessie May.
Sacha was born with an exceptionally rare genetic condition called NEMO, a combination of immunodeficiency, osteopetrosis, ectodermal dysplasia and lymphoedema – a condition so rare that only around 30 people worldwide have ever been diagnosed, and Sacha was the only surviving child with his variant. Despite enduring hundreds of procedures and spending 572 days in hospital, he remained a happy, gentle and remarkably brave little boy.
Sacha sadly died on 5 June 2024 after contracting an infection, leaving a lasting impression on everyone who knew him through his courage, kindness and the love he shared so freely.
Talking about Sacha – his life, his personality, and the love they have for him, has been an important part of Lisa and Julian’s grief journey. As Lisa explains:
“My way of feeling close to Sacha is to keep sharing him with people and to talk about him. But everyone’s way is different – there is no right or wrong.”
Michelle Green, Bereavement Lead at Jessie May, said: “It has been an honour to provide support to Lisa and Julian in their grief and to get to know Sacha through the love and memories that they have kindly entrusted to me.”
Lisa’s experience reflects something Jessie May sees time and again: that being able to say a child’s name, share memories, and talk openly can be incredibly powerful in grief.
Read Sacha’s full story here – Sacha’s Story 
– Jessie May.
Keeping the Conversation Going
Dying Matters Awareness Week is a reminder that we don’t need to have all the answers – we just need to be willing to start the conversation.
Jessie May will continue creating spaces where families feel safe to talk, reflect and be heard -not just this week, but every week of the year.
Because sometimes, the most meaningful support begins with a simple conversation.
Read more charity news here https://directlocalbristol.co.uk/charity-news
