Our trustee Brad McLean reflects on his personal experience of children’s palliative care after his son Stanley died aged 18 months in 2012.
Brad and his family were supported with grief counselling by the bereavement team from East Anglia’s Children’s Hospices (EACH), which also extended to his wider family.
He says without that support he simply cannot imagine how his family would have coped, but acknowledges that other UK families aren’t as lucky with this kind of support not freely offered everywhere in the UK.
Brad highlights how the National Vision for Children’s Palliative Care currently being developed will look to address many of the systematic issues families of children with serious illness currently face.
“In 2012 our son Stanley died at the age of 18 months in GOSH after his 3rd open heart surgery.
“The day after and once we had managed to get home, there was a knock on our door, and there stood the bereavement team from East Anglia’s Children’s Hospices (EACH).
“Until that time we had no experience with hospices, or a real understanding of what they do.
“They told us they were there to support us in any way we wanted, when we wanted, and in the place we wanted.
“Their approach was compassionate, caring and tailored specifically to our needs. In the days, weeks and months that followed, they came into our home every week to offer counselling to Debbie and me, allowing us to grieve in our own way with their support.
“At no time did they tell us what to feel or how to grieve; they simply listened, asked questions and offered ways to help us deal with our grief. Crucially, they helped us learn to support each other.
“This help extended to wider members of our family with Stanley’s grandparents given the opportunity to join in on group bereavement counselling, as not only had they lost a grandson, but they were grieving for us as well.
“Now, some 14 years later, we still join the annual memory days at EACH, an opportunity to get together with other bereaved families, make memories alongside Stanley’s brothers, and remember our beautiful baby boy.
“Children’s Hospices play such an important part in the lives of families of children with life limiting conditions, and those that sadly die.
“What many do not realise is this support does not only extend to the child, but also to the wider family.
“This support is not freely offered anywhere else and looking back I simply cannot imagine how we could have coped without it.
“For other children and families that need or will need these services in the future they currently face a disjointed and inconsistent offering which is unfair, and frankly not good enough.
“Where you live should not dictate the service you receive, nor should a family dealing with incredible challenges have to wait one second longer than they need to access high quality palliative care.
“The National Vision for Children’s Palliative Care sets out to define what high quality care should look like for babies, young children and their families.
“It looks to address the inequality and postcode lottery, the serious lack of statutory funding, the evolving and complex needs for care, and bringing together best practice and collaboration across the nation.
“My family received incredible support from EACH which we are eternally thankful for, it is now time that every family no matter where you live receives the same.”
Find out more about the National Vision for Children’s Palliative Care.
