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Good Death, Good Grief, Good Dying

Wednesday 9 November 2016

Good death, good grief, good dying – for many of us it is difficult to imagine that there can be anything good in death. It is a time of loss, mourning and uncertainty and if the death is that of a child then the grief, anger and emotions are all the greater.

In my role as family support manager for Children’s Hospice Association Scotland (CHAS), I support families whose child, or children, have a life-shortening condition which sadly means they will die young. We support the child and their family, helping them to have fun and normal family times, as well as some much-needed rest. Our two hospices, Rachel House in Kinross and Robin House in Balloch, are places where amazing memories are created, with noise, laughter, games, colour and parties filling the buildings with an atmosphere of warmth, happiness and home.

However there is another equally important aspect to our care: we are committed to ensuring every child’s death is as precious as their life. We support the child and the family to determine what death - when it comes - should look like, as well as their funeral and ongoing aftercare for the family. It is vital they have a choice and voice in a situation that they have little control over, and that it represents who they are as a family.

Our end-of-life and bereavement care extends beyond emotional support, because, unfortunately, there are many practical and financial pressures that can further impact on families at this time. If we can support families with some of that, then we will. The average cost for a funeral in Scotland is between £3,500 to £4,500 - and this is for a simple funeral. Many of the families we support are not in a position to be able to meet these costs for various reasons. And one is that for years either one or both of the parents have been full-time carers for their child and already have limited finances. To have substantial funeral costs added to this is unfair and unjust

There is a myth that a child under 16’s funeral is free. However we know that this is not the case. At present the Department of Work and Pensions (DWP) can provide some funding towards the funeral costs of children under the age of 16, but an application may take up to seven weeks to process which puts a family in debt immediately. The choice of a burial or cremation is dictated by cost as DWP goes nowhere near covering the cost of a burial. Funerals are held up as families aren't able to pay a deposit, or are waiting for charity applications to come through. Parents are asking to borrow money from friends and family to cover the cost of a deposit. We all work very hard to create special precious memories and at the last moment the family face the harsh reality of funeral poverty.

We regularly contact other charities to secure funding for families. But families need to apply for this - at a time when they should be focusing on their emotional needs - and again, this takes weeks and we are never sure if the application is successful. 90% of bereaved families I have supported at CHAS did need financial support and this is not unusual.

The practical and financial support offered to families needs to be improved. So often the parent feels devastated by the death of their child and the fear of not being able to provide them with the funeral of their choice is an unnecessary additional strain.

I’m encouraged that the Scottish Government is looking at how we can better support bereaved families and I’d like to see this develop to the provision of free funeral care for young people up to the age of 21; easy access and sign-posting to funeral services and charities that provide financial support; improved and quicker application processes for DWP; and other grants and set costs across all local authorities for a child’s burial.

Better emotional and practical support will not lessen the loss or the pain we feel when someone we love dies, but it will ease some of the additional burdens and it is an acknowledgement that as a country we care about death and dying.

Corinna Robertson is Family Support Manager for CHAS, Scotland’s national children’s hospice.

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