Each year organisations across the UK mark Dying Matters Awareness Week – a campaign that aims to open up what can often be a taboo conversation about something that affects all of us.

In support of the Hospice UK campaign, Bluebell Wood Children Hospice’s Director of Care Susan Wood explains the role Bluebell Wood plays in supporting families who face the devastating reality of saying goodbye to a child.

Susan joined Bluebell Wood in 2018 after a long and varied career in the NHS. In one of her first posts  after qualifying as a nurse in 1989, Susan helped tend to the numerous casualties at the infamous 1989 Hillsborough Disaster, and has since worked on children’s wards, in the community, in clinical care as well as overseeing major transformational change in governance and management.

When the opportunity at Bluebell Wood arose in 2018, it was the perfect chance to get back to her passion for working closely with children and families.

This year’s theme for Dying Matters Awareness Week is ‘being in a good place to die’, something that’s at the heart of what Bluebell Wood Children’s Hospice does for so many local families.

“Every child and family should be fully supported to be able to die in the place of their choice, whether that be at home, in hospital, or at our hospice,” said Susan.

“At Bluebell Wood we make sure the child and family’s needs are fully met. At the hospice itself we’re able to accommodate the whole family, so they can all be together, for however long that may be. Families tell us that the hospice really does feel like a home from home; it gives them the time and space to be able to focus on their child and family, while we take care of everything else.

“Some parents and carers choose for their child to die at home and Bluebell Wood has an experienced team of staff who provide support and care in families’ homes. We also provide a 24/7 on-call service, so an experienced nurse is always available to answer questions or go out to visit a child in their home.

“Families have told us how much this all means to them; to have that reassurance that someone is on hand at all times to provide a listening ear and answer any questions they may have.”

Susan says it’s very important that people feel able to have candid conversations about how and where they want their loved ones to die.

“It’s vital that professionals have open and honest conversations with children and families, giving them the information they need in a way that they can understand, so families can be supported in their choices and goals surrounding quality of life, end of life care and beyond.

“All conversations should be handled sensitively, and the pace of discussion should always be led by the family. This allows the child and family to feel empowered in making decisions about their care, wishes and ambitions.

“In terms of opening up the conversation about death and dying more generally, things are changing for the better – but progress is slow. So many situations are unfortunately avoided and opportunities missed.

“If people are supported through these difficult discussions, like we do at Bluebell Wood, it can reduce fear and anxiety, dispel myths and empower families to make informed decisions about how they want to say goodbye to loved ones.

“These important conversations help the family to achieve the best possible quality of life under the circumstances, while making special memories they’ll always carry with them.”

At Bluebell Wood, fulfilling any final wishes children and families may have is a fundamental part of this.

“It might be the wish of a child to have their beloved family pet come to visit them in the hospice, or see their school friend to say goodbye,” added Susan.

“One young girl we cared for at home wanted to have one last Christmas day before she died. We knew that she didn’t have long to live so everyone pulled together to make her wish come true.

“Can you imagine her delight one October morning to open the curtains to see the garden covered in snow (courtesy of a snow machine) along with a fully decorated Christmas tree, special visits from her favourite Disney characters, carol singers, a feast of a family Christmas dinner and most importantly – a visit from Santa himself to deliver lots of presents. Memories like these are precious and irreplaceable.

“To be able to support a child or young person and their family through the most difficult times they’ll ever face – to know that we’ve been able to make a journey we sadly can’t change that bit easier –  is at the heart of what we do at Bluebell Wood.

“A journey where the family don’t feel alone, safe in the knowledge that whatever time day or night there is someone who they can reach out to – it might be a detailed discussion or something as simple as a listening ear, a cup of tea or a squeeze of a hand.

“Our role at the hospice is one of great privilege - and every day I’m humbled and in awe in the strength and courageousness shown by each and every family in our care.”